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.