Dr. Vincent Venditto is an Assistant Professor of Pharmaceutical Sciences at the University of Kentucky College of Pharmacy. He received training in vaccine design and immunology and continues to investigate vaccine strategies to better understand how the immune system works in disease progression. On this episode, Dr. Venditto speaks on the importance of getting the vaccine and helps to clarify some of the questions surrounding the COVID crisis. We also discuss the impact of COVID on the population of people who have disabilities and issues related to the access barriers for getting vaccinated.

For more information:
Fact vs. fiction: https://pharmacy.uky.edu/news-events/archive/covid-19-vaccines-fact-vs-fiction
Top 10 questions: https://pharmacy.uky.edu/news-events/archive/10-quick-questions-about-covid-19-vaccines

https://open.spotify.com/episode/2NA10yiglQhTgytfQdmc0C

SPEAKERS: Vince Venditto, Tony Delisle

Tony Delisle  00:00

It is in our nature, to want to grow, to expand, and to learn more information, to acquire knowledge, and wisdom. And to be more that comes from Abraham Maslow, and I believe is a very important quote that relates to making sure that we have the most accurate information possible when making choices. In order to learn and grow, got to have the right information. And today, it can be a very difficult time to get the right accurate information. And so in today’s podcast, as we interviewed Dr. Vincent Venditto, to get more information about something that’s really important to be informed on the vaccination for the COVID-19 virus, and for people with disabilities, to get the accurate information about that, to have that knowledge to have that wisdom to learn more is important in terms of this topic, so that we can be more so I look forward to you hearing this episode. Hey, welcome back to another episode of The Independent Life. I’m here with Dr. Vince, Venditto. He comes to us from the University of Kentucky College of Pharmacy, and He is an expert in infectious disease and vaccinations. And he is come here to have a conversation with us because I think what he has to share is very important for us to understand and making important decisions regarding the COVID vaccination, and people with disabilities. So there’s a lot to unpack here. And before we do, please tell us a little bit about who you are and what you’re an expert in in this area, and why you have the credentials and background to have the information that we should be listening to.

Vince Venditto  02:06

Great, thanks. It’s pleasure to be here. So my background, I got my PhD in Chemistry actually at Texas A&M University. And then for a postdoc, I went to do a to learn how to make vaccines to use my Chemistry experience, and learn how to make vaccines and learn about immunology. And so really, it was through this process that I that I really got the experience and expertise that that brings me here today. During my postdoc I was i was focused on making HIV vaccines and trying to develop this was out at University of California in San Francisco. And I was I was developing HIV vaccines trying to, you know, to address another public health need where we really do need a vaccine. And so since moving to the University of Kentucky, I’ve kind of retooled the the technology that I was using the vaccine technology to focus on studying immune responses in other diseases where we think vaccine technology could have an impact like in cardiovascular disease. So a lot of my work right now actually focuses on trying to modulate immune responses in the context of cardiovascular disease. But the other thing that I’ll say that AI is really important, and I think really what brought me to this point is certainly I have this experience in training in vaccine design and Immunology. But there’s so much misinformation out there, and scientists who have experience and understanding about the vaccines about the process that we’re going through. And you know, I mean, we’re all completely surrounded by COVID-19, inflammation and misinformation. And so, as a as a scientist, and as a person who’s interested in in scientific communication, and making sure that the public is properly educated, I cede my duty to inform as many people as possible on the appropriate information and trying to dispel some of the myths, misconceptions that are out there.

Tony Delisle  04:06

Well, you have your work cut out for you, because it just seems like the onslaught of misinformation out there in the platforms that is just been multiplied over the years. And it’s been interesting and somewhat disheartening, being someone myself from public health, to see how much misinformation around COVID-19 has been out there, how it’s been a real challenge for people like yourselves, to really combat that misinformation is very valuable and appreciate your efforts and being able to do that, because that is certainly one of the most important areas is to, you know, have the right information, the correct information to make the informed decisions that we need to make and thank you for making sure that we are bringing the right evidence base information to the forefront before I dive into the you know, why should we get vaccinated What’s this you know, science behind the reasons of why We should add to your understanding about, you know, COVID-19. And its impact perhaps on people with disabilities, when we look at, you know, the people that are most likely to, you know, be impacted by COVID? And who that might be and pertaining to disabilities. Do you see anything in terms of the raise prevalence or issues related to COVID? pertaining to disability to your knowledge?

Vince Venditto  05:25

Yeah, so I it’s it’s a good question. I mean, you know, I think what we see right now with people that are impacted by COVID-19, it’s it’s it’s affecting people who have health disparities in other areas. So people who have increased rates of heart disease, increased rates of diabetes, increased rates of lung conditions. And so, you know, this is, I would say, across the board, anybody that has increased rates of those conditions are certainly going to be impacted. And I know that you shared some data that these rates are are increased in people living with disabilities. And so, you know, really, I think of concern because getting infected with coronavirus, if you have one of these conditions, and you’re in one of these populations that maybe doesn’t have appropriate health care doesn’t have the appropriate access to care, then getting infected can really have a huge impact on your life and long term effects on living and long term health conditions. 

Tony Delisle  06:24

So thank you for bringing that up, that people with disabilities are more likely to have cardiovascular disease, respiratory disease, diabetes, though secondary outcomes that are related to COVID-19. But also people over 65, you know, over half of all people over 65 have a disability as well. And then I looked at a lot of the, you know, rates in institutionalized care, and you know, how many, the percentage of people in institutionalized care, the nursing home facilities, you know, do have disabilities, as well, and the impact that it’s had on our community, in that sense. And so I do believe that, you know, COVID-19, and its impact on people disabilities is, is an important area to understand more on what’s happening so we can do better to serve. And so I appreciate your pointing to some of that information in terms of that sense.

Vince Venditto  07:12

So I think the other point that you just brought up is people living in institutionalized care, and that really, is kind of optimal place for coronavirus to spread through a community. So you know, if coronavirus comes into a place where there is, you know, it where it’s difficult to physical distance from other people or, you know, nurses are potentially carriers of the virus and, and so even if you’re vaccinated, and we can get into this a little bit later, even if you’re vaccinated, you could still potentially spread, but it’s just going to keep you from getting sicker. And so that’s why the vaccine is so important for people living in different settings with close quarters, and where there’s a lot of high end interactions with other people. So yeah, I mean, the vaccine is just so important. And we can talk about that more in a bit, I guess.

Tony Delisle  08:02

Are gonna ready to jump in on that one. Yeah. Right now, but I feel like there’s something else to before we, you know, put a bow on the institutionalized care, because like there, yes, we’re Centers for Independent Living. So in a way, we have the space that’s somewhat juxtaposed to institutionalized care. So we try to make sure that people with disabilities to whatever extent possible can live in the community, or the least restrictive environment possible, and preventing any type of institutionalized care if possible. But do you see the role for institutionalized care? There’s certainly a need for institutionalized care. And does this mean that perhaps we should look at how institutionalized care is done differently? Is there ways of doing it non congregate ways of doing it to, you know, institutionalized care that would mitigate the amount of close quarters that are people in with maintaining connection and community perhaps, I don’t know it for me, it makes me think about the model in which it’s currently in and the model which currently could be to be the best one that, you know, would help mitigate the effects that we’re seeing from COVID-19.

Vince Venditto  09:09

Yeah, I mean, I think it’s a great point, and I wish I had an answer to it.

Tony Delisle  09:12

Yeah, I just throw that out there. Yeah.

Vince Venditto  09:16

I mean, I yeah, I it’s certainly something that I think that you know, coronavirus in the pandemic has really brought up a lot of things in how we care for people and how we think about our normal daily lives and how we can change how we’re living to improve the you know, the care for all people, whether they’re, you’re in an institutionalized setting, or you’re, you know, or you’re, you’re in your own home, and I think all of those things have changed because of the pandemic and I think will continue to change because of the health disparities that we’ve seen come up with, you know, different conditions, different living settings.

Tony Delisle  09:52

So please tell us why, you know, there’s there’s a lot of us out here again, have information misinformation, overload. And everything else like that. Why is it that we should get the vaccination for COVID-19?

Vince Venditto  10:06

Yeah. So I mean, the short answer is that it’s going to keep you out of the hospital or it’s going to keep most of the people out of hospital. This is the data that they collected with the clinical trial. And that is that in the 40,000 people or thereabout. 40,000 people that were included in a clinical trial, people who were vaccinated had had better outcomes, they didn’t have the progression to hospitalization, they didn’t have any of the sudden severe disease that we saw on people who were not vaccinated. And that that alone is is the importance of getting the vaccine, it’s really to keep people out of the hospitals, and keep people off of ventilators, the vaccine is designed to give your immune system just a little bit of a boost so that you can help fight the virus without succumbing to the pretty serious consequences if you are infected.

Tony Delisle  10:55

So is there any, like certain health conditions or types of disabilities or anything that you know, group of people that might have a certain type of condition should, you know be wary of having the vaccination at all that you want to say, Hey, baby, you know, check with a doctor before you get the vaccination if you have such and such condition?

Vince Venditto  11:18

Yeah, so I mean, my blanket response really is anybody that has some concerns should definitely talk to their their primary care provider, their physician, about their specific conditions, their specific concerns, because I certainly don’t have all the health information for everybody that has those questions. But I, you know, based on on what we’ve seen so far, really is that there have only been a few, really, I think, severe adverse responses. And this is, they’ve seen pretty strong allergic responses, really, it’s only been a handful of people. You know, they’ve they’ve immunized I don’t know how many million people so far, but they’ve only seen this really strong anaphylaxis response in maybe about 20 or 30 people. So it’s a relatively small number of people. But they have issued a warning, you know that if you have a strong anaphylactic response to other things to foods or to this isn’t seasonal allergies, this is something that that requires an epi pen or requires hospitalization at something that you’ve had in the past. And so they are indicating that if you have any anaplastic reactions in the past anything that you talk to your healthcare provider, make them aware and and if you are getting the vaccine, which is still recommended, it should be done in a clinical setting, rather than in a drive thru clinic, where professional care is there in case you have any strong responses. But again, they’re rare. So you know, it is recommended that most people get the vaccine.

Tony Delisle  12:54

Gotcha, gotcha. So yeah, that that definitely, you know, is one thing that goes through people’s minds about reasons kind of why not to and, you know, it’s thinking of other reasons that, you know, I’ve heard from people I know, friends, I know, and etc, why they shouldn’t get the vaccine, and I want to hear maybe, what do you think of him? So, you know, I have some people that say, hey, look, the trials, you know, for this vaccine, you know, maybe went off in April, May, or whatever it may be, it’s been such a short amount of time to develop a vaccine of this nature against a virus like this, like a true amazement of like science to be able to do something this fast, like quite incredible, mind blowing, and say that well, because of that, you know, nature, we haven’t had enough time longitudinally to kind of see the effects of what the, you know, vaccine might do to us in terms of any kind of, you know, reactions to it right away or down the road. So, I’m gonna wait and see, you know, what, how this pans out? And you know, so I’ve heard that before. So what would you tell someone like that, that, you know, has those kind of reasons why they might not get vaccinated?

Vince Venditto  14:05

Yeah, I mean, I’ve heard this quite a bit, too. And I think it’s understandable. But let me tell you why I’ve gotten vaccinated, even though those concerns do exist in the community. And so first, let me talk about the approval process. And then I’ll talk about some of the what we see in side effects with with other vaccines and the timeframe of those. So this approval process, you know, it was the fastest vaccine to be to get approval from the FDA and that it only took a year and that, you know, that is quicker than the next fastest, which is the measles vaccine, which took four years. And the reason that this process was so yeah. Yeah. And it’s a testament to the science really, that that this happened. Yeah. And to the public investment in the federal investment that to get us to this point.

Tony Delisle  14:56

Yeah, I think I’m so glad you’re saying that. I think that does need to be acknowledged. That’s really a great amazing feat that has been accomplished.

Vince Venditto  15:03

It is. So the the mRNA technology that’s the basis for both the Pfizer and Moderna vaccines that was really devised, I would say in the not in the 90s. And it was it was designed with the goal of doing a rapid development of a vaccine. And we can get into the the way that works in a little bit if you’re interested. But, but basically, because it was designed for rapid rollout, and and it was, you know, they they kind of invented the technology in the 90s. They then started to continue to optimize the technology, they were doing a lot of preclinical studies in different small animal and primate models. And then when MERS came around when SARS came around, these are other coronaviruses that happened. I guess SARS one happened 13 years ago, or something like that, I forget the actual date. So when that came around, they wanted to do a clinical trial with the same technology. The problem is it didn’t spread around the globe the way that it did for this pandemic. And so they weren’t able to actually immunize the 40,000 people that they did in the phase three trial, like they did for this pandemic. And so while it was being developed for these other, these other viruses, they never had enough people to do a proper controlled trial. And so did you have a question?

Tony Delisle  16:24

No, I was just like, like, really appreciating how they’re able to scale this up? Yeah, have been able to do this. I marvel, I marvel at the administrative and the scientific level. I mean, gather to coordinate, you know, it’s To me, it’s like the moonshot. Yeah, you know, in a way, it’s like a moonshot opportunity, you know, point in science that I think needs to be like seen like that. Right? Absolutely. So again, that goes back to that, you know, I guess person that saying, Well, again, you know, that comes in part and parcel with the notion that, you know, we haven’t seen enough time with it. But I also have other people that are weighing like, oh, that, you know, this cost benefit analysis that they have in their head where, you know, what, whatever reaction I might get out of the COVID-19, or your reaction that I have, it’s not gonna be any bad, but COVID, I’ll be COVID. It’ll be okay. Whatever I can do. COVID is not gonna be as bad as whatever I’m actually getting from this vaccine and kind of having that attitude. What do you would you say to that kind of reason for perhaps not getting the vaccine? Yeah. So

Vince Venditto  17:30

As this vaccine went through clinical trials, the FDA told them that they had to wait for at least eight weeks after the second dose in the phase three trial to determine if there were any side effects. And the question is why eight weeks. And that’s because generally, any adverse event that’s seen with the vaccine with any other vaccines, they generally occur either immediately after immunization, or 68 weeks later. And because we haven’t seen that the risk of the vaccine is actually quite low, obviously, we’re still monitoring, we’re going to be doing studies monitoring these patients for years to come. And so you know, all this stuff will will play out over that time, but but based on all of the evidence we have, from all of the vaccines, six to eight weeks is kind of that sweet spot. And if you don’t see anything by then, then they’re relatively safe. And if you compare the risk, the the very low risk of the vaccine, with the relatively high risk of actually getting infected, and potentially hospitalized and potentially even dying from the virus, the risk reward with the vaccine is certainly advantages, the the benefits of the vaccine as opposed to the virus getting infected.

Tony Delisle  18:45

So gotcha. Thank you. So when we talk about people also wanting to give the vaccine, some of the things that people you know, having leery about also are kind of related to sometimes things that have happened in science in the past that have been confusing to people and also led to a movement. And since what I mean by is, is that there’s been, you know, an anti vaccination movement. And one part of that, you know, story of the anti Vax movement is that it is linked to people that have autism. And so that, you know, is directly related to disability and vaccinations and perhaps, you know, you know, could have repercussions today, in terms of some people and whether or not they want to get this COVID-19 vaccination as well. So, is there anything that you would have to say to somebody that, you know, kind of is, you know, connecting those things together with getting the COVID vaccination? 

Vince Venditto  19:42

Yeah I mean, you know, first of all, none none of those things are actually true all the that data has been proven to be falsified and not accurate. But this anti vaccine movement has been going on since vaccines were developed by Edward Jenner. And there were a lot of political cartoons indicated. That people who were vaccinated were turning into cows. And this was around the smallpox vaccine, where they were taking cow pustules. And so there’s, so this is not a new thing. And they, you know, they went from saying that people are going to turn into cows, too then saying that when the paper was published, saying that the vaccines cause autism, none of these things are true, and none of them have been have been shown to be true. And that paper that linked autism to vaccines was proven to just not be correct. But there’s a lot of people in the media, there’s prominent celebrities and politicians that continue to promote this just false science. And, and that, that’s pretty detrimental. Because there’s a lot more people that know these celebrities than know me. And so I can only do so much, I only have such, so big of a platform. But they they reach so many more people so much more easily. So it, it’s easy for them to get their false science to people rather than me trying to dispel those myths. So really, there is no connection to any of these disabilities, I can set tell you that. There are some occasionally some side effects that are observed in vaccines, and we haven’t seen any of them with the Pfizer maternal vaccines. And those observations are typically made during clinical trials. And if there is a high abundance of the side effects, then they wouldn’t approve them. And so and we’re not seeing any of that with these vaccines. So these vaccines seems safer than most other vaccines that are on the market. And, and they’re all safe, too. So you know, it’s it’s, it’s really a testament to the science and the opportunity here to actually target other viruses as well. 

Tony Delisle  21:45

Really, that makes a lot of sense. And there is a consensus. Yeah, that I’m aware of in the research that says that it is not linked to autism, I believe the article you’re referring to was in the Lancer. It was retracted. I think it was one of the rare times like, you know, an article, at least in that kind of a publication is retracted. Right, you know, for good reason when you go back on it, so, so I’m glad you brought that up. So if you get the vaccine, I know, a couple common questions that people might have is that if I get the vaccine, does that mean, I? Am I still able to get someone else infected? Or am I protected from getting someone else infected? So if someone gets the vaccine, you know, can they get someone else? You know, COVID? Or are they immune to that?

Vince Venditto  22:35

Yeah, so it’s it’s a good question. It’s something that we’re still trying to figure out what the clinical trials did was they determined whether or not people who were vaccinated would have less severe disease. And the clinical trial showed that if you’re vaccinated, you have less severe disease, it did not prove that if you’re vaccinated, that you can that you won’t transmit to other people anymore. And so it’s important that if you are vaccinated, that you continue wearing a mask, you continue physical distancing, washing your hands, until we actually prove that the vaccine prevents transmission. And right now, we just don’t really have all the data to say that.

Tony Delisle  23:13

Okay, all right. Fair enough. And, you know, as we’re recording this, you know, January 27, seems like it’s a race against time, you know, the clock’s ticking, for sure. At the same time, we’re hearing, you know, different strains, you know, coming out of different countries at this point. And these are hybrids. And then, you know, questions get raised about, well, well, this vaccine that’s currently be distributed, be protective against these other strains. Is there any educated guess there? Or what’s the thoughts?

Vince Venditto  23:43

Yeah, that’s that’s a good question. So I think there’s, I’ll first say that mutations in viruses are very common. And I could tell you the data that we see in Kentucky right now is that there have that been about 23 mutations in the virus in the past year. And so that’s a relatively low rate of mutation, which are some and none of those mutations have really led to any dramatic differences. We’re not seeing increased infectivity, we’re not seeing any increased and this is in in Kentucky I’m referring to now there are some of these variants and mutations that are occurring. There’s this one that a lot of public health, individuals are looking at to make sure that to look at the transmissibility, and the infectivity, and every time a new mutation arises in a community, they then make that virus and they then test to see whether or not the vaccine can still neutralize or limit infectivity. And so far, the vaccines have proven to do their job. The nice thing about the vaccine technology though, is if we find that there’s a variant that’s coming around, that does not respond to the vaccine that’s currently approved. It’s a relatively easy process to get an new vaccine made, because you’re just changing the few, a little piece of the genetic code that’s in the, it’s in the vaccine. Wow, that’s good. And the approval process will actually be much faster because they’ll they’ll have to do a small clinical trial to show that there’s no additional adverse are no, there’s no adverse events that come up with this minor change in the genetic code. But everything else is effectively the same. And it’s not anticipated that changes to the genetic code of the vaccine is going to impact safety or efficacy. So I imagine that in a matter of months, we can have a new vaccine to get to people, if a specific strain starts circulating, that is different and more virulent.

Tony Delisle  25:45

That’s very encouraging to hear. That’s great to hear. Well, so alright, so to kind of round this out, the one end is developing it, the other would be then, you know, getting it out to people. We’re trying to be a part of where we can encourage people to say yes to it. But then once you say yes, you know how people can get LinkedIn and go about that? Are you on kind of inside about, you know, how best practices would run in terms of getting your vaccines to people, especially like with disabilities, who may be in the community, but have limited access to the vaccine, you know, how they can get it, you know, in a way that’s effectively communicated to them and offered in a way that’s accessible to them as well? Are you in on your that kind of end of the vaccination coordination?

Vince Venditto  26:32

I’ve not, and I don’t envy the the people in those positions. Who are, I think the one thing that I would say, though, is, I think politicians have a lot of pull in this area, and they’re the ones that are making the laws on how the vaccines are distributed. And so I would urge anybody who’s listening to this to, you know, write your senators, right, your Congress, people that that the state and federal level, and tell them that it’s important to get vaccines to the, to your community, and, you know, I would certainly encourage people to do that. And, and it’s so important to make sure that everybody has access to this, and certainly those with, as we talked about previously, people with increased risk for cardiovascular disease, lung disease, diabetes, things that that, you know, are elevated in, in the disability community. So, yeah.

Tony Delisle  27:22

Thank you for bringing up that point, that’s something that we really want to underscore here at the independent life is, people getting involved at the local and state level on advocating and this is certainly an important place to advocate for, I think, also, because people with disabilities aren’t necessarily included in the first round of priority. People that you know, should be getting the vaccine. And, you know, there’s good reasons of, you know, why the data, my point is why we should be, and so, you know, advocating for us to make sure that, you know, we do get the vaccine at the appropriate time because of the need, and it being there, I think is a very important thing, that’s a real time advocacy issue for our community right now, to end and to be able to do it in a way that you know, people have access to, and will be able to get it, you know, just as equally as anyone else will be able to so I can appreciate how you don’t envy, that part of the lift that’s going on. Like that, again, is a you know, a systematic moon left, there will also have to happen in coordination with the incredible feats of science that is occurred as well. Alright, well, let’s try and put a bow on this, if you are giving me your elevator speech, you know, to everybody about Okay, why we should get vaccinated. You know, why the people perhaps even living with somebody who has a disability get vaccinated, because they’re going to be around them all the time, and etc. You know, why should we get vaccinated? Why should we be doing this right now?

Vince Venditto  28:45

Yeah, I mean, it’s so important to get vaccinated to keep you out of the hospital. And after you’re vaccinated, it’s important to continue wearing a mask, physical distancing, washing your hands, to keep the people around you out of the hospital, you know, until everybody has access to the vaccine, we’re still living through a pandemic. And so we need to not only protect ourselves with the vaccine, but protecting our communities, and those around us is so critical. So I would encourage everybody to get the vaccine, speak with your health care providers. And, and, you know, hopefully, we’ll be through this soon so we can get back to, you know, life as as new normal, I guess, right?

Tony Delisle  29:24

Yeah, it’ll be very different on the other side, that’s another fascinating conversation to be had about, again, you know, how can we do things different moving into the future, you know, we just do one little nugget out there about institutionalized care, but there are many more to consider as well, you know, to mitigate it, you know, in the first place, and maybe perhaps one day we can continue a conversation though, going down. There’s other areas that would be very interesting to talk about and related to what you do and what you do is I just want to acknowledge you, and thank you for doing the hard work that it is there for you to do. This is an easy work that you’re a part of, it takes a huge amount of you know dedication you know, PR personally and professionally to do the work that you’re doing then to go beyond that it’s kind of above and beyond and to really feel that it’s their responsibility to get this out to the public and to you know, in a way that they can understand and real information and make a really good informed decision on and so I just want to acknowledge you for taking that you know, extra leap even beyond you know, the incredible work that you already do, you know, in this field to reach out to the public and communicate this information in a way we can absorb so that’s huge and for you to put yourself out there and to do this and you know, your time super valuable, says a lot about you and and yeah, can go a long way. And abating my opinion about the University of Kentucky being over here in the University of Florida, you know, sometimes there’s a bias in the community. And, you know, so you know, these are times where we can work and be more diverse and so I can be more accepting of, you know, expertise that come out of this institution. So I say all that and just because of, you know, our connections and love for one another’s universities, I’m sure all right, yes. But uh, but uh, hey, well, I again, you know, thank you so much for your time. And, you know, if ever to continue the conversation and really promote pro messaging, you know, for vaccinations, I’d love to call on you and continue getting good information out to the people that we can make a better informed choice here.

Vince Venditto  31:31

Thank you very much for having me. And I appreciate being here and I appreciate what you’re doing for the community. So I’d be happy to come back anytime.

Tony Delisle  31:40

All right, thank you, Dr. Venditto. All right, again, another episode for the independent life until the next time, onward and upward.

Amy Feutz  31:50

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 or suggestions or if you have a story you’d like to share, please email us at cilncf.org@gmail.com for call us at 352-378-7474. Thanks for joining us. Until next time, support, advocate and empower each other to live the independent life.

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.