Despite living with Cerebral Palsy, Drew Dees does not let it stop him from pursuing his dreams. His upbringing consisted of a simple principle that has carried him throughout life — anything can be accomplished with effort. Drew is currently dedicating a lot of time and effort to pursuing a career as a Multimedia Journalist, which has been his dream job as long as he can remember. Drew wants to inspire and make a difference in this world through his work, and another way he defines himself is by his work as an advocate for those with special needs. The ability to help others is a gift, and he is glad to be able to serve his community in this way.

https://open.spotify.com/episode/3LMpjgFnpTcOSaRntPfWia

SPEAKERS: Drew Dees, Tony Delisle

Tony Delisle  00:00

So a couple quotes come to mind from our guest today, Drew Dees. One of them his dreams don’t work unless you do. And that’s from John Maxwell, guru on leadership, because Drew has a phenomenal work ethic. He’s the first one to wheel in, in the morning, last one to wheel out. And he’s super resilient, has lots of grit and determination. And it’s just amazing. But he also has a clear vision and purpose and that he’s following. And that’s something for all of us to learn about, you know, how do we create our purpose? And then how do we execute on achieving that purpose, a quote comes to mind where it says, you know, a vision without work, will only be a dream. work without having a clear vision is just drudgery. But having a vision and the work to back it up. Well, that’s the change that we need in this world, and within all of us, as well. And he really brings that to life. Ultimately, he really amplifies that and goes beyond and really has a message that we all need to have unity through disability, something that we’re really trying to promote this perspective with people on, and he talks about the importance of this, this collective goodwill that we can give to one another, especially in these times and how important it is that Above all, I think is one of the most important messages that he brings to bear and shares with his on this podcast. I look forward to having you hear him and letting us know what you think about it. Enjoy the podcast. Welcome back to another edition of The Independent Life Podcast. I am so excited today to have on Drew Dees, he has the name of a superhero or like a Hollywood actor or something I don’t know Rockstar perhaps. Drew Dees You don’t even have to work on your handle, you already have an amazing one, you kind of back your name up, your story’s incredible, you’re living your dream, your purpose and have so much to offer. We first met because I got wind of you and your your name is out there to be a speaker for our high school high tech event. And you were able to come along and do some of that. And quickly you and I got partnered up on a few presentations at the University of Florida to a few different venues in which you and I got to co-present and have conversations with people. You and I had a time where the mechanical engineering department was looking to do a more sophisticated grabber for people who had you know, hand mobility issues and you participated in that was it amazing, like high tech, 5g grabber? I don’t know it was amazing. And so you and I got to you know, cars pass. And one thing I gotta say about you drew is that you have this really magnetic energy about you, you have a can do attitude, it seems very growth mindset, very positive. Like all these things, you know, I really want to acknowledge you for just taking the time to come and talk to us and share your perspectives. So in that, introduce yourself to people. Tell us a little bit about yourself.

Drew Dees  03:25

Yeah, absolutely. Thanks so much, Tony, to you and listener for having me today, I greatly appreciate it. That’s kind of thought that’s what I thought about love. But my name is Drew Dees. I am currently a senior, wildly crazily enough a senior that’s strange to say, I’ll be graduating this summer with a bachelor’s degree in telecommunications news. So I hope to someday be on your TV, and become your local anchor or put it but I also have a passion for advocating for people with disabilities and and also, you know, and as well as higher education. So who knows, well end up always say, I’ll end up wherever God wants me to be. I, you know, I’m trying to be an anchor point here, but and I’m also open minded, open to whatever wherever He leads me and follow so.

Tony Delisle  04:24

So so where were you born and raised Drew?

Drew Dees  04:27

Sure. So one race in Trenton, Florida. So it’s a small town about 45 minutes east of Gainesville. So it’s a one stoplight town and I always tell people, if you blink, you miss it. It’s not there with all the cows and the heat goes. So that’s the kind of stuff that we saw over time. So yeah, so I went to Trenton High School, graduated in 2014. Then I went to Santa Fe College. Then I transferred in the fall of 2017 here to the University of Florida.

Tony Delisle  05:01

Wow, sort of grew up in a rural area. And I’ve been through Trenton and lovely area, nice Southern, you know, it’s good feel there. To go from there to Gainesville to Santa Fe College and the University of Florida as a senior, you know, what is it that has allowed you to do this and to be independent as you are, I mean, you’re living a very independent type lifestyle. And so what are some of the things that you have needed to have in place in order to be where you are today?

Drew Dees  05:32

I think first and foremost, I want to give a shout out to my tremendous a wonderful parents. I really, truly believe that it all starts there, and the good upbringing. And if you have parents that believe in you, and your mission, and believe that you can do whatever you set your mind to, you’re gonna, you’re gonna thrive from there. That’s the principle that I’ve always lived my life upon, based upon Can’t was not a word in our house, right? You gotta get out laundry you’re gonna get in, then you’re gonna get in there and do everything everyone else does, it just might take you a little either way, you just have to work a little harder than most. So credit my, my parents, first and foremost, for where I am today, but there’s different, I’ve had a great support system beyond that as well, with personal care assistants and resources at Santa Fe College and University of Florida disability resource center. Here at the University Florida especially I cannot speak highly enough about them. They’re next to none. I know, here coming to the University of Florida for me, with about 50,000 students. It’s kind of nerve racking, right? I say that at Santa Fe College you have that smaller, more intimate classroom setting. And it’s like, All right, now I’m really a fish in a big old pond here. But I’m actually I was quite the opposite. The University of Florida has done everything in anything to take me under their wing. And they’ve done lots of great things for me, as well as many other students across campus. And, you know, I always partner with them as well, any way I can, any way that I can give back to the community, for people with disabilities. That’s what I do.

Tony Delisle  07:19

And Drew, you bring to bear one of the most important things that we do you need is that social support. And it sounds like you won the cosmic lottery and having the parents that you have right there to be supportive of you. And you said, beyond that, the social network and support and that’s one of the things we want to drive home to people is that we all need each other. We all belong people with disabilities, like yourself bring so much to the table. And I think one of your quotes was is like, if everybody was like, it would be so boring. like normal is whatever that is. Like, what? Yeah. Yeah, who wants to be normal? So ever done, right? But anyways, you know, you see you bring that, you know, mindset. And I think, you know, that can do attitude, like you said, from your parents, you know, so my question to you is what led you to wanting to do like reporting, multimedia, you want to be on everybody’s TV, this seemed to have been part of what is drawn you through your life experience. So walk me through how that came about? How did you land on that? How did you find that as to be your purpose?

Drew Dees  08:25

Sure. So growing up, I’ve always loved to be in the limelight be in the spotlight. Anywhere, there’s a microphone and a stage. My mom always said she could find me there. So for me, that’s the first thing but first and foremost, with the ongoing debate about disability representation in the in the media, right? How often do we see true representation of disability within the media? We don’t and we definitely don’t see a reporter or an anchor with a physical disability, you know, on TV, and it’s 2020. 2020 almost 2021 right? So I feel that it’s time for someone to change that. So I hope that I can be the one to be the Trailblazer to change that. Like I said, we do have some representation in the media right now. But like, far too often that’s not true representation. They always bring in actors to portray people with disabilities. Why do you do that when you can just have you know personal a true person with a disability but lives in a portary that part or play that part better than anyone else?

Tony Delisle  09:39

Yes. Wow, true. And well I tell you, I think you have the it factor, that juice some people say to do that, and so I have already gotten your autograph I think three years ago and I know it’s gonna just like appreciate over time. That is amazing. You know, as you have with this purpose, really pulled yourself, you know, into the where you are today, all this, you know, independence that you’ve had to work, you know, to have in your life to be able to achieve these goals, what would you say is some of the things that you would tell people with disabilities that if they want to go on a similar trajectory as you, and that could be school, and all these other kinds of things? What kind of message would you have to somebody? Because this is pretty aspirational, and requires a purpose, you found your purpose? What would you tell people who are like actively, like looking to take it to the next level? And again, it could be school, it could be, you know, work, it could be relationships, it could be their health, you know, but wanting to take it to the next level? Like you’re, you’re taking yourself to the next level by finding your why. So what can you tell those of us who have disabilities? How can we go on a similar trajectory as Drew Dees?

Drew Dees  10:51

I would say, believe it or not, everyone has their down days, even me. But I would say first and foremost, do not give up. I’m always like, say, Do not stop at the first no. If I were to stop at the first No, I would, I would not be sitting here in my dorm room here, the University of Florida, about to graduate, Tony, talking to you today. So it’s really it really takes that grit and determination. Yeah, we may get rejected, um, to start off and just to go on a little bit, I myself, you know, I’m thriving, I’m doing the best I can. But I myself along the way, I’ve always faced rejections, specifically, within the broadcast industry in the media field, it’s been hard to get those internships and things and to get those employers to look beyond the barriers, look beyond and still continue to see me as an asset to the organization. I’ve been denied for a particular internship three times, three times I was denied. So that, and that they told me the media field, the media industry, its just not for me. But I kept persistent and, you know, God, God said, God puts people in places people in your life are the right places, other times, and I didn’t give up, I still went to those career fairs every year, here at the College of Journalism and Communications. And finally, I had a company take a chance on me. And not only wasn’t a company, a media company, but it was a company outside of Gainesville, okay, it was a company all the way in Orlando, West 2 news. Perfect. Enough about the positive experiences I had done there in Orlando. But had I not faced that rejection, had I gotten a local internship, I would have just remained here, inside my bubble here in Gainesville, Florida. And I wouldn’t have the network expansion that I have now. The resources that I have in other areas.

Tony Delisle  13:09

So Drew, you said a lot there. And kind of going a little deep on on some of those things. Because how do we deal with these setbacks like the you experience so we’re in this place of rejection, I want to put up air quotes when I say failure, because through this podcast, we’re gonna really talk about what quote unquote, failure is, basically, an opportunity to learn, but in the, in the times of going through these, you know, setbacks, or, you know, things didn’t go the way we wanted them to, and we worked really hard and did all the things in our power to, we got to be in that space. How do you take yourself out of that space? How do you base those times, so that you can actually grow from them? versus this, like, keeping you down? Or just saying, you know what, like you said, You were right up to that edge. You said, like, this might not be for me. So what taught you back off that edge? How do you get off that edge?

Drew Dees  13:59

I think for me, I, like you said I was almost on that cliff almost ready to jump. And I think for me, I really had to take a step back. Re-evaluate, keep pushing, because I’m a can do person, right? You’re not gonna tell me no. And I said, you know, if this is meant to be, it will all work out. Not in my timing now, in God’s time. And for me, personally, I really rely on my faith. And not only my faith, but the people around me, the people who I choose to surround myself, the people who have may have gone through a similar experience as me. So that can help me and coach me and get me to where I need to be along the way.

Tony Delisle  14:48

So you talked about a couple of values there that you’ve kind of have taken away from those challenges and to get to where you’re at today. grit and perseverance, grit and perseverance. Could you talk a little bit about what that means to you and how it’s been used by you to face and overcome the challenges and how you put that into practice?

Drew Dees  15:10

I think those two things. Without those, no one, no one succeeds, right. But I think people with disabilities as a whole, I think each and every one of us have a little bit more grit, and a little bit more perseverance than everyone else. Because we face challenges we face obstacles every day, right? But what we learn through those challenges, and what we learned through that perseverance, is we learn how to adapt to changes. Take COVID for instance, you know, everyone’s world has been turned upside down. But for people with disabilities, that’s nothing new. Because every day, we’ll we’ll be on the straight and narrow. And life will take a sharp pain, but you know, what you do, you get back up, dust yourself off, and you begin again, and something gone down the road of COVID, something that’s been very striking to me, you know, in the times of COVID, we have people with disabilities, we would like to have certain accommodations and things put in place, right. And when we asked for those things, well, we were told, That’s not possible. But all of a sudden, we have pandemic like COVID-19. And it changes for everyone. So in the snap of a finger, there’s the accomodations that we’ve been fighting for, for many years. So that’s my most interesting thing. COVID is how the world just suddenly Oh! Let’s make it better. Well, you know, and that’s thing. Yeah, we need accommodations. But at the end of the day, it’s not just about us, does it help us? Sure. But to make this world more universally designed, is better for all, not just people with disabilities.

Tony Delisle  17:08

Yeah, so I like how you tied that thread between grit, perseverance, and adaptability, you know, on a day in and day out basis, going through that, it’s like doing reps, you get stronger from it. And when something like you said, the COVID pandemic comes along those same mechanics, it just might be new to everybody, but the same mechanics of having to deal with the challenge, and sometimes the fear or uncertainty at the beginning and processing it, and then, you know, kind of the reflex of the mechanics go in is like, okay, we faced this before, I’ve done this over here. So I can do this here. And I can, you know, figure ways around above and beyond and over and under whatever way that that it is, and, you know, I’ll do everything in our power, let go of the things I can’t control. And like you said, we’ll be put in the right place at the right time when the students ready, the teacher appears. And so, you know, as you lead us through that, you know, kind of thread here. You know, to me, one of the things that I find very interesting in what you said, that you tie into now is universal design. And that’s good for everybody. Could you explain to us what universal design means and why that is so very important, and that everyone needs to understand what it’s all about.

Drew Dees  18:26

Universal Design is simply put, access for all eliminating barriers, all kinds for all people. In a recent interview that I had, I said, you know, universal at some point in your life, you’re going to experience having a disability, whether you’ve torn your leg, or you you’ve torn your ACL on crutches now, or whether you like me and yourself was long term disability, long term disability, you’re going to experience having a disability so at some point, universal design is going to be beneficial to everyone. So I think that it’s really important. Um, for instance, I live at Cypress Hall, which is only one of two completely ADA accessible dorms in the nation. Let me say that again, one of two. We are about to head into 2021 and please tell me, please tell me why they are lonely till universal design completely accessible at dorms in the country? That’s quite shocking. And that’s quite limiting to people with disabilities such as myself, who want to go to school and get their education because you know what, a lot of them without facilities such as Cypress Hall that has you know, the the main bar is we have an IDA that controls the by the doors A walk in shower a foyer lift, that will take you from the bed to the shower, right. Only one of two facilities in the nation have that so these students aren’t able to get into these institutions or how these things, they might not get the chance to go to college, they may want to, but because of barriers and obstacles, they can’t. So I truly believe that it’s time that we change that not only not only in the education system, but I feel like universal design needs to extend beyond the walls of the University of Florida, and beyond the walls of Illinois, because you know, what, as scary as it is, I have X amount of months. And this place, Cypress has been great, and has enhanced my life in ways that I wouldn’t have never thought possible. But in six or seven months, I’m gonna walk out these doors, and that’s no longer gonna be your reality. So I, that’s my big push, you know, cuz I’ve seen what universal design can do, what kind of benefits people can have from it. So it’s really my big push to get that out into the communities, beyond the walls of Cypress Hall and beyond the walls of the University of Florida, because we deserve to live long and prosperous lifves, just as anyone else.

Tony Delisle  21:53

Couldn’t be well, better said there Drew, you lay out so many important issues that are here, and many of which are at an academic, you know, institution level. And I want to tie that to the founder of the independent living movement, and Ed Roberts, and, you know, is largely due to his efforts to get into Berkeley. And this was long before disability resource centers or other kinds of policies that are on the book to make sure that these this access is there. And so I think these institutions are so very important in terms of pushing the accommodations that are needed, the voice of for people to have these kind of discussions, certainly a place and area for the research to understand what the data can tell us. And so I really appreciate that, you know, these institutions exist, and could be really good beds of opportunity for people with disabilities truly, you know, be one of the, you know, fronts that helps to advance the cause. And so, you know, I really am thankful for that. You know, and then you talk about some really important issues within that, and you talk about COVID. And now you’re talking about, like life after college. And so what are some of the issue areas that you’re going to face after you graduate from the University? And, and now you’re out. What are some of the access issues or other kinds of things out there that, you know, ever concern to you in terms of living independently at the next level.

Drew Dees  23:18

So I love to tell the story, this gets me good opportunity. Prior to coming to Cypress Hall, Mike came to Cypress Hall in 2018, I believe. And I lived in an apartment setting here in Gainesville for three years prior to coming to living on campus. So I did it backwards. And one of the biggest things for me is prior to coming, living on campus and a fully, completely ADA accessible, completely ADA compliant, excuse me, accessible dorm, like Cypress, I recall in and out of the bathroom. Now let’s picture that. That’s completely safe, right? No, it’s not safe at all. So that’s one of the big barriers for me, and I’m already starting to hit the ground running and look for different places to live. And I really started ground running really hard next month, because the sooner the better. But I’ve come to find we that have accessible housing that’s that’s perfect foru us and was not affordable, or we have affordable housing that’s not quiet accessible. So that’s one of the big barriers and I think two things on that can change that. One. It’s been 30 years. Since the ADA has been passed. I believe it’s time to touch that baby, tweak it up and tighten up the guidelines a little bit because there’s a lot of apartment complexes in a lot of places in Gainesville and beyond I’m sure that I’m able to get away with Oh, as long as they’re able to get in side of the building or as long as they’re able to have the light switches of the sites, were compliant. There’s a difference between being compliant and accessible. And the second thing that can help change that is to let people with disabilities have a seat at the table, during these design processes. It amazes me there’s so much we’re in a college town, right? There’s so many apartments like, it’s booming, there’s so many new apartment complexes being built that time and time again, I’m seeing Oh, there’s a tub. Oh, there’s a tub. Why not take you know, just like the law with ADA handicap parking spot, you know, there’s supposed to be one for every 25 or something like that. So why not do something of that nature in apartment complexes, like for however so many have that be accessible for people with disabilities.

Tony Delisle  26:10

So I hear you say housing is going to be a major issue after your graduate. Accessible, affordable, I would also add safe housing, can we get that trifecta for people, you know, I mean, that’s an important thing. And there’s so much there in that issue. And in this podcast, we look to explore this issue area of accessible, affordable and safe housing for people with disabilities and you know, so I can really, you know, say drew that you know, your, you know, we’d love to have you back and talk about you know, your journey through this, you know, as well as well. And definitely one of the biggest issues outside of COVID. Before COVID I would say around our area is affordable, and certainly accessible housing. So that’s something I think everyone in Florida and even the nation is facing, so you nailed a big one right there. So Drew I want to get your take on you know, some what to do is here are some scenarios that I think a lot of people while in the academic system kind of face if they have a disability. Especially a student at a university that has a disability, perhaps it’s a learning disability, which happens to be the one of the most common or it could be whatever disability it may be, they totally qualify for resources at the Disability Resource Center that you find so fantastic to get the accommodations they need, but for whatever reason, they’re really not accessing or utilizing it, so maybe they have gone to the DRC but they’re, you know, not giving the accommodation letters to the professor. And so either one you know, not accessing, you know, the services that are out there, or if you do really kind of not utilizing them, and they’re apprehensive and doing it largely perhaps because of stigma. I’ve run across a lot of students in my experience here at the University of Florida that just weren’t getting the resources they needed because of stigma surrounding that you know, some students I was working with learning disabilities we’re very afraid of what their friends would think their friends you know, thinking that they were just copying a disability to get extra time you do have in many schools of this nature are very competitive and so whatever competitive advantage and so they were like facing all these different really internal struggles for whatever reasons. I remember veterans, working with some veterans there at the university. Veteran students are a little older and you know, even if they haven’t, they had interesting perspectives on accessing and utilizing services too. And so what would you tell that you know, student who you know, maybe holding back on, you know, accessing or utilizing those services due to stigma or whatever reason it may be?

Drew Dees  28:43

First and foremost, I believe we, we’ve got to put our pride aside, because we’ve all we’ve all been myself, we all think we’re like, No, no, we don’t need them. But first and foremost, you got to put your pride aside and get the help that you need. Because you know what, more often than not once you get that little bit of extra help that you need a little extra push, you will see you may be getting by at the University of Florida. Well, the university like the University of Florida, but you may see a lot of positive growth because of that one small minute change because that one small, minute accommodation. And in my eyes, we all need accommodations in some form or fashion. And then in the day. So I will say just Yep, you you may face some backlash on the way because don’t we all? We all have friends that are like hey, you can extra time. I wish I had that. But I have to tell people, Oh, you want the accommodation?  Would you like the barriers that come with it as well? You know if you want if you want the slice the cake might not take the whole cake with it. Um, but uh, yeah, I would say just, you know, break that stigma, there’s gonna be people out there that are gonna, they’re gonna envy you. But ultimately, deep down, you know what you need. And you know that, whether you’re cheating the system or whether or not. I’ll be honest, I have accommodations here at the University of Florida. Sometimes I use it and sometimes I don’t, and I always go into the semester as, Drew, you have these accommodations and they’re there if you need them, but always go in there, headstrong, and I’m always up front with my professors to like, Hey, I have these accommodations, but don’t treat me any differently than any other student. But however, along the way, if I need to utilize them, I will reach out to you and let you know and, and that’s worked well, for me. Proceeding that way.

Tony Delisle  30:57

So I love how you say put your pride aside. Because maybe that is in play, they’re worried about what other people think of them. And that always struck me, with my experience in working at the VA with sometimes veteran students and who are very brave. And obviously putting their lives on the line or they’re sacrificing so much for us and bravery, I can’t even come close to understanding touching in my life. And to see, you know, how stigma sometimes prevents them from reaching out or getting those kinds of things like the utilization rate of service connected disabilities for veterans, is very low compared to the percentage of veterans that have disabilities. So figuring out how we can really overcome these stigmas are very important to not just this population, but many populations that really are holding back in from getting those things and almost would rather eat the barrier, like you’re saying, and go through the hardships and a lot of reasons for that. And yeah, I think you said like, pride is one of them, and to eat our own ego and pride sometimes, but as part of it, it’s a hard pill to swallow. But man, humility is a really good thing I found in my life, you also got to be vulnerable. And that takes courage. And certainly, people like veterans certainly know what that’s all about. So, you know, so I’m going to give you another scenario, and this is one I came across, and come up very often, you know, where parents who have, you know, students or children, you know, with disabilities, you know, perhaps like early on in elementary, especially, are coming to terms with the fact that their child has a disability, they haven’t necessarily applied for, you know, these kind of services to get accommodations and go through the process of the documentation and everything else out there like that. And, again, are hesitant to do to, yeah, the stigma, there was an experience that I had at a disability awareness training that we were giving to, like, 300, you know, county employees, and this very courageous woman who was black, stood up and talked about how her nine year old boy, you know, has autism. And they’re finding this out now, and it’s a new diagnosis. And she was struggling with, you know, getting services for him through the school, because she just didn’t want to put another label on a young black male, you know, kid, I mean, like this, man, you know, so there’s something to that I like, putting a label on people and this and the other. And yet, it’s like, the hope is to get the services you need. It’s this conundrum. I don’t have any answers for it. But I don’t know, what would you tell your parents that are, you know, kind of struggling and grappling with some of those kind of harder, you know, choices that aren’t just so clear?

Drew Dees  33:39

I would say, it’s gonna be hard, it’s gonna be tough, you know, you’re gonna be like, wow, there’s something wrong with my kid. Wow. What have I done? Or Wow, what could I have done differently? Maybe. So, I’m gonna I’m gonna say to anyone listening, that there’s nothing wrong with your child. And, you know, I would hope that the, you would explain that to them as well. There’s nothing wrong with you, you just, you just need a little extra help. And we all need a little extra help. At some point in our lives. Yeah. It may not be disability, but we’ve all we’ve all needed assistance in one area. We’re human, right? We’re not going to be strong student and everything. So I think just just seeing that there’s nothing wrong with putting a quote unquote, “label” on it. Be proud of it. Teach them to be proud of it and be proud of that identity. Be proud of who your kid is, you know, that that is just a small part, a small fraction of who they are as a person. That is not the whole individual, and it certainly does not define them.

Tony Delisle  35:21

love what you say about be proud of it. So, you know, we’re a marginalized group and it seems like there’s a, you know, many groups are really an embracing of who they are. And like, we want to stand under this tent and and, you know who wants to stand out of the 10 of disability who wants to come in that let’s come, let’s make this 10 as wide as we can and make it somewhere where they like you want to be the, you know, face a disability want to be out there, and don’t see it as a, you know, deficit thing, but rather as a strength, like you’ve articulated many values that disabilities you taught, you hear? And so how can we widen that tent? How can we how can we get more people, because because I was embarrassed about my disability for a very long time, I wouldn’t admit it to a lot of people. But it was very evident after I was bumping into walls and, you know, holding paper up to my, you know, this close to me, you know, trying to read and all this other kind of stuff. And so I listened on, you know, and to this day, you know, I get it, you know, sometimes shy about it. And so how do we get people to, to, like, come together and be proud of having a disability or have disability? How do we do that?

Drew Dees  36:28

I think it all starts with education. And I always say that it’s never too soon to educate people, about people with disabilities. Or it may not even have to be disability, it could be gender, it could be race. It can be sexuality, just different things in general. As a motivational speaker, myself, I’ve traveled to many different venues and gave many different talks. And recently, I was so excited, because I had my first in-person. I’ve met at a local middle school here in Gainesville for the first time in months, since COVID. And it was actually at the Rock School, and I was very proud of what this specific teacher was doing, because there was a group of middle school students. But this teacher at the Rock School had all his students research about disability. Research about someone, a famous person with a disability or someone within your community, who is striving and achieving, and overcoming barriers and obstacles with a disability. And I was so honored and privileged that I had a little girl write a whole five-page paper me, right, a whole research report. And when I came and met, so check also meet me in person, and she was so eager to show me her paper to show me her work that she had done on the back wall, and I just read it and it’s great. We’re in middle… this is a middle school kid with a five page paper. Here I am at the University of Florida, a five page paper. And this is complete with citations. University of Florida college kid and I’m  complaining about something a middle school student has done. I just kind of took a moment, right, and I let it all sink in. And I had a couple tears that flew down my face cuz I’m like, wow, like…

Tony Delisle  38:30

I got goosebumps, as you’re saying that.

Drew Dees  38:32

… the impact you are making on someone’s life. And that’s when you know, I’ve always said this, I believe that others get I was given my struggles to give me an even greater purpose in life, right? I was given my struggles, so that I can make a difference on the life of others. Because I can tell you, if I didn’t have my disability, I would be some old Joe Schmo on the street. But I’ve had so many so many incredible opportunities, because I’ve embraced my disability, because my family has embraced my disability. And because I’m proud of it, and I see it as an advantage rather than a disadvantage.

Tony Delisle  39:14

Amen. So Drew, tell me what you would want people to know who do not have disabilities, about people with disabilities.

Drew Dees  39:27

Sure, point blank and simple. We are no different from you. We we want to live those strong and prosperous lives just as you all have. We want to have a family we want to get our education, we want to get married, we want to have kids, we want to have a house. We’re no different from you. We just might have to.. it might take us a little longer to accomplish things or you might have to work a little harder. But I can tell you what I’m so thankful again. I’m so thankful for disability, because we’re able to see life from a different perspective, through a different lens, we’re able to be more humble, because we’ve had the work for what we have today. So I would just, you know, first and foremost, at the end of the day, get the time, take the time, to know someone, get to know someone with a disability, get to know even disability, get to know someone, that’s different from you, educate yourself. And you know, it’d be amazing and shocking what you may want from an individual.

Tony Delisle  40:36

I think everybody can teach one another. I love how you talk about how we all just… go ahead.

Drew Dees  40:42

Teach one another. And the end of the day, I just on my heart to say this, you cannot teach one another. And we can all learn to love one another. We are in a world right now that is so divided. Even crazy. But imagine what one one random act of kindness today would do. Imagine what you smile, or wave or Hello, can do to someone. Now obviously, it’s a little harder now. Because we’re in COVID. That’s been the toughest part. Because… Because I’m a lover, and you can’t hug and you can’t shake was like, hey, I need this to be over to be back to doing what I do. But yeah, I just love one another, just because in a world where we are so divided, and there’s so much hate, let’s be united, and stand together and embrace our differences.

Tony Delisle  41:37

Drew, you just laid out what I think is the antidote for all this divisiveness going on tribalism and all these different things that are really in play right now. The perfect antidote is like you’re saying, kindness, kindness. And being kind to one another, you know, where does that come from, you know, having compassion for one another. And it goes, I think to what you were saying earlier about, you know, we’re more alike than different. You know, to see one another in each other leads to that compassion leads to then treating one another, like you would treat yourself, you know, and and then, you know, leads to, like, you were saying higher levels of forms love, you know, and then what will that do today, and unity is something that we’re really trying to push on this discussion and space that we’re creating here, unity through disability. Again, this is something that impacts everyone, if not now it will, you know, if not, now for you, you know, someone that does that you care about, they have a disability, and it does impact everybody, and what a great place to come to be united, right? I don’t think politics is gonna be the space where we come to be united. So what I’m, you know, kind of honing in on is just like, you know, wow, you know, like, we go out and build a wheelchair ramp with, you know, some people, you know, we all have different political views, but at the time that we’re working together, we’re just like, you know, shooting the breeze joking around, you know, having natural conversations like you and I are having it just doesn’t matter what our political or religious or other religious beliefs are. It’s just that we’re here together and serve as helping one another. Again, that really the foundations of which are compassion, kindness, love, you know, just having these things is where we can come together and be united and how disabilities is ripe with those values and that fruit So, so Drew, you know, I’m kind of getting into my closing questions here. And so one of them would be, you know, for you drew, what do you see as being a meaningful life for you? You know, like, you’re looking ahead, you got so much going on. It’s just really just wonderful for you, what is the meaning and fulfilling life look like to you? Well, you wanted to look back on the 80 year old Drew, looking back at it, you know, his what what he you know, your mid 20s? Now, you know, so to be fulfilled at that point, you know, what will what Drew have either done or been or sad or just, you know, what, what does that look like to you, for Drew Dees, what’s a meaningful, fulfilling life?

Drew Dees  44:12

I will say, no matter what capacity you may be in, just to make a difference, and make a positive impact in the life of others, whether that be a reporter, or an anchor, or whether that be, you know, I’m on I want to write my book, my own book, after I graduate here at the University of Florida, and just travel and speak to people and spread the message that we are no different from anyone else. You know, just whatever capacity you just continue to serve, continuing to love others, and continue to let people know that I’m here to listen, and I care for them and the end of the day. And my struggles will be their struggles and I always say, at the end of the day, if I can let one person know that they’re worth it and make a difference in their life, then I’ve done my job. And I go through all these struggles. So that hopefully along the way, 20 years from now, a student at the University of Florida will not see your… come across the same barriers that I’ve had to do my time here, during my time on Santa Fe, or even in high school, elementary school. And everything I do, I always say do with a purpose, and I do it for the future generation for other people like me.

Tony Delisle  45:34

You’re one of a kind Drew, I say that in the most fondest way. So last question here Drew something we asked everybody that comes on. So what does the independent life mean to you?

Drew Dees  45:48

Sure. So the independent life to me, it means that I’m living as normal life as possible. I may need a little assistance along the way, but I’m on doing and achieving and living and living the American dream. So that’s what that means to me. And I hope that at the end of the day, everyone that’s listening today, everyone that will listen in the future, will achieve their American dream too, whatever that may be.

Tony Delisle  46:21

L-I-V-I-N, livin’. Part of the L and the IL. Well said the American Dream pursuit to happiness, we’re gonna have to get into happiness, you’re just, it’s one of the things that I want to acknowledge you for Drew, is that your mindset and your attitude is very positive and upbeat and energetic and very authentic as well. It’s like not like this superficial rainbows and kitten, you know, cute kitten video, you know, kind of happy, you know, go lucky kind of thing. It’s a real authenticity of who you are. And you seem to, you just have a knack of being yourself and being authentic. And there’s something so refreshing about that. And there’s a magnetism that draws people to you, it’s a real honor to know you get to know you. And you’re just definitely one of those people that in my life, I feel like I’m a better person, because they have knowing them or getting to know them. So I want to acknowledge you and thank you for that and want to help amplify your message in any way that we can there Drew, because I do consider you a dear friend, and you can tell that the girl that wrote that report about you. I got a 2017 autograph of yours that can’t be bought. Okay, let’s just put it like that. All right. But Drew, you know, wonderful having you on. I look forward to having you on more and and always checking in with you and picking your brain. I could go on and talk to you forever. Okay, Drew?

Drew Dees  47:46

Yeah, thanks so much for having me today. If anyone’s listening, and they want to reach out or connect with me, whether it be disability-related stuff, or news stuff, which by the way, I’m an open book, and I’m here to help. God bless and take care

Tony Delisle  48:03

Drew, we’re gonna have all your contact information in our show notes, and we’re gonna put that out there. We’re going to give you this episode to put on your platforms. And so you know, please, we want people to reach you and connect with you and be able to get a hold of you. So all right, Drew. Well, that’s another episode of The Independent Life. Until next time, onward and upward.

Amy Feutz  48:27

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us at cilncf.org@gmail.com for call us at 3523787474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

Jane Johnson is the Executive Director for the Florida Association for Centers For Independent Living (FACIL). Created from the 1973 Rehabilitation Act, there are now 15 centers of Independent Living throughout the state of Florida and nearly 500 across nationwide.

Jane joins us to talk about why Centers For Independent Living are important and why they matter. She shares examples about how people with disabilities can become advocates for systemic change and what is needed to navigate our current political landscape by allowing our values to guide us towards being the best version of ourselves for the greater good of the people we serve.

https://open.spotify.com/episode/3PGOhkuVCTtzn6IfEmVcp7

SPEAKERS: Jane Johnson, Tony Delisle

Tony Delisle  00:00

United we stand and divided, we fall. January 7 2021, as we’re recording this episode that you’re about to hear the day after in DC when they were going to certify the election that the Capitol was breached. And so this is serendipity in a way, because our guests as somebody that is the executive director for the Florida Association for Centers for Independent Living. Her name is Jane Johnson. She works in Tallahassee, and works closely with legislators and other agency directors, to advocate for policies, and programs that really help to serve and meet the needs of people with disabilities. So in other words, this was a podcast that we already intended to talk about legislation and politics and how to push forward issues that are important to people with disabilities. And so it’s hard to ignore the time that we’re in especially less than 24 hours after this incident happened. And so I find it very timely. The purpose of this podcast is to really shed some light on what the Independent Living network is. Centers for Independent Living, are throughout the state of Florida, there’s 15 of them, and nearly 500 of them in the country. Centers for Independent Living were created from the 1973 Rehabilitation Act. And together are a network that provides services for people with disabilities all ages, and they’re free services to the people that we serve. In Florida, we have an association where the centers, nearly all centers are a member of the Florida Association for Centers for Independent Living, FACIL. And with this interview with Jane, she talks about why Centers for Independent Living are important, why they matter why FACIL matters, how people with disabilities can become advocates, not just for themselves, but for systemic change that they’re looking to see in our society. She talks about some of the hot button issues of the day that are out there. We also get into what is needed to navigate these political waters that were in. Very divisive times is certainly the events of yesterday, illuminate. So we talked about what are the values that we need to help us and guide us and be our compass to be the best versions of ourselves for the greater good of the people that we serve. When times are so divisive. And offending one another seems to be the disorder of the day. And then we talk about her vision for a better future, and talk about some of the things that are needed in order for us to be the best version of ourselves so that we can serve other people to the best of our abilities. Hope you enjoy this interview. And I want to leave you with a quote that peace is not the absence of conflict. Rather, it is our ability to resolve conflict through peaceful means. It comes from Ronald Reagan, when he was working to dismantle communism, bring down the wall that was in East Berlin. Very contentious times very difficult issues from people that really didn’t see eye to eye. And I think that is the order of the day. How can we resolve some of these conflicts and issues that we have through peaceful means. For me, I believe conversation is a very important part of this. And if we can’t communicate and have conversations with one another, then the alternatives are not as desirable nor diplomatic and often turned violent. So I think this is a very important time to hear a conversation like this to learn a little more about the legislative process, how to advocate and really how to have the values that are needed to solve some of the incredible issues and challenges that we face in our day to day. I hope you enjoy the podcast. And welcome back to another episode of The Independent Life. I am excited as I’ve always been in these first episodes because the first list of people that are coming onto the show are like my A-list of favorite people. Can’t wait to bring him in and talk to him and Jane, you’re certainly one of them. Bringing you in on the heels of a few others that are coming before you really shows the diversity that this high cast is aiming to achieve. So we just recently had a couple guests on from the University of Florida, and I believe your pedigree there Jane represents perhaps a Florida State University is that correct? FSU?

Jane Johnson  04:36

Actually no, I went to Georgetown University, but I have a daughter who went to Florida State and a daughter who went to Florida so I’m…

Tony Delisle  04:42

Oh, yeah. You’re you’re part of the tribe. Yeah. Yes, again. Yeah. So I would consider you part of the Seminole nation so and we had people from Gator Nation on and I just think that’s wonderful that we can have a diverse space where we invite such people during the conversation. That’s right. That’s right. So as executive director for the Florida Association for Centers for Independent Living, we’re going to be saying FACIL quite a bit in this conversation. And that’s what it stands for Florida Association Centers for Independent Living. You are the director of a board that has 15 other directors and centers throughout the state of Florida. So first off, you’re challenging, right there of having 15 directors, which you helped to serve and carry out our mission and, and desires and all these other kinds of things. I said, I think it really takes a strong person, have a high degree of character and fortitude, and flexibility and creativity and all these wonderful things. So I just want to first of all, acknowledge you for what you do for the Florida Association for Centers for Independent Living, and want to zoom out a little bit even from that and ask you, Jane, you know, why should people care about people with disabilities and issues that are related to having a disability?

Jane Johnson  06:03

Well, and I’ve heard you articulate this before, Tony, but and so I’ll repeat it, but everyone has a disability is going to have a disability or used to have a disability of some sort. So I, for one, we should care about people with disabilities, because we should care about ourselves. And because disability is so prevalent, and you know, we’re, I just, it’s hard to answer that question, because I can’t imagine a reason why you wouldn’t. It’s something that should be natural, instinctive, and part of living a full life, a full and balanced life, where we’re not completely self centered, but looking at the world around us, and trying to invite in and learn and learn from and live with people of all types. And that includes disability includes socioeconomic differences and racial and ethnic disparate differences. But to me, that’s the recipe for a good life and educated and informed life. So I just I can’t imagine why someone would be like, why should people drink water? Because you need to, I guess you could not drink water, but you’d have a pretty dry life, if you didn’t.

Tony Delisle  07:08

Beautifully, said, Jane. So why do centers for independent living matter? Like why should people with disabilities or even those without disabilities, you know, come to know or understand or even utilize Centers for Independent Living? What is our place there?

Jane Johnson  07:20

That question has become more difficult to answer as the state and federal governments have added additional programs on top of the infrastructure that was created, and sort of envisioned when the Center for Independent Living were established in federal law, but Center for Independent Living are the only organizations in the country that serve all disabilities, and all ages. They are designed to be a one door or No Wrong Door resource for people with disabilities. And they here in Florida, they’re designed to serve all 67 counties. So we have a statewide footprint that serves all people. And each Center for Independent Living looks different, because by design, they mirror the population of the communities where they’re located. So they are, they’re responsive, and they are, they’re local, they’re accessible. And that but in addition to the Center for Independent Living, there’s a whole host of different organizations that have been created over the years that also serve people with disabilities. But it’s there are different eligibility criteria. They’re different age groups that they serve, there’s just a lot of different accesses to entry, which I think creates confusion. So people should know about Centers for Independent Living, because if you have a disability, and you have a question, or you have a need, you can always go there and get your questions answered, you might be referred on to a specialist, but at least you know that you’re not going to pick up the phone and call the an organization that only serves one type of disability to be told you need to go somewhere else. So I think that that’s why everyone should know about Centers for Independent Living, because they should be the first place we go to. And ideally, I’d like to work on reducing the number of steps that people have to go through to to get the to the answer to get their needs met, or to connect with people that can provide a support that someone might need, because, and I know from my desk, because we’re the central office, I get a lot of calls from people who I’m the 24th person they’re calling trying to get a simple question answered, and they’ve called everyone and can’t find out where they can get that answer. So it’s really from a consumer standpoint, it makes a lot of sense to have Centers for Independent Living that are the sort of the universal place to go for all disabilities.

Tony Delisle  09:43

Yes, so all disabilities all ages. And for us to be that No Wrong Door approach to systemic navigation and getting the people the resources services they need is very important and well said that we are one of those entities that can really provide the Quick Access. There, as you mentioned there 67 counties in the state of Florida. And there’s a Center for Independent Living that is responsible for every one of those counties. So we have 15 of them in the state. And like you said, while we’re unique in the sense that we are tailored to meet the needs that are specific to the communities we serve, which is fantastic, because the diversity that is here in Florida, we also you know, have a very centralized service orientation to the five core services, independent living skills. I in our services, information, referral, advocacy, peer supports and transitions. So I love that in one sense, though, we’re unique. And in one sense, there’s something that really connects all of us together, we all have, who share the same spinal cord, for instance, but you know, their arms and legs and everything else may look a little different, based on you know, kind of the the people that were responsible for serving within our catchment area. So to take that now, 15 centers, most of which are members of the Florida Association for Centers for Independent Living facile. So we’re all members of this organization, you lead us as the executive director, who has an office there in Tallahassee at our state capitol, to talk to us then about well, why is it important to have a statewide collaboration between all the centers, and then have a kind of centralized command with you, there’s the home, Captain Jane, really helping to lead us and collaborate with us and really leverage, you know, everything that we’re trying to do, why does FACIL matter in terms of the Independent Living network?

Jane Johnson  11:30

Well, because independent living,  centers for independent living our service providers, they rely on federal and state funding, and any entity that relies on state and federal funding should have a presence at the Capitol, because that’s where the money comes from. And, you know, Centers for Independent Living are, and I was gonna go back to something we said earlier, because we are no wrong door resources. But we’re also unlike most disability serving organizations, sales aren’t providers necessary in the traditional sense of the word where there are monetary transactions taking place, and the organizations are making money off the volume of people they serve. CILs are people with disabilities, CILs are received by law. And in practice, it was at least 51% of the employees at a Center for Independent Living have to be people with disabilities. So these are the disability community that sales are the disability community, helping the disability community at large. So it’s it’s different they are they really, their mission is different, their, their bottom line is different, because their bottom line is human, where the bottom line of most provider organizations, obviously is money because that’s your mean, they have a fiduciary responsibility to their leadership. So that is a differentiator that I think makes the seals unique. But because you serve 67 counties, and there are only 15 of you there, certainly there’s not enough resources right now that are allocated to Centers for Independent Living for them to do a realistic job of adequately serving all of the need. And I think this, it’s amazing what gets done on the little amount of funding that they receive. So the presence at the Capitol is one to advocate for additional resources, but also to track legislation and policy that may impact people with disabilities. So not only distills look out for themselves, and FACIL looks out for the CILs. But FACIL also looks out for the disability community to try and advocate when we see something that that’s a proposed bill or proposed rules or policies that could have a negative impact on people with disabilities or that could be enhanced or improved. And, and we also make suggestions about increasing funding or improving programs. So we, on behalf of the Centers for Independent Living, who each represent the people in their communities, we sort of roll all those all those needs up to facile and then facile represents those needs to the legislature and to state agencies because that’s the other piece about being in Tallahassee that people sometimes forget, even though the legislative session is only 60 days long rulemaking policymaking and you know, agency procurements happened 365 days a year. And it’s really important for someone in Tallahassee representing the sales to have relationships with the people that are making that decision, those decisions so they can hear the perspectives of the Centers for Independent Living, which ultimately are the perspectives of consumers. So and I am not the leader, I’m standing on the shoulders of the sill directors who are taking input from their consumers. So it’s it’s definitely a an organic approach, which I love because it is grassroots in the true sense of the word we don’t we’re not an industry, we don’t have a product that we sell. We are you know, we all are committed to try to improve life as much as we can and make life as accessible and independent as possible for people with disabilities. So no, we’re not trying to monetize something. We’re trying to to raise awareness and increase our ability to play a role in people’s lives.

Tony Delisle  15:05

You know, I really want to highlight some of the things that you just mentioned there about Centers for Independent Living is that our services are free for the people that we serve, which we refer to as consumers. And that it is consumer controlled, which again, we take the feedback from the people we’re serving, and provide the services that they’re telling us that they need. So it’s very tailored to what their identified needs are. And like you said, Centers for Independent Living over half of the staff, over half of the board have disabilities, people with disabilities, serving people with disabilities, I find it to be just a incredible model, that really seems to work very well. And I really appreciate how you fold all this into really having a collective voice among all the different centers from this state, and they’re at the Capitol to talk to the legislators and other, you know, agency directors and people that work in, you know, the just the multitude of areas within our government. In doing that, we really get into the space of advocacy, this is something that we really try and promote here at Centers for Independent Living, trying to teach people how to advocate for their own needs, but also in terms of systemic advocacy, which is what we’re kind of talking about here. Imagine, you know, you’re a person with a disability, you know, you have an issue that is very important to you, perhaps it’s, you know, you know, parking spaces, it’s equitable health, it’s employment, it’s getting graduated from high school, there’s just something that’s near and dear to your heart. And, and you want to, you know, get more involved in this realm of, you know, advocacy at a legislative or even a policy level. How does one go about really kind of learning, especially if you don’t have the experiences and the knowledge and the know how the wisdom that you have Jane, you know, how does somebody with a disability really start to learn more about the issues and getting involved in terms of making an impact?

Jane Johnson  17:00

I think there’s a lot of good examples I can think of over the years where people with disabilities have approached legislators directly, either through emailing them or attending a legislative delegation meeting. Or, you know, there’s a young woman down in the Tampa area who was actually had a job working for a legislator, and had to inform her boss when the boss wanted to give her a raise, that she couldn’t get a raise because she relied upon a program, a state funded program that had income restrictions. So she made more money, she would lose her benefits. And when the legislature heard legislator heard about that, she was outraged. She had no idea and this is what someone who had served on healthcare committees and had overseen the development of policies around the Medicaid waiver programs. She realized the impact that this was having and the unintended consequence, it had of limiting people’s employment potential because you were tied to a low income to receive a benefit, which didn’t make any sense in terms of allowing people to achieve their full potential. So from that conversation came up a proposal that was adopted by the legislature and we Florida has raised the income limits for people who receive Medicaid waiver services. So that’s like a, an extreme example of someone getting a job as an aide and then legislators office and educating that legislators almost accidentally, but it shows you what is possible. But another sort of more pedestrian example would be if you’re first emailing your members, first you have to find out who represents you in Tallahassee, who are your local House and Senate members. And you can find that on the House website and the senate website, you can see if you’re a voter, then you can look at your voter registration card to see what district you’re in. If you’re not a voter, then you should as soon as this podcast is over, go figure out how to register to vote.

Tony Delisle  18:45

That’s really important. That’s one thing centers help people do as well.

Jane Johnson  18:49

Yes, and if you do not register, then call local Center for Independent Living, and they can walk you through that process. And if you have a disability that you think is going to make it difficult to register, they can help you with that. And they can also help you vote on election day or before election day. So but you know, getting involved in the process, first as a voter and then as a constituent in your local representatives and senators, districts, making sure that you know how to get in touch with them, make them aware of an issue. Remember that they are really busy, but they usually hire really good staff. And so it’s it’s okay if you just have a conversation with a staff person in someone’s office and not them directly. Because a lot of times, legislators will take their cues from their staff because they they hire those staff for their policy expertise and you know facile and it’s in the sills have developed really good relationships over the years with several legislators who understand their issues and who are kind of our go to people. But every two years we have turnover in the legislature. So we always need to be recruiting new allies and new friends. But I think the most important thing piece of advice I would give is that every legislator is a person. Just Like us, and every agency head is a person just like us, they live they breathe, they have families, they cry, they they get depressed, they get, they feel insecure, we all have that. I mean, the universals of the human condition are shared across everyone, regardless of what your abilities or disabilities, so they’re just remember the things that unify us. So don’t be intimidated. And, and be, don’t be angry, light be deferential. But also remember that your personal story will probably resonate more than kind of a five point. Issue brief or a passionate request for something that’s just absolutely not right. That can be off putting an intimidating, especially if someone’s not familiar with disability, but if they’re meeting a human being, and you’re speaking human to human, and you’re humanizing the issue that you’re trying to, to make make traction on, I think you’re generally going to be more successful that way. Because again, this is we’re all humans, AJ have a title, but they still have their humanity, the humanity, they don’t leave that behind. So, but it’s easy to forget it because we’re a culture that likes to put people on pedestals if they have fame, or notoriety, but it doesn’t, doesn’t diminish their humanity, it’s still just a big as big a part of them as it is in you.

Tony Delisle  21:23

The… I love your answer, they’re going back. So we have more in common than we do differently. And I appreciate you really illuminating the humanity that we all should point towards and share in that commonality with one another, I really think that could go a long way into discussing some of the hard issues that are out there having empathy and relating and connecting to people. And we find in you know, in this space, this podcast, that you we can find a lot of unity through disability. And I imagine that your conversations with people at the legislature department heads perhaps may or may be a lot easier, people have experienced disability and their own family or their own lives and, and can really connect in that sense. So that’s why I really appreciate you sharing that if people really want to advocate telling your story. You know, learning learning how to tell your story to people that are decision makers can really go a long way and complement what I think you do very well Jane and many of us as directors often do is we we’re data driven. And so we’ll bring in the stats that show these disparities in education, employment, health, transportation, housing, all across the board, we got reports and all these other things that are critical to be informed about making the right decisions. But then, you know, the the heartstring part of this is that, you know, this data represents eyeballs, hearts, you lives of people, and it can get lost in the data that is needed. But I think it really closes the an important part of the circle that’s needed to come around people and and do those kinds of things.

Jane Johnson  22:52

Well, and you want to differentiate yourself. And I say that because I spent a couple years working in the Governor’s Office of Policy and budget and the governor has the final say on the state budget every year. And so his policy folks were the ones we had a look at the budget and make recommendations to him about what vetoes to to make, and we also had to make recommendations about what we should approve in when he put out his budget. So because of that the way the process works, because the people the lobbyists here in Tallahassee knows who’s having that input, and who can influence those decisions. So I would literally have lobbyists come through my office all day long, just cycling in and out trying to make their case about this issue or that issue. And it really became I became numb. And I just one more, one more, one more. And I found that people were who were able to differentiate themselves from the masses and make their stories more personal. stuck with me and you know, and sometimes I really liked it sometimes I really did and but it it wasn’t just another lobbyists lobbying on behalf of a company that wanted money because usually it was money or and sometimes it was a policy change. So I think it’s important to be human to differentiate yourself and to sort of seal yourself in the in their psyche. So they they know when they see that issue. They think about you they think about your story or the story of the family member that you shared. So that opens the door for you. But then once you’re in the door, you need to speak their language. And that language right now and at least for the past 20 years because we’ve had a republican dominated legislature and governor’s office is fiscal conservatism. Conservativism. So if you’re asking for a policy change or an appropriation, you have to like Tony you just mentioned, you need to have the data available to be able to show there’s a return on investment. You need to be able to show why this isn’t just another pot of money layered on top of all the money they’re spending because most legislators don’t understand the budget and they don’t understand the myriad programs that are out there getting funded to serve disabilities and and all kinds of other services. So they, they see, you know, an ask as just another thing on top of everything else. And it’s really important for you to demystify that for them, and show them in as simply as possible. You know what, what you’re asking for, and what the outcome is that you want to achieve, and then what the benefits to the state will be from that outcome. And so if it’s allowing people to live more independently and achieve their economic potential, like raising the income limits for people with disabilities to receive Medicaid waiver services, then you can talk about what happens now that they’re in fully employed, they’re buying more they’re paying taxes, they’re able to do more things by themselves are able to be full participants in the economic society. And it reduces their reliance on other publicly funded programs set like food stamps, or housing vouchers or other things that have been created to help people who have low income. So I think that’s really important to be able to tell that return on investment program. And just, you know, I would highly recommend that people watch a couple of legislative committee meetings so you can get inside the heads of the legislature and understand how they think and what what kind of questions they asked, and what’s important to them. But again, at the end of the day, especially if it’s an appropriation, when they’re going through the budget and trying to decide what to fund if they can associate an issue with a person or a story, you’ve stuck, you’ve got stickiness, you know, that you’re not just one of many things that they’ve got to go through and, and figure out what you know what to cut what to keep. So I think that that’s really important.

Tony Delisle  27:01

It’s kind of like you were hitting the mind with the data and the heart with the real life stories that the people are experiencing. And I really appreciate how you just did a basic civics one on one right there and look forward to further episodes where you can get real granular and in a stepwise manner of like, you know, I know that, you know, you live in an area where there’s a representative and a senator in the state capitol, that are responsible for being your voice, find out who they are, reach out to them, don’t be dissuaded if you get a hold of a staff member, and you may be talking to them, and not that person, that’s up to Tallahassee because they can be a very influential with the person that you’re trying to reach. And perhaps keep going back and, and having the the ability to make human connections, learn how to tell your story, speak their language, if there are fiscally conservative. So again, like you’re saying the return on investment, you know, Centers for Independent Living or, you know, providing the services and because they’re providing the services, someone that was receiving, you know, benefits, got a job, and now they don’t need benefits, because they have a job and they just say, you know, so being able to talk the language, you just right there, I think laid out a really good stepwise thing that people can get involved in. And I would even go even closer to home and say, you know, find out where your city or county commission meetings are, and when they’re being held. And and that’s really local and and and if just getting, you know, familiar with the process itself, is huge. There’s so much to learn. I imagine it’s, you know, even for yourself a veteran, and this is still continuing learning the Civic process and all these other kind of things that are out there and what influences people, I appreciate you given a really good like civics one on one there. So what are what are some of the specific issues that are right, foremost there, the Capitol, whether they’re never present issues that you know, with disabilities as always working to overcome? Or what are the hot button issues that are trending there at the Capitol that people should be aware of?

Jane Johnson  29:02

Well, as you can guess, the COVID-19 pandemic is really eating everybody’s lunch, it became front and center, you know, the House and the Senate and the governor’s office, each and announced their, their big priorities prior to the pandemic happening. And those pandemic those priorities really have had to take a backseat to figuring out one how to get you know, flatten the curve, which we thought we had done and never the curve is back up. And now we’re in the mode of trying to figure out how to get the vaccines deployed. So in a way that that is fair, equitable, and effective. So that sounds like a cop out answer. But that really that’s that’s a huge priority right now. we dodged a bullet on election, election integrity, because we had a good election here in Florida so that that could have been an issue. It’s been an issue in the past. So

Tony Delisle  29:52

I think you’ll see hanging chads.

Jane Johnson  29:55

I think, I think Georgia that’s going to be front and center and you know, in their session. That’s all I think you’re gonna see, I know that there’s legislation with putting stricter penalties on protests, violent protests and yesterday’s events in, in Washington DC will probably influence how that that dialogue goes, you’re going to see. And I hope this happens this year. But for the past several years, Senator Jeff Brandis from the St. Pete area, has really been trying to push for criminal justice reform, which is so important. And I think for people who have mental, mental health disabilities, I think that’s a really important issue. And people with substance use disorder as also because a lot of people who are incarcerated are incarcerated as a complicated as it because of complications related to mental health issues and substance use disorder. And he’s trying to take a look at people who are incarcerated and make sure that the right people are there, and that people who are nonviolent offenders who have other things going on in their lives that kind of got them there can can have another path besides incarceration. So you’ll see that you’re gonna see a lot of environmental attention on our water supplies, and some the Republican House and Senate leadership have acknowledged the importance of I don’t think they’re calling it climate change. But water encroachment, we know there’s we’re seeing our shorelines get smaller and smaller. And so I think there’s going to be a tension there. But it’s really hard to say, and I don’t mean that I don’t I really am not trying to dodge your question. But COVID-19 has, has had such an impact. It’s impacted education. So I think you’re going to have to see a real engineering of how students are educated if they’re not able to come to the classroom. Teachers have been stressed more than ever before. And teacher pay was a big issue for Governor desantis in his first term. But we may see that come back again, you may see some, the Marjory Stoneman Douglas commission met, continued to meet and the results of their most recent report were escaping in terms of their evaluation of Florida’s mental health system, because it’s like it’s very balkanized is broken up and it’s spread out across multiple agencies that are not connected, and the don’t communicate and people get lost. And the ultimate outcome is that services are not delivered well, and people, we spend a lot of money on mental health, but we don’t have good outcomes to show for it. So I think it could be any, any one of a mix of that with COVID kind of being the know the gorilla in the room, pushing those off the table if things don’t get better soon.

Tony Delisle  32:32

Yeah, yeah, I want to comment on some of the issues you brought up there related to social justice, everything that’s going on right now. And that area, you’re bringing up, you know, mental health, incarceration Centers for Independent Living, were really formed because of the way that people with disabilities were institutionalized. So the 1973 Rehab Act comes along, and Congress mandates funding for Centers for Independent Living, to transition people out of institutions, and back into the community. And I’ve heard other people say, and I would also agree that, you know, our modern form of institutionalization is the over incarceration of people with disabilities and the rates of people with disabilities that are already in our prisons, and we tend to in prison, our population more than almost every other country in the civilized world is very high, and perhaps preventable. And we should maybe start looking at this as our modern form of institutionalization, we, you know, often hear about the school to prison pipeline that many non white youth are, are on and in many of this could be prevented, diverted. And that’s part of our mission, you know, is to really go into those areas. And I think we have a really key role to play there. And mental health being something that’s really out there right now with as you’re saying, with the the school shootings and the commission that still works on that, this is a very important place for us. You bring up also, you know, the times that we’re in with COVID. And so we’re, it’s January 7, 2021. Right now, people with disabilities are more impacted by the COVID virus for a variety of different reasons, and has been very disturbing and in many ways, the fact that people with disabilities tend to get the virus and are more likely to die from the virus. And there was inequities that are out there. And now we’re in a moment of where vaccine amazing feat of science has been created and getting the distribution out there presents all kinds of access and functional, you know, kind of issues that that can be out there in the messaging that communicating you know, people that are barriers to getting the vaccination and all these other things are so much in play right now. And the messaging right now that’s going out, we really need to be thinking about how we’re, it’s being sent out and so it’s accessible for everybody, especially people with disabilities that might, you know, have, you know, either a language barriers or have, you know, intellectual barriers or just all these other kinds of things are out there. So that’s that’s a huge place that we’re at right now. And we’ve been You know, in a COVID type environment since March of 2020, I believe that marks are things when our center close. And so you know, we’re closing in on almost a year now, in a transition into this post COVID world, how have you seen Centers for Independent Living? make this transition? Now again, you’re you’re you know, up there in Tallahassee, you represent all 15 centers, you got a pretty good bird’s eye view of how all of us as being the different 15 centers in the state, how have we adopted pivoted to this time in COVID? Have you seen that, from where you sit?

Jane Johnson  35:33

As you’re asking the question I’ve got this image in my mind is of a drop of water in a lake that like creates ripples and goes out and out and out. And I because because when what I remember happening, and we would have daily calls, at least weekly calls with all of the centers throughout this, you know that the first weeks of the pandemic, but we saw, I saw the center’s first look to their own people to their staff and their team and make sure everyone was safe and figure out what what they could do. And as you mentioned, use you closed down on March 13, most of the centers had to close down because of local ordinances. We then were told we were at Center for Independent Living were considered essential providers. Yes, there was a shift to figure out how can we continue to be available to consumers, but not be open for business in terms in a physical way. So so the first ripple was, the centers took care of them, their their people, their teams, and their families and the consumers that they knew in their sort of immediate network that they had a lot of frequent contact with. And then from there, I just watched Center by center, different, each one reacted differently, but all creatively and nimbly, to figure out how they could continue serving people by phone by, by zoom, and all the skill Center for Independent Living had an opportunity to upgrade their technology infrastructure. And they did that they made those investments with the consumers in mind to figure out how can I best stay connected? Can How can I see my consumers? How can I keep them supported through a pandemic, when I can’t, my doors can’t be open, or we can’t have face to face visits. So I watched the centers evolve into technological organizations, you know, virtual organizations, literally, I mean, it was literally overnight, it was amazing how fast the very cool thing for me as as facile director was watching the center’s each learn from one another because we would have these regular calls. And the director would say, Well, how are you doing this? or How are you doing that? What do you do about this, and so they would idea share, they would they would collaborate, they would, they would kind of learn from each other, it was really amazing to see that process work. It was, again, it was very organic, there was a lot of entrepreneurialism, that became like a think tank. And then from those Think Tank conversations, then this, the center directors would go out and try to implement the same iterate and iteration of what was being done by another center or some variation that better serve their community, because we have such a diverse population that we’re serving concurrent with that work that I saw the centers do, I was able to participate it with the Emergency Operations Center on daily calls to talk about how are things going and what what the needs are out in the community. And through those conversations that I gained access to because of the Florida Independent Living Council, which is not another Association, it’s a state, there’s actually a federally established Council, that they represent the Independent Living network, and they’re responsible for the state Independent Living plan. But we worked very closely together. And through their connection with the Emergency Operations Center, I was able to have a seat at that table, and to listen to the conversations and then brainstorm about solutions. And one of the things that came out of that that was so exciting was feeding Florida has affiliates, like the centers all around the state that provide support to food banks. And so people with disabilities who were isolating at home had had trouble accessing food banks or getting food. And so we were able to connect the feeding Florida affiliates with the Centers for Independent Living, and they each developed relationships where the centers could receive food that and then they can make that food available to the people in the community. And this was critically important at a time when a lot of people lost their employment. A lot of people are reemployed now, but a lot of people had lost their employment, their income, they were isolated. And it was really, it was frightening. And I don’t know that we’ll ever fully know the extent of food insecurity that happened in that moment because it was temporary, and no one was really tracking it. But I think it was pretty, pretty frightening. So the centers were able to play a huge role in that because of our involvement at the Emergency Operations Center. We also were able to bring in the Home Health Care Association of Florida to see if they could help with people who needed Personal Care Assistance because there were bcaas, which is the acronym for personal care assistance or either Coming down with COVID, or afraid to go to people’s homes because they didn’t want to infect their families, or people who relied on personal care assistants were afraid to have someone come into their home. So there was there was another whole sort of micro problem happening under the surface of most people’s radar that we were able to become aware of through our connection with the EEOC. And then are we you know, I literally called the executive director of the homecare association of Florida and said, Can you get on these calls, we need to talk and see how we can work together. And they were more than willing to work together with the Centers for Independent Living. And we did the same thing with the State Agency for Health Care administration, making her aware of what our needs were, it was regard to making sure that managed care plans were doing everything that they can for the people that they in their members, who would be people, you know, receiving Medicaid services, and making sure that they, their social and emotional needs were being met, in addition to their health care needs. Because that was that’s another huge piece, it’s, it’s, those are determinants of health. But they’re often neglected, because they don’t show up on your medical record, but they can drive what’s on your medical record. So that was, um, it was really cool to see all of that evolve. festal created a resource page on our website, where we try to consolidate all the information on in various areas, because there was so much coming out all at once. And a lot of it was changing, because definitely the federal government was building that plane while they flew it. And deadlines change regularly that the small business association rules on the payroll Protection Program, and also the economic injury disaster loan program, there’s all kinds of financial assistance coming out, but the rules and regulations around them evolved. So trying to keep all that updated was hard. So we tried to put it all in one place. Yeah, that was, um, it was a really frenetic time. But when I look back on it, my memories are very positive. Because of what I watched the center’s do, they definitely rose to the occasion, they recreated themselves, they know they grew and developed. In some cases, they were able to establish connections with people that they hadn’t had before, because things could be done virtually. And so people didn’t have to come to the center. And they didn’t have to go to someone’s home. But we could, we could be invited into one another’s lives more easily and more frequently, which I think has been a real positive.

Tony Delisle  42:20

Jane, you have great summary there. And yes, you’re saying that I relate to many of what you’re saying keeping our staff and consumer safe checking in on the ones that we know about. And growing that out. I think what you talked about participating at the state’s emergency operation center when it was activated from the pandemic and going there every day and getting updates from the State Department emergency management and all the other affiliates that work with them. Having a voice at the table being able to communicate some of the needs and provide technical assistance really did open up the door for us and I know a good amount of the other centers providing a service we’ve never done before which is home based delivery of essential resources like you mentioned feeding Florida really opened the door for us to work with our local food banks to acquire and and then once we acquired the food we can you know get the food out to people food security is huge and the economic impact is still with us it’s getting you know much worse in many ways the longer it goes on. And so we’re finding that we’ve carved a lane out and meeting the access and functional needs of people with disabilities who are food insecure but can’t get out to local food distributions or even access food themselves from work it’s just really good opportunity for us to get even beyond food other essential resources out to people and your participation up there along with the Florida Independent Living council another piece of the Independent Living network participation up there really helped to for our senator many other senators to provide a service that we’ve never done before and like you said now we’re providing in innovative ways that we never were I don’t know if we’d be doing this podcast right now if we weren’t putting in this situation to try and you know look at different platforms of talking to people and creating communities and connection so I’m glad that you’re seeing that I think one of the biggest benefits of facile Is that what you pointed towards and when we came together and shared information what are you doing or here’s what’s working for us this is what I learned this is that sharing happened at the director level but it was happening more than I’ve ever seen at the direct service care provider levels Independent Living skill, you know, instructors were talking to each other people that provide depth services were talking to each other their associate managers were program managers were talking to each other information referral folks were talking to each other and getting together and really swapping out ideas I hope this continues there was already you know, some some some of that going on to begin with. But I just hope this force amplifies that collaboration. Because that’s where I really find the benefit of facile is really the interpersonal sharing of information and an experiences that we can really borrow and and and improve upon or modify to bring back to our own place. So I really I really have appreciated that part of going through a crisis.

Jane Johnson  45:05

I hope it continues, I just want to say cuz to echo what you said, you know that book, Bowling Alone by Robert Putnam was so interesting, I read it probably 10 or so years ago, but it’s, he talks about how we are essentially tribal people. And we need connection. And we need groups where we can come together around something besides ourselves. And I think that that is, especially in a pandemic, everyone needs at every level within the the hierarchy of a CIL or any organization. But the groups that have been able to that sort of these little, there’s these ecosystems that have been created, and we’re all better nourished, mentally, and physically, as a result, I think because we have, we can, we can talk to other people who do the same job in another part of the state and probably have the same frustrations, or have solved the same problems. And it’s very affirming, it’s very, very healthy, to have that connection. And because of the pandemic and being forced to move virtual, we’ve been able to connect people on a level that we haven’t been able to do before. And I do think that working in working in a center for end to end living is not an ideal state, it’s not Camelot, it’s hard because you’re confronted with really difficult problems and difficult questions, you can get frustrated easily because you’ve got a lot of times we’re working against a system that doesn’t move easily. So having people that you can share those those frustrations with and kind of talk to and get reinforcement from is really important to staying motivated. And, and staying on top of your game. So you continue to take a positive attitude. When when challenges jump in your lap, as they will always.

Tony Delisle  47:11

Yeah, yeah. And then that connection fills my bucket and really does help us to endure to these challenges and make us better for it. And so relying on each other, again, unity through disability, and we can come together and be with each other as we go through that is so key and needed. And I say this to really kind of get a little serious in our conversation here. Today is January 7, 2021. Yesterday was January 6, 2021, a day in which in Washington DC they were aiming to certify the election, and something very historic happened in which the capital is broached. And, and there’s been a lot of fallout due to that. And and I’m not here to have a conversation about the specifics in that situation. But I do think it does point to the division and the type of communication and discourse that is very prevalent in our politicking right now. And so someone like ujjain, who is constantly meeting with legislators, staffers, and other department officials, and you are swimming in the ocean of politics, and are very well versed in type the type of discourse and nature of the conversations that are happening nowadays, which seem to be very reactive and offensive and finding the other and all these other forces are in play. So in this environment, what what are you what are you finding to be important in terms of how to navigate the type of political environment that we’re in, to still try and get the work done that’s needed to get done in order to improve the lives of people with disabilities? Like so how do we navigate these waters, from a perspective of, you know, moving in advancing important conversations around the policies that are impacting people with disabilities?

Jane Johnson  49:12

You know, I think what we are learning over the, with the events of yesterday, and the events leading up to yesterday are that there, there’s truth and there’s opinions. And we’ve mixed, we’ve melded the two. And we’ve started to think that someone’s opinion is truth when it’s just an opinion. So I think that keeping that in mind, it’s really important to focus on universal truths. And disability is a universal truth. We will always have disability, it’ll never go away. It’s always been there. It’s in the Bible. It’s, it’s in the future. Disability is part of life. And it’s it’s a shared part of life and I kind of like what I talked about earlier about getting making it personal. For our work, our North Star, the focus of our company should be on the reason why we’re here. And that is to to celebrate, and to support people with disabilities and to identify barriers to independence and to create more opportunities for people to live independently or more independently. So I think as long as that focus, as long as I maintain that focus, I am not Republican, I am not Democrat, I am not liberal, I am not conservative. I don’t have I don’t, I don’t, I don’t want to. I’m swimming in the sea of politics, but I want to keep my head above the water and focused on you know, the land I’m suing to, and not get caught up with all this the, you know, the stuff around me that could freak me out, like the plankton and sharks and this and that, just focusing, focusing on on the destination, because that’s why I’m here. And I think, but and ironically, I think everyone around me in the water also wants to get there, but they forgot why because they’re looking at all this other stuff. So I think just rising above the noise. Sometimes, you know, if you refuse to engage in the opinions in the politics, some some people will be offended, a lot of people are relieved. Okay, so you’re not going to talk about that. You just want to know about this. Okay, I can talk about this. It’s not, it’s not divisive. People have made disability issues divisive, but they shouldn’t be they’re really not. I think that’s more the result of an in artful discussions or, you know, conversations that maybe got too passionate, but really, there’s nothing. There’s nothing divisive about disability, it’s, it’s when you humanize it, and you and you use plain language, use inside voices to explain, you know, what the problem is, and where you need where, where things need to change, there’s nothing divisive, it’s, as far as I’m concerned, it’s, it’s as plain as say, like I said earlier, it’s like drinking water, why wouldn’t you want this for other people. So I think if we can just remember those things, and not get caught up in the noise, I think we’ll be okay. And in some cases will be, I don’t mind talking to those people, because and this was another advocacy point I forgot to make. But don’t come with a problem. If you don’t have a solution. Don’t just show up and tell people what they’re doing wrong, or why the system is broken, or why you need more money for this or that. That’s everybody does that.

Tony Delisle  52:17

And it’s just complaining. It’s just complaining.

Jane Johnson  52:20

Yes, it, it gets tiresome, and people will set you off, you’ll be talking and they won’t be hearing anything, it’s just right over their head. Because there’s, you know, human tolerance is only so, so big, and people just, they shut down. Because if there’s a problem that seems so complicated and big, and there’s no solution, they they’re gonna move on and have a doughnut. So anyway, but so I think that that’s that’s the important thing to be be the adults in the room. Focus on that universal truth that disability is a universal part of life, and come to the table with identify the issue but but have a solution that’s just as just as strong as the problem, you know, just as well articulated as the problem. And you may not know the entire solution, but you can make recommendations because, you know, invariably, what you think is a solution may not work because of the way things are so complicated. When it comes to state and federal programs that you can probably get to where you’re going, you might not be able to go exactly the route you’re proposing. The opt ins still comply with federal and state guidelines, but you can probably get there, or at least partially get there. But I’m going to take your your swimming, net one step for one, a few more strokes further, play the long game, but don’t be but don’t be unwilling to stop and make short gains. So if you have to stop on an island from and rest for a while, do that keep the shore in line, but but you know, you won’t get it all in one session, maybe won’t all happen at once. But you so you need to have a short game and a long game. And that’s where sort of visioning comes into play. I think that’s how the Rehab Act was passed. I don’t think we know it didn’t, didn’t happen overnight. It took a longer it took a lot of advocacy, the advocacy, that approach that worked in the 70s probably wouldn’t work today, because so much progress has been made that that you you don’t have the same disparities and discrepancies that you did. And you also you it was happening in an age where protests were pretty common. So it was it was part of a whole lot of cultural a cultural environment that was different than where we are today. So but um, so yeah, no, I would just say got to be relevant. And and remember that disability is universal and it’s it’s not a political issue. It’s it’s super it’s, it’s supersedes politics, and it’s in applies to affect everyone and if it isn’t affecting you today, well when you’re when you’re 80, and you need a walker.

Tony Delisle  54:57

That’s right. Oh yeah, and So what what I hear you saying is that what’s needed in this current political environment is clarity, like you mentioned, the North Star, you know, to compass to tell us where we’re going. And clarity often is said to be a superpower. And, you know, to get clear on what that is, and what our values are, and, you know, also said unity, you know, I really appreciate that you’re really tying in disability impacts everybody, this is something where it’s not political, where you can come together and help one another. And with your island analogy, I heard patience, patience. You know, that that’s a tough one there, because the urgency of now, but it is, seems to be a universal truth, that things that are worthwhile take time, and they have the endurance, I know you’re an endurance athlete, like to have the endurance to keep in, persist and persevere, takes patience, and then that value of patience is also critical. And so I really think that if we can take to heart those values you just highlighted there, along with what you were saying earlier in the interview with just recognizing the humanity in the other person, even if it’s the other person that and this is just me speaking, that is, you know, maybe not thinking of the same, you know, perspectives as you are, maybe they’re actively trying to offend me, you know, maybe they’re, you know, trying to act, you know, this the kind of discourse that we have now, how can I have patience for that person? How can I have empathy for that person, how can I maybe, you know, get out of my own head in my own, you know, reactiveness, and all these other things and have compassion, I feel like, we need that more than ever. And I feel like, that’s a very hard thing to do. Like, that’s almost a higher level thing to do. It’s definitely for me, you know, something I’m trying to put into practice. But you know, just at the end of the day, recognizing that we have more in common than we knew different, and not getting distracted by this plankton that’s around us that we can look to divide us and become so tribalistic and that sense, so I seek to be, you know, somebody that really does not traffic and trying to offend people and anger people and really come at it, you know, with a way of agreeable that we can disagree and have civil discourse, and have the ability to let go of my own perspective and see life from another perspective, and then revisit my own and see if that’s changed at all, it’s hard to do when I’m angry at somebody, or offended by them. And that is a choice. You know, having an opinion about that is kind of where a lot of things can maybe go awry, you know, things aren’t good or bad, but thinking makes it so and so, a lot of the things are indifferent, and we, you know, apply our opinions to it, and things can go awry that way. So we’re gonna, you know, start coming in on the end of closing questions here. I got two of them for you. One of them is, what is your vision? You know, if you were gonna, you know, project out just a little bit here, for what you the impact you want to have, as the director for the facile. What is your vision of the influence the results of your involvement with this organization for people with disabilities?

Jane Johnson  58:15

I really, really want to do everything I can to create to increase the stature of Center for Independent Living in Florida, I want every legislator to know what a Center for Independent Living is, and what they do, I want centers to be seen as the assets that they are. And I want to do what I can to open the door to new opportunities for centers to serve more people to do more to have the resources to expand their footprints. Really, I just, it’s all about growth. But I think the stature piece of it has to happen also so that people see the value. And I think that Centers for Independent Living are modest to a fault, they have a value proposition, they can make an offer to the community to, to local government to state government, and but they’re not very good at patting themselves on the back and selling selling themselves. And so I feel like I can unapologetically be that spokesperson for the sales there and talk about them proudly and brag about the things that they do, and, and how they change their communities. And, you know, ask the question, What would your what would your community look like without a Center for Independent Living, and then kind of tell them what this is what would happen if all these people weren’t getting the services or hadn’t gotten those services, this is where they’d be living. This is how they’d be living this is how much more it would cost. So so I think that to me, is my my vision is that I hope that when I’m no longer with fasil, that I can look back and say that we are a better organization. Now and the scale and the Center for Independent Living, have been able to achieve their potential because it’s only for lack of resources and opportunity. It’s not that they lack the ability. It’s just there. They haven’t been given. You know, they’re they have a fixed amount of money and they have to serve an unfixed population. regular basis and regularly we see we know that needs are going unmet because we just we don’t have the we don’t have the resources. But also there’s opportunities. Are there programs were still should be made major players, we’re not now and I’d like to see them become major players?

Tony Delisle  1:00:18

Well, I think we’re on our way and many effort levels because of your involvement with it. I want to acknowledge you before I ask my last question. Because of you, first of all your knowledge of how the system legislatively works, the skills you have in communicating with people influencing people, the ability to build and sustain relationships, which is so important in this area, your ability to think creatively, your emotional intelligence and agility, your ability to work with 15 directors who are used to being in charge and having their way and, you know, being able to, like, I just have this ability that you have to do the job that you do is quite stunning. And and I and I’ve taken notes, and I’m learning a lot from you, you have a lot to offer, not just our membership, but all people who we touch as well. And I look forward to continuing conversations with you that we all can learn more about civics, how to advocate how to be better, what are the issues, how we can come up with solutions, like you said, you know, identifying the problems, after a while if we don’t have solutions is just complaining, you know, there’s no training needed to be a critic. But there is a lot of training needed to be someone that really has the skills and commitment to implement the solutions needed to those problems that were criticizing. So I commend you for being all those things and more Jane.

Jane Johnson  1:01:45

Tony, my work is inspired by the people I work for. So I’ll just say that, that I see the centers, the directors in the work that they do, and the commitment and the frustration they have because they just want to do more, which is really exciting. To me, that’s theirs, this is not a complacent group. So anyway, so you are way too complimentary, because really, I’m only as good as the people I represent.

Tony Delisle  1:02:07

Well, that speaks to your humility, and another great asset and value you bring to the table. And I also like how you pointed toward this is the infinite game, as Simon Sinek would say, there is no finish line to the work that we’re doing here. We’re all going to be standing on shoulders, and other people will be standing on our shoulders. So our last question Jane, we ask everybody is this question is to you, Jane, what is the independent life?

Jane Johnson  1:02:36

The independent life is being able to dream of a future and then having the opportunity to pursue that dream, whether you get to the dream or not, but knowing that you have an opportunity to try to pursue a dream, because whether that means going to school and and training to become a neurosurgeon, or if if it means being able to see your family, I just, I don’t know, it doesn’t matter how big or how small, but I think that when you are independent, that means you’re given the opportunity to have a dream, and the chance to pursue it. Because I do I do know that there are people who live in institutions, or who are in settings where life is so stressful that they end so limited that they can’t dream and they certainly can’t try to pursue a dream. So to me, that’s that’s the goal for for all people of all, regardless of ability, but just being able to have a dream and have the opportunity to try to achieve it, whether whether it’s you’re successful or not.

Tony Delisle  1:03:45

That’s beautiful Jane, and I really appreciate how whether you’re successful or not points to the process of working towards our dream. And then the way that is the end, not the means to the end it really we got to enjoy trying to live to that ideal, whatever that is for us to live independently. And in that process, fall in love with the process of again, there may not ever be a finish line. So Jane, I really appreciate spending time with you and having this conversation. I look forward to many more to come and continued. wish you well health and all the efforts that you do on behalf of our association and on behalf of people with disabilities and just the behalf of all people everywhere. So Jane, thank you very much.

Jane Johnson  1:04:31

Thank you, Tony. Yes, this has been wonderful. I just really appreciate it. Have a great day.

Tony Delisle  1:04:35

Take care, onward and upward. Hello everyone. And this is Tony coming to you to let you know about a new weekly addition to our Independent Life podcast. We’re going to have weekly episodes that catch us up on what is going on in our Capitol related to the legislature the policies, the laws, the issue That impact people with disabilities. We are going to be brought this information to you by Jane Johnson, the executive director for the Florida Association for Centers for Independent Living. She is going to tell us what is going on today what to look forward tomorrow. And along the way she’s going to talk about some civics, some one on one some things that we should know about how the process works, because this is very important in terms of us being advocates. advocacy is one of the core services that Centers for Independent Living provide. Self Advocacy, and systemic advocacy are two parts of what it means to advocate and each of which are very important in terms of the legislative process. When we will look at the history of the independent living movement. It is filled and continues to be filled with advocates supporting the laws policies, and civil rights for people with disabilities. This history has led to the 1973 Rehabilitation Act where Centers for Independent Living are funded from this has led to the Individuals with Disabilities Education Act, which supports accommodations and other provisions for people in education, the Fair Housing Act, fair labor laws, there’s so many different types of policies and laws that are on the books today, because of people with disabilities who advocated for them. So this will be a space where we get to learn more about what’s relevant what’s going on in the Capitol. We’re going to learn more about the process. And through this, we’re going to be informed to a point where we can push forward onward and upward to advocate for the issues that are near and dear to our heart. So we look forward to having you along and keeping our ear to the ground or what’s going on with the decision makers in our Capitol as it pertains to people with disabilities live in the independent life.

As we start a new year and begin to work through our resolutions, we invite you to join us on this journey as we collectively ask ourselves: How through these challenges that we have, through the world of disability or the greater world at large, make us a better person? And as we strive to become a better person, how can we help other people to do the same. In times of uncertainty, Tony reflects on drawing upon values of commitment, integrity, caring about people, diversity, and collaboration to be his compass.

https://open.spotify.com/episode/1ylyYQH9Xcvj5NLMN5dqh7

SPEAKERS: Tony Delisle

Tony Delisle  00:00

Hello everyone, and welcome to another episode where in we’re going to take some stock, at least I am, on where we’ve been where we are and where we’re going. It is January 28, 2021. And there is so much going on in the world at large, and in the world of disability, in the world of independent living, all of us are going through very shared experiences right now. And this is, I think, a really good time to, perhaps, for me to share some thoughts about it. A lot of things come to mind, especially this time of year where I think it’s very typical people, you know, look to this is a time of renewal. And looking forward, for some clarity. This is a time where people make resolutions to make changes in their life where they can become a better version of themselves. And it’s well known that many resolutions don’t stick, that people go back on them for whatever reason, and it’s very challenging. One of the things on this journey that I am seeking and invite others who are listening to go along is how through these challenges that we have, whether it’s in the world of disability, or if it’s in the world of disability in the greater world at large that we’re in right now, in a way that makes us a better person. And in through becoming a better person, how can we help other people do the same thing. And so in this time of looking forward, and where the times are very uncertain, I definitely draw upon values to help build and be my compass and our organization, the Center for Independent Living North Central Florida has done similar work on itself. And when I look at those values, which our commitment, integrity, caring about people, diversity, collaboration, I don’t know where exactly the situations that are going to be and unfold in 2021 confident to say there, there are going to be challenges that are going to really test us. But when I look at these values, it makes it a lot easier for me to meet these uncertain times, with a sense of confidence, and a sense of clarity, that clarity that I am seeking to have every day, but especially now in a new year. Looking forward. Having clarity during uncertain times. Sounds like a paradox. But I do believe it is a reality. If we have these core values to matter what’s going on in the external situation, that these values can be a really important compass for us to say the right things and do the right things that are needed to help us be a better version of ourselves, and how we can be a contributing member to the society in the world that we live in. In this podcast, we’re going to be introducing to you and have introduced you to several people that deliver important services to improve and empower people with disabilities to live independently. We really find that this is a very important part of the podcast that we really want people to get connected more to independent living services, not just at our center, but in all centers. In the state of Florida. There’s a center that serves you, no matter where you live in the country, we have centers throughout the country. And we really want to make sure that people are aware of these services, and how they can benefit them to live the independent life. We’re also diving into many of the different complex issues that impact people with disabilities. We’ve already talked about intersectionality, we talked about the legislation and policies that are involved around with disabilities. And we’re going to be talking a lot about how the COVID pandemic impacted people with disabilities, health, transportation, housing, employment, education. There are a lot of complex issues and forces that are out there. And we are going to be unpacking these things, to better understand them and to also do better in these areas. Along the way, we’re going to be really diving into the values that it really takes to be able to make the change that we want to see within ourselves and within the world. And we’re going to do this by really talking to a lot of different people from different backgrounds that can offer up their wisdoms to us so that we can be the better version of ourselves and that we can, you know, help one another more than ever we need to be united during these times. And disability is that space where I fully believe that we can make that impact. I’ve been witness to our organization making many different changes throughout this year. We’ve been tested in many ways that were unforeseeable and through the adaptability of our organization, largely due to the hard work, skills, determination, heart that our staff has, we’ve been able to adapt and overcome many of the different obstacles that have been thrown in our direction. We’ve been challenged in so many different ways that were unimaginable, because we have met similar challenges and having disabilities and having to learn to work with one another, we’ve been better able to meet these times, I believe, because of it. So we’re going to close with a with a quote that is, I think, really relevant to these times right now, and comes from us from Marcus Aurelius, who talks about adversity is a part of life, bad things, disasters, disabilities, disease, war, conflict, inevitably, are a part of life. And one should not hope and pray that these things do not occur, but rather, that when they do occur, that we have the strength of character, to endure through them. And this really relates, I believe, to his other quote that we started this series out with, which talks about the impediments to our action advances our action, which stands in the way becomes the way, the obstacles are the way. And I believe this, these are the way to be in the better versions of ourselves. Because we are challenged to grow, we are challenged to be better. And we are required to then have the responsibility of helping others who are not in a place right now that we are in to be able to serve others. So I say to you all I hope that we can have a year of unity, have a year where we can collaborate and come together and to meet many of the obstacles that are in a way and in the process, be the best version of ourselves and build a better life for everyone. Thank you and I look forward to continuing our conversations. Onward and upward.

Gerry Altamirano is the Inclusion Strategist at Tangible Development. He also serves on the Board of Directors for CIL. On this episode we’ll be unpacking a lot of terms and concepts that are used in having conversations regarding equity, diversity, intersectionality, and ableism. 

Contact Gerry Altamirano: gerry@tangibledevelopment.com

https://open.spotify.com/episode/79POmb9bVWt3LIvX6EFrpp

SPEAKERS

Gerry Altamirano, Tony Delisle

Tony Delisle  00:00

Hello everyone, and I’m very excited to bring you this podcast, we’re going to be talking about issues in this podcast that are going to really set the stage for some of the discussions that we’ll have in some of our episodes regarding equity, diversity, disability, intersectionality, ableism. There’s so much that is going on in these areas that it’s important for us to learn as much as we can, and to do better. The independent living movement has been involved with these areas and issues and aspects and conversations for quite a long time. In spring 2020, and into June, these issues really got amplified due to the police brutality on people who are Black, and it really culminated with George Floyd. The amplification and attention that is going on nowadays into these issue areas, and how it impacts the independent living movement and philosophy is something that is very important for us to really understand know where we’ve been know where we are, know where we’re going. Hello, everyone, and welcome back to another episode of The Independent Life. I am very excited about today’s episode. And in this interview, we talk with Jerry Altamirano. He’s the outgoing Assistant Dean at the University of Florida, Dean of Student Affairs and director of the Disability Resource Center, and we have a conversation with him that really unpacks a lot of the terms and concepts that are used in having conversations that are regarding equity, diversity, intersectionality, he really does an excellent job of setting the stage of what this conversation looks like what the social cultural normative, added today about disability, from his perspective are, how do we impact those social cultural normative attitudes as people with disabilities, what we can do as people with disabilities, to protect ourselves from those negative social, cultural and normative attitudes, and how to really live a meaningful and happy life, despite and perhaps does not be in the world that we would want it to be, but certainly a world that we can help to impact and shape. But it starts with us. So I really look forward to you hearing this interview. And very excited.

Gerry Altamirano  02:26

Sure, thank you so much for inviting me to speak with you today. Tony, always appreciate our chats. Man, my name is a little bit hard to say my name is actually Geraldo Altamirano. But if you can’t roll your R’s, you can call me Jerry. I currently do serve as the Assistant Dean and Director of the Disability Resource Center at the University of Florida. However, I will be transitioning from my role in the New Year in 2021. You know, I feel like it’s a time for new beginnings and new opportunities. So I’m going to explore a career in diversity consulting with an amazing firm called tangible developments where all I’ll lead sort of inclusion strategy, so really continuing my work with an advancing access and equity initiatives within higher education and broadening that into other organizations, and the nonprofit public and private sector as well. So, um, that’s a little bit about my sort of professional identity. I am a first generation Mexican American queer Latinx, ChicanX disability ally coconspirator, I would describe myself as. Originally from Texas and have had a sort of a career in interrogating social inequities and working towards advancing opportunities for historically underserved and oppressed groups. That’s how I would describe sort of myself. So it’s starting out from teaching first grade and and working with dual language Spanish speaking students then pursuing sort of Graduate Studies in rehabilitation clinical counseling, and working with folks in the supported employment sector helping folks with disabilities acquire gainful employment, doing evaluations of and then moving into sort of higher education administration within Disability Services. So previously worked at Texas State University where I am predominantly worked with Latin ex Hispanic community, and helping students understand, employability and understand how their disability may impact their their, their engagement with with academics and then and then post grad as well. And then most recently moved to Gainesville back in 2017, to to work at UF and it’s been fantastic here. I love my experience. There’s so many brilliant students and that’s where I was able to connect with CIL and I really believe in disability communities across sort of areas working in partnership, so whether it’s higher education and in the Gainesville community and or other areas. So that’s how you and I sort of got connected. So that’s a little bit briefly about me. And again, I’m excited to to speak with you today.

Tony Delisle  05:19

Well, your experience explains why you are so wise. Yes, we did meet through you coming on in 2017, the University of Florida, the Disability Resource Center there, we’re gonna provide information and links in our show notes to what they’re all about. And the wonderful things that they’re up to, the staff there is amazing. You work with a great team, Cypress Hall, obviously very innovative residential hall that everyone needs to go learn more about. The Disability Resource Center, I believe at the University of Florida course, I’m biased, as a gold standard out there. And Jerry, so yes, coming from the University of Florida, myself over here to the Center for Independent Living, I did how already know many of the people there that the Resource Center before you got there, the center, before I got here, already had a relationship with the DRC. So this relationship was here before you and I got here. And we really I think, have helped to build off of that. And I remember when you first got here, and I would, I think our first experiences were largely, you know, we would show up to the same events together, you would have events sponsored by the DRC, there, sometimes I would be invited in to speak or you know, those kind of things. And, and that was great. And then you approached me and said, I want to come to the center there, Tony and take a tour and see what it’s all about there. And I was really happy to hear that. And you came over here and we did a tour and you were just so present and authentic. One of the things that I really took away from that conversation among many of the other things is there was a moment there where you you spoke to me with a very raw conviction and heart about wanting to serve the community. And kind of like as you’re saying, kind of leverage even academic resources, other community based resources to develop the synergy to solve a lot of the difficult issues out there. And I want to acknowledge you for that, like it was like your heart was really speaking. And I really connected with that. A year or two after that passes. And we’re again, you know, kind of here and there seeing each other at events, and we happen to recruit you onto our board, and you’ve been serving on the board of directors for the Center for over the last year. So bonus, we get to, you know, have your brilliant wisdom here to be brought to bear on some of the things that we do here at our center, and opportunity for Tony to have more conversations with Jerry and learn more and be a better person through those kinds of experiences. Then, this past spring, in May and June, a lot of the events of the you know that we’re going on, that we’re really pushing to the forefront through the police brutality of people really brought to the forefront, and amplified a lot of the things that we’d already been talking about, you know, in terms of Equity, and Diversity and disability, and all these other kinds of things really was highlighted. So due to that amplification, the Independent Living network, started a workgroup, an organic workgroup, volunteer base, started meeting bi weekly to really take a look at where we’ve been, where we are, where we want to go in terms of equity, diversity, intersectionality, and all these things that are so very important. And we need to take action about not just give lip service to and we’ve been meeting, you know, since basically end of June, July, and having conversations and you’ve shown up in these conversations, and have just dropped pearls of wisdom that has really helped to guide our efforts in this workgroup and the lens that we’re working through to really reflect and research a lot of these areas so we can learn and do better. In all of that work. There’s a lot of terms, there’s a lot of context in which conversations are have, there’s a lot of conceptual frameworks around this discussion that’s had, I was wondering if you can help us unpack for many people that might not be around this conversation, or new to this conversation. Or even that, you know, for myself, I’ve been around this conversation for a while, but I’m still continuing to learn and have a long way to go myself in learning a lot of these things that I think are just fundamental to be in the conversation. So I was wondering if you could help us you know, unpack, you know, some of the things that we need to know, in order to have a meaningful, authentic and real conversation that’s going to help us learn and help us be better.

Gerry Altamirano  09:29

Sure thing. Yeah, I think it’s really important to sort of zoom out and really, and really understand what it is that we’re talking about. Think, you know, diversity, equity inclusion, these terms are often used interchangeably, but they are not the same. They don’t mean the same thing. Right? Um, so there’s always this really great analogy that I that I like to use and so diversity asked who is sitting at the table, right? Whereas equity asks who is trying to get a seat at the table but cannot. Meanwhile, inclusion asks whether everyone sitting at a table has had a chance to be heard. And finally, Justice asked whose ideas will be taken more or less seriously, because of who is represented at the table. So justice really means is more into power dynamics and and these these isms sort of that exist social stratification that puts people in different hierarchies, right. But diversity work has to connect race consciousness, which is an awareness that race has a significance in shaping people’s life chances, which includes our access to opportunities, resources, and decision making, right? So diversity means really seen everybody for who they are. racially, they’re their disability identity, perhaps, or gender, and sexual identities as well. So diversity really asks us to recognize the individualism of each person. Because we know that our social identities and how we are sort of situated politically, socially impact our opportunities to engage in certain spaces and receive access to resources, I think for for you and I, who do work specifically with, with disabled communities, equity is really important, right? equity, equity, situates, the reality that we are born at different starting lines, and our abilities and our access is not equal, right. So equity centers the unique needs of every individual. And, and understands that, you know, someone might need a certain adaptive technology to be able to, to engage in a way that that works for them. And, and, and whereas somebody else may not need that adaptive technology, right. So I think folks often get stuck in the idea that equal is what we should be based basing our work on, or equality is what we should be basing our work on or, or our decisions when it comes to, you know, social progress. But the idea of equality is moreso of a fallacy, because we know that we’re not equal in the sense that we don’t have access to the same resources. You know, our social and political conditions are different. generational wealth is different. Um, so we are equal in the sense in the sense that we all possess an inherent human integrity and value and dignity that that that we must uphold. But, but our access to, to resources or to engage in certain spaces is not equal. So that’s why we have to sort of situate and contextualize equity. And in doing that, we have to understand that things don’t exist in a vacuum. Right? There’s a there’s a, there’s a historical and political story around everything. And so that means really us asking really critical questions and interrogating Why is is that that we do the things that we do and, and and what are things that we’re sort of replicating and reproducing that are rooted in something really harmful? Yeah.

Tony Delisle  13:42

So you said a lot there. I’m trying to take notes as you speak here. One of the things I wanted to ask you, I’m going to go back to the table. What if, you know, a group or a person is not at the table? Seems as though the people at the table have the power to invite people to the table? How do people who don’t have that power or influence or know the people at the table get invited to the table when they don’t even know the people at the table?

Gerry Altamirano  14:09

That’s right, yeah, that’s exactly right. So that it takes it takes folks who are in positions of power, takes folks who recognize our privilege to to yield their privilege and, and invite others to the table. Right. And through that, that means taking a taking a step back, and relinquishing a little bit of control. That’s the thing about equity work, right. In order for us to be equitable, you have to give something up or somebody has to give something up. that’s a that’s a piece that we don’t often connect. Um, so I mean, just like Thanksgiving dinner or or any sort of celebration, right. The more people you invite to the table, the more you have to sort of ration and and divide the pie. But that’s what makes it right. But it takes folks in positions of power to recognize, hey, I don’t know if I should be really leading this space that is connected to enhancing services for for Black folks in my community, when I’m not, I’m not African American, or identify as Black and I don’t have sort of that experiential knowledge. So let me invite somebody to help lead this initiative, right? Someone who, who, who understands that. And so, yes, everybody, especially, especially as I think we are the most, we and I, I speaking, we in the collective You and I, who engage in this sort of disability advocacy work, inclusion work, and others, like us, who, um, something within us, there’s this sort of sense of service leadership or do good or wanting to sort of impact social change, right? Something whether we’re personally connected to having a disability or know someone who has a disability or, or any other sort of marginalized identity, or like myself, and am a member of another oppressed group, right. Um, we sort of want to engage in this work, but we’re not above falling into this sort of same same trap of not seeing how we also have privileges and how we may have, there’s just so much oversight into, into how we approach our equity work, right. Um, I think I think folks have, like, for example, people in healthcare fields, who have this sort of altruism, our sense of doing good to other for others, sometimes blocks, our ability to accept the possibility that we have internalized biases, and prejudices that impact how we view others and ultimately impact our job. Right. So I, I have to constantly interrogate and check myself, and I encourage others who do this equity work, inclusion work to do the same is to, we often believe that because we’re sort of engaged and part of this, this effort that we are maybe impervious to, to having biases, are our internalized really harmful ideas about other groups, right, whether it’s, you know, anti-Black racism, or, or even ableism or or, or an approach to disability inclusion, that that is sort of rooted in something that’s more harmful, like, like charity work, or sort of this sympathy approach to our work, right? So there’s, there’s just a lot of caution that we have to have, and, and interrogating, why are we doing the things that we do? And how can I do it in the most in the way that that maintains the human dignity of the people that I that I’m that I’m serving and working in community with? And also how am I interrupting the the reproduction of oppressive practices or policies or bureaucracies in the work that I do? That’s so tough, especially for for us in this in this work.

Tony Delisle  18:32

Sure. So in going along with that, in self interrogation, you know, goes back to the question, so I am at a table, I do come from the health field, I would like to believe… No, no, no, I’m not taking it as defensively at all I’m checking all the boxes are confirming what you said like and very altruistic and lead with my heart often recognize I have these blind spots. And so who is it I’m not inviting to the table, that I should be inviting to the table thinking I am inviting all the right people and you know, things and everything else like out there, I find I do have to interrogate myself as you put it. For me, it involves being very conscious of my thoughts and stepping out of my stream of thoughts. And being an observer of those thoughts and listening to those thoughts and not necessarily being attached to those thoughts in terms of thinking I am those thoughts, I am observing those thoughts at this point. And for me, it’s a bit of a mindfulness approach to it, but also a big check your ego approach, you know, to think that, you know it all, I’ve arrived, I’ve got this, you know, into me, that could be the most insidious thing that’s inhibiting growth is those of us that are, you know, doing this thing, but thinking that like we’ve arrived to a destination, an awareness that we got this and therefore don’t have these blind spots, but we do. To me, so it’s part mindfulness, but also ego checking, big time. And that is hard to do. It’s humbling, you got to be vulnerable, you’re facing some fears, and having to then look at an examine to like, what are the stories I’ve been telling myself about myself, or others, or the way the you know, life is or society is, and really kind of challenge those stories? Where do those stories narratives come from? You know, and so, so, so I’m gonna ask you, what is some of the methods you use to interrogate yourself to make sure that you know, you’re also kind of being aware of your own blind spots that you might have?

Gerry Altamirano  20:38

Yeah. I really appreciate this conversation, Tony, because it’s so easy to right, we’re all human, we’re all shaped by the same social and political conditions, right? So if I’m shaped in a world that is racist, and ableist then guess what, I will internalize prejudices and biases that are abliest and racist. And I have to. And so that’s how I check my ego, right is knowing that. Well, you know, some people are like, Well, I’m not I’m not racist, or I’m not ablist. But we, we are, we are in this, this, um, we’re in the same environment, right? And, and it’s, and it’s natural to sort of adopt these ideas, either, you know, subconsciously or consciously and then enact them. So, I check myself, my ego by one, surrounding myself with really smart people, right? surrounding myself with people who challenge my thinking. There’s this saying, It relates to fitness, and you’re in that that health world today, so maybe you’ve heard it, but I think it’s something like, if you’re the most in shape person in this gym, then maybe you’re in the wrong gym or something like that. It’s along those lines. Yeah, yeah. Right, you’ve sort of mastered or you think that you’re, you’ve figured it all out. And you’re in the wrong space, you’re now you’re in an echo chamber, or you’re right, you’re like being there because people sort of exalt you, but maybe you need to enter different spaces. Right? Um, and also being community with a lot of different groups, because you might, you know, have a lot of knowledge in a certain space. Like, for example, me Who, who I work with college students with disabilities. College students with disabilities are not the the monolith of the disability community right at large. They’re there, they don’t represent everybody in the disability community. In fact, they represent some of the most privileged folks with disabilities. So if I’m not engaged in with the communities, like those involved with CIL, then then my, my concept of Disability Justice and disability inclusion is distorted and completely warped by by the the constituents that I serve and those that aren’t in community with now, right? Because while they’re thinking about, oh, well, the importance of it acts as an accommodation for physics or an Orgo Chem 2 exam. disabled person, and the CIO community is thinking about how am I going to pay my light bill? Right. So So there there, there are so many different privileges and and access points within each of our groups, right. And so I think having a really global perspective of, of what justice looks like, involves us equity workers, inclusion workers, however, I describe ourselves being a part of all of these different communities and understanding how other social structures and structures and isms impact the work that we do. Right.

Tony Delisle  24:18

So going back to your isms, right there you throughout ableism, I was wondering if you could define for us what ableism is.

Gerry Altamirano  24:24

I like I like sort of illustrating a picture, right? Because I’ve heard folks, folks sometimes get get caught up in in definitions there, which I think are sometimes even just more harmful. Yeah, um, because then then then we’re sort of trying to hold true to a concept and not the connection to that lived impact, right. So I can describe how ableism impacts people. And I think that’s what a lot of people can understand the most because sometimes when we get caught up isms like racism, sexism, classism, all of these isms. And people are like, well, I don’t really know what that means I can’t really define it. And then someone comes in and gives you a definition. And like, well, I still don’t really know. But we are impacts people, right? That’s what’s important. And so ableism impacts folks, by disabled folks, specifically, by creating a society or an environment that, that caters to a default to a certain embodiment, right, a certain lived experience that can easily navigate physical technological spaces. Without sort of a second thought, right. And so it’s, it’s, it’s a devaluation of disabled bodies, whom are maybe just divergent in their embodiment, and not necessarily unable, or don’t have the capacity to, to produce or to perform or to, or to participate in a certain space. But the environment itself is not created for them. It’s not, it’s not considering their diverse embodiment. And therefore defaults to the dominant group, which is the temporarily abled body folks are this this norm, right. And so what happens is that when there is a person with a disability, let’s say a chair user, I’m in an environment where there are no ramps, or there are no us elevators to help them navigate a building, the environment creates the disabling effects of their impairment of their embodiment. And when you exist in a, in a society that sort of defaults and favors, um, the dominant group, those that aren’t chair users, then we fail to, to intentionally design spaces for, for the variation and, and the nuance of so many different people. Right, so then we leave them out, we exclude them. And through that other things happen, right? So we, we sort of become our mirror our attitudes about people, and our ideologies about life, and who has value and who doesn’t become mirrored, and reproduce in our physical spaces and our policies and practices, right? And then, and then our rules of Oh, well, you have to be physically present at work, or you have to, and that who does that exclude right? People who aren’t able to physically transport themselves or who can work remotely and do their job, but so so all of these, these phenomenon that happened are because of the the exclusion of the validation of disabled folks.

Tony Delisle  28:18

So so given, you know, what you said there about how, you know, ableism can really help shape the paradigm of how, like a society may view people with disabilities. And there’s other I’m sure, intersecting forces that are doing the same thing. How would you Gerry describe from your own perspective and lived experiences the social cultural normative attitudes that society has about disability if you had to like your try to explain what you think that is, from your point of view?

Gerry Altamirano  28:55

I mean I think I don’t I don’t even have to philosophically take you through a through my rabbit hole of that, I think, I think we just have to look at at the facts, right. And the facts are that there is such a low employment rate of people with disabilities, right? The facts are that 50% of folks that are killed by excessive police force are people with disabilities who are also Black, right? There. The facts are that people with disabilities often have to jump through so many bureaucratic hoops to to receive services or funds by the government, right. So the sociocultural implications of how we treat people are there or how we treat disabled people specifically are visible. Yeah, right. Yeah, so that, that society does not value Yeah, um, folks who exist differently, right? And that’s that’s what it is. And that really ties into that I think you maybe you’ll you’ll ask me eventually, how to other sort of isms you mentioned earlier intersect with this. And it goes, it goes down to what does society value right? So we’re saying we’re asking ourselves, well, society does not value disabled people. Why? What does society value? Well, ask ourselves, what do we value look at? Let’s look at our, our current, social political interest. We value money, revalue economy, we look, we value production, that’s what our society values and that’s what our society cares about. That’s why folks are in such a rush to return to quote, unquote, normalcy, to reopen businesses and to reopen schools, regardless of what the impact is on human lives. Right? Knowing that over 200,000 folks have died from COVID-19,

Tony Delisle  30:58

300,000 as of now.

Gerry Altamirano  31:02

Again, knowing the facts, we say, Yep, that’s fine, we still need to return to business because we want to make money. So there has to be this other analysis into Well, why do our disabled people, undervalued or? Well, because of capitalism, because capitalism consumes our interest in our priorities, we want to make money. And there’s this belief that, well, folks with disabilities aren’t able to produce as much or able to work as much and and that’s, that’s the most insidious thing of it all.

Tony Delisle  31:38

Yeah, we find that all the time. 

Gerry Altamirano  31:40

Because it suggests that in order for you to have value as a human being, in order for you, to be important to our larger society, you have to be able to make money, or produce or, or, right, that’s what they care is your your, your value is equated to, to your to your output. There’s a lot of isms and systems of oppression that we have to consider as we think about the liberation of oppressed groups of advancing disability rights of events, advancing civil rights, right? Because if we fail to, we don’t really dig deep and understand how, how these these structures impact and sort of reproduce and maintain the oppression of people with disabilities, right, and continue to keep them down, because we’re only talking about disability inclusion, and we’re not sort of invoking and analysis of capitalism or racism, sexism, as we’re thinking about disability inclusion, there’s a lot of things that are left unexamined, that does more harm than good.

Tony Delisle  32:53

Absolutely. And go into those values. It’s, it’s interesting to when capitalistic private for profit, free market does do innovations, because they’re kind of required to make sure they’re accessible for all people disabilities, we find that these kind of universally designed, you know, changes are something other people without disabilities really want as well, and often sometimes can help their bottom line out. That’s one, but to go into your point, you know, valuing, you know, who are we as a country? And what do we value? I think there’s also a kind of contradiction or conflict between the ideals of a meritocracy, you know, the rugged individualism, you know, you got to pick yourself up from your own bootstraps. And then there’s also these other ideals that talk about the Commonwealth, and the common good, you know, of our country. And so there’s a lot of that said with that, too. And so I almost feel like there’s a moral contradiction in there somewhere. And so I don’t know if that is also kind of like something where we can look at, you know, how do people with disabilities really thread that narrative to where we can maybe create a society that’s more just. And also, at the same time, people as individuals, you know, have that ability to fulfill their fullest potential live their lives in, you know, to whatever extent possible, they would want to, I don’t know if you have some thoughts on like, you know, where people with disabilities can really work to thread the needle there in terms of carving out a life or at least advocating for a system that does some of those kinds of things. If you think that is a good way.

Gerry Altamirano  34:35

Yeah. So many deep questions Tony. I think we are so stuck in this matrix that sort of decides what we value right? Not only even our larger social system or our country, but even ourselves, right? Because I think you know, James James Baldwin talks about the law issues with racism in America or is a reflection of the inner turmoil of the individual. Right? And so if our larger country beliefs are only values production, you know, meritocracy, like you mentioned, what what do we individually value? I think sometimes we believe that we believe the hype, we drink the kool aid, and we work towards that, that goal. And and even sometimes, people from marginalized groups oppressed groups to say, Well folks, buy into that narrative, and then internalize these really harmful ideas about themselves and strive for this illusion, which is it’s, it’s, it’s a, it’s an illusion that we keep investing, and it’s not real, it’s not real, this idea that in order to be happy, or in order to be fulfilled, you have to be so successful and have everything that you need and be self sufficient. And that doesn’t always bring happiness. And I think when society tries to push people towards this idea of independence, self sufficiency, it fails to really understand what is it that really brings people happiness, and that’s community. And that’s, that’s been with your loved ones and finding purpose outside of your, your job, right? I think, not to get too, too radical, but not everybody needs to work not ever I mean, I believe in leisure and and that, you know, we’ve evolved as a species so much that these technological advancements have allowed us to not have to, you know, have a warehouse of workers or these products, because there’s, there’s machines that do that now, right? So that so we shouldn’t be allowed to engage in more leisure and more pleasure and in rest, rest is radical. But we don’t allow ourselves to because we, but we bought into the idea, and we’re invested in the illusion that we must continue to produce, produce, produce produce, right? We must work, work, work, work work, right? To the point that we almost feel guilty when we’re not, right. We like this sort of dissonance and an uneasiness right. Yeah, when you’re just sitting, and just just breathing and existing, right. And so I think that how disabled folks can and other communities can resist sort of this, sort of use our bodies as as political resistance to this pressure of capitalism, more pressure of production and meritocracy, is to be, and that’d be enough and to find fulfillment and community with within the people that we love. And that in itself is something right. And I think that that’s what I appreciate the most about disability analysis about our place in the world, is that it forces us to, to challenge this superhuman hyper producer, independent superhuman fallacy that we’ve been bought into, right that we want to sort of enhance everything about us, you know, take this new sort of espresso shot that gives you four times caffeine to be able to work more or, you know, all of these to be able to put in or move your eight hour day and to 10 hour, you know, all these things that are harmful to our bodies and to deteriorate us really, and don’t, don’t bring happiness at all. But I think the most insidious part is that we bought into the idea that working, working working brings happiness, so almost almost as if it’s our only way to feel like we have purpose. And that’s not true. That’s not true. Yeah, there’s this really awesome video with Judith Butler and disability activist her last name is Taylor. The Unexamined Life, right, is titled. They talk about how having a disability interrupts this idea of self sufficiency, because it’s not true, we need other people, right? And so, having needing a caregiver or needing needing someone to, you know, help you with your daily activities, or, or what have you, or to read a document or anything, is the most accepting that right, is the most human thing that we can do. Because we, we cannot exist without having somebody to support us or and not even in like the moral and psychological sense but but as a human species, we’re social. So So this, this push this constant push to be independent and to self produce and self sustain is sort of antithetical to the idea of, of humanity, right? And that’s why we see a lot of changes in mental health and happiness and and how people sort of gauge their own self efficacy because It’s like the self reliance is is the goal? And I don’t believe it is. So going back to your question, how do we challenge this, the more that we can rely on others, and be interdependent, that would be the goal, the more that we can build co Ops, and hey, Tony, you grow your carrots in your garden, and I’ll grow the tomatoes. And we’ll share that the more we build those kind of spaces, where we rely on each other, that’s how we resist.

Tony Delisle  40:45

You’ve pretty much answered our, our closing question, there like, what do you think about independent independence, and again, I learned so much from you every time you share with us and and, you know, as I’ve shared with you before, in talking about this, Stephen Covey, Seven Habits of Highly Successful People does talk about this, he talks about, you know, the lowest form is dependent, of being the next the highest would be independence, but the highest is interdependence with one another, that symbiotic we can do more, the whole is greater than the sum of its parts. And from an evolutionary standpoint, and when they examine the evolution of human beings, and I love what you say about can we just be human beings, not human doings, right. And so I think it goes to your point of like, just be in the present moment and exist, and there’s a lot of fulfillment there. And so, from an evolutionary standpoint, many people point to the fact that we are wired, evolutionarily to work together, because that is the way we survived. We are not the strongest animal out there, we are not the most, someone’s even say, not the smartest, they throw us out there, you know, in the elements and see how long by ourselves, we will survive, we won’t, we need each other, we’re wired to belong to one another. And now, you know, after 1000s of years of evolution, here we are, we still these primal needs, the human brain hasn’t evolved since many of those times. And so we still have this need for connection. For belonging, the biggest fear we have is rejection, and our biggest need is acceptance. And so I think there’s so much that you said there that goes towards what you say to is fulfillment, you know, how many people do you know, that are quite wealthy materialistically have the, you know, alphabet soup after their name, the athletic trophies or accolade, and the greatest social networks and everything else out there, but when you get to know them, they’re not happy, they’re not fulfilled? You know, society’s told us, you know, we need to accomplish these things in order to be successful value, but and one of the things that we’re aiming to do with this podcast is to really what does it mean to be the best version of yourselves? What does fulfillment look like to you? What does a meaningful life look like to you? You know, how can you, you know, achieve that? What does it really mean? Are you buying into this narrative, like you’re saying, that society that says that this was what it is, but when we look at, you know, your happiness tends to be something that deep happiness, not the superficial pleasure, kind of happiness, but the authentic joy, happiness, peace, and altruism service to others, is what a lot of people reported on living a fulfilled life. There’s a country out there that instead of a gross domestic product, they have a gross domestic happiness scale, throughout the day with that country, but anyways, I really appreciate you, you know, kind of really illuminating those things there. So, you know, this leads me to that asking you, if you had to talk about, you know, how the what would, you know, ideal, you know, social cultural narrative be about people with disabilities, you know, if we were working towards trying to really have an impact on what that socio cultural narrative is now, given what it is, you know, has been, where we were, where we are today, where would you want to see us really, like move towards impact grow to be if you had almost explained the utopian, you know, is kind of way that, you know, society views and treats and, and really, you know, sees people with disabilities?

Gerry Altamirano  44:17

Yeah. Um, it’s tough, because I think that that sort of, Northstar is always sort of shifting. I think, I think I think our needs shift a lot. Right. And, and I think more so than, and it’s tough, right? Because I think, again, those of us who do who do this inclusion work, I can’t help but feel that part of it. Part of our work, or sorry, part of our essence, is sort of, especially me because I’m a romantic. I am a renaissance man, and I’m a romantic and I have to say Often check my naivete, right. And this sort of delusional optimism, right? That keeps sometimes focus on wanting to change the hearts and minds, right? And sort of Yes, build this new socio cultural narrative or change, change society’s interpretation of certain groups, right? And we know historically that that doesn’t always work, right? So we can pass laws and the ADA or we can, we can work in official ways, right? And people will still not change their hearts and minds. And the narrative doesn’t shift. And people continue to suffer and struggle. So I think more importantly, is how can we constantly connect this sort of theorizing of Gosh, what would the world look like, without these isms? Or to the struggle, we have to connect it to the struggle? Because as you and I sit here and have this, this really sort of introspective and philosophic conversation, there’s disabled folks out there without, you know, food on their table, who are underemployed, and they’re not engaging in these sort of meta conversations. They they want to eat, they want to work, they want to have their basic needs met. Right. So there’s also that conundrum is, is ensuring that we’re always connecting our theorizing, and our ideas of possibility and future into the struggle to the currents of what’s going on on the ground? And how can we make micro changes that will impact the larger system? Right? So how can we impact policies and equitable move towards more equitable allocation of resources within our local or local government? And in our larger government? That’s, I think more of the questions that we need to ask ourselves, because to be frank, as I get older, and move towards more into more, the spaces that champion diversity and inclusion differently. The mirage sometimes stays the same, right? And that we talk about the feel good piece, but the structure does not. And to be to be honest, sometimes I become so cynical that I’m like, Well, you know what, I don’t care if people value me for being queer and brown, or let Latinx I just want to be treated with human dignity. Right? That’s it? Yeah. So and I’m sure you know, then disabled folks. Similarly, you know, some might be like, well, that might be nice if they embrace me and affirm my identities and celebrate my diverse embodiments. But I just want to give them dignity, right? So I think connecting that and pushing one, galvanizing our disability community to know that they have power, and then they have expertise to shift and shape the world as important, right, educating and helping our people, our most oppressed groups, learn how to read the world and interrogate these systems, right? How we should not accept things to be we’ve, we’ve bought into this idea of scarcity. We…

Tony Delisle  48:03

Big scarcity mindset out there.

Gerry Altamirano  48:06

Exactly. So challenging that relying on one another, finding our political voice and using our bodies as political tools. That’s I think more important in changing access and equity now, then then sort of theorizing a new idea of how people should should be regarded because, you know, history tells us that that that doesn’t always work. No we can we can, we can champion this equality chant and take to the streets, but sometimes folks will keep believing what they want. So let’s change our structure to make things more equitable so that we can all thrive and not just survive. 

Tony Delisle  48:45

So Gerry, going to your equity points and and changing hearts in the area I you know, I’ve been working in and putting so much of my research and efforts and heart myself is trying to correct the disparities inequities that exists, whether it’s health, it was primarily health health outcomes, trying to get people to live longer, less susceptible to chronic disease and quality of life or big outcomes, education, getting kids, you know, graduating youth, teens graduated from high school, that’s a big effort here, we do have an employment services program that’s trying to close the gap between the two to three times unemployment rate that’s seen out there, the housing, the transportation, and Centers for Independent Living are really working hard to close those equity gaps. But when I examine you know, the literature in the areas that again, we have so far to go, these gaps are so wide, but in areas where marginalized groups have had those gaps, shortened or equal, there’s still disparity. So for example, if you know a non white person who got their doctoral degree and is at a high socio economic class, and has these certain health behaviors, and someone who is white, doesn’t have a disability has the same health behavior, same sexual economics if controlling for all these variables, the white person is still likely to live longer. The person who is not white, who is has a doctoral degree and has a high socioeconomic status has the same infant mortality rates as some a white woman who graduated high school. And so like even when we control for these equity of outcomes is looking like that still sometimes not enough to close the gaps into these other areas and many of the researchers point towards, well, they’re, you know, experiencing these other kinds of pressures, stigmas, onslaught of perpetual and consistent, you know, social pressures that are leading to having higher blood pressure and having all these other kinds of things, you know, and then shorter lives. That, to me points towards, this may be a issue of the heart, that the people’s attitudes and beliefs of the narratives that they’ve bought into are culminating in this collective that’s really damaging people. And education is needed, but not sufficient. And so how do we change hearts? But, you know, that’s such a complicated thing, you know, like will we ever fully arrive maybe to that day. So for me, what do we have control over? And what do we not have control over is a very important compass in my life to help guide me in doing things. There’s a quote out there that says, fear of stigma, is part of the problem of stigma, our fear, and for me, I take that is at an individual level, what I have control over is my fear of how other people see me, society sees me all these other pressures that are coming in, generates a more elevated you know system and stress on me. But my fear that I have, because of the stigma or these pressures, is something I can manage and cope with and address and through vulnerability and humility. And then courage ability to act even though you have those fears is something I do have control over. So if I wait for the day that society gets its attitudes and beliefs about disabilities, right to be happy, and free and peace, good luck, man. Again, I think this is this is an this is an infinite thing. So how do I cultivate this sense of inner peace? acceptance, not in surrendering, like, give up the white flag, but like to the isness of this, that is, is out there? So at an individual level, what do you recommend to people in order to live that meaningful, happy, you know, kind of life given that, you know, likely, in our lifetimes, the social cultural narratives won’t change to the utopian perhaps way that’s out there? What do we do as individuals to help us cope in a healthy way?

Gerry Altamirano  52:33

There’s this really great book by Adrian Marie Brown, it’s called Pleasure Activism. And it says that, once we engage in pleasure and love, we become less willing to accept conditions of oppression. Right? So So once you’re, you’re, you’re in community, and you find things that make you happy, and you’re, you’re embraced by people who love you, but love you and see you not the performance, not the production piece, is not anything that you’re sort of doing. Like our when we put on our suits and go to work or, or whatever, but you. You become less willing to, and you become less willing to accept the pressure, but you become less willing to see others who you love or communities that you love, also be subjugated to to violence and to harm. So I would say that similar to how communities of color, you know, black folks, Latin ex folks have survived oppression for centuries, right? How do we ask black folks in our country who have who have survived violence and racism and, and thrive and experienced joy in the face of adversity? Through through community? Right? That’s powerful. So that’s one of the biggest things that I wanted to do in my time here at UF is to create spaces where students with disabilities can be in community with one another, and start to sort of interrogate their assumptions about ability and their internalized ableism. And who has value and who doesn’t and build community around their identity and their group, just to celebrate one another, right? And I think that that’s powerful. And it does something to you, right? Similarly, when I’m in community with a lot of Latinx folks or in queer folks, it’s healing. I don’t know if we do that enough, or we frame that enough as as important in disabled communities, because there’s just so many other priorities, right? It’s like those basic needs pieces, and food, housing, all these things, and then we don’t get to that other part. And just by virtue of, you know, you might be the only person with a unique diagnoses or impairment in your family. And so then you don’t have others like you who sort of empathize and can understand your lived experience and so that doesn’t ever happen there. So transforming our spaces To embrace sort of this, this radical love, I think is a way to, one heal, and to resist this constant force of oppression that wants to destroy us and keep us out.

Tony Delisle  55:14

So a good way to shield us from the negative impacts of the stigmas and normative attitudes is each other.

Gerry Altamirano  55:21

And love, abundant love.

Tony Delisle  55:24

Unconditional love is a very tall calling for us. And I think it’s one that we’re meant to really try to work to achieve and embrace in our life. And that’s where again, I think it really is a hard issue because I really like what you said about being in those circles where they see you and not the facade of you. Again, this goes back to ego who is who is it we’re presenting out to the world? Yeah, and it’s usually the superficial ality, you know, kind of things, but who are, you know, the you the self. And it’s usually a false solidity of a self, a subjective self. A self that’s based on all kinds of stories that need to be examined. Yeah, and perhaps rewritten. So I really love what you say about like, when people can really see you. And the real you, and there’s a lot there of what what is the real you, you know, so I love having those kind of thoughts and conversations. So thank you for bringing that up as well. You know, and as you’re saying this, you know, and so, you know, I am privileged to be able to be in a space right now to have this conversation. And I realized that, you know, kind of, as you said, mentioned earlier, if I’m struggling to meet my concrete needs, you know, of safety, you know, security, you know, where’s my next meal coming from? Do I have a roof over my head? How am I able to care for others that are, you know, in my charge, and I can’t do those kinds of things. We put on a seminar, kind of a talk for people with disabilities, our consumers. And the topic was, you know, intersectionality, and you’re talking about micro macro aggressions, and when we advertise it, and no one came. And I asked people, you know, like, I yeah, we had this thing was to kind of, it’s like, Man, I’m just trying to make it, I’m just trying to survive the day. So I really appreciate what you said, I almost see it as a kind of a Maslow hierarchy kind of thing. So like, once we can meet a lot of these different kind of concrete needs. The next is sense of belongingness, you know, that’s in there. And then it works towards self actualization. And, and that’s self actualization, through being able to have your needs met, to feeling a sense of belongingness to a group is that fulfillment and abundance in life and unconditional love is there. And Maslow says that self actualized people are free of the good opinion of others, free of the good opinion of others. And I think that goes back to kind of what you’re saying about like, perhaps our egos, and those kind of things, and, you know, having conversations that might challenge our ego challenge our identity, especially if that’s who we think we are, you know, these kind of things. I’m setting up a question here to say that in all things that go into having conversations about diversity, and race and equality and justice, there can be a lot of reservations on people because it can make people feel uncomfortable, and going into those spaces. And again, I’m tying this back to our identity and perhaps egos being threatened and challenging our our stories and our narratives and our perspectives and our way of thinking. How do we enter into those conversations with people that, and I’m including myself in here that can be, let’s just say fragile? You know, and there’s a fragility among some of us in having these conversations, who want to do the right thing, but are scared to say the wrong thing. What should we do, you know, in terms of meeting people, where they’re at having those conversations, but also knowing that we need to feel uncomfortable, that’s where the growth happens. So what do you think about you know, trying to make the discussion, one that calls everybody in instead of out? 

Gerry Altamirano  59:00

You know, I think that different groups have different different strokes for different folks, right? And you we all have things that we need to work through. Right? I think that we sometimes want to approach diversity conversations from, intersectionality conversations with let’s get everybody together and let’s just unpack ourselves. Maybe we can work towards that but maybe that doesn’t start like that. Right? Maybe it’s it’s you pull in three other friends who are in a similar identity as you and saying, Hey, you know, I’ve been thinking about, you know, my role with disability or my role in equity work and, and I’d love to just for us to talk and want to hear your perspective. Because then it’s, it’s less also, one less taxing and harmful, often on the most depressed person because they’re the ones doing the educating. They’re the ones sort of leading the discussion and sort of helping the most privileged I understand how it impacts them. Right? So I think there’s a lot of self work that needs to happen for self reflection. It’s sort of like a smaller caucus. So I think like if we’re talking about racism work anti anti black racism, you have to have sort of white folks get together and y’all discuss your stuff and the history of white supremacy in this country and and how does it make you feel and how do you perpetuate racism and and and then saying, Okay, well, how can we be allies or co conspirators in this work? And asking communities of color? Well, what do you need from us? And how can we participate in and listening to that, and being okay with saying, We don’t need you now, maybe you won’t eat them up, or this is the ways that we need you. That’s it. So again, knowing that we’re not saviors, we’re not saving anybody. You can’t even save ourselves half the time, right? So approaching this from a place of solidarity and humility, that allows you to, to also see yourself as an oppressed person. Apollo Fairey talks about, like, what do we need in order to liberate oppressed groups, we need the oppressor to participate with the most oppressed and recognizing that there sort of liberation and salvation is dependent upon the liberation of, of those that they’re oppressing. Right, oftentimes. Same thing with like, disability work, I don’t see myself as separate from the disability community. In fact, you know, my embodiments would, you know, classify myself as as having a disability. I, you know, obviously, visibly, I’m very able bodied. And so when I approached this work, I could easily sort of frame my involvement in this work as separate from or privileged or server or doing good for others, rather than working with and listening to what is needed and being a co conspirator in the fight for justice. And I don’t see myself as separate from because I can’t. If I do, the minute I do, I’m not useful, really, you know, I have to see my freedom and liberation interconnected. And with those that I’m that I’m working in communion with.

Tony Delisle  1:02:06

You know, if you have some skin in it, yeah, you’re likely will be more of a contributor, and co conspirator.

Gerry Altamirano  1:02:12

Closing, sign off from me is that, in order for us to reach any sort of progress in equity work, we have to see ourselves as an active agent in the fight, and co conspirator in the work towards liberation.

Tony Delisle  1:02:31

Well, Gerry, you know, no way, anyone that seen this can see what I meant at the beginning, where every time like you share words and perspectives, you know, definitely challenges and expands my perspectives. And so I really appreciate you, I want to acknowledge, you know, in some of the work that we’ve done together as a recent year, you really helped to broaden my perspectives on how we approach things I know, with our workgroup, we might I’m wired to say all right, we got this group together, let’s start making you know, mission statements, visions, goals, objectives, what are our values? And you really, you know, helped us to say, well, let’s wait a minute here you all are still doing the good work, let’s let’s take some time to reflect. Everybody coming into this group is coming in from different places and different, you know, starting line so to speak and understandings and, and that was really helped us I think a lot and and, you know, your perspectives on independence. And being more about interdependence is definitely, you know, kind of a really great point of view that I think we need to in the independent living movement to really acknowledge as well and see where that place may be in the independence because it doesn’t mean that people without disabilities are interdependent, I mean, so. So that’s another place that you’ve really helped illuminate all kinds of things. And so I just want to acknowledge you, I really appreciate your mind, your heart, your spirit. So happy to have crossed paths with you and look forward to continuing these conversations. You know, knowing that you’re no matter where you go, whether you’re here in Gainesville, or to your next venture, wherever you go, it’s going to be better because Gerry was there and involved. So Gerry, thank you so much for your time. Thank you for coming. And thank you, everyone for for listening and tuning in, and we wish the best for you. And onward and upward.

Gerry Altamirano  1:04:23

Thank you. Thank you. Appreciate you, Tony.

Amy Feutz  1:04:29

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us at cilncf@gmail.com or call us at 3523787474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

Linda Butler is the Director of Employment Services at the Center for Independent Living. Her team works to provide a wide array of different types of services to ensure people with disabilities can find meaningful and sustainable employment. So much goes into a meaningful and independent life in terms of our ability to be employed. Linda discusses these services and why it is important that we focus on ensuring that people with disability are meaningfully employed.

Find your local Florida office of Vocational Rehabilitation: http://www.rehabworks.org/

https://open.spotify.com/episode/1LtxBJ6wKcR2QcbweoKBFC

SPEAKERS: Linda Butler, Tony Delisle

Tony Delisle  00:50

And welcome back to another episode of The Independent Life. And today we are going to be talking about the four letter word, work. Which is a beautiful thing. You’re setting the context for this conversation. I’m going to be talking today to Linda Butler, who’s the Director of the Center for Independent Living’s of North Central Florida’s Employment Services. And Linda has an extensive amount of experience in getting people with disabilities employed into meaningful and sustainable employment. This is one of I consider to be the central pillars for independent living. And it is so important for not just, you know, monetary reasons, but for so many others that I look forward to having discussions about. But one of the things that is going on right now is because of the COVID pandemic, and we’re recording this in December, jobs have been shed at a rate not seen in my lifetime. And since the Great Depression many say. And so this is an issue area work employment, that is always important, as is always relevant. But now more than ever, in this area, we’re facing so many different changes and dynamics that we’ve never seen before. And of course, as we’ve mentioned, another podcast crisis means that there’s opportunity as well. And so that’s also very exciting. And so while it is always challenging and important for Independent Living, to find employment for people with disabilities, it is particularly now during this time, that that importance is very underscored. And I think many people who perhaps don’t even have disabilities can really relate to the importance of, you know, finding, and sustaining employment. So I’m very excited to talk to you today, Linda, so you can share with us some of the wonderful things that you do and how you do it, and how people can get involved. But some would like to start with first, you know, asking you, you know, why is employment services so needed?

Linda Butler  02:54

Well, I think that people with disabilities in general face more challenges. They may be having gaps in work history, you know, they haven’t been able to work for a while. And employers really look at that negatively. So we have to overcome that somehow, people have been out of work for a while. Also, they don’t understand necessarily, these new online applications. This is not necessarily real new, but maybe new to them. And it’s complicated. It’s not like filling out a paper application anymore, and just submitting it. Online applications have assessments with them in so many different aspects, that if you don’t know what you’re doing, you’re faced with a big challenge. Other things like interviews, going into an interview, somebody who is deaf. I had somebody call me one day and said, I’m going to an interview today and the employer doesn’t want to hire an ASL interpreter. And that’s a big issue, you know, do we challenge that employer and that person then doesn’t get the job because the employer doesn’t want to be challenged? You know, what about somebody with a verbal issue, they go into an interview and the employer comes out going I don’t really know the skills because the person couldn’t convey it. It’s important for us to be there to help out in these situations to ensure that the employer understands the abilities that that person has and and the ability to perform those positions regardless of the fact that they may have a disability. And it’s more important now you know, we have COVID a lot of businesses are challenged themselves, you know, trying to keep up. So there are less and less opportunities out there. So it’s it’s more of a necessity right now I think to receive and get help to get through that process of gaining the employment and, of course, then there’s keeping the employment too. But you know, we’re here to, we’re here to help, we’re here to guide people to give them the tools to help them out, I think it’s something that is very useful, you know, to come to a program like this to succeed.

Tony Delisle  05:12

Absolutely. And you bring up so many good points in there. And that started out mentioning all the different aspects that are needed in order to acquire a job, you know, just finding the job, you know, applying for the job, interviewing for the job, there’s so much that goes into that, and that has evolved in short order over the last 10 years. And it’s changed certainly a lot since, you know, I was looking for work 30 something plus years ago, and how it was then to look for jobs and versus now and all the other things that can go into it and the nuances and, and your job is to find people’s jobs, and your you will get a lot. Yeah, yeah, to assist, I find that to be one of the most noble professions that I have come across. And I come from the background of teaching, which I have an immense respect for teachers in the area of public health, and people that try to promote healthier lives for people. I gotta tell you, the amount of respect that I have for yourself, and your staff and others who work to assist people in getting employment is up there with those professions in my regard, my respect. I remember when I, the times where I was looking for jobs, you know, I just thought to myself and looking for a job is a full time job. You know, when you have the amount of people with disabilities that you and your staff are working with, I mean, it is a lot of people that you’re trying to find sustainable employment for. That’s a heavy lift, that’s a big lift. And it’s an important lift, because people with disabilities have an unemployment rate that is consistently two to three times greater than the unemployment rate for people without disabilities, no matter how good the economy’s doing, it’s always two to three times greater. And before COVID, our unemployment rate for people with disabilities was around 7.5%, compared to 3.5% for people without disabilities, the unemployment rate now for the general population is around that 7%. And it’s double now around 15%, for people with disabilities, and my fear is is that that gap could widen. We’re trying to figure out ways of closing that gap. And certainly you are on the frontlines of doing that. Again, I just really respect the why, behind why you all are doing what you’re doing. It’s such valuable and important work.

Linda Butler  07:24

it’s important for people, you know, in general, people out of work, you know, their standard of living goes down. They lose social interaction, a lot of people identify themselves and their self-worth with the job that they hold. Now they don’t have it. Take somebody with a disability who already be isolated, or have low self esteem, and put into that same situation where they don’t have a job, I think it’s even more important for them to get help to be able to have gainful employment. And you were talking about COVID, and how that relates to what’s going on right now. Even how we interview right now, we’ve had to learn the art of Zoom interview, and help people because it’s different, even in this past year, how it’s developed in interviewing and different aspects. So it’s more necessary than ever to, you know, to get support and get that help.

Tony Delisle  08:24

It is those things change so quickly how the technology is changing the way that people get interviewed, because of the pandemic, you know, usually accommodations that are needed for these changes are usually lagging behind. So it’s great to have people like yourself who are so keen on what those accommodations might be as something that is rapidly getting disrupted and changing so quickly. Sometimes there’s accommodations for what is needed to make sure that everybody has access to the those changes, is lagging. And it’s great that you all on the front lines and can catch that and be working with people to make sure that they don’t get you know, left behind. 

Linda Butler  08:58

Yeah, and we found that there have been some ups and downs through this past year. But overall, with our help, we’ve been able to help a lot of people in it, and it really hasn’t slowed down that much for us. We’re really happy that hasn’t happened and hopefully yet, we hope it doesn’t happen in the future, you know where it gets to that point, but we’re still doing pretty good at you know, reaching out there and getting people connected.

Tony Delisle  09:27

Well, that says a lot about the relationships you’ve had with our community well ahead of the pandemic. Yeah, having those relationships with employers and knowing the the areas in the fields and people that you’ve already placed in probably past time. So in working with our consumers, I’m sure has really helped during this time, you know, as well. One thing I want to go back to that you just mentioned is also people in their jobs, in their identity and kind of their self worth, you know, having something meaningful to do and social interactions. Again, going back to the why employment is so important. Certainly for paying rent, for food, for cost of living, or having the money, you know, just to get the bare necessities met, it is tied into our identity. When I meet someone for the first time, I’m often asked, “What do you do?” In most times their meaning work, you know, or school or whatever it is. 

Linda Butler  10:24

Well that’s how we answer. 

Tony Delisle  10:25

It is, right? It’s just so a part of like, our identity, you know, I’m not usually answering it saying, you know, I’m a father, or I’m a son, I’m an uncle. Yeah, you know, not answering necessarily that. And so as a society, and as a culture, it is something that we even identify others on in right or wrong, sometimes place value on those different types of professions. But it really does, I think, say something about our self esteem and our self worth, when we, you know, are contributing to an organization or a business, you’re usually it’s a mission of value that’s bigger than any one person not always feels good to have that kind of a purpose and direction. So…

Linda Butler  11:05

Yeah, I have a consumer who, you know, we’ve worked with for a while to apply for jobs to interview to, all the way through getting a job. And a lot of times she was just feeling down, like, Oh, I don’t know if I can do this anymore. This is this is just too much. But once she got that job, and what that job instilled in her, you know, that confidence, you just see just kind of a joy that I did it. And, you know, this is this is what I wanted to be doing. And now I’m here, you know, it is priceless, it’s, that’s what we want to see. We want to see somebody to the point where you know, they can overcome, you know, all of this doubt, you know, have something in their life, like everybody else does to give it meaning. That’s really great.

Tony Delisle  11:54

It’s wonderful when you can you kind of marry your work with your life’s purpose too, like, you’ve always had a dream of doing this in this field in this area, because it really fuels your fire, and you’re able to do it and you’re able to get paid to do something that you love to do. Yeah, that’s awesome. It’s really beautiful. Not many people can always say that, certainly working here at the center. And I can tell you really enjoy and love what you do. It is wonderful, it’s empowering. And then it bleeds over into other areas of your life, you’re a happier better person, it means you’re happier, better family member friend are more willing to help out others in need and, and to share some of some of that satisfaction that you have. And perhaps even like you said, gives confidence in one area. And then if I can do this, what else can I do? Right? And put yourself out there and try new things and hopefully lift others up as well. Yeah, that’s, that’s wonderful to see, you know how people with disabilities can really just benefit from employment. How do you see, you know, the other the other side of this coin is like you’ve been mentioning as employers, right? And so oftentimes, employers will interview someone with a disability, and will see the limitations perhaps what they can’t do, not necessarily what they can do and their strengths. Again, that’s tied into sometimes you know, how we identify other people. What are some of the things that you and I have worked with trying to educate employers awareness, breaking some myths and all these other kinds of things. When you talk to employers? What do you tell them about the benefits of hiring people with disabilities?

Linda Butler  13:40

Well, I think there’s a lot of benefits. I mean, people with disabilities because of what they’ve had to overcome, sometimes adapt better to changing situations. And they also bring alternate viewpoints, new ideas, fresh ideas, to solve problems that employers may be facing. It also improves morale. I think there’s been studies out there that if you have a person with a disability, working with you, it increases morale. I’ve seen some of this as well, you know, working with people on the worksite and seeing the people around them. We have this one girl who just blows everybody away by how she focuses and just does her job so well and quickly, and everybody’s like, Whoa, she’s Look at her. She’s so good. And then that kind of motivates them too Well, she can do I’m gonna do it too. Oh, yeah, right, exactly. So I think there’s those kinds of things but we also talk to employers about the Work Opportunity Tax Credit, they can get credit for hiring and keeping on a person with disability. There’s also the disabled access credit, which for any of the expenses they incur in accommodations, they can use some of the app for under the disabled access credit. So I mean, there are really numerous benefits. If you’re an employer, and you have customers coming in, if they see somebody like somebody with a disability working with them, the employer kind of gets a boost in credit for, you know, what they’re doing. You know, they’re, they’re helping their community or, you know, being open. If somebody with a disability goes into that store and sees somebody like themselves, there, they’re more likely to stay with that employer. I mean, there are a lot of different benefits for hiring somebody with a disability,ou know, working working here at the center, and with all centers, requiring that the staff and board over half have a disability in our center, I think it’s more like two thirds, you know, you and I get to see day in and day out what it’s like to work in an organization that is such a high prevalence of people with disabilities, like you said, the adaptability, there are challenges that we’re working with. So natural for many of our staff to be, you know, oh, this is how we adapt, we’re going to, you know, kind of look at the challenge, look at the barrier, understand it and look at all the different ways that we can adapt to it and get around it, get through it, get over it, and all these other wonderful things and do it with such enthusiasm, and such with the natural knack to do something like that, because that is kind of how we’re built and wired now is to see, okay, we’re used to this, we’re used to barriers and limitations, but it’s not a, you know, Roadblock, it won’t stop us, we’ll get through it. And we’ll do it with a good attitude. And because it’s kind of something that you know, we’ve gotten over or moved on with, or that’s just naturally how we are in that confidence and that enthusiasm, and that is infectious. I love that you mentioned that because I feel honored enough to work in an organization that has that type of diversity inside of it. And that’s wonderful. Yeah, that’s one of the greatest things about working here is is the diversity here. I think that for employers who have diverse populations, it’s the same thing that their employees really appreciate. You know, where they work so much more.

Tony Delisle  17:10

It creates a nice safe space, and people can be themselves and, and like you said that people in the community, see a piece of themselves are reflected back into them, it’s always a wonderful thing. And to see those kind of benefits that can come from employers. So one of the things that, you know, maybe that we can really kind of jump into here is, how would people get to know more about the services that you provide? So what is it exactly that you know, someone could expect to receive? If they come here, they’re there, they have a person with a disability, they want to work with the Center for Independent Living? What types of services could they look into, that are offered under the employment services?

Linda Butler  18:06

Yeah, for employment services, we offer competitive employment assistance, supported employment, which is more long term, more intense training on the job. We also have other services like pre-placement training to teach people the skills to become employed. These are things like interviewing skills, and how to write a resume and tailor it to the employer. We also have other services, we do job coaching, whether it’s supported or competitive employment, we can do job coaching, beyond the job with individuals. We have for youth self advocacy, which is another course teaches how to advocate for yourself, which is a really great skill, and particularly for the youth who were just coming out of high school into the real world. Learning how to speak up for yourself is very important. And it’s important even when it relates to jobs. So we have different types of things. We have work experiences for the youth are on the job training, where we can play somebody out in the community, and they can get that experience kind of a real life experience to test out whether this is the place for them. This is the kind of work they want to do. It also gives them the skills to eventually become employed in that type of work. We support people also with all of our other services here at the CIL. Anything that they might need, transportation, housing, assistance with getting bills paid sometimes, many of our consumers take advantage of that because you know, not being employed they may not have the ability to you know, meet their bills and we try to help them out with different services as well.

Tony Delisle  20:01

I think that’s one of the beauties of having an employment services baked within a Center for Independent Living, where you have all these wraparound type services that would obviously be needed sometimes if people are looking for employment, they, they might also be needing appropriate housing, they may need transportation, there may be other types of skills too, and that they’re looking for information and referral and, and all these other wonderful things that can get wrapped around into the people that you’re you’re working with. And, you know, so I love that you do the pre employment training, the advocacy, the on the job trainings that are offered, as you mentioned, you know, especially with youth transitioning from high school into post secondary life, the different supports that are there for people to find jobs as well. That’s fantastic. So if people wanted to get enrolled into these services, how would they go about doing that?

Linda Butler  20:54

Well, we’re a vendor with vocational rehabilitation. So they would call their local vocational rehabilitation office and go through the process of vocational rehabilitation, and they can ask for Center for Independent Living services for employment, come back to us, and we can help them out.

Tony Delisle  21:13

Great. Yeah, and we can put it in links into the show notes here about how to get in contact with the Florida Department of vocational rehabilitation, how to find your local office that’s around town. And so how you can meet with one of their counselors to see you know, where the best fit is. And if it’s a center here, we would love to be working with people to find meaningful employment in the community. And you I look forward to having more episodes on the topic of employment and disability, there are so many different areas that we can go into, regarding this topic. And you have so much experience, you’ve spent decades in this area, you’ve worked with so many different types of people of all different types of disabilities, all different types of ages, backgrounds, experiences, talents, interests. What is it that you’ve learned through your work with people with disabilities, that you would like other people to know about?

Linda Butler  22:07

Just that people with disabilities are people. People with all kinds of talents, unique talents, but just people you know, when you meet somebody with a disability, that is a person, take them at that, that’s, that’s what I’ve learned.

Tony Delisle  22:23

I love what you’re saying. For me I received that is kind of tied back into what you were saying earlier is when we see a disability, if it’s visible, we see that first. And there’s so much to a person beyond just the disability. And from my experiences, we’re all more alike than we are different. We have way more in common than we do different. And disability is one piece of that, you know, aspect. And so if you don’t have one, or you do have one, and there’s just so much more that we have in common of this human experience of what it means to be a person, so I appreciate what you’re saying, I’ve received that as a disability. Look beyond it. Yeah, and see yourself in others as well. And, you know, we’re living in a time where we’re looking for more unity, that’s a very important thing to always come back to, I think, is that we have more in common than we do different. And, you know, I think for some reason, we look at our differences, sometimes more. But you know, coming back to home, we’re all more alike than we are different is a very great point we’ll take in the question. We’re asking everybody, you know, as we initiate this podcast, and get into these beginning type episodes, what is to you, Linda Butler, the independent life?

Linda Butler  23:39

I relate to freedom, freedom, to just be. Freedom to get around your community, get around your house. Freedom to make choices, whether they’re good choices or bad choices. Freedom to make it. I just think that if everybody had the same freedoms that you know, it would be awesome.

Tony Delisle  24:02

Freedom, there’s a lot to be said for that. Well, Linda, I want to acknowledge you for so many of the time and effort, your thoughts, your skills, your talent, and your wisdom you put into this job. I’ve seen you dedicate yourself to a point to where you obviously have a lot of heart in what you do. You really care about other people. And you get it you’d work so very hard to lead others, your staff who are wonderful And likewise, are very dedicated and have a lot of hard to find people with disabilities, meaningful and sustainable employment. You’re so creative, too. I wanted to acknowledge your innovation. You’ve come up with like fire college camps, crime science investigation camps, all different kinds of ways of providing very engaging and meaningful opportunities to give people the skills, tools and experiences they need to find this kind of employment. Likewise, in the world of trying to go through all the different hoops that you need to go through, whether it’s administratively, whether it’s in the business community, all these different other moving pieces to your profession, you do with a high degree of skill. And it’s not easy to find someone that has all these different skill sets that are needed to really be blended together to do what you’re charged with doing so well. And so I just wanted to acknowledge you for all those kind of things that you do, and all those different kinds of buckets that are needed in order to integrate into getting people jobs. And so I just wanted to really acknowledge you for all that you do for the consumers. We serve for the Center, for your coworkers and for the community. What you do is priceless. So just want to thank you and acknowledge you for that and your for your staff as well, Linda.

Linda Butler  25:53

Well, I don’t do in a bubble. I have my staff, which are great, and, you know, support from administration too. So it’s not just me.

Tony Delisle  26:03

Well, thank you. Well, again, I appreciate all that you do, Linda, and for those of you that are tuning in and listening, thank you so much, and until next time, onward and upward.

Amy Feutz  26:19

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us at cilncf.org@gmail.com or call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

Mark Bennett is the Principal of Decision Resources Incorporated, a consulting firm that works with leaders and organizations to help unify the organization to achieve superior results, to earn ethical reputations, and to adopt to the changing environments.

With 25 years of experience, Mark takes on a multitude of roles when working with organizations, from facilitating workshops to strategic consulting, and many different areas including mediation and conflict resolution, decision making, wise planning, and creative collaborations.

https://open.spotify.com/episode/2rhk1VuyHDEqRJBvvkAnIH

SPEAKERS: Tony Delisle, Mark Bennett

Mark Bennett  00:00

It could happen any time. Tornado, earthquake, Armageddon. It could happen. Or sunshine, love salvation. It could you know, that’s why we wake and look out. No guarantees in this life. But some bonuses like morning, like right now. Like noon, like evening.

Tony Delisle  00:37

And welcome back to another episode of The Independent Life I am so very excited about today’s interview, we are going to be interviewing many people throughout our episodes and it is only fitting that the first person that we interview here is somebody that our center has been working with for over the last year and a half. Many people with disabilities lead organizations specifically Centers for Independent Living, which over half of the people that work at the Centers and that are on the boards have a disability. So out of the 15 centers, for example, in the state of Florida here, each one of them has an executive director that occupies the position that I do here at our center. And like myself, many of these other directors have a disability and have to lead organizations and are involved with championing the missions and visions and values of organizations and supporting staff and all these wonderful things. And certainly there’s people with disabilities and all different types of levels of organizations that are leaders. And so our guest today, Mark Bennett is an expert in helping to consult with leaders and organizations. Mark is the principal of Decision Resources Incorporated, which is a consulting firm that helps to work with leaders in organizations to help unify the organization to achieve superior results, to earn ethical reputations, and to adapt to the changing environments that organizations find themselves in. Mark has 25 years of experience in working with private businesses, non for profits, governmental agencies, in universities, international organizations, and he does many different things with them. He facilitates workshops, he helps to be a consultant, a facilitator, many different roles that he can play in working with these organizations, specifically in the areas of mediation and conflict resolution, decision making, wise planning, and creative collaborations. Mark is the author of books that are related to these topics. One book is The Art of Mediation. Another book that he has written is The Fieldguide to Good Decision Making of Values in Action. And he has a book coming out in the winter of 2021, which I’m very excited to dive into, which is Unity By Design: The Architecture of Creative Collaboration. Mark is also got his law degree at the University of Texas where he’s also got graduate experience in the field of psychology, as well. As I alluded to, Mark has worked with us for the last year and a half. And he’s helped us go through the process of creating a strategic plan in which we have strategic goals, which we’ve redesigned our mission statement, which we have created principles and vision statements. And one of the first things that he did and working with us was to ensure that everyone in our organization, 35 people, the board, which is another 10 people, so 45 people collectively participated in this experience, it was not a top down approach, which typically happens in the strategic planning process. This involved everyone throughout the whole process, the whole organization, got to give feedback, participate, and really come up with what we’re very excited about in terms of our strategic plan. And one of the first places that he started with us was in our values, what are our values, he really had us look in the mirror and reflect on who we are who we wanted to be. And that is very core to the identity that we are having been embracing as a center. And so I’m just so very excited to bring Mark here to this podcast for this interview. He’s the kind of person that every time I connect with him, have a conversation with him, I end up leaving, feeling better, wiser, perhaps, than I entered into the conversation so it’s always a treat to have conversations with you and communicate with you and now to actually be able to share this with other people Mark. I’m truly honored to have you on here and to go into conversation with you.

Mark Bennett  04:53

Thank you so much for having me, Tony. I’m looking forward to diving in.

Tony Delisle  04:57

So as we record this November 19, 2020. Here we are in the middle of a pandemic. And in fact today, the news of the day is is that we’ve eclipsed a very grave milestone. Over a quarter million people in our country have been killed due to the Coronavirus. 11 million and counting have contracted the Coronavirus. Our society has been really turned upside down because of this pandemic. There’s also 157 years ago to the date was the Gettysburg Address. In there, obviously, the Civil War, Abraham Lincoln, and today we still are struggling with equity across the systems that are within our society, and is on Front Street right now is a still a major issue that we’re grappling with, as a society. We are, you know, a few weeks after a very controversial election and the landscape, you know, with the politics is very divisive. And so these are this very interesting and uncertain times. So my first question to you, Mark has to do with what do these times mean, for Centers for Independent Living, and other nonprofit organizations?

Mark Bennett  06:15

Tony, let’s start with a simple image, I use this image in some of my presentations. It’s an image of six people on a inflatable boat river raft, and they’re moving down a river filled with boulders and whitewater. And everybody’s in the boat, everybody’s got their life jackets on, they’ve got their helmets on, they got their paddles ready to paddle. And so the first thing about these times is we’re all in the same boat. And we need each other so much. So these kinds of times have so much volatility, and difficulty and novelty, we’re all off our map. And when we’re in this boat, this river that we’re on, we don’t know what’s ahead of us on the river, we don’t know what’s around the next bend, maybe the whitewater is going to be even more dangerous and even more difficult. So so the times are really calling upon organizations and their leaders to unify. And it’s one of the reasons when I worked with your organization and I work with other organizations that I put increasing stress on coming back to the guiding values and principles. Because this is the glue for an organization that will hold it together, no matter how tough the times become. Values and principles endure. Budgets change, political landscapes change, social conditions change, values endure. They’re part of the way you rig the boat and make sure everybody’s in the boat together and is oriented, looking down river with their paddles ready, ready to do their part, you know, no matter what comes around the bend in the river. So that’s the first thing I would observe about the times that we’re in that places a premium for organizational unity, because that’s how you’re not only going to survive, but perhaps even thrive. The Times that we’re in have an acronym that emerged originally from military planners looking at the changing nature of the modern battlefield, but but it’s moved from military parlance into organization and organizational development. And it’s called a V.U.C.A environment, V-U-C-A which means volatile, uncertain, chaotic, and ambiguous, volatile, uncertain, chaotic and ambiguous. So I have some news for everybody who’s listening today. And it’s not news that most of us want to think about. People like to use the phrase, the new normal, there is no new normal, there’s change. But that it’s not just the pandemic, as you mentioned, there racial equity issues, there’s climate change issues, there’s population issues that are cascading in this world, and we’re going to continue to produce change in all of our environments. And if that isn’t enough, we’ve got a layer underneath that the prospect for a level of technological change in the next 10 years. That’s the equivalent of the change in the United States between 1920 and 2020. 100 years of technological change in the next decade. It’s hard to even imagine how that is going to place challenges in front of us and some opportunities. There are some of those technologies that are going to be amazing new things that are going to help us but but just to cope with that level of time. Change has a level of stress and challenge to it as people need to retrain themselves and learn new technologies and how they’re going to affect job delivery and working together. And you now tell me that one of those technologies we’re all living through now, everybody’s got a life on something called Zoom now that many of us didn’t even know existed a little over a year ago. It was some exotic technology that a few people used. And now it’s the way we do business. And that’s all within 10 months. That’s a huge shift. So those are, those are some of my observations. I want to add one more thing in terms of the context. Part of what has helped me work with your group. And by the way, I love to work with mission driven organizations, there’s so much heart in mission driven organizations, when I get a chance to work with a group like yours, it’s a particular pleasure, because I know that people are deeply connected to wanting to do their best to help the people who were waiting for them. So 15 years ago, I had an experience in a strategic planning process that shifted the way that I did the work. I’d done it for a decade before that, and I’ve been doing it in the 15 years since there was a pivot point in my work. And I was sitting in a national laboratory here in the United States working with the senior leadership team. And one of the people on that team happened to have gone to college with someone who’d been become a lifelong friend. And his friend had become one of the leading futurists in the world. And he agreed to fly in for free and do a consultation with this leadership team. And I got to sit in the back of the room and hear somebody who thinks about the future, perhaps as much as anybody on the planet talk about the next 20 years. And this was in 2005. So now we’re 15 years into his forecasts. I still pull my notes out from that session that he did. And he has been spot on in predicting the kind of world, not the specifics, but the general trends and the things that were going to shape the future. And one of the things he said that day has forever changed the way that I think about helping organizations when I work with them. He said leaders cannot predict the future, but they can enable it. And what he meant was that leaders can help organizations prepare to adapt, prepare to be flexible, and ready to work together and shift directions as needed in an uncertain V.U.C.A environment. Because we’re going around the bend in the river and all of a sudden, we’re going to be dealing with a whole new set of conditions, we have to be adaptable and ready to work together, no matter what comes down. So that’s my essential message about the times are saying that CIL and all your sister organizations across Florida and the country, and many other organizations have to really think about how we become more adaptable together, because that’s what’s going to get us through these uncertain times.

Tony Delisle  13:14

You put a lot in there, Mark, I gotta say that, you know, when we look at all these different forces, pandemic, the racial inequities that exist the inequities of people with disabilities in the environment, the population growth, technology, it reminds me of the book by Thomas Friedman, Thank You for Being Late, where he talks about the acceleration as you’re mentioning the acceleration of these forces as they intersect with one another and impact us. And, you know, with that, I’m interested to know, how can organizations like Centers for Independent Living, like other community based organizations that serve people develop capacity during these uncertain times and be able to adapt during them?

Mark Bennett  13:58

Well, again, you got to think of adaptive capacity as your compass north, that’s what you’re guiding by how do we become more adaptable. And there there are three fundamental ways. I call them the robust strategies of adaptive capacity. And by robust, I mean, no matter how the environment around you  is going to change. And since you can’t predict it, any one of these strategies is going to help you. And when you put all three of them together, they have a kind of a synergy. So I’ll just name them first. So you’ve got the list in mind, and then we’ll go through them one at a time, and perhaps you can, we can have some back and forth. So the three strategies are unity, and then agility, and then force multiplication. So those are the three strategies. We’ll start with Unity. And then I know you think about this a lot inside your organization. So I want to have a back and forth with you about it. So we’ve already talked about values. An organization needs a really clear value statement because that’s, that’s your unity charter. These are this is these are the things we all agree to, and that we all commit to doing our best to actualize. That’s the first thing. The second thing is something that I’ve worked at CIL, where then I know you have been a big a big proponent of is in order to be unified, it has to be an environment where people all feel that they belong, and people will not feel they belong if the environment isn’t psychologically safe enough. So people get that sense of ownership and belonging when they feel that they can make a contribution, and they can speak up and their voice matters, that they can make a difference. So those are a couple of the major elements of unity.

Tony Delisle  16:10

So when we talk about unity, one of the things that it reminds me of is a quote that often you have in your signature line, in your emails from Helen Keller, you want to share that quote? 

Mark Bennett  16:24

Sure. Well, first of all, I’m a great fan of people who speak from a deep level of lived experience. And Helen Keller, thinking of people, you know, who’ve led the independent living movement, having some big challenges to face. Helen Keller, she’s, she’s a rock star, from my point of view. And she said, alone, we can do so little together, we can do so much.

Tony Delisle  16:51

And that’s where I really, you know, think about unity. And it just seems like even from an evolutionary perspective, people need each other. Like we wouldn’t have survived so long ago, we weren’t necessarily the strongest or the best adapted for the environment, you know, some would debate even the smartest, but what we seem to do as a species was be able to collaborate, to come together to survive. And through the 1000s of years through that collaboration, we have been able to, you know, come over out of a civilization that we have had. And now that there was more concrete, fundamental needs are met, still see collaboration, unity is a huge part of this. Back then, you know, the safety had perhaps do with more, you know, your physical well being, do you have shelter? Do you have, you know, your food, water? You know, are you safe from physical threats nowadays, it seems to be for many people, especially in organizations, is less physical threats. And more, as you mentioned, psychological threats, perhaps that are out there. And creating that safe space for people to feel welcomed psychologically, in an organization, especially as it pertains to unity and unifying the organization together is so important. So what are some of the key elements that you find that are needed to cultivate psychological safety within an organization?

Mark Bennett  18:23

Well, there are several, and one of them is that you need people in positions of leadership. And let me step back and say that I think leadership exists at many levels of organizations, it’s obvious with somebody in your position, you have a very clear leadership title, and a board of directors is hiring you to lead the organization. But there are also people who lead by example, who have no titles. And then of course, there are people who are supervisors and managers of departments, who also have leadership responsibilities along with their management title. So I like to think of leadership is distributed in the organization. And people who are leaders show other people by example, what psychological safety is. And it’s simple things like asking people what they think, and respectfully listening to them, because that draws people forward and makes them feel that their ideas matter. It also includes admitting mistakes and being open and honest with people because that makes it psychologically safer for other people to admit mistakes, and not feel defensive or ashamed. Because mistakes can teach us so much. And they can teach other people in the organization who then don’t have to make the same mistake. So you need a mistake, friendly environment to grow psychological safety. And that starts with a leader. There was a person in a leadership position in an organization that I read an interview with him in a book and he said the four most important words that any leader can say are “I screwed that up.” And then you know that that you put it on the table, other people can then see that it’s safe to put it on the table. So so those are several things that are really bread and butter, psychologically safe enhancements that can happen in organizations.

Tony Delisle  20:18

Well, I tell you what, you know, I really appreciate going back to your your definition of a leader is not a position, it’s not a title, you know, we may have positions of authority. But that doesn’t mean that people are following you. And if you’re in a position of authority, and no one’s following you, you’re not a leader, you’re just out for a walk. And that resonates with me, and many of the organizations that I’ve been in. This organization as well, as far as the organizational chart is concerned, they may not be in that position, but the work that they do, other people are resonating with them, they help to elevate their skills and their abilities, just by the mere fact of their talents, their commitment, the values that they embrace, along the way, really lift other boats up, so to speak, in their work that they do. So I really appreciate you laying out the fact that, you know, leaders are in a position of authority, it’s the way you conduct yourself and the values that you have, and it’s your influence on other people. The other piece of what you said that really resonates with me is the ability to admit to mistakes, you know, I find that people in positions of authority often, and I’m not excluded from this have egos and the ego can be a very bad thing. And people that tend to be a egoic, do not like to admit mistakes, will try to either cover them up or push them off on other people and, and that can just be a real inhibitor to the organization. Again, it can be a teachable moment, it can show humility, from a leader to say, hey, like you said, I screwed this up. And this is how I screwed this up. And, and then ask other people like you were kind of saying before, you know, don’t come in there thinking you’re the know it all, the collective wisdom of the group can be very valuable. And to being a good listener and active listener, not just throwing out your opinions, but actually really hearing out what people have to say, is, is an integral part of that and recovering from mistakes where we do screw it up. I think it was Nelson Mandela that said, don’t measure me on the number of times that I’ve succeeded, but rather on the number of times that I have failed, and gotten back up again, you know, I just think that’s a that’s a huge thing is to have a mistake free environment to where those aren’t necessarily mistakes, if we learn from them, they’re lessons. So that definitely resonates with me in terms of that.

Mark Bennett  22:43

So I wanted I gave you one four word statement that any leader can say that build psychological safety, I screwed that up. And another one is, I need your help. Which is the person who’s not a no at all, but is a servant leader. And, and is working really, even though there’s a hierarchy is working on a horizontal level with people side by side. And I think that really hardens people, and shows people their value and their necessity in the organization. One other thing, before we leave psychological safety, I want to add that a that a leader can leader can do is really show a full commitment to the guiding values and principles and then be open and transparent with people about decision making. Because that’s a quality of integrity. And when people know an environment is an ethical, integrity filled environment that raises the level of psychological safety. That’s one last thing that I would add. Finally, Tony, I’m thinking about leadership, I like to say there are leaders, those are the people with the titles, and then there are those who lead. And unfortunately, there are more than a few leaders in our society and all different kinds of organizations who are not real leaders, they have the titles and the authority. They may think of themselves as leaders, but they’re not true leading us. They’re missing these other elements. And yet there are also people without any titles who show up and are good examples of being good teammates and collaborators and moral examples with the way they treat other people their reading.

Tony Delisle  24:24

You know, one of the things that you were mentioning there is the values. And this, I don’t want to you know, get lost, you know, in terms of just like, you know, it’s commonly thrown out there. But I gotta tell you for what you did, or your work with us, as I mentioned, that’s where you started. You said like, what are your values, and it was a real look in the mirror time for us. Some of them were very evident and apparent, such as caring about people, empathy in our organization and many other human service organizations. That’s a huge part of doing the work that we do is we care about people. So boom, that was a value. Integrity, you know, Another value that we had, diversity, collaboration, like going back to the unity. And for us as an organization during these uncertain times, those values when we still don’t know the future, we can really retreat and circle the wagons around those values to provide us still with a compass during these insert, which way do we go or anything else like that this is a really good place to orient an organization. So I really appreciate the work that you did with us to really surface those values that, you know, intuitively, we knew were there. But until you helped to guide us in having a conversation to really crystallize those values. You know, I’m just very thankful that we did the work with you, ahead of the pandemic, and social unrest, and political unrest, and an acceleration of technology and environment and all these other kinds of things. Because this is allowing our organization to really circle the wagons around these core values that we have, even though we might not know exactly where the boat may take us. Due to these external forces, we have those internal values to provide us that compass.

Mark Bennett  26:09

Well, your organization’s experience has been confirmed for me many other times, which is why I don’t have any lack of confidence about I can’t insist with my clients, but I can strongly encourage them before they want to jump into strategy and problem solving, to take a step back, and really make sure their underlying value structure is clear, well defined, and strong and shared by the people who are sitting around this table trying to plan for the future. One of the things I might say about that is the values are usually stated as nouns like collaboration and integrity, or quality. And they’re single words, the values will not come alive as a noun, because they may mean too many different things to different people. So each one of those nouns needs to be succinctly and carefully defined. And then you need some verbs underneath it about the kind of activities and action commitments that you’re going to follow, that are going to breathe life into those big words of caring, and excellence, and quality and integrity. They only come alive in the doing. And so one of the things I began to push my clients harder on is not just getting the list of nouns, and even getting the list of definitions, but really working with a statement of one of those action commitments that are going to help them breathe life into the nouns. How will people see it? How will they know that we really do believe this not just that we say we believe it, but what does it look like in action. And that’s why the subtitle of my second book was values in action. I was interested in decision making and how people take those values and put them into action when they have to make a tough decision. In other words, we know what the talk is, but what’s the walk? and difficult decisions really put that question to organizations because they can’t do everything they’d like to do, the choices are hard. And therefore, that’s where you want your values right there in the middle of the table, when you’re really trying to wrestle with what’s the right thing to do, our values are going to show us what the right thing to do is in this situation.

Tony Delisle  28:23

I agree when you when you helped us craft our five values, and you had us work to identify three action principles that accompany each of those five values. I think that’s what really gave us had made those values come alive. Like they just weren’t a noun, that they actually had the the verb the action to follow that up. And again, a such a centerpiece for strategic planning that you did with us. So as far as leadership, we’re talking about leadership and you know, leaders, what do you see the role as leaders in supporting their staff, and organizations during moving forward during these these trying times these uncertain times? What is the what is our role in being able to support our staff and the organization in moving forward? 

Mark Bennett  29:13

Well let’s start with a with a maybe self evident word, but your role is critical. More than ever, in these times, the leader needs to be in this place where he or she can really support people and connect with people and bring them back to the values really, really help people know that you’re within this structure of values and ethics here in this organization and psychological safety, and that we need everybody now more than ever so much so. So it’s more than a cheerleader role. You know, the leader needs to instill with the force of his or her conviction of belief that I don’t know how We’re going to get through this. But I do know that we’re going to do it by sticking together, and helping choreograph the kind of collaboration in teams, helping thing your virtual teams really think about how they keep their communication, and engagement with each other strong. So that there’s enough trust and creativity in those teams to really problem solve and break through some of the challenges that are going to be on the organization’s plate. One of the things I will say, Tony, because I coach leaders individually, and then I work with leaders as I have with you, where I’m working with you, with your board or you with your leadership team. I think there’s an extra level of stress on leaders because of the amount of demand that the organization places on them to help everybody stick together. And so I’m a great believer in leaders like you making sure that your self care program is strong to get through these times. Because you know, you need to be healthy. And you need to be able to project this life force of conviction, and we’re going to figure it out together, you’ve got to be honest with people, which means we don’t know exactly how we’re going to figure this budget cut out. But we do know that the way to do it is to get collective intelligence involved and work together and make sure everybody is contributing to sacrifice of sacrifices needed, you know, with severe budget cutbacks or something like that. So that those are a few my top of my thoughts about leaders, I think they need to be able to show up wherever they’re needed in the organization and project this sense of confidence, but not out of arrogance or or overconfidence, but confidence in belief in the values in the organization and the we that are going to get us through.

Tony Delisle  31:47

That definitely resonates with me on many levels. Starting out with where you kind of were taking us there was the self care in leadership development and trainings and other areas in entrepreneurship, there’s a lot of attention on making sure that you have the energy to be able to do this work, it takes a lot of energy, whether it’s physical energy, mental energy and emotional energy, and how do we take care of those things? And how do we make sure that we have the right energy? Well, it’s you know, the the basics sometimes, you know, it’s, are we eating healthy? Are we getting enough sleep, are we being physically active enough to help go through some of the stress that we’re going through and to be able to do the work that we’re doing and, and I look forward to this podcast, and doing more in terms of really highlighting the necessity to make sure that we have the energy and physical, mental, emotional and social health to do the work that we’re doing, especially during these trying times where there is that added layer of anxiety, and stress, and those kind of things. And when things fall on the shoulders of leaders, we need to make sure that we’re taking care of ourselves, so we can care for others. So that really does resonate with me on many levels of why we need to be doing that. But also, you know, I really feel, you know, one of the strategic goals that we have is providing a healthy work culture here. And certainly psychological safety is part of that. And I do really want to provide where people who are staff, I’m very concerned about their mental health, their their well being, during these times, beyond even their work productivity. But personally, that’s such an important piece of all of this, that I think that we’re all experiencing through this and that authenticity, like you were mentioning before, you know, being transparent about where we’re at, not knowing where we’re going to be very honest about some of those kinds of things, I think can be very helpful. And lastly, you started out again, talking about unity, and I don’t want to let that you know, to ring hollow on people. I’ve been recently thinking about USA, the “U” is united. And that old cliche about united we stand divided we fall. I think about that all the time now, but especially during these times where it does seem that there’s more division than ever, where can we become more united together as a collective, because we do need each other. And one of the themes of this podcast is that one of the areas where we can become more united is this space, is this part of the natural human condition called disability. The fact that everybody will experience disability in some way or shape or form in their lives, whether they have a disability, whether they if they don’t have a disability, they certainly know someone that does. If they don’t have a disability, they’re likely going to get one in their life. It’s just a natural part of the human condition. That all of us no matter where we come from, where we’re born, what race or religion, etc, that we have. This is an area that we can all come together on and I’m not saying that as a as a dark thing to come to get around but is a very important thing to come together on because of all the values and virtues that come from, you know, having a disability, the strength based parts of this we can, you know, find this is a common ground, because it is something that touches all of us. So I, you know, I want to ask you in working with our organization that is centered around serving the needs of people with disabilities and, and really empowering people with disabilities to live independently. What have you learned about people with disabilities or just disabilities in general, in your work with us or in coming into the work with us. I know you’re you’re very wise and may have some thoughts to share. And, you know, would like to know that maybe some of your thoughts on on disability?

Mark Bennett  35:47

Well, I appreciate the way you’re framing this. And I just want to come back to leadership for a bit. One of the things I think leaders can do for, for people, whether that’s your consumers and people in the community, who you have to engage with, or it’s your staff internally, or it’s your board, leaders can help people frame and reframe how we’re looking at situations. And this master frame that you’re offering us is to rather than to think about disability as something that separates me from you, because you Tony have a disability and I Mark don’t have a disability, we’re really in this larger frame together, which is human being. And you know, within the human, we human, the human experience, there’s this possibility for all of us to have people we love, have to come to a disability or be born with one or for, it happened to any one of us that that can change very quickly in life. So I’m appreciating this larger frame. And I have to tell you, I’m going to share a personal experience with you because I’ve been fortunate to have good health throughout my life. And after I came back from a road trip once I was playing a game with my my oldest son. And during this game, we were running around on a playground, and I was chasing a frisbee that he threw, and I ran into the end of a teeter totter. When I was chasing the Frisbee, I didn’t see it because I was looking back over my shoulder. It caught me in the Adam’s apple in the neck, and I was disabled in terms of my ability to speak. And it sent me on a course of rehabilitation that took me over about two and a half years to complete. And I was somebody who use my voice to make a living as a speaker, you know, as a teacher, a professor, and I’m, you know, mediator. So I went from being able-bodied, to being disabled and not able to work. And I had to go through a period of time where I slowly built up my capacity to speak again, and I had to relearn how to use my damaged vocal apparatus. And I had to find people to help me with that. So one of the things that I guess that’s what started me on my deeper understanding of the nature of being able bodied versus having a disability, because I went overnight from those two different categories between them. So one of the things I’ve learned is that there’s much more that unites us in human beings than divides us. That’s a principle that really informs my work. And when people talk about their differences, one of the things I learned as a professional mediator is instead of staying focused on what we disagree about, let’s not over focus on that, let’s talk about what we agree on. And then let’s look at what we disagree about, from the point of view of what unites us or what we agree about. So that that principle is a mediator is one that I use a lot and I don’t have to be in a conflict with people to know if people are getting tense and having trouble listening to each other. I try and move them back to the common ground so that they get a run of the disagreement or the tension from that place of remembering that there’s a lot really unites us far more than we think about. And that’s true with the political divides in this country. You know, these remarkably hard categories that people think that they live in, that are blue or red, you know, or conservative or liberal. And what I know is that underneath those categories, there are tremendous Li powerful bonds of commonality and shared interests. And so I’m a great believer in the power of remembering what unites us.

Tony Delisle  40:00

I love what you said about we have more in common than we do different. I don’t know if it’s a part of human nature that we want to look more towards our differences sometime and really, you know, amplified that part of it. But I do agree with you that, you know, we all know what fear feels like, we all know what love feels like, we all know what anger feels like, or joy, or sadness, and all these different states of just what it means to be a human being. And whether you have a disability, whether you come from different races, or ethnicities, whether you identify as male or female, it just seems like these, like core human, what it means to be human is really something that can really bring us together. And as you’re saying that, you know, I don’t think look into politics is the way that we come necessarily to unite ourselves, I think we’re looking at that space somehow is like a unifying space for us. And you know, as you’re speaking about organizations and organizations really working within itself together, but as organizations have Centers for Independent Living, we’re in the service business, we’re trying to, you know, help and reach out to other people. And from what I found when working to help others, I work with people that aren’t the same, you know, ethnicity or race as I am, I’m working with people that have maybe different sexual orientations, different political affiliations, but we’re getting together, and we’re working to serve the greater good. And in that process of working and service, and together, there’s this sense of unity with one another, and belongingness, and connection. And I really feel like the space of service for the greater good, the betterment of others, is a place where we can really unify. 

Mark Bennett  41:37

I really am appreciating the sound of that. And once again, you’re reframing for our audience, you help other people see things perhaps a little bit differently, or help them see more clearly. And what you described as services, as a powerful mission force that can unite people is really important, because in the wise planning work that I did was CIL,  after you get the values, then you turn to the mission statement. What is our fundamental purpose for existence that unites us in this common cause? And the CIL mission is deeply connected to the service imperative. There are people there who need our help, our job is to serve them, to really help them and empower them and encourage them and and help them be adequately resourced so that they can live independent lives. And so they’re not there’s nothing like a noble mission to be a galvanizing force to pull people together. And then the other thing that comes from that, that I did work with your organization also is then you want a vision out there on the horizon that everybody can point towards together that like the mission sort of pushes you forward, you know, you know, you want to go there, and the vision pulls you to a particular place that you want to get to together. And then you have to create the goals and objectives and the hard work to close that gap between where you are now and where you end up in a couple of years. 

Tony Delisle  42:25

And that’s what’s really helped our organization out with the planning that you did with us the wise planning was that we tend to have a vision that there is no finish line to, you know, we want to empower all people with disabilities everywhere to live independently. And that is a noble mission, as our other missions, for instance, Dr. Martin Luther King who basically saw a world where all people, no matter what race, where you came from, coming together, peacefully collectively together. I’m not sure there’s a finish line to that kind of work and when you helped us create these, what you call horizon visions, that we could actually see perhaps, you know, achieving, getting to a place but it’s very helpful to chunk that out because I think sometimes, you know, it can be disheartening when we have these no finish line visions that are out there that will go on and on this work long after we’re here on this planet.

Mark Bennett  44:12

Right, I have found out early in my work that is important is those powerful, what I call permanent visions or enduring visions are about making the world a different place more peaceful, more fair, more just that I found that this horizon vision where people could get line of sight from where they are now imagine even if it’s a stretch, we could get there together you know, we need we need more money than we have now. Or you know, we were going to need some resources. We don’t know where we’re going to get those resources but but it’s a stretch worth making. And that in that horizon vision lies on a line of sight over the horizon to the permanent vision that’s far over a few more mountain ranges down you know, down in the future. So yes, I I’ve come to be a deep believer in people’s ability to imagine together and, and that that that has a power that will pull the organization forward to that point. And I want to quote here, the apple founder Steve Jobs, he said, if you really care about what you do, if you’re passionate about what you do, you don’t have to be pushed forward, the vision, will pull you forward. But that vision needs to be clear enough and vivid enough that it’s meaningful to pull us towards it. And the permanent Big Vision perhaps never get there vision doesn’t have that same pulling forward as, as a horizon vision.

Tony Delisle  45:40

You’re right, it could feel almost overwhelming, it can almost be disheartening, you know, in a way like, like, Oh my gosh, the work is never done, which it never is. But at the same time, if we, if we can have like it chunked out into these more digestible spaces, you know, it allows I think, us as human beings to get our brain around, okay, that is achievable. And it’s going to give me the inertia and momentum to get there. So one of the areas that I think the key part of what you did with the work with us, is that you involved, everyone in our organization, like I said, we nearly have 35 staff, and members of our board at the time, when you work with us, everyone participated in this strategic planning process, nearly, I gotta say, 100% of the time, when I’ve been involved with strategic planning, it was so top down that process of planning and involving everybody in the organization from start to finish, and it was not finished, it’s still ongoing, there’s such a key piece of it, and it reminds me of the Eisenhower quote that you gave to us was that, you know, plans are worthless, it’s the planning, that is everything. And I gotta say that in the planning, and in working with, you know, staff, and talking through it, and getting everyone’s feedback, creating a safe space for people to give feedback, I gotta say, was one of the most unifying things that has really stuck with our organization where people feel more included. So I wanted to acknowledge you for the technique that you have in working with organizations, and allowing everybody that safe space to feel included, and to have this as a multi level approach to creating by design these things. And so that’s why I’m so eager for your next book to come out. And to dive into it, you know, Unity By Design: The Architecture of Creative Collaborations, I know it hasn’t come out yet. It’s winter 2021. But I didn’t know if you were able, or if it was top secret, or anything else like that, if you would want to give us any kind of teasers about the book, and anything that you would want to share about this book that’s coming out that really does have to do with the heart of our conversation here. Unity, collaboration.

47:53

Yeah, I’d be happy to Tony, by the way, the title is a little bit different than then you mentioned I the first word is “Uniting”. It’s not unity. And I chose that I started, I started with the book being called united by design. And then I thought, well, the United States says it’s united, but it isn’t very united. So calling something united doesn’t really cut it, because it’s a, it’s a fixed state. And uniting is an ongoing process. So I like the the verb form, to convey the ongoing work that uniting is always in process. And it’s that attention to it, by design that is going to make make an organization more effective together. So the book at its heart is about the adaptive capacity principle that goes back to that national laboratory and what the future is said that you can’t predict the future, but you can enable it. And so leaders need to be catalysts for this adapting capacity in adaptive capacity inside the organization. And what I do in the book is I break it down into seven things that are part of the architecture of uniting by design, and four of them are core practices. The first core practice is dialogue, which is this deep learning based conversation that happens throughout the organization. It’s not top down. It’s like it’s including everybody, and that’s what I did with the planning process was create a dialogue to get everybody engaged and nobody knows the answer, we’re gonna learn together. So dialogue is the foundation of everything else. So that’s what you want inside the organization is the healthy multiple sided conversations. The second is wise planning, which we’ve talked about quite a bit. The third we haven’t spoken about, but it comes out of my deep work in mediation and conflict resolution, which is a way of negotiation that’s principled, so I call it principled negotiation. We still have to hammer out disagreements and work on, you know, sometimes compromising and coming to understandings that maybe are not as satisfying for everybody as they might be. But if it’s done in a principled way, not based on power, but based on trying to make sure everybody can come out of this in a way that’s acceptable, that’s a very important Cornerstone skill. So and then the fourth is my value space decision making work where the values are in the center of the table, as I talked about, and you really use the value statement and the guiding principles to make the hard decision. So those are the four Cornerstone practices. And then the three characteristics of the organization to make the seven elements are psychological safety, which we’ve talked about, integrity, which we have talked about, because that’s the leader making value space decisions, and being honest and open. And the third, a growth mindset. And so that’s this attitude towards mistakes, that mistakes help us. We don’t, we’re not afraid of mistakes, we use mistakes for learning, not for punishment, and you know, blame, but but for learning and growth. And when people share that attitude towards mistake making, you put your foot on the accelerator of the learning velocity of the organization, you move into high gear, and everything is something that can be learned from, and I’ll come back to a Nelson Mandela quote, I like. Nelson Mandela said, I never lose, I either win, or I learn. So there’s no losses than in an organization. You know, if there’s learning that we get out of it, then we’ve got a new asset. And so you keep reframing, picking yourself up.

Tony Delisle  51:47

Well, as I mentioned earlier, every time I entered in a conversation with you, I learned and become a better version of myself, Mark, it’s, it’s amazing. And the mistake I made in the title of your book being united versus uniting, what a great springboard to really help orient myself in any of the other listeners to the very important differences between united. Oh, we’ve arrived. No, uniting, ever present ever ongoing process that we always go through. So I appreciate that. Last thing, before we leave here, one thing that has been a pleasure in getting to know you through the work that you’ve done with our organization, is that you are what I consider to be a master poet. And I didn’t know and I hate, you know, well, I don’t hate to put you on the spot. I’d love to put you on the spot. Do you have any poetry that you would want to, you know, leave us with that we could chew on either related to what we’ve been talking about or not, that you would want to share with us? And no worries? If not, but is there anything that comes to mind? 

Mark Bennett  52:52

Yeah, and I think the best poems, for most of us are very short poems. But they’re poems that go deep, and leave us with something that feels universal. So this is a poem by man named William Stafford, who’s one of my favorite poets. And his poem is called Yes. It could happen any time. Tornado, earthquake, Armageddon. It could happen. Or sunshine, love, salvation. It could you know, that’s why we wake and look out. No guarantees in this life. But some bonuses, like morning, like right now, like noon, like evening.

Tony Delisle  53:49

Mark Bennett. This is in resources incorporated facilitator, Master poet, my friend. Thank you so much. I am honored that you are our first interview for this series that we’re doing that explores people’s perspectives, and allows us to be empowered to be the best version of ourselves imaginable so that we can go onward and upward in the service to others. Thank you, my friend.

Mark Bennett  54:20

Thank you sir.

Amy Feutz  54:23

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share, please email us at cilncf@gmail.com or call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live The independent life.

Terry Poucher and Mark Brisbane joins us on this episode to talk about two of the five core services that all Centers For Independent Living provide: Independent Living Skills & Peer Services.

https://open.spotify.com/episode/4UjmiZv9UCXwmlQhYA3R0j

SPEAKERS: Terri Poucher, Mark Brisbane, Tony Delisle

Tony Delisle  00:00

Tell me and I will forget, teach me and I will remember, involve me and I will learn Benjamin Franklin. Welcome to another episode of the independent life podcast. Very excited about this one, we are featuring two of the five core services that all Centers for Independent Living do. Independent living skills and peer services. Independent living skills and peer services here at the Center for Independent Living of North Central Florida are run by Terri Poucher, and Mark Brisbane. I hope you enjoy the interview. And welcome to another edition of The Independent Life. I am so excited about today’s episode we are bringing to you, Terri Poucher, she is our independent living skills teacher, coordinator, and Mark Brisbane. He’s our consumer outreach specialist, Director of our wheelchair ramps which you have an episode for you all to take a look at and check out. But today we’re going to be talking about independent living skills and peer services. Both Terri and Mark are steeped with experience in this area. Terry has been working at our center for 14 years, Mark 11, collectively 25 years of wisdom to share with everybody here, you know, I come from the field of teaching, I myself have a disability and work with other people with disabilities and peer support. So I’m very excited about the work that they do. So I’m very excited for them to share that work to share their experience with you and what it’s all about and hope for those of you that are listening and want to participate in some of their independent living skills groups or peer supports that you will reach out to us to make sure that you get connected with that. We’re going to dive into independent living skills. And I’m going to start out with asking why independent living skills?

Terri Poucher  02:00

I would say why not? I think it’s fun to learn, and try new things. Maybe remember some things that you’ve forgotten about. And we need many skills in order to be able to keep or gain our independence. And it’s also really important, I think, just for life in general to experience as many different things you can have different things to learn about. And it’s always an adventure and exciting to learn, I think something new. And I try and think of our group as friends doing things together, rather than a class. Because to me a class sounds like school. And I didn’t really care for school. And I think a lot of our people have had a rough time in school as well. So rather than thinking about going to a class and you know, thinking it’s going to be like school, or they might have homework or it’s going to be boring, I like them to think of it as a group. And we just get together and we do things together and just have fun. But we’re learning as well. 

Tony Delisle  03:03

One thing I like about the group that you all have and work with here, Terri, it’s a group of people of all disabilities, all different ages, backgrounds, experiences, the diversity within this group is fantastic. And I can see how you all collectively are just a wonderful connected group of people. So that that is hugely appreciated. And I love that you bring into this the mindset that we don’t want to make it too stuffy to, you know, schoolish, but at the same time, learning things kind of from an education, entertaining edutainment type of way. But again, it kind of drill down into the why, why are independent living skills important?

Terri Poucher  03:44

Well, I think they need to learn a lot of ways to help keep themselves healthy, they’re more prone to illnesses due to their disability. So we’ve talked a lot about making good food choices, doing some exercising, budgeting, advocating for ourselves, boundaries, that you know, we don’t want to cross, we don’t want others to cross. Making good decisions, safety issues. I mean, there’s just so many things that they need to be able to stay safe and to stay healthy. But we want them to learn in a fun way. You know, like is a not like a classroom, do fun, show examples. We do a lot of videos and games and all kinds of things just to kind of reinforce, but in a fun way, so that they’re learning without really realizing that they’re learning. Independent living skills, because of that improve their quality of life. I’ve taught a lot of things like new things like identity theft, you know, a lot of these people, myself included, that was never an issue years ago. And reading food labels, that is so important now because of all the stuff that they put in there that we want to watch out for. And again, that when I was growing up, we didn’t have that and it’s really important for them to help them make good decisions and things that they might have forgotten, like fire safety, some first aid, you know, being safe when you’re outside in the sun, wearing sunscreen and protecting yourself, you know, against skin cancer, and just all different kinds of things like that they need to be taught or reminded of. And we do a lot of creative things, which I think improves our quality of life as using creativity with crafts, painting, music, we have UF interns all the time. And I always if someone has come from another country, or another place, I love to have them do a PowerPoint on their culture. So I bring diversity in and they bring in diversity. And that helps us to better understand other people and accept other people and other cultures. And we learn something for geography, we learn, Where is this place, you know, where is this located, and what kind of weather do they have there, what kind of clothes do they wear. And we also work a lot on community inclusion, trying to get them out into the community. So they’re not just sitting home, all alone isolated, being bored. Of course, now, it’s a little hard with COVID, obviously, but, you know, we used to be able to encourage them to get out and we would go out as a group and do a lot of fun things. We’ve been to all the different museums, we’ve had picnics at the park, gone to the mall for lunch, the planetarium. And a lot of times, if we weren’t able to go somewhere I would have guest speakers come in and teach us about things like the fire department, the petting zoo, Guardian angels service dogs, thatcome in. The bat conservatory came in and brought a bat in. So you know, all of these things. They’re fun to learn, but they also encourage their independence. And like with the bats, I don’t really like that. But when they brought it in, and they told us and taught us about the bat, then I realized, you know, it’s not going to try and kill me. So you learn a lot, and you just grow when you are learning new things. And I think that’s really important to always be growing no matter your age, you need to keep learning new and different things.

Tony Delisle  07:13

You know, Terri, I really appreciate how you provided a real good snapshot of all the different things that go into independent living skills and what they are between healthy lifestyles, you know, understanding different cultures, being safe. You know, there’s so many different aspects to it, including going out in the community and participating in the different things that are out there within our community, and bringing in people from different types of walks of life to get to know it, what I appreciate about what you do and what you bring to these independent living skills groups is the immersion into this. It’s not just a one dimensional education, it’s immersion into learning that is so important nowadays, because you serve so many different types of disabilities, people learn in different ways, you know, visual, auditory, kinesthetic, musical, you do so much art. So I really appreciate the different ways that you address the multiple types of learning styles and backgrounds and abilities of the diversity of students or members of your group that you work with. And that’s the real art of teaching right there. And that’s something I’ve always appreciated about it. So I think you’ve given a little bit of a good snapshot of the you know, the whys. What can people expect when they do come to your group?

Terri Poucher  08:33

Well, now since we’re virtual, obviously, it has to be a little bit different. But we meet on Zoom every Wednesday at 10:30 for an hour and a half. And I have volunteers as I said, I have UF interns and practicum students, and myself and Colleen, who’s the ILS teacher in the Ocala area. We all work on PowerPoints, and we come up with creative ideas that we want to teach on with PowerPoints. And in those we put videos, songs, Ted Talks, you know, all kinds of different things. A lot of times we try and do a game afterwards to reiterate what we’ve learned or just you know, to talk a little bit more about the subject. So it’s a lot of PowerPoints right now, just because we are virtual, but I’m incorporating for the new year starting in January, I’m going to get more guest speaker type people to come in and talk about different things for them. And we used to do a cooking segment once a month and I’m going to get that kicked off and talk to them and show them virtually and show them you know, on videos and some live demonstrations and or recorded demonstrations too, just some of the different ways to again cook, make good food choices, learn different techniques, and realize that it can be fun and it is something that they can do and they have choices with what they would like to eat and to be able to be healthy and take care of themselves. So I’m hoping that that will bring another aspect in again, that will be more fun for them and, and entertaining and teaching as well.

Tony Delisle  10:11

You know, it has been a challenge, since the COVID pandemic running these classes we used to do them face to face. And there’s a big upshot to that. But as well, there’s also an upshot to now being virtual, and perhaps we can reach more people. So if people are interested in joining this group, what are some ways that they can get involved?

Terri Poucher  10:30

It’s really easy, because we don’t require them to sign up beforehand or do anything, we just want them to come and join us. And we’ll worry about paperwork later, if they really enjoyed and they want to keep going, then we’ll do the paperwork that’s required of us. But just to join us, they just need to go to zoom.us. And then they put in the sign in is the phone number for the Gainesville office, which is 352-378-7474. And then there’s a password, and it’s cil class. And they just put those two things in, and we’ll let them into the classroom, and they join us and can participate. It’s really simple. It’s not hard at all.

Tony Delisle  11:14

I love that, yeah, we’re more accessible now in this virtual space, it definitely as an instructor, as a teacher, as a group leader, it’s a little more challenging, but you know, I know you’re up for the task, for sure. Because you’ve learned so much about teaching and instruction and face to face and all these other kinds of things. So I really appreciate how adaptable you are. And so with that, why do you love teaching? What is it about teaching that seems to endear you into it? It’s very obvious to me and to others, that it’s near and dear to your heart. But, you know, why is that? What is it about teaching?

Terri Poucher  11:49

I just like to see how excited they get when they learn something new, or when they remember something they had forgotten about. And you know, that they can relate to it. And it’s something that I think it makes them feel all included, because we’re all going through this together, whether it’s COVID, or if we’re cooking or whatever, everybody doesn’t know everything, you know, and that’s okay. So we just like to get together as a group. And I’ll just enjoy spending time with them listening to their stories, some of the things they come up with, it’s kind of surprising what they’re willing to share. But, but it makes it fun, you know, we and again, I don’t look as me, the teacher in there, the students, I look at us as a group of friends that get together and we just enjoy being together. And we laugh and joke and you know, try and have a really good time, a positive time, so that they’ll want to come back and the class really has been growing. So that’s awesome to see.

Tony Delisle  13:02

Terri, that’s beautiful. And I think it makes a really good segue here to bring in Mark about the peer supports and services aspect of this, again, one of the other core of the five core services that we do here. And so Mark has participated in many of your classes and helps to facilitate this peer interaction based part of it. So Mark, I would ask you, you know, why are these peer supports, and this group coming together an important part of the community of people with disabilities and living independently?

Mark Brisbane  13:35

It’s an Well, first I want to say too, to answer your question, working with Terri, because we both do the classes, special work, you know, on site on, it’s, it’s what, what I’ll say most, there’s most important that there’s been a family environment is created. And in doing peer support with the folks in the community, Tony, it’s, um, it’s a comfort level for them, once they do come in, and they, you know, we discuss different things, different topics, we may have come up and, you know, get into it. It’s not like a school setting, as Terri said. Me and her both, and I really, I’m fortunate to be able to work with Terri, because it’s easy to create that comfort level there with consumers. Because some of them come in there want to attend, you know, peer support or ILS classes. They’re nervous, and we try to break that ice with them, to let them know, Hey, we’re good people. We’re here all together, we support one another. That’s part of peer support. And I stress that to people whenever they meet with me that it’s a family environment totally. We like to keep it like that really comfortable, really smooth, happy. Everybody has a good time. It’s a it’s a place to only you know, not only to learn, but also to come to socialize. That’s a big aspect of it. And thank you, I’m very thankful you know that I do work with Terry because she creates, even not from just our list, but also the peer support aspect of going out in the community all together as one to enjoy being out and socializing, not just in a classroom setting, but also out in the community. So that’s just one of the biggest things to me, there’s probably more I could think of, but that that one element there is huge, because most of the folks in the community are isolated, they don’t get out, they just stare and look at the four walls because they don’t want to be around other people for whatever reason it may be. You know, that that affords them an opportunity to be around folks if they can get comfortable with.

Tony Delisle  15:50

I really appreciate what you’re saying there, Mark, I mean, we are social beings, we need each other. And unfortunately, it’s very common that people with disabilities even before the COVID pandemic, would report on having less quality of social networks, smaller social networks, less friends, less family support, and less connectivity to others in general. And we need that. And if people are listening to this and don’t have a disability, but are experiencing more isolation, and connection from others, they may be getting a window into this world that many of us live in to where we don’t have the connectivity that some other people may have. And when we have opportunities, like an independent living skills group, or peer supports and services that are provided by yourself and others here, that is valuable, that is gold, that is priceless. We are biologically physiologically wired to be socially connected to one another. It is a deep and important part of our well being with our health. And it is wonderful to create a space where people can feel safe and come together and and not feel stigmatized or judged. And it is just a wonderful thing to have that you all have created a fantastic culture. So I’m very appreciative of that, in that, Terri, I’ll start with you. What is it that you would want people to know that you’ve learned about people with disabilities through your experiences through your work with them?

Terri Poucher  17:23

Biggest thing I think I’ve learned to appreciate is the fact that regardless, everyone is an individual, they could all have the same disability. But they don’t all have the ability to do the same thing. You can’t look at a person say, well, you have a learning disability. So you can’t do this, or this, or you should be able to do this or that. Because it’s not true, everybody is still an individual. So even though they have a learning disability, they might be super good in math, but they don’t read very well. Or the other way around for someone else. So I have really learned to take a look at the individual and look at their abilities, and take everybody for what they can do and understand them as a person and not lump them all together and look at them as just a group of people with a problem in are things like that, I want to look at them as individuals. And I want all of them to realize that I care about them as an individual, and I see them for who they are. And I don’t see them and take pity on them or anything because they have a disability. And I try and understand them. And I try and work with them and what they need and just realize you know that I love them for who they are. And their disability doesn’t matter to me.

Tony Delisle  18:41

I love that, Terri, how you approach everybody as an individual. I love that point that you’re making about we are not to be pitied. It’s so heartfelt as you ended there. One of the things that I want to acknowledge about you and then I’m very grateful for is I do have before I came to the center, a good amount of professional experience in teaching. I’ve taught basically kindergarten through college, I’ve been witness to many great teachers out there and you are among one of the best that I’ve seen in terms of the planning that you do for each of your individual classes. You are so well prepared going into them. It is phenomenal. And that’s of course is a core trait for teachers. But beyond that you’re adaptable. So many of us that have been in the teaching world know that you can be extremely planned and well rehearsed. But then things out of your control will happen and lesson plan goes out the window and you got to be able to sing dance on your feet or be able to do whatever it is to adapt to the circumstances that are unpredictable and you are so adaptable. I know you’ve said sometimes you pretend to be Gumby. Some people may even listening know what Gumby is, Google it, but very flexible basically and adaptable in being able to do that. And I also want to acknowledge you for, to me the art of teaching is to be able to present something in a way that people can understand and act on. So part of its education and part of its skill. And to be able to do that with a group of learners that have multiple learning styles, different abilities, different ways of understanding and processing information is an art because you so many different people in there, you know, you don’t want to make something that’s too hard, too easy. And it’s just a pure art and one that you know, is in your DNA. So I just wanted to acknowledge you for having those core traits. And as a senator, honor to have you among the family and among the staff here. So Mark, I’m going to turn this same question over to you and ask you, what is it that you’ve learned through your work and your peer support, and then within your participation in these ILS groups, about people with disabilities that you would want other people to know about?

Mark Brisbane  21:03

Those folks are genuine, they have a heart too, they’re just like me, just like you. Their disability doesn’t define who they are, as a person. They all got big hearts, man, I’ve learned after I came here, 11 years ago, coming from where I came from, I didn’t know much about disabilities, other than spinal cord injuries. But once I got to be around the varying types of disabilities, I started learning about the person not looking at the disability in itself. And it just was amazing to me, you know, these people have overcome a lot of trials. And it’s just you, you just genuinely care for them people you love like a family. And I have learned so much over these 11 years, Tony, with the different ones that have come and ones that’s been there for a long time I look forward seems like a family here. Our classes are like, and I tell him and Terri does too, it’s a time to spend time with them. It’s like getting together on the front porch. Just enjoying some good time. Terri makes it easy, because she is the consummate Pro, I call her Mojo, she brought her Mojo man she can, she can make it happen, man, it’s just I know, if the day ever comes that I retire or whatnot leave, I’m going to miss her. Because it is family. We feel very blessed to be able to be around those folks and share a conversation with them. You don’t see anything with this family, you don’t see a wheelchair or a walker, you know, or maybe a mental disability, you don’t see none of that, you just see the person. That’s the best way to describe it Tony, for me. I told Terry I miss being in the classroom with them I’m looking forward to spending time with them.

Tony Delisle  22:55

Again, as do I, this time shall pass and we will be there. And I’m just thankful that we live in an age where we have the type of technology that we can still stay connected, it’s not as good as being there face to face, we certainly look forward to when we get to that time, but are very thankful that we have the technology to be able to still continue these services, and open it up to other people that you know, have barriers. Again, we serve 16 counties. It’s a very big catchment area and rural areas and you know, certainly access to this technology and is an issue for people with disabilities. But nonetheless, we’re very eager to explore how we can reach more people. And, you know, Terry gave some real good information that we’ll have listed in the show notes for how people can get involved with these great groups in classes. One last thing, and we’ll end there. It’s a question that I like to throw out there is closer to people. But the question would be, what is the independent life to you? What does it mean to live independently?

Terri Poucher  24:12

I think that being independent, and I think of these things all the time when I’m creating classes, and working with my consumers, being able to do things on your own, and not but not without help. No, you can do it on your own. But you need to be able to ask for help when you need it. You need to know that you need that help, just like any of us do. And being able to do realize you can do anything with your life. You know, it’s your choice. It’s not up to your disability. It’s up to what you want to do with your life. If you want to live on your own or get married or get a job or anything you know that anybody else can do. You can’t let your disability define you. You have to go for that and become independent and not depend on others. Sometimes it’s really easy, I think, to depend on someone else to do things, you know, especially when you’re a kid, you depend on mom to do everything, well, mom’s willing to do it, then I don’t have to do it for myself, and you don’t learn that way. But hopefully, you know, with taking ILS classes, too, they can learn that they can do things on their own, and they can make decisions that affect their lives, and they can better themselves if they want to. And that would mean that they have their independence.

Tony Delisle  25:29

Thank you, Terri. Mark, how about you? How would you answer that question? What is the independent life mean to you?

Mark Brisbane  25:36

It’s tremendous. It affords you the opportunity to, to chase after your dreams to accomplish any little thing. You can do any small thing, any big thing, it enhances your abilities, and it doesn’t put them all in a box, you just don’t feel like I can’t you, you don’t feel like the word I can’t is there anymore. The word I can is now in place. Now you ready to roll, do one thing, get it done, you can move on to the next big thing. I’ve learned that from own disability at the age of 17, that once I learned how to do this, or that I can do this and that. And in my life now, from 17 years old, I’m using me as an example of what the independent life means. Now the age of 54, married, work at a job helping folks with disabilities, have three children, there are a handful, and I drive and do all the things I was told when I got hurt, it’s probably not a possibility. So the independent life to me is go for it. You know, give it your best shot and see what comes out. Yeah there’s going to be tests, there’s going to be trials, but there’s gonna be hills and valleys, but just keep pushing, just max as hard as you can to get everything you can out of it. That’s the best way I can define it.

Tony Delisle  26:58

wonderful answers from both of you. And and you know, I totally agree about you know, Terry and making informed decisions and choices and having that autonomy in your life and to acknowledge to while we do talk about independence, there is some level of interdependence. You know, even people without disabilities rely on other people. And that’s a very important part of those kinds of things. And, and Mark, I love how you bring into, well, if I can do this, maybe I can do another thing or anything. And that inertia, that momentum of learning something doing something can lead into so many different areas. And, you know, I harken back to your comment about, you know, potentially retiring one day, and as you mentioned, having three little little ones there, I don’t think you’re ever going to retire, man. So put that out of your head. We need you so and they need you. So But anyways, all kidding aside, one thing that I want to mention before we hop off here is that some of the most meaningful times of myself in here as director is when I’ve been able to come in and meet and talk and you know, converse with the class, the group that you have there. And it’s been wonderful to get to know that the different personalities that are there. And I was very moved one time when in satin, when when one of the members of the group had passed away. The group got together for the funeral of this person. And Terri and I went to this funeral and the group, you know, showed up and large numbers. It was very touching, and healing for me to participate in a funeral where the vast majority of people that were there at the service and in attendance were people with disabilities who knew each other I mean, it was just a true sense of not just community, but family. So many of them got up to speak and share words that provided comfort for everybody. I’ve never been in a service where I was so moved by the words that were spoken and the words that were shared, and it was just so heartfelt, certainly a time of grief and sadness. And the silver lining in that was I’ve never been to a to a service that was so diverse, and shared so many different things that he said, Mark from the heart, and it’s something I’ll never forget. It was the most inclusive funeral I’ve ever been to. And for them to have the confidence and articulation. And to get up there in front of other people and to speak is a true testament to the work that you both do. Thank you both for your time here to share some of the insights and wisdom that you have, the work that you do for the community of people that have disabilities that are out there. It is priceless. So thank you all. Thank you for listening, tuning in and watching and we look forward to receiving any inquiries about how people can get involved. The wonderful work that these two beautiful people do on the behalf of not just our center, not just people with disabilities, but for our community. Thank you, Terri, and thank you, Mark. 

Terri Poucher  30:11

Thank you, Tony.

Mark Brisbane  30:12

Thank you Tony. 

Tony Delisle  30:13

Take care.

Mark Brisbane is a husband, father, and mentor to those with physical disabilities in the Gainesville community. At CIL, Mark serves as a consumer specialist for the Wheelchair Ramp Program, which builds home access ramps. He also teaches Peer Support classes on how to live more independently with physical disabilities. Our ramp program runs throughout the year and we maintain a database for all wheelchair ramp requests. As we have limited resources, staff continually writes grants and conducts other fund raising activities so that fewer people have to be placed on the waiting list.

https://open.spotify.com/episode/4sR22emfXA8r1cEEOhaI8m

SPEAKERS: Mark Brisbane, Tony Delisle

Tony Delisle  00:50

And welcome to another edition of The Independent Life. I am so excited for us to talk to Mark Brisbane, our consumer specialist, who among many of the different hats that he wears, manages our wheelchair ramp building program known as ‘Building Ramps, Building Lives’. This is a wheelchair ramp program that we put out there for people who are in need of wheelchair ramps. And I’m going to have Mark talk a lot about what this program does and who it serves. But I want to start, Mark with asking you, why do we have a wheelchair ramp building program? Why is this program important?

Mark Brisbane  01:32

I told you yesterday, man to really solve the folks in the community here that have disabilities they can’t afford to purchase around there. They can be pricey. But it’s important because a lot of these folks live in rural areas and within the Gainesville area, you know, and again, they don’t have a lot of money, so we can provide that for them so they can have that independence, it’s vital. I’ve been doing it now going 11 years, and over these 11 years we have served some of the most dire need, people in dire need. They didn’t think they have enough that they would have an option but to the Center for Independent Living here in Gainesville, they had that option. It does take steps it does take time to get that ramp. But I would, I would say it’s a very vital part of what we do. Being a wheelchair user myself, I know with having that, it’s a security for people, they can reach out to us. Yeah, granted, it may take a while to get that ramp but it’s at some point they will receive that ramp so they can become more independent and they can be a part of, you know the society and get out into the community and do the things they couldn’t do before. So yeah, I would say having a ramp program to the CIL, the Center for Independent Living is very vital.

Tony Delisle  02:56

So Mark, take me into what it would be like to be a person who uses a wheelchair and cannot leave or enter their home. What does that do to a person who uses a wheelchair and does not have a wheelchair ramp to access their home or leave their home?

Mark Brisbane  03:16

Man, there’s so many moving parts I can, you know, being a Gainesville resident now and being a member of the team at the Center for Independent Living. I’ve lived it firsthand because I’m a C5 and C6 quadriplegic now more than 37 years. A lot of depression comes into that long isolation. You got to depend on people daily to go in and out of your home. It’s um, you already have lost the use of your legs basically, and you can’t get up to walk up and down stairs to go in and out of your home to get in your car or your truck and go somewhere. You’re relying on your wheelchair now, which is wheels. Its this deep, dark isolation, isolated feeling. And once you receive that ramp like I did, when I first bought my home when I lived up in Hamilton County, you know, I relied on my brother to get me in and out of there for weeks, months on end. And if he wasn’t there, I had to stay in something. But once I received my ramp, it’s like hey, I can go from inside of my house to the outside and get my truck and go to town or make a trip to Jacksonville. It was a huge relief. Having that independence back just by receiving a ramp. So I do the first thing how it feels not having access Tony.

Tony Delisle  04:46

So with you mentioned social isolation and loneliness I would imagine and one of the things that has come out in the in the research in recent years is showing that loneliness And social isolation is actually something that is killing people like people are dying four to five years earlier than they should be by the mere fact of being isolated and lonely, just reporting those kind of feelings of isolation and loneliness and I, and we’re recording this during the COVID pandemic. And I think more than ever, people are perhaps getting a bit of a taste of what it must be like to be isolated in their homes, to not be going out in the community to not be seen people to the level that perhaps that they were used to, before the COVID pandemic, and may be getting just a little bit of a taste of what it must be like, if you have that physical barrier and cannot get out of your house. And you mentioned having your brother there to help you get across the threshold of the doorway, I would imagine that’s probably a dangerous thing to do, right to have somebody help transition you over that threshold?

Mark Brisbane  06:03

You have very much so. Going over that going down steps, a huge fear, especially if you’re confined to a wheelchair. But I’ve experienced from personally from folks that have called me. I had a veteran a few years back that had been isolated, Vietnam vet, that isolated double amputee in his home for over a year, and how much it affected you as a human being and going through war, you know, being home and he told me that he couldn’t trust people. He didn’t want to depend on people. So he would rather have food delivered to him and just stay in his house, how much that depression etc. He didn’t want people pulling him up and down steps. He said he didn’t like that he didn’t want to have to feel like he was dependent on people and plus someone dumping the amount per se not told him I’ve been through that too the fear of that. There’s so many moving parts to it, different elements that you’re dealing with that depression you’re dealing with that having to depend on somebody it really yeah, it can affect your health. It can. I know. I know how much happier I felt once I got my ramp. How about how the relief came on me you know that I didn’t have to depend on calling someone or waiting until five o’clock until my brother came home you know by then I’m tired. I, you know I’m not going anywhere. I’ve been home all day inside, stuck at home. What’s the point going anywhere now? All those things. Yeah, that day answer your question about being isolated, in can affect your health, it can age you.

Tony Delisle  07:57

So you mentioned Yes, it is dangerous for having people assist you through the threshold. And then that you thankfully you had your brother to do that very unsafe, we don’t recommend people doing this per se, because it can put people you know who’s using the wheelchair. And, you know, for people that are transitioning them. It’s a very dangerous situation to be in risking people’s safety. And then you mentioned this veteran who did not leave his house for a year. I recall working with one of the ramp recipients that we had, a grandmother who hadn’t left her house in six months, and being told by her what it was like to not see her grandkids, her family, they would come by every so often. But it was very palpable. The heaviness of the depression that she was feeling and you know, just it was it was very concerning. And, and one of the things that I learned in working with this program and with you was another common strategy that people would use to get in or out of their home, especially the steps and I hear this being a commonly practice thing when people perhaps live in a mobile home or a trailer and having steps to go down is that they would use a piece of cardboard to throw over the steps themselves. And they would wheelchair them, you know themselves to the threshold, take themselves out of the chair, throw themselves down the cardboard, which is protecting them I guess from the stairs itself, then once at the bottom of those stairs, reaching upwards grabbing the wheelchair and then pulling it down to get out of their house. I mean, and that the fact that this is a something that’s somewhat commonly used to get out of their home is just, it’s very, very striking and sad. 

Mark Brisbane  09:51

Of course, you know, Tony, the wheelchair ramp program is my baby. I know how much it means to people. How important it is to have that program to keep it funded. People that donate I’m always, always saying donations are vital. I don’t care if it’s $10 $15 $20. You bond more to nails for somebody, you know, like the veteran I talked about. He basically said, he asked me was I lying when I told him, we’re going to help you. I don’t believe this is real. I said, Yes, sir. It’s we’re going to build your rental. And he called me back after it was completed, he said son I lost faith and hope in anybody coming through to help me out, you know, I served this country, I did three tours in Vietnam, faught in in some of the worst battles. He was telling me all this, he broke down the phone and told me, he said, I now can believe in people wanting to help others. Because you told me, You told me you were going to help. And you did what you said we will do. So I said, Yes, sir. Because I know what it means to have that ramp. I truly, I know that because I’ve been paralyzed since I was a teenager. And I’ve got other stories, you know, paraplegics telling me, man, you can relate. When I forget, I have to come out on my porch. Granted, young got my arms, I can jump down on my deck, I can get one step pull my chair down and get another step, pull my chair down. Once I get to the bottom step, then I hop in my wheelchair, from that bottom step or second step into my chair. I’m like, he shouldn’t be working too hard to go in and out your house. So that’s what we got to do what you got to do? No, you don’t. I mean, if we’re here, we can do it, we’ll do it. So that those are every day Tony every day, people are going through that.

Tony Delisle  11:46

And I want to make a point of clarification in saying that it is sad, the situation is sad, that the people that are having to go through these extremes are very brave and courageous to go through these drastic measures to leave their house very desperate situations, it’s the situations I’m referring to, they’re not the person. So Mark, you brought up the fact that like this veteran, for example, I know many other people are taken back that there’s actually a program out there that will provide wheelchair ramps for people in their situation. So maybe we can describe a little bit about well, what does this program look like? How do people get signed up for it? Who’s involved in getting these ramps built? Like, what is the actual program look like from start to finish?

Mark Brisbane  12:53

Um, typically, well, let me let me start how its funded. Just within the city of Gainesville, every year, we apply for the community development block grant money, which is not a lot, but it’s something that helps folks, we give that money, it’s it has a certain requirement for folks within Gainesville city limits, that are eligible. They have to be low income to apply, they typically will call me. There’s, um, some paperwork, income verification forms that I had to get filled out required by the city. And they’ll call our center because they see our ramp programs on our website. And they asked me, you know, Mr. Mark how do I apply to get a ramp, I’ll ask them, you know, what’s your disability, you know, what’s your income monthly, because those are the requirements. And then once I get the things that need, I have one of the contractors in Grace Methodist, Custom Design Innovations or Amway Home Improvements, set up a time to go out and evaluate exactly what that consumer may need. And then, you know, during the progress of it, you know, I’ll fill out a consumer service report, we’d goal set to start, you know, in the progress of, you know, getting them a ramp built. And I’ll stay in contact with them through the process, you know, once one of my contractors that I mentioned, goes out and evaluates, and then we get a time set up or go out to build, you know, the ramp they requested, once we deem them eligible. And through that whole process, I mean, it’s like, you can hear, I have never, not once had one consumer would be so grateful from start to finish, because it’s a relief, but that’s typically how it’s handled. If someone calls outside of the city limits in our catchment area, they go away. If we have money that’s available through our University of Florida charity campaigns we do once a year, if there’s money available, I’ll typically ask them if if it’s a dire need like they you know, cannot access in and out of your home via mobile home. If we had the funding I’ll get a contractor to give me an estimate and if one of our guys in Gainesville he doesn’t mind going to an area that’s not too far out, they’ll go build. You know, we open a cup consumer service report and with goals and try to help as many people but when it all comes down to it, there’s just not enough funding to fund everybody our waiting list has sometimes 200 250 people on that waitlist, that’s not as large as that is. That’s insane. And it doesn’t stop there. You might knock one or two, maybe three off of there, but then it’s it’s gonna get just got to keep reloading because they’re just not enough funding out there to help everyone in our 16 County catchment area and it makes me sad. More than sad, when I got to tell someone we don’t have the funding, you know, I’ve got to start digging and trying to find resources for so yeah, it’s Yeah, it can be really depressing.

Tony Delisle  16:31

Yeah, I’m glad you mentioned that because that is something that we you know, take home with us and in our hearts the it’s great that we’re able to serve the 15-20 people, you know, that we can a year say through like you said the funding from the city of Gainesville or through other fundraising capacities, donations. But the fact is, that unfortunately, there are so many people out there living in poverty that cannot afford a ramp that have mobility issues just cannot get in and out of their home. And so I almost like see the way this program operates in kind of the head the hand the heart, the head You know, you be in somebody that’s getting your head around these kind of things you know, being able to to get people on a list to triage that list in terms of importance, connecting them with the people to get the the ramps built and, and the goal set and there’s usually other needs that we can also wrap other services around. And so thankfully, you know, a big part of what you do is kind of getting your head around all these different moving parts and connecting dots. The, the hand being like you mentioned, you know, Custom Design Renovations, Grace Methodist, and Amway you know, these are wonderful contractors who are licensed, have workers comp, can do a rendering know the ADA specifications, and often are doing this free of labor on time that they have off. Instead of spending it with their families on weekends, when they barely have any time off as it is, they’re out there building wheelchair ramps for people who are in need. So so that’s the that’s definitely that that part of it and, and obviously, everyone’s got the heart in this, the feelings, the why that’s in there. And it kind of also ties into blood, sweat, and treasure. You know, we need people out there that are going to, you know, do the work, to do the sweat, but the treasure as well. You know, whether that’s, you know, people making donations to our center, so that we can get these ramps built, or if people have materials, like often it’s the materials that we need the most. Again, you know, we have good kind hearted people, and even volunteers that we can throw their way to get these ramps built. But the money goes into the materials and the materials that are needed for a wheelchair ramp, just by the wholesale cost, it’s not uncommon that there’ll be words of $2,000. $1500, just to make sure that they’re they’re built to code that they have the ADA specifications, you know, many of them have to be very long and extended because of barriers. You know, again, there’s so many different moving parts to this program that you serve there, Mark.

Mark Brisbane  19:19

History has told me  and I want to add to it. You know, we talked about stories, so people fully understand when I came here from Hamilton County and started doing the ramp program for the Center for anything. One of the first and I’ve never forgotten and it really struck home with me when I’m dealing with people when I’m you know, only into the future and up to today was I got a call from a student in Santa Fe Community College, requested a ramp sent at the time. Christian’s concern when community was doing, they were doing a large portion of our building, and I sent the guy out there. He sends retired To evaluate a render what you know was needed there. He called me and he said, I just lived. One of the saddest situations I’ve ever seen in my life. A lady opened her front door, someone had stacked cement blocks for her to go in and out of their mobile home. She stepped out of out of the blocks, and they give one she’s eighty years old, and fell out of her home. And I mean, this guy broke down on the phone. That never left me. And this is my 11th year of doing this. And every time that I do a round, she comes across my mind. Eighty years old, man, that’s somebody’s Grandma, you know, no family, no one seen about her, but a little freshman, Santa Fe College student and going out there doing a well check on her. But you know what we got her that ramp and I meant my mind if I had to spend out of my own pocket, somebody’s grandma was gonna get that ramp, but she got it. And that was such a cherished thing, and that’s, that right there is why this program was so important to have, that people need to understand. When you give and when you donate, you just ain’t giving your money, you give it to somebody that may be someone’s grandma. So that’s how I see it, I just want to share that she come in my mind, you know, I’ll never forget. That’s why it’s important to me, Tony.

Tony Delisle  21:34

Thank you, Mark, for sharing that. And one thing that since coming here to the center working with you and working with this program, I’ve learned to become so grateful for any time, I simply walk in or out of my door. simple but profound gratitude that I have. Because I don’t have that mobility issue, I can just walk through a door. And this is something that wasn’t even on my radar that I needed to be grateful for. And I hope anyone listening here can just count their blessings every time they walk, or move through that doorway, without any issues or barriers. Because if you couldn’t, you couldn’t go to work, couldn’t go to school, go get your mail, go around the neighborhood, for a stroll or a roll or whatever it may be. Just that simple act, I find to be so profound. And I think it’s important that we’re all grateful. And that was something I didn’t even wasn’t even aware that I should be grateful for until working with you in this program.

Mark Brisbane  22:48

Words well said, Tony.

Tony Delisle  23:03

So Mark, you know, as we wrap this up, you know, I wanted to get your take on what it means to you to live the independent life. Here where we’re providing a platform to educate people on our services. But also we wanted to give a lens into the world of people with disabilities as well, and what it means to live independently. You could give us some of your thoughts on what does the independent life mean to Mark Brisbane.

Mark Brisbane  23:30

Man, it means everything because I will tell you 11 years ago, and as I said, I’ve been a quadriplegic for 37 years, I had never heard of the Center for Independent Living, and didn’t know anything about it. Didn’t know about the movement, none of it. But since I’ve been entrenched and had the blessing, and the fortunate blessing of working with great folks at the center, and there’s no words to describe it Tony. It means everything to me. So many doors have opened up for me. Since coming to Gainesville, and being able to help others that was in the same position I was in 12 years ago, didn’t have access to ways of being more independent. It is Oh man. I mean, look at me now. Father of three. Living an independent life married to a woman that she hadn’t have to put out when we live she does every day but she does. Having access to drive and then live such a fortunate blessed life. I don’t even know if I’m putting…giving The Independent Life credit enough but I can tell you right now, being wheelchair-bound like I have for 37 years, I’m living my best life at this point, even through a pandemic. But I don’t know if I’m answering it the way you wanted me to but that’s me, seeing through my lens is having that access now.

Tony Delisle  25:06

Well, Mark, you definitely answered the question very well. And I just wanted to acknowledge you, as somebody who I’ve learned and continue to learn a lot from, we really appreciate you working here at the center. You’re somebody that this is only one hat that you wear, by the way, and we’re going to have you on, again to talk about the wonderful services that you do, and just some of the wonderful insights that you have. But what I really appreciate about you, is you you speak from the heart, you are so relatable to so many different people. Yeah, I’ve seen you talk to all different kinds of people, all different kinds of ages, all different walks of life experiences, and you just seem to resonate with like, everyone, and to have that social fluency is so rare, and want to acknowledge you for for being that kind of a person. And, and having the heart in the right place and the mind in the right place, and the spirit and this attitude of gratitude that you have of wanting to give back. All the wonderful things that you have, you do have a beautiful family, you get out there you live the independent life. And we’re just so fortunate to have you a part of the family for Center for Independent Living, to be serving the people that we serve. It’s just so wonderful to know you, and to continue to get to know you better. And all the wonderful things that you do, Mark, we’re very blessed to have you at the center in our community and you’re just a wonderful human being and thank you so much for coming on here and talking about a little bit of what you do here at the center and for our community.

Mark Brisbane  26:45

Happy to, because I’m richly blessed Tony. Also have the center. So I enjoyed it. I look forward to the next one to put on my other hat. So I tease all the time to coworkers, I’m what is it a jack of all trades and a master of none, but I enjoy it. The center is is a blessed place. And I know it, I feel it. And I found my niche once I came here and anytime you can help someone small or big is a blessing. So I look forward to continue and do anything weeks, months, years ahead.

Tony Delisle  27:27

I look forward to being there with you shoulder to shoulder Mark, thank you so much for your time. Thank you so much for your wisdom. For The Independent Life. Onward and upward. Y’all take care.

Amy Feutz  27:42

Thanks for listening to the independent life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share. please email us at cilncf.org@gmail.com or call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

Shera Curtis talks Community Outreach, providing resources and services to any one who is in need. If you have a disability, call and connect with Shera, who serves to provide you with information and referrals, one of the 5 core services you can find at all Centers For Independent Living.

https://open.spotify.com/episode/5eTSaTuWGRzNjIkmvmJVNk

SPEAKERS: Shera Curtis, Tony Delisle

Tony Delisle  00:49

Welcome back to another episode of The Independent Life. And I am very excited to have Shera Curtis with us today, community outreach specialist, and she does so many different things and would want to ask you first, you know, off the bat, just broadly speaking, what is it you do here at the Center for Independent Living?

Shera Curtis  01:11

I am the plug for the people. I’m the community outreach specialist. What that means is I provide resources services to anybody in need. If they have a disability, they call and it’s more like I&R. So I&R would be information or referral, where you have a question about how do you get a light for your wheelchair? Or how do you sign up for SSI? Or, I mean, the the question can be from A to Z. And I’m there to give them that resource that connection, and the answer.

Tony Delisle  01:43

So information or referral, one of the five core services that all Centers for Independent Living do. So we don’t provide all things for all people. But we want to know, in the community who does serve or provide resources for people and connect them to that. Why do you think that is important that we provide this kind of a service?

Shera Curtis  02:04

so that Martin Luther King said, “Life’s most persistent and urgent question is what are we doing for others?” And we did a needs assessment at the beginning. I think when I first started in February, it was a transition. So I was just being on boarded, and then COVID hit. And we were trying to figure out how to meet the needs of our people, how to meet the needs of our consumers, and still provide our mission and our vision for the for the organization. And with the needs assessment being done, we noticed that there were a lot of people in the community that didn’t have food. And it was a major food insecurity within Alachua County. And so I first started out with Catholic Charities and Catholic Charities offered food that was free. But I noticed that it wasn’t, it wasn’t sustainable. It wasn’t. It wasn’t ideal, the food that they were providing. So I looked into other resources. And then we we we stumbled upon the relationship with Brenda the Mighty. Our first box was a food box. And I think we had like two or three pallets. What was it? It was quite-

Tony Delisle  03:11

we got hundreds.

Shera Curtis  03:14

It was quite a bit of pallets that we had, and it was the food box was a little bit more ideal. It wasn’t to the place where we are now but it was the next step. It was granola bars, tuna fish, ravioli. So there were a lot of different combination foods that were more ideal, what people would eat. Nuts, things like that. And then we gave those out. And we started out with just I think we just were connecting to the consumer, just individual consumers, we would deliver them they would call and it was an I&R call, they would call in and we would be like, okay, we have food or, or we would do the needs assessment. And if we hadn’t done it and say, Hey, are you needing food or you needing these resources, we have this for you. And so we were able to connect them then. And then it expanded just a little bit further. And we were reaching out to housing properties. So these weren’t just one and twos. These were 50 and 60 and 70 people in one location. And we said, okay, if we have the resource to connect them to the food, we’re going to be able to provide services or substances for all these people in this local area. So we expanded now to where we’re doing food distributions every week. And we’re giving over 300 food boxes a month to people in need. I think that’s a really good start. I think we started with maybe five or six in a week and now we’re up to at least 70. So we are grown. We’ve definitely grown.

Tony Delisle  04:46

That’s phenomenal. And I’m glad you mentioned that in February and 2020 you came on board and join the family. And March 13 I’ll remember that day it was like a Friday I believe. We decided because of the COVID pandemic that we were going to have to lock our doors. But we’re going to continue to do services, and many of which is in the virtual world, but what services. And you worked very hard to create a needs assessment, to go out into the community contact, the people we were already working with, and then contact people we didn’t know with disabilities, to see what their needs are. And you really landed in a place that was lockstep with the Florida Department of Emergency Management. Through our collaborations with this agency, we were in the state’s Emergency Operations Center. And we’re working with food distribution networks because of that. And this was one of the biggest, important responses that the state, county, cities were doing in terms of meeting the needs of the people due to the COVID. So it was really exciting for me to see that you through your needs assessment had identified the needs of the people that was also identified through the Florida Department of Emergency Management, we were able to connect those relationships and make that happen. And one of the things that really set us apart was because the state was distributing food publicly, and people could drive up and get food and throw it in their trucks. Of course, a lot of the people through your needs assessments were finding out didn’t have transportation, weren’t able to get out there for other reasons. And even if they were, there were some access and functional needs that weren’t being met if people you know, needed to communicate, or deaf, or if people needed to communicate and had either cognitive impairments and couldn’t, so the effective communication piece wasn’t there. So the idea, and that you were able to do is what’s get the food to the people where they are in the community, not have them come to these distribution sites.

Shera Curtis  06:50

And it was a lot of even just to say some of the insecurities were family support, a lot of these people had pre-existing conditions, and their families weren’t coming around as much. So they were trying to figure out, how would they get groceries. Some of them didn’t have the resources to get the delivery services. So it was very timely, that I was able to come and say, Hey, you don’t have to come to the center, you don’t have to drive anywhere, I won’t even have to make contact with you, I can leave them at your door. And then we can make the transition there. It was also I was very intentional about how I was upholding the CDC guidelines with having multiple, multiple bodies touch the foods and the products. I would make sure I would sanitize things, I would sanitize my hands, I would be washing my hands or, or whatever the process is where I would do those regularly, every time that I dropped them off and making sure there was no contact, reassuring them that there was no contact. So they definitely felt comfortable. And they felt secure, even with the family not being around. So it was just like they were… I was making the connection to be a part of the family.

Tony Delisle  07:59

I appreciate that. Because at the you know, the start of this pandemic, you know, there was a lot of fear, things were getting shut down, stay at home orders were in place, and the precautions that are needed to be taken in terms of picking up the food, touching the boxes, transporting the boxes dropping off the boxes, there’s so many attention to details regarding the CDC guidelines for safe and effective ways of mitigating any infections that were there a lot of details that were being paid attention to. And I know that was appreciated by some of the people that you were delivering food to. I’m interested to know what was it like for people when you were able to connect with them, the food, or I know you’re also delivering PPE and other essential resources, disaster preparedness supply kits and, and self care products and all these other kinds of things. Aside from those resources, what else were you experiencing when delivering these essential resources to our consumers and the community?

Shera Curtis  09:00

I think we were, we were bridging still out more. A lot of people didn’t know that we were here. And even the ones I did didn’t know that we provided such services. So giving them a place where they can connect and have a solid connection of solid plug of resources. I think presence. It was a lot of presence. A lot of people were just grateful that someone cared enough to come out. And it wasn’t just a random person. Just kind of throw it in there. You’re on like a newspaper. I would knock. I would talk to them. Sometimes… there was a lady. I’m not sure what the the city was, but it was past Waldo road past out there. Where’s that past? It was going way out there. I didn’t even know that was a little city. She was out there. Her daughter was a nurse. I think her son had, I think he was visually impaired. So he was he was disabled and he had limitations. So they were they were stuck out there for a while. I remember going out there and I was coming to deliver her some food. Of course, I didn’t know that she was that far from Gainesville. So I was like, you’re in the middle of nowhere. How do you get resources, there was no delivery services. I think Amazon was just starting to transition there thing to, to drop off food and stuff. So everything was she was she was pretty much in isolation out there. And one thing that I remembered about her was, she was so grateful that the CIL even came that far, that I sat and I talked with her. She definitely suffered, or she was just dealing with depression, not knowing how to reach out to people and not knowing where her resources were gonna come from. It was a state of hope that I saw in her. It was something I think that was kind of… the best word is hope. Because a lot of people were on edge, they had so many pre-existing conditions that they were afraid to talk with anyone to reach out to anyone. It was just like, I’m staying home, I’m not going to go to the store, I’m not going to do anything. And it was just to say that there’s hope that that someone’s going to come out here that someone’s going to provide food, that someone’s going to talk to me because I sat there for like two hours and talk to them. We did the needs assessment survey. So I was able to get her connected to Meridian for some support. I think I talked to her son about getting some help with legal issues that he had regarding his disability, and what prompt that. So I was able to connect them to legal services, to Meridian, to seal with more opportunities for just ILS classes if you want it to not feel alone, but you want it some support to to get through the pandemic, maybe you could try ILS classes. So it was a lot of just connecting with people. I think that’s one of the bigger components that people miss about community is the connections you make with people, and the relationships that are built, that goes for supplies, just delivering food.

Tony Delisle  11:56

I like what you’re saying there about presence, and just being there and present with people, especially people with disabilities who already before the COVID pandemic are more likely to experience social isolation, smaller social networks, and this feeling of loneliness, which has been shown to be a killer. And the fact that, you know, yes, you have some essential resources that you can bring to people, but just making that head and heart connection with people and just being present with them. And I believe this was early on, in the pandemic, you know, a month or two early on, and the recommendations are isolate, isolate, isolate. More isolation for people that are already isolated, and to bring the value of presence to people, is just wonderful to hear that that’s another thing of value that we’re able to bring and continue to bring for people as we now are in November, as we’re recording this. I think the the mental health impact of this social isolation and loneliness is becoming better understood, and it’s reach. So I think that’s wonderful that you’re able to deliver those kinds of things. I’m interested to know, what is the importance of collaboration with different organizations in order to be able to do the services that you bring here. You know, it sounds like you work with many different types of agencies and organizations to be able to deliver some of this the essential supplies that you do or connect people, like what did what do you see being the relevance and importance of having those relationships with these organizations?

Shera Curtis  13:30

Larger numbers, I think that’s the thing. We want to connect to people, we don’t just want to do one or two, we want to do one or two, we might as well be individuals and their own, you know, sole provider thing. But we’re an organization that we’re connecting, we want to connect hundreds. We want numbers. So that’s the best way to do it is to partner with people who have more, more resources, more connections. I mean, one can put 1000 in the fight two can put 10,000. We want to make sure we expand that and make sure we can reach everyone. I think even when we go out to outreach, I’m always finding that more people need to sign up. And then my cousin who doesn’t live here, they can sign up. So if I’m connected with Gainesville housing, I can connect to not just one housing development, I can connect to five other housing developments. And I can reach five more people or five more, five more locations where people have needs opposed to just one one location that I know of. So it’s I guess it’s a numbers game. Just making sure we can reach more people and meet their needs.

Tony Delisle  14:38

I think in the military, they call it like force multipliers. You know, where we can…The idea being we’re, you know, the whole is greater than the sum of its parts. And you know, it takes a village and there’s all these, you know, interesting cliches and sayings that are out there, that when we do kind of come together and we can collaborate, we can reach more and do better. What do you find to be the essential skills in cultivating these kind of relationships to leverage the resources to meet the needs of the people? Like how do we get those relationships?

Shera Curtis  15:29

Patience, understanding, and transparency. A lot of it is listening, these people want to be heard, I know we’re going to talk a little bit about just how it intersects with what I see or how I’ve seen things be exposed to with people who have disabilities. And that I think that’s one of the things is being transparent, and saying, hey, I’ve gone through that same thing too. I may not be disabled, I’m black and brown, and I have the same issues you have with access. So listening to them to give genuine feedback, to build relationships to build trust, because that’s one of the biggest barriers that happens in communities is there’s no trust for outside organizations. And we’re there to do that. We’re there to build trust, we’re there to listen to them, we’re there to meet their needs. And we’re there to get their perspective on on what loss looks like, on what insecurities look like for them, or what their disparities are. I mean, there’s a lot of components that come, which is community outreach. And then from there, those bridges are built. And we want to keep it sustainable. And I think that’s one thing that I have done with the food distribution is I’ve been keeping it sustainable, or these people are looking for me, every week, every other week to come up, they’re waiting for me at the building. They’re calling to say, hey, you supposed to come at one, it’s 1:01, I don’t see you. And I’m just like, I’m right outside the parking lot. I’m coming, and they’re ready. Because they trust me, they trust us sores, they trust CIL, they know that we’re going to come. They know that we’re going to stay connected with them. And that’s how I guess that’s how the relationships start.

Tony Delisle  17:13

That’s fantastic. I like how you’re connecting trust, with transparency, being authentic. And it does take patience. Patience is a virtue. Oh, man, like, you know, we’re wanting to do things quick, fascinating in a hurry, because the needs are immense. But we can’t just show up and then expecting to know who we are and what we’re all about. They got to take that time and someone share that I find to be very authentic, very transparent, and this is who I am. And it’s just wonderful to have you out there boots on the ground, connecting with the people and building these relationships. And garnering the kind of trust that it’s priceless. That’s a value, you know, that’s it takes a lot of effort and heart to do.

Shera Curtis  17:54

That is true, it’s hard. I could speak on patience. And we have one of the issues, we had an issue out in the… it wasn’t necessarily an issue, it was more so dealing with community and knowing that sometimes you have conflict. And this was one of the great opportunities to show how you can be patient. We were doing the food distribution, and a lady had dropped her cake. And she didn’t want it, but I couldn’t take it back. And so it was just more so I can’t take it back. You can throw it in the trash, and I can give you something else. That escalated from I know that I can get another one and you’re gonna let me get another one. And I won’t set right now, I just want you to listen to me. And I was just like I am listening. But I need to just go throw it in the trash. She didn’t want to. It was just like it was just a moment where I had to be like, let me just give her what she wants. And let’s move on. So we can de-escalate this. And that was patience, because I didn’t know her logic in her approach to this. But I wanted to try to be understanding and say, You know what, whatever you need, I’m going to just do it. So we can just kind of move on and get your needs met. And so we can move on and help other people. And that was a sign of patience recently that I had to have because she stepped my face. She tried me. It was it was definitely like she was crossing boundaries. And I was I had to make sure that I was going to be patient with her that I was going to still be kind that I was going to still be professional and outreach. Those things happen more than that. You’re coming in their space. And you have to make sure you follow their rules just as much as you follow your own. And that’s a part of the trust thing. It’s still, even though I’ve been there for so many times, I’m still building trust, and relationships with each and every person. That was definitely a day for patience. Definitely a day for patience, and just being able to fall back and say, how can you make this better? How can you de-escalate this and still get the job done? And we did. We de-escalated the situation. She got what she needed. She went on about her day, and everyone else got the resources they needed as well.

Tony Delisle  19:57

Yeah, I’m glad you’re bringing that up because like anyone that works in the human services field knows that we’re working with people that are on Razor’s Edge often living on the margins, a lot of pressure, a lot of stress. So we’re meeting people, like you said, in their space at a time where they’re vulnerable. And when people are vulnerable, and they might not know who you are, they’ll project out onto you. It’ll be tough. And what I hear your response here is also not just patience, but respect, you know, having respect. And I know that’s something that you and others that work here at the center, have when people come to us, with no fault of our own, are frustrated, or disheveled, may project out onto us. But what I appreciate about you and others that work here at the center, we’re able to have that emotional intelligence, to be able to still work with people, no matter how they might be feeling, or acting, and be able to meet their needs. And that says a lot about someone that’s in your position charged with community outreach, and working with people to actually where they are. So that’s a huge part of what you do appreciate that attribute about you Shera. So if you could, you you do this essential resource distribution, a lane that Centers for Independent Living has really never done before until COVID. And, and because of COVID, now we have this opportunity to deliver resources to people that have access and functional needs. And so it’s just wonderful that our center, and there’s a good handful of centers throughout the state that are doing this as well. But you also do a lot of other things here at the center. So maybe if you could speak to some of those different areas, there’s different hats that you wear regarding some of the services that you do for the folks that we serve.

Shera Curtis  21:41

Well, I am a queen at program development. I love to come up with, if I see a need, I want to fill it. I want to fill it. And I remember when this was one of my projects, we we got the mass delivered 22,000 masks, and we were just like, oh my god, what are we gonna do with this!

Tony Delisle  22:01

This was when masks are hard to come by. Yeah.

Shera Curtis  22:03

And it was just like, we need to figure… I need to figure out a way to utilize these, get these to the people.

Tony Delisle  22:08

Literally 22,000 it was for the Florida Department of Health, thank you.

Shera Curtis  22:16

And I came up with a project it was art through PPE. So my background would I’m a teaching artist. And it was just like, I can be creative in this. And I can approach this informationally artistically, and be able to get to the communities that we need it to be informed on what COVID looks like. And it was a, it was a project for kids. So we got the masks, and I can’t wait this whole program layout on, we would give a booklet. And the booklet would be interactive. We also gave them information on you know what, what you do to prevent it? What does it look like? What does COVID even look like? You know, with kids, they’re so out of touch with reality. Sometimes, it was just like, well, kids aren’t getting it, kids aren’t dying from it. So we had to give the information on. There has been a kid that has died and has passed away in Gainesville. And what it looked like to wash your hands more to be more sanitary, to make sure your social distancing. If you’re not going to be around people that you’re around every day and knowing their routine, it’s okay to wear your mask around them. It’s okay to take those precautions. And then you can create while you’re learning. So that was one thing that I did was the Art Through PPE. And that was a way to kind of get more masks out there, especially to those who had disabilities. But those who didn’t have access to that information sometimes or weren’t receiving it the way that someone was projecting it out. So it was just a way that we can come in the community and relate to them how they knew. And one thing about some of these communities is, especially these underserved communities, they’re creative, they’re innovative, but they lack access, they lack those tools to get the information. So that was one thing that we did. I do I&R. That’s information and referral. And that could be anything.

Tony Delisle  24:09

Give me some examples like examples of I&R in the field.

Shera Curtis  24:13

There was a very active mom, she had a child who had disabilities. And she had resources, she had connections. But she was looking for more she was looking for how to transition her son when he got to an age where she was no longer going to be he was no longer going to be an adolescent where he was going to have to learn independent living skills or he was going to have to be on his own and what that looked like. So she was looking for programs that were full of resources, not a babysitting program. She was looking for a program with substance, good leadership, good program models. And I literally we were doing research together on what the programs look like comparing them to programs out-of-state. I mean, looking at grants and telling her about grant opportunities she could look into, even with how to get housing and get a like a location established where she could have a group home or transitional home and establish that herself. So I mean, I&R can start at just a simple question. Sure, it can go into research that I laid I connected this lady with, with grants with other organizations, she connected me with outsider state organizations that I didn’t even know about, that I was able to say, Hey, we don’t have this in Florida, that might be a good idea for you to kind of branch out and see what resources are available and how we can started here. Shoot, there’s, there’s a million there, there’s like a million of them. It’s from from questions to internships and, and working with students, I think that’s one of the good things. I I am a connector that is that is my gift as a… as a person. And I love letting students have the opportunity to see what real community looks like, what the heart of Gainesville looks like. And that’s one of the things that I do as well is is getting interns to come and see how they can be connected to the community through CIL. And and learn how we can help people who have disabilities, you know, reach their state of independency. And what that looks like, ideally, for on a regular basis that would just let me send you to the ILS classes every day and kind of just briefly talk to you know, we’re building relationships, I know what they’re doing on a regular, I know your mom, I know your cousin’s name. I know your auntie that lives down the street, I know about her, cuz you told me about her every time we come to class. Or if I’m out there in outreach. I’m learning about Mr. Mack, and his granddaughter, and I know his granddaughter’s grandmother, and how we make these connections. And now I come and Mack is like family, like we’re building these relationships. And that’s something that can show the students that it’s not just a job, it’s a lifestyle, it’s definitely a career path. And that’s one of the things I love about just one of the opportunities I could do is internships and that development with them and relationships. What else do I do? we’re working on a grant right now, on and off, because that’s one thing. Like grants, how to expand what we already have, and make it sustainable. One big thing that that’s for me is I want to not just give people access, I want to make sure it’s sustainable for them, I want to make sure they can, it lasts for ages. And not just and we understand what true sustainability is. It’s not just the access to economics, but how they take care of their environment, how they, how they socialize, and adapt and connect with other people around them, and how that affects them. We will talk about people’s mental health and their state and how they feel and you talked about the isolation, and loneliness, we try to connect all those things and make sure we’re able to give them a complete state of independence and what that looks like and carry them to the next phase.

Tony Delisle  28:05

Yeah, I think that’s the beauty of doing information referral is that you can get calls from so many different needs. And if we think about the systems that are out there that people have to navigate, whether it’s the health system, the education system, employment systems, transportation system, housing systems, these things systems are any one of them by themselves are massive and complicated and confusing. And the fact that we have a service that can really help walk people through that system, and to do what we kind of call the warm handoff into an agency or a resource or some, some other place that it’s not here’s a number, but here’s actually like somebody that I know like you said, that I can connect you with and now can be there to connect you with. Do you need help with an application or you know, any of these other kinds of things is wonderful. Now I know you also do another service, which is our durable medical equipment closet. I didn’t know if you wanted to talk about anything that you do related to that and how that program works.

Shera Curtis  29:04

If you’re listening we have shower chairs for days, wheelchairs for days, you can come by the CIL and come pick them up. But to be serious during the durable medical equipment closet, it, we get wheelchairs, walkers, shower chairs, anything that you need for mobility purposes, we have those housed and they’re free of charge. I don’t know how many people have been so grateful as to call and say, I can’t even get around the house. And I’m just like, we have a closet that has wheelchairs or or walkers if you need that. And it’s like a life-changing thing. I think that’s what one thing I like about the CIL is these are these are real stories. These are real people are real needs and we are able to meet their needs so quickly, which is something so simple to us but seems like mountains to other people. That’s one thing I do like about the durable medical equipment closet is that we’re able to just connect people who have like substantial needs of mobility, that they’re not getting around their homes. And we can say, hey, not only can I provide you with this, I can come drop it off to your house. You’re already having mobility restrictions. So let me make this easier for you Let me do this transition for you. They fill out the paperwork, and it is literally a sheet, their name, what they’re getting. And just a signature, and they’re able to receive those, that access. And I think that’s a great thing that we offer. I think the durable medical equipment closet is is like really good. And literally now, even with thing people on a regular basis, do you need a chair? Like, not messy? Do you need a wheelchair? Do you need these things? Sometimes they do. And sometimes they’re like, I didn’t even know you had that. But I know somebody who does. So not only are we just being a resource to them, it’s it’s like a tree, we’re definitely our branches are reaching out further, we’re definitely connecting, this is why I love the fact that you brought up the partnerships. Now Gainesville housing, those that we offer the durable medical equipment closet, and they’re able to talk to not just the locations that were there, but also others that say, hey, if you have these needs, Center for Independent Living can be that resource for you. So I’m loving all that we have over here, it’s still this, it’s been a great experience, to be honest.

Tony Delisle  31:27

Well, I really love what you brought to the table in terms of your personal attributes that you really turn into your professional strengths, being able to connect with people, whether they’re the consumers that we serve, whether it’s the other agencies that we work with, like you mentioned Brenda The mighty Food Bank, that is working very closely now with our center because of the relationship that you have made with them, and understanding what we do and who we’re doing it for. Because of that, they’re allowing us to use their food to bring it to our people. And it’s that relationship is that personal connectivity and understanding what we do and why we do it. And you’re able to do that with so many different types of people from all different kinds of backgrounds, walks of life. And that is something you can’t really train in people, you got to bring that to the table. So I just want to acknowledge you for for bringing those types of skills to our center. And to be a wonderful part of the family here that does this kind of work. So I got a couple questions to wrap this up with. You’re one of our newest members you came in and February 2020. We’re recording this in November. So we’re not even be barely 10 months with you being on here. But what would you want other people to know about people with disabilities? One of the things that we’re trying to do here at The Independent Life podcast is give people lens into the world of what it’s like to have a disability. What would you want other people to know that you perhaps have learned yourself in working with people with disabilities, or just what you’re doing collaborating with relationships, or leverage resources or, or any of those other kinds of things that you’ve been doing since you’ve been here? What would you want people to know about people with disabilities, and perhaps the work that you do?

Shera Curtis  33:19

That the walk of life that they live is not too far from where you are. I’ve found a lot of intersectionality with my life, being a black and brown person.,with people who have disabilities. There are so many limitations, there are so many restrictions, but they are persistent. I think that’s the one thing that I can say and see, that are also seeing myself or in that community is they’re persistent, they are strong, they’re resilient, having to be limited with mobility, some people who don’t have ramps that come out of their homes, how they have to get out of their homes, and push wheelchairs out the door, to jump out the house and just all these maneuvers that they have to make. But that’s normal. And then they they do that, and then they go about their day, or how their their access to getting food is limited or how they can’t fill out an application and they need assistance. But they still try to make those connections I guess to to see the needs or, or meet their needs. I think it’s we aren’t that far from where they are either. So a lot of times it’s just don’t forget where you came from. These are, they’re people too, who have real needs who have really emotions. And we have to just be mindful of that and be able to be helpful. I think it’s a great thing when we can we can really connect ourselves with people and on a just a basic, humanistic thing. Just, just be kind to people. If you see someone in need and you can provide that need, be there, be that resource Whether it’s not to give them something, but to offer them another opportunity, through CIL, or whatever it is. I guess that would be my thing is to don’t forget that we are all connected as humans in some way, shape or form. And to be kind to people to learn that helping hand. You never know how it can change someone’s day, could change someone’s life, and could provide opportunities for you even in the future.

Tony Delisle  35:26

I love what you say about you know, we’re not that far. One of the things that we’re really trying to emphasize in this podcast is that disability impacts everybody, if you don’t have one, you know someone that does. If you don’t have one, you’re likely going to get one in your lifetime. And so what we put out there, and how we help each other could be coming back around to us one day as well. And I love what you said about persistence, we’re going to in these episodes get into a deep dive about the virtues and values of having a disability. And certainly the virtue and value of being persistent in life is full of challenges and obstacles that we have to be persistent in order to get over, around, under, whatever, through. Persistence is a virtue that disability provides us the opportunity to do and to be a part of so I really love that you have found that to be something that you know, is seen through people. So what does the independent life, living independently mean to you? And from the work that you have done here at the center, from the way that us you have been witnessing people and even in your own personal life? What is independent living, the independent life mean to Shera Curtis?

Shera Curtis  36:38

Freedom to do without barriers, and with access.

Tony Delisle  36:44

Barriers and access? 

Shera Curtis  36:46

No Barriers. All access.

Tony Delisle  36:49

Love it. Well Shea, it’s a it’s a pleasure to sit down and speak with you. But it’s even more of an honor to work with you doing the wonderful work that you do. Again, you never know what you’re going to be asked to provide. When you get I&R calls in it could be from like you said A to Z, you’ve carved out a very important niche that the center has never done before delivering essential resources to the people in the community where they’re at meeting them where they’re at. It’s just wonderful. And you bring in so many different perspectives to the situation that I look forward to having podcasts about you in terms of intersectionality. And what does that mean pertaining to people with disabilities who come from different backgrounds and walks of life and the different systemic challenges and barriers that exist that could be over and above and beyond what other people with disabilities may be faced with as well. To make sure that we do have that access and those barriers. So thank you so much for all that you do for our Center for all that you do for the community. And I look forward to continuing the wonderful work that you’ve been carving out with us. Thank you and this is another episode of The Independent Life. Thank you for joining us, onward and upward.

Amy Feutz  38:06

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe to for questions, suggestions, or if you have a story you’d like to share. please email us at cilncf.org@gmail.com or call us at 352-378-7474 Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

What is the Center for Independent Living?Centers for Independent living programs work to support community living and independence for people with disabilities across the nation based on the belief that all people can live with dignity, make their own choices, and participate fully in society. Dr. Tony Delisle and Amy Feutz from The Center for Independent Living of North Central Florida, shares how these programs provide tools, resources, and supports for integrating people with disabilities fully into their communities to promote equal opportunities, self-determination, and respect.

https://open.spotify.com/episode/7y8n3il0HChjxszakzxzZu

SPEAKERS: Amy Feutz, Tony Delisle

Tony Delisle  00:00

Disability impacts everybody. Disability is a natural part of life. It is exactly what it means to be a human being. This is a space where we can all come together collectively and unite under disability. Welcome to the Independent Life Podcast where we will be introduced to the services, ideas, issues, values, and people who will empower us to become the best version of ourselves imaginable to attain our independent living goals and to be of service to others. I am your host, Dr. Tony Delisle. 2020 has been quite the year I can say that it is been full of obstacles. And so the first quote that I’d like to share with everybody on The Independent Life has to do with obstacles. It comes to us from Marcus Aurelius. “The mind adopts and converts on to its own purposes, the obstacle of our actions, the impediment to our action advances, our action, which stands in the way becomes the way.” I’m not saying that disability is an obstacle. But having a disability certainly presents many obstacles to a socially, environmentally, and in many other ways. Many obstacles are in front of us. But that is the way to advance the actions for all of us to become the better versions of ourselves, and to serve others. This is Tony Delisle, Executive Director for the Center for Independent Living of North Central Florida, inviting you all to The Independent Life podcast. Very excited today. It is our first inaugural episode. And it really has come about through interesting times, here we are. And as 2020 comes to a close, November 3, Election Day, very interesting times that we’re in and to quote, somebody who said, “Never let a good crisis go to waste.” And here we are, trying something that’s different for us to do better outreach to our community to let them know who we are, and to empower people with disabilities. We are looking to really explore new ground, get outside of our comfort zone and invite you all to listen into us in the comfort of your own home, to learn more about the world of disability and living independently, and I’m joined here today with my colleague, Amy Feutz, who is the Associate Director for our center. 

Amy Feutz  02:43

Hi, everyone. 

Tony Delisle  02:44

It’s a pleasure. Like I couldn’t think of a better person to share this episode with you, Amy. Yeah, we’ve been through a lot together. And we were born on the same day August 4, I’ll withhold the year. So very excited to have a conversation with you, Amy.

Amy Feutz  03:00

Yes, great. We can get started. I think what we’re going to do is just start with the Why. Can you help our listeners better understand why CIL exist? Why is there a need? Why should anyone both with or without a disability care?

Tony Delisle  03:13

Because people with disabilities forms the largest minority group around one in four people in our country has a disability. And when we look at the data, it doesn’t lie. People with disabilities are less likely to graduate high school. 65% graduation rates with people with disabilities compared to around an 87% without disabilities. People with disabilities are two to three times more likely to be unemployed. People with disabilities are more likely to live in poverty. People with disabilities are more likely to live shorter, sicker lies from preventable diseases. Twice as likely to have cardiovascular disease, diabetes, stroke cancer… People with disabilities are less likely to afford housing, to have accessible housing, less likely to have adequate transportation. People with disabilities have more difficulty being included in everyday life and society, whether it’s due to effective communication, whether it’s a program access, people with disabilities are more likely to be vulnerable during disasters. We live in Florida. So hurricanes, we’re living in the middle of pandemic. People with disabilities are much more likely to be impacted by this pandemic. And so people with disabilities, unfortunately, are more vulnerable in many of these situations here. And so we exist to really empower people with disabilities to live independently and to beat these odds.

Amy Feutz  04:38

When you hear the name, Center for Independent Living, a lot of things about what we do here may come to mind. So what exactly happens here at the CIL?

Tony Delisle  04:47

Well, first of all, what we are not as an assisted living facility, we’re not a residential care facility. We don’t have beds. We are here to empower people to live in the community to whatever extent possible and that manifests in many different services and programs. We’re a nonprofit service agency, we serve 16 counties. Within our catchment area. We serve all disabilities, all ages, our services are free for all people. And so the services are really aligned with the why. People with disabilities are less likely to graduate from high school. So we have a high school high tech program that has a graduation rate of nearly 99%. We have a very robust Employment Services program that works with over 100 people at any one time trying to find meaningful and sustainable employment for them, and working with our business community to debunk many of the myths that are out there regarding hiring people with disabilities. We make sure that people have effective communication by providing sign language interpreting services programs for people. Because affordable housing’s such an issue, we work very hard to get public vouchers for people to get adequate access to homes and then making sure that those homes have access. Whether it’s wheelchair ramps or home modifications are durable medical equipment that might be needed to keep people in their homes, we make sure that we have that as well. Again, transportation being such a huge barrier. We are providing eligibility screenings to see if people are eligible for paratransit services and the type of paratransit services and if they need help navigating the bus systems, we provide some of those as well. We provide independent living skills classes where people can learn how to live healthy lifestyles, where people can come together, and peer support and social isolation and loneliness is a huge thing with people. And this is a place where people with disabilities can be supportive of one another and learn how to advocate for themselves, learn how to communicate, learn how to solve problems, and really come together as a community. And we’re very involved with emergency management. We work with emergency management professionals to educate them on the needs of people with disabilities, and connecting them with the community of people disabilities. We make sure that the shelters are accessible for people. We provide access to the community to get to know our emergency management professionals. Also in the time of COVID, we are distributing food and other resources to people in their homes, because people with disabilities that we serve often don’t have the access to food, to self care products, to disaster supplies, and other types of essential resources that people need during this pandemic. We were able to actually deliver them to people where they actually live in their communities. And it’s a really great opportunity for us to even reach more people throughout our 16 County catchment area. And if we don’t have the resources or the services for people with disabilities, we are so connected within our community. We have community partners that are throughout our catchment area that we work very closely with that we link them in through our information and referral services. And make sure that they have access to the resources and services that are out there within the community and really kind of come together to serve our population through the many different wonderful partners that we have.

Amy Feutz  07:58

Wow, that’s a lot. That’s a lot more than just a residential facility.

Tony Delisle  08:02

Yes, and we’re not here for pity. We’re not here for a handout, we’re here for a hand up. We really come together. And one of the wonderful things I love working here at the Centers and you know, I have a disability, a vision disability, I’m legally blind. And nearly two thirds of the people that work our center here have a disability. Over half of our board has a disability and all Centers of Independent Living have more than half of the staff having a disability. Who better to serve people with disabilities than people with disability?

Amy Feutz  08:32

We’re all about consumer control, correct? Yes, yeah. So that’s great. Now that we’ve learned a little bit more about the CIL. Can you tell us a little bit about yourself and how you initially started with the CIL?

Tony Delisle  08:43

Sure, like I mentioned earlier, I have a vision disabilities a degenerative disability, likely will go blind in my lifetime. And that’s something I’ve been challenged with for most of my life, whether it was education, meaning the accommodations I needed, but once I you know, outside of the academic setting, in the community, I relied on Centers for Independent Living to live independently, actually the one in Winter Park, the Center for Independent Living in South Florida, it was fantastic. And I wouldn’t be here sitting here today, if it wasn’t for those people that work there. And were able to provide me first that sense of community empowerment, and then the services that they were able to provide to me to really get to where I am to be able to continue on with my academic development, to be empowered to get go for the careers that have allowed me to be able to come back and serve other people with disabilities. And so it just so wonderful to be in the position that I am today. Because I was served by a center and just really inspired to help others that may have been in the situations that I was in to be able to lift them up to live the independent life.

Amy Feutz  09:53

Thanks so much for sharing that. I think it’s great you have a consumer perspective and now that you are our executive director being able to bring that perspective and how we serve our consumers, so I think that’s fantastic. And I appreciate you share that little bit of history about yourself. Now that we know a little bit more about you, I’m sure more on how CILs got started.

Tony Delisle  10:21

Sure. Ed Roberts is the gentleman who’s known for really starting the Independent Living movement, early 60s. He wanted to go to Berkeley. And back then they didn’t have a Disability Resource Center, they didn’t have wheelchair ramps, they didn’t have the Equal access and accommodations that thankfully, the universities and other schools have nowadays, to be able to do this. And so through his advocacy, he was able to go to Berkeley, and to become just this amazing advocate for independent living. And of course, this happened during the Civil Rights era. And with most social movements, they don’t exist in a vacuum, and they often juxtapose with one another. So a lot of the tactics and techniques that we’re using the Civil Rights Movement for advocacy for civil rights, were adopted for the Independent Living Movement, and it culminated in actual Congress passing the 1973 Rehabilitation Act. And that was a law that went into effect that, among other things, has funded Centers for Independent Living throughout the United States. And the idea being at that time, people with disabilities were pretty much warehouse and institutional facilities. And that’s how they were cared for, for the most part. And so with the 1973 Rehab Act really helped to get people disabilities out of the institutions and into the community, living in the community. And that is manifested into many of the different services and programs that I just described. And to prevent people from going insane institutional care facilities, whether that’s assisted living facilities, skilled nursing homes, homeless shelters, foster care, our prison system, domestic violence shelters, all of which have high percentages of people with disabilities. And so that’s really the space that Independent Living was carved out of, but then there’s other social movements that it came into intersections with. The consumerism movement, and that’s who we refer to people that access our services, our consumers, the idea being, that they’re the experts, they’re the ones that can identify their needs, and therefore they’re the ones that really drive the types of services that we provide to them. The self improvement movements that were out there about how we can really empower ourselves to live the independent life. And then the Demedicalization of disability. So the idea being that we’re, you know, we’re not, you know, something to be cured. My disability is a permanent disability. And I’m not a problem to be solved, but rather, looking at the social and environmental context in which disability takes place, and addressing many of those factors is getting outside of that medical model of really approaching disability. And the idea is also that, you know, the Independent Living philosophy says that we’re a diverse community, we actually have a lot to offer our society. Through the different life experiences that we have, we can be a valuable and contributing member, we share, you know, similar history, similar challenges. We just have a lot to offer people and we are stronger together unified. So this is part of the Independent Living philosophy, the independent living movement, and our independent living services.

Amy Feutz  13:30

That’s excellent. Tony, I do encourage those listening to please learn about the history of how CILs got started. It really is fascinating, and you’ll learn a lot. So Tony, now that our listeners have an idea of what CIL does provide for our consumers, how does someone reach out and connect with us, especially during this time?

Tony Delisle  13:55

Sure. So one of the best things to do is to go to our website cilncf.org. You can call our center. We have two offices, one here in Gainesville, and one in Ocala. Our Gainesville office is 352-378-7474 that’s 352-378-7474. And our Ocala office is 352-368-3788. That’s 3523683788. And so reach out to us, we want to we want to serve people and if you’re listening to this and you’re outside our catchment area, we’ll make sure that through the show notes or other resources, you can identify the Center for Independent Living in your area, as we want to make sure that we connect you to them because all the centers in Florida there’s 15 Centers for Independent Living in the state of Florida, and there’s nearly 500 nationwide. So this is a big network. And we want to make sure if you’re listening to this, that you know how to find your Center for Independent Living. So we’ll make sure that you have those connections and that contact information as well.

Amy Feutz  14:59

That’s great. Thanks so much. It was wonderful chatting with you, Tony.

Tony Delisle  15:03

This is very special time. This is a very special occasion. And I’m overjoyed with this. Again, I don’t think we would be here if we weren’t in necessarily a crisis. So what a great opportunity to serve better. Well, once again, Amy, it’s been a pleasure to have this conversation with you, this opportunity to bring this message out to a broader audience. I hope this really sparks conversations with people that are out there that we can raise awareness about Centers for Independent Living across Florida, across the nation, that people can feel a sense of community, empowerment, and unity through this because again, disability impacts everybody. If you don’t have a disability you know someone that does, and if you don’t have one, you’re likely going to get one. It’s just a part of human nature. But it doesn’t mean it’s the end of your life. In fact, it could be the beginning of your life. And this episode is the beginning of many more to come, where we can come together as a community with Unity through disability. Very exciting.

Amy Feutz  16:05

It is very exciting. Thanks so much. It was great chatting with you, too.

Tony Delisle  16:08

Thank you so much for this first step of 1000 mile journey or more. And we look forward to having many more episodes where we can share perspectives, ideas, issues, letting people know about the services that are out there. This is very exciting, The Independent Life first ever episode very excited to have you all join us for this and many more to come: The Independent Life podcast.

Amy Feutz  16:34

Thanks for listening to The Independent Life podcast brought to you by the Center for Independent Living of North Central Florida. If you like what you hear, please rate, review and subscribe. And if you know anyone who might benefit from listening, share this podcast and invite them to subscribe too. For questions, suggestions, or if you have a story you’d like to share, please email us at cilncf.org@gmail.com or call us at 352-378-7474 Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.