What’s Up WID: Celebrating the ADA & Moving Forward Transcripts

Ashley Inkumsah:

Hello everyone. And welcome back to What’s Up WID: The World Institute on Disability Podcast, where we discuss what’s up in the disability community with activists and advocates across the globe. Now, I’m excited for you to join me for a very special episode of What’s Up WID where we are celebrating the Americans with Disabilities Act being passed 31 years ago today.

    I had a chance to speak with two people who are doing some amazing work in the realm of public policy and independent living, both based out of Florida. Olivia Babis is a senior public policy analyst at Disability Rights Florida. She was also previously the peer mentor at the Suncoast Center for Independent Living in Florida. 

    Sarah Goldman is the director of administration and youth initiatives at the Florida Independent Living Council. She also previously served as a legislative aid in the Florida Legislature and the three of us had a great conversation in celebration of the ADA, and discussed the many changes that still need to be made moving forward. 

    And I hope you enjoy today’s conversation. It’s so wonderful to have the both of you on today’s episode of the podcast to commemorate the ADA turning 31. My first question for all of our guests is always, how are you, or in this case, how are the both of you doing today? We can start with Olivia. 

Olivia Babis:

I’m doing good. I appreciate you having us on today. We definitely enjoy having these conversations about disability rights, and pertains issue that doesn’t get as much attention as it should a lot of the times. 

Ashley Inkumsah:

Absolutely. I agree with you. How about you, Sarah, how are you doing today? 

Sarah Goldman:

I’m doing well. I echo off of Olivia. Thank you for having us on here today and love that we’re doing a special feature episode, not only the month of ADA, but also Disability Pride Month as well. 

Ashley Inkumsah:

Yes, I am so, so excited to have you guys both on. So another question that I always like to ask all of our guests, really to get to know them a little bit better and for our audience to get to know you a little bit better, how did the both of you get involved in the public policy disability inclusion space? And Sarah, you can answer this question first and then we’ll go over to Olivia. 

Sarah Goldman:

So I was born with cerebral palsy. And so just growing up, there have been multiple barriers and challenges that I have faced, a lot of red tape that I had to navigate through certain different transitional periods, going away to college and having to deal with Medicaid, and accessing personal care attendants, having to fight to prove that I need care, and then also transitioning into employment.

    More red tape of income limits and barriers. And so when you live this life and you see these real life obstacles that are in your way, it makes you want to do something about them, not only to fight for yourself, but also to help make life easier for people down the road. So that’s really what drew me into advocacy, was really just my own personal experiences. 

Ashley Inkumsah:

How about you, Olivia? 

Olivia Babis:

I think, very similar. I was born with a physical disability. So it’s always been that constant fight for the same rights that are just naturally provided to everyone else. Whether that was having a free and appropriate public education, there were a lot of fights with school boards. I use a lot of assistive technology to live independently, which is very cost prohibitive for a lot of people with disabilities. 

    This is the community with the highest rate of poverty in the United States. 55% of people with disabilities live at or below the poverty line, but yet the technology that we need access to can cost tens or hundreds of thousands of dollars. And so having access to those programs is important, particularly if you’re not on a program like Medicaid that will pay for that. 

    Most people don’t just have a hundred grand lying around in their bank account, particularly when we’re talking about 20, 30-year-olds. And especially people that are on SSI or SSDI, especially with asset limitations and income restrictions. So there’ve been a lot of gaps where I needed access to services and programs.

    And just being able to advocate for myself and then realizing that, of course there are other people that are in this position and not wanting them to have to go through those same experiences. And so trying to pave the way and clear a path for those that are coming behind us so they don’t have to share and those experiences and what can sometimes really be traumatic when you’re trying to deal with that. 

Ashley Inkumsah:

Yeah. I’ve been saying that. It seems like the trend, especially within the social justice, the disability space of course, that our own life experiences usually guide us to what we end up doing for a living. So definitely I love to hear both of you guys’ stories and all the work that you guys are both doing is wonderful. So let’s talk a little bit about the ADA. The ADA has now turned 31 years old, but despite the ADA, there a number of other landmark court cases, such as L.C. versus Olmstead.

    I believe recently turned 25, I want to say, oh, actually it turned 22 years old, which just makes all of us feel very old, I’m sure. But despite the Olmstead decision and a bunch of other legislations that have been passed, people with disabilities are still being denied human and civil rights. Why in your opinion, does this discrimination continue and why do you think, or what do you think that we can do about it? And we can start with Olivia for this question.

Olivia Babis:

Sure. I think there’s a lot that goes into that. I think for people with disabilities, we really viewed the Americans with Disabilities Act as a first step. This is great, we have recognition of our civil rights, we are viewing disability as a societal problem and not an individual medical problem. And that’s great, but that was supposed to be a first step as far as I think community was concerned. 

    Whereas I think the rest of the population viewed this as, okay, we gave you your civil rights and now, shut up and go away. I think there’s definitely some flaws in it. It was old legislation and it hasn’t really kept up with technology. So in 1990, when this was signed, not everyone had internet access. 

    So now we’re dealing with things like website accessibility that falls into a gray area with ADA because it doesn’t have the proper language that it needs to provide guidance and a lot of these areas. And so we really need updates to it. I think there’s a lack of enforcement component that is problematic. We’ve seen of course the display right section of the Department of Justice stripped down under some presidential administrations. 

    So they just don’t have the staff and the capacity to deal with a lot of the complaints, the complaint processes onerous. Under the ADA, we don’t have the same right to civil relief that when you do, if you’re discriminated against based on race or gender, that was one of the compromises that the disability community made when working with the business community and passing the ADA. 

    And now it feels a bit like they’re taking that back. So we gave up our right to litigate, to sue you when you’re not accommodating us, but now they’re turning around and saying, well, yeah, it’s been 30 years, but we still can’t afford this. Well, we didn’t sue you for 30 years, so why can’t you afford this at this point?

Ashley Inkumsah:

Exactly..

Olivia Babis:

And so I think there is that lack of enforcement, there’s attitudinal barriers. I heard a really interesting perspective on this recently where people compared the disability rights movement to the civil rights movement and how they compare but also contrasted from each other. So with civil rights, particularly for people of color, there was a shift in attitudes first, and then we presented civil rights. But for the disability community, we didn’t really have that shift in attitudes. 

    People with disabilities were still pretty much excluded from society. A lot of people still resided in institutional care. And so we pursued the civil rights first, but we still haven’t really achieved the attitudinal change that we need to in order to be a more inclusive society. So we worked the process backwards. 

    And a lot of people think that that was the angle where we went already and went wrong that these two should have been done in this, in conjunction with each other to make sure that we’re changing the attitudes that lead to discrimination as much as pursuing policy solutions for ending discrimination. 

Sarah Goldman:

Yeah. I’ll jump off  of that. I think the attitudinal barriers is a big part of where we’re at and why we’re not further along. I think it goes a lot with lack of awareness and privilege as well. We see people that now, I mean, being physically disabled, I still can’t get into buildings that were built years ago that should be completely accessible. 

    And having to call places ahead of time to ask, are you wheelchair accessible? And they say, yes, but then showing up and finding out that there is actually a step to get in. And it’s because they don’t have to go through that on their day to day life, they don’t have to think about those things and realize that. 

    And so they claim to be accessible, but they’re not. And so I think if we can do more education around that and privilege and what it means to live a life with disability, that is huge as we work towards universal design and the future of making things accessible for all people, so that we don’t have to have these challenges and barriers of navigating old and outdated buildings 31 years later.

Ashley Inkumsah:

I feel like people with disabilities are often being praised for being so innovative and being able to hack the world around. And it shouldn’t be that way. It shouldn’t be something that we have to compliment and praise, the world should already be accessible, we shouldn’t have to jump through hoops just to get into building, it doesn’t make sense. And yeah, I totally agree with the both of you. 

    I think as far as the topic around like race and gender, I feel like we’re really having those conversations within the social justice movement, but I feel like the disability justice conversation has somehow not caught up to the other social justice movements that we’re having in the world. And I really hope to see that change and yeah, the ADA is old, but it also wasn’t that long ago, 31 years wasn’t that long ago. 

    So it just goes to show how much there’s still so much work to be done. What are some common civil rights violations against people with disabilities that both of you tend to see in your respective careers, such as in housing, healthcare employment and so on and so forth. What are some of the most common ones that you tend to see? 

Sarah Goldman:

I can start with this one. So I currently rent from an apartment complex and I’ve been renting probably now for almost 10 years and I have not had one single apartment complex that is ADA compliant. And so some of the apartments will actually go ahead and allow you to install bars in the bathtub, but there’s no walk-in showers, there’s no doorways that are wide enough for a wheelchair and there’s buildings that are three floors that are not required to have elevators. 

    And so I’ve seen that a lot in terms of housing where apartments are not required to be ADA compliant and don’t have to be. And I think another big area too is just the whole income restriction is a huge civil rights issue for us. And people with disabilities can not be legally married without impact of their benefits being combined with somebody else’s. You’re going to lose your SSI eligibility, your Medicaid eligibility.

    And why should a person have to make a choice of whether or not they want to get married or keep their benefits that can help them live independently? I just think that in 2021, why are we still having this conversation? It seems like a no brainer. But I would say those are two pretty big civil rights violations that I see. 

Ashley Inkumsah:

Olivia?

Olivia Babis:

Sure. So definitely when it comes to architectural barriers, those absolutely still exist and there are those a lot. And there’s also bias against the disability community or still treated very paternalistically. So when we were going through COVID, we saw states developing crisis standards of care for their hospitals that were really discriminatory against people with disabilities that just didn’t value their lives at the same level that they did other people. 

    There’s been a recent study that came out and it’s serving doctors and were attitudes toward people with disabilities. And they thought that they didn’t provide them the same level of care or didn’t feel like they were able to treat them effectively and just thought that our quality of lives are so much lower than everyone else. 

    We still see, even though we say we deinstitutionalize people with disabilities, we still stick a lot of people in nursing homes and ALFs and ICFs, and all of these congregate care facilities. And we saw how that affected people with disabilities during COVID, like these are the people most effected, particularly at the beginning. And there are facilities where 70% of people that live in them acquired COVID. There are places or 50% of the people that lived there died.

    And so I think it didn’t get as much attention as it should have. We were focusing on deaths in general, but not really emphasizing the fact that this is the problem with congregate care. And the disability community has been screaming about this for years, and even saying that these places are Petri dishes, they are right for this type of thing to happen and that’s exactly what happened. 

    So we really need to be making sure that people have choices on where they can live, that we are following homestead decision that we have home and community based support services that people aren’t waiting on lists for decades to receive services while they’re watching their life pass them by. And also with one of the things here, that’s national that has gotten a lot of attention lately and it always happens when famous people, of course run into this.

    But with a Britney Spears, of course, conservatorship, we don’t know how many people in the United States are in the guardianship. A lot of states don’t track this data at all. So we have no clue. It’s suspected somewhere in the millions. And a lot of times, people are placed unnecessarily under guardianship. And that isn’t to say that there aren’t times when this is appropriate, but not nearly as much as it is used.

    Making poor decisions is not a lack of capacity. People with disabilities have the right to make mistakes in their life, 99% of success is failure. That is how we learn and grow as people. If you have an 18-year-old that goes off to college and gets a credit card and runs that up, they’re going to learn how to manage their money after that point. 

    But if a person with a disability were to do that, that’s when we start considering guardianship because, oh my God, they don’t know how to manage their finances. So we really hold people with disabilities to a higher standard and expect them to be perfect in their decision making without providing them with opportunities to fail. 

    I’m not saying push somebody out in traffic to teach them that it’s dangerous to step in front of a car, but we don’t need to provide quite the guide rails that we do on people’s lives and need to allow them dignity of risk. We need to allow them to fail and be accountable for their own choices so they can learn and grow and do the things that they want to in their own lives. 

Sarah Goldman:

And I think something that goes along with civil rights too, is that we talk about in the disability community, self-advocacy, empowerment, freedom of choice, independent living, and how can we push these things forward and encouraging people to be empowered and live the life that they want when all of these civil rights issues are still right in front of our faces. It may get very difficult to accomplish those basic things that we are fighting for and advocating for. 

Ashley Inkumsah:

Yep. That was actually my next question. But even before we get there, I want to circle back onto a couple of points that Olivia made because, amazing points. On the subject of congregate settings, I feel like… I’m originally from New York. I recently moved to Chicago.

    But in New York, there was a big scandal with the governor of New York with people dying in nursing homes. And it was getting mainstream news coverage for a while. And then those harassment allegations came up and then it overshadowed that conversation. So I think a lot of it is the 24-hour news cycle, right? We start to talk about these stories and then they get caught up, something else happens and it’s all about entertainment. 

    And somehow the nursing home stories get lost in that cycle. And obviously those allegations deserve to be heard. I’m not saying that the nursing home conversation should overshadow that conversation, but I’m saying that we can walk and chew gum at the same time. It doesn’t have to be one or the other. Definitely it’s a problem within, I would say news media in our country that we don’t give attention to people with disabilities because it’s not glamorous for the news media. 

    We really needs to change those mentalities for sure. So I think that was an awesome point and yeah, totally agree, your thoughts on the FreeBritney movement. So true definitely. We actually just recently have a new blog post up about it, about the idea that if a celebrity like Britney Spears is having issues and fighting for the past 13 years to get out of her conservatorship.

    What happens to people with disabilities who don’t have millions of dollars, who don’t have that celebrity behind them? So it’s definitely, I’m glad that we’re talking about it, but I definitely want the FreeBritney movement to be more about disability justice and less about just fandom. So I’m hoping that it goes in that direction, for sure. 

    WID is currently seeking people with disabilities to evaluate the accessibility of products and services offered by various companies. During our sessions, participants are given a list of tasks and asked to provide feedback as they attempt to complete them. And you will be paid for your time. So if you’re ready to help make products and services accessible to people with disabilities, here’s your opportunity to make that happen? 

    Fill out an application to become a user tester today by visiting our website at wwwdotwid.org/user-testing-application. So on the subject of advocacy, what can people with disabilities do to advocate for themselves and see counsel when they’re experiencing discrimination? What can be done? 

Olivia Babis:

I think first, of course, they need to be aware of what their rights are. What is in the ADA under title one to know when they’re applying for jobs that they don’t have to disclose and disability if they don’t want to. That they’re in an interview, they have to be provided accommodations, that they do not have to divulge information on benefits. It’s actually illegal for someone to ask them that. And to know what public accommodations they’re entitled to. 

    So I think there’s some responsibility in the disability community needs to be aware and knowledgeable about those things. And we need to make sure that information is accessible to people. Not everybody wants to read policy or has the ability to read policy. So we need to make sure that this information exists in formats that are accessible to people with disabilities. 

    And then just working with groups, they can call of course, the PNA networks for any time that they have problems with need help with self-advocacy or information referrals for organizations that are in their area that might be able to offer assistance. We can offer legal advice when it’s needed as well. But just having an information list of organizations that can intervene. But we will be educating them when they’re in transition, particularly from high school and moving into adulthood on how to self-advocate. 

    And I think that’s a skill that they’re not taught a lot of the times depending on the type of disability we may be in self-contained classrooms or in center schools. And so they’re not receiving this information, a lot of times the schools push them towards guardianship. And so we really need to be teaching independent living skills, self-determination in the schools so they know how to advocate for themselves when they get out. 

Sarah Goldman:

I also think there’s a lack of mentorship too. I know when I was growing up, I really didn’t know any other individuals in wheelchairs until I was about 12 years old. So it was my first experience meeting a friend with a physical disability. And so the lack of representation around me isolated me and therefore I didn’t learn how to advocate for myself. I didn’t know people like me. I didn’t have the disability community to build me up. 

    And so if there’s one thing I think could be beneficial is that we mentor the next generation. We really show them, here are your resources, here’s some things you might experience, I’m here. This is my experience that I’ve been through and I want to guide you because I never had a mentor. 

    And I think if I had, there would have been a lot of barriers that I may not have faced as head on strong. And so I really want it to be my mission to be able to be a mentor to the next generation and be that person that they can come to, to learn about self-advocacy and all of their rights that they need. 

Olivia Babis:

They’re also educated on the disability history. We’re not included in history books. Well, in the Holocaust, we don’t talk about disability and people with disabilities were the first people to die in Germany’s T4 Program. So I think that lack of history knowing that or knowing Harriet Tubman, a hero to of course, the African American community but also that she also had a traumatic brain injury, and that should be recognized. I was on taught about Judith Heumann, who is basically like the mother of the Independent Living Movement, with Ed Roberts.

Ashley Inkumsah:
Who are both Co-Founders of WID!

Olivia Babis:

So we were never taught about any of that and the importance of people with disabilities and their contributions to society. 

Ashley Inkumsah:

I totally agree with you. I know I have had the same experience. I never learned about any of these amazing figures. And like you mentioned, Harriet Tubman, that’s a perfect example of someone that had a disability, but does the average person know that? I don’t think so. Representation, so it matters so much, when you see it, you can be it.

    So totally agree with you. When we talked about the lack of accessibility in buildings and businesses, so what can businesses do to eliminate those barriers that harm people with disabilities, businesses, governments, organizations, what can be done to allow for equity? What do you think can be done on the part of businesses? 

Olivia Babis:

I can start with it. So it’s been 31 years now, so they’ve had time to move these changes and a lot of the changes are not that expensive. It is really not that hard to put a ramp into places, anytime they’re doing renovations to their building, which a lot of buildings you’ve renovated in the last 30 years, so why didn’t you make the changes that you were supposed to make to your facility. 

    But I do think that there does need to be some education there. I think a lot of people aren’t familiar with their responsibilities under ADA, so maybe their trade associations, just like we have one too, should really be working with them to educate hotels on what an accessible room actually looks like.

    When you’re hiring people to deal with accessibility and accommodations, maybe that person should actually have a disability. And novel thought there… that a person with a disability would have the expertise and the experience to tell you what is, and is not accessible. 

Ashley Inkumsah:

They’re thinking about us without us.

Olivia Babis:

Exactly. There’s the guidelines and the recommendations and regulations over the ADA. But there’s a difference between just following boxes and then really being disability friendly. And I think not all of our needs are going to be identical. What works for one person with a disability isn’t going to necessarily work for another way. 

    So really, I think Sarah mentioned it earlier, just focusing on universal design, that’s going to benefit everyone. So if you put a ramp in and it’s not just going to benefit me, it’s going to benefit the woman that has a baby that is bringing their stroller in. It’s going to help them with getting in the hotel room if the door is wide enough and it doesn’t weigh 500 pounds and they’re walking in their suitcase and their child. 

    So a lot of these things help other people. There are people that technically would be considered disabled under federal law. They may not identify as having a disability, but having that chair in the shower in the hotel room would be a very helpful for them, if they are starting to develop a mobility problems as they age. So I think just having a lot of these things just in place and thinking about that just as a society, to be inclusive of everyone as much as possible, is really the strategy that we should be taking.

Ashley Inkumsah:

What are your thoughts, Sarah? 

Sarah Goldman:

Yeah, I agree with everything Olivia said as much as I don’t always like to have to be the educator. Sometimes I feel like I have to be because that is the only way sometimes that people know what is wrong with the building or what is wrong with a barrier. And I try to pick my battles every day of wanting to advocate for something and being exhausted, but also needing to be the squeaky wheel. 

    Because without that, we’re never going to be able to make that change. And they’re never going to realize what is wrong because they don’t recognize that due to their privilege. So I hope in the future, like Olivia said, we can work towards universal design and have self-driving cars. That’s going to benefit everybody. 

    Right now, transportation is a big, big battle for people disabilities and coordinating that lack of accessible Ubers in cities, ways for people to get around, so it’s all of those different things that I hope that as we make more technological advances in the future, we’ll start to see less barriers that people with disabilities face. 

Olivia Babis:

I think there’s a recognition of, no issue exists in a vacuum. They’re all interconnected. So lack of transportation can lead to unemployment, income restrictions also contribute to unemployment. When you’re living in poverty, you can only afford to do certain things. So if we were to provide community supports for people without putting income restrictions on them, then they were allowed to earn income, then we have people with disabilities that are becoming taxpayers. 

    They’re purchasing homes, they now have transportation that they can afford. And then they can enter the workforce, it provides them opportunities for recreation, go do things that they weren’t able to do. So one leads to the other, which leads to the other, and it’s this cascade of that. 

    And once we start that, I think we could address some of those issues. So it’s not just the civil rights issue, this makes economic sense. It doesn’t make sense to me, this rationale of, well, we’re giving you free handouts, so we want to make sure keep you on the brink of poverty and you can’t have more than somebody else.

    But that restriction and it’s commonly referred to as work disincentives, I call it work prohibition, is really what it should be called. And so if we were to stop doing that and then allow the disability community to participate and society be fully integrated and included, they’re going to be contributing more as well. And so that’s actually going to decrease the cost of all these programs. 

Sarah Goldman:

Exactly. Yeah. I agree with that. And it was something that I experienced when I graduated from getting my master’s. I had a work incentives planner that told me that I should work part-time, that I should go on Section 8 housing. And that was such a discouragement. As somebody who has worked so hard to get to where I am today, but then be told to live off of disability benefits, that is not a life that we want to have. We have goals and dreams and ambitions just like everybody else. 

    And so it’s, how do we build up individuals and encourage them to reach their potential? And in turn, we see the benefit of getting employed and making a contribution to the world using our strengths and our gifts, but also helping economically and being tax paying citizens. It seems so logical, but so many people just don’t understand it. And that’s why these barriers are still in place. 

Ashley Inkumsah:

And in terms of public policy and legislation for better, meant to protect people with disabilities, what changes would you like to see there, moving forward? 

Olivia Babis:

I would like to see just an overhaul of Medicaid and Medicaid means massive reforms. When this program was established, it was established on the promise that people with disabilities primarily lived in institutional settings. If you were disabled, you could not work. And we now know that’s not true. More and more people with disabilities are living in their communities. 

    And unfortunately, most of the times it’s towards family but at least more getting out of institutional care. We do know what the right accommodations, most people with disabilities can work at least to some degree. So this program needs to be reformed to reflect that, and we haven’t done any significant reforms. There’s been a futile ticket to work. But that requires cooperation from the states that has not happened. 

    So in Florida, we never did Medicaid by it. So tickets work, okay, that lets you keep Medicaid for two years after you start working but then what? A lot of times, private insurance doesn’t pay for the same services that Medicaid does and you might need that in order to even get to work. So do you have to quit your job after two years? 

    And then it’s very hard to go backwards once you entered the workforce, because now you have employment experience. And so social security is getting side-eye like, well, you worked before, why can’t you anymore? And that’s a scary position to put people in. And so people don’t want to enter the workforce for fear of that. So I think that is a program that needs massive reforms. 

    We have an aging population and we have to consider that as people get older and we have people living longer, they’re going to acquire physical disabilities. And so our lived environment needs to be more accessible. So we need to start thinking about, not just affordable housing, but accessible, affordable housing. So people have places to live and they’re not being forced into institutions when they get older. 

    It is far cheaper to paying for home and community based supports than it is to pay for institutional care by like a hundred thousand dollars or more per person. So that would dramatically decrease the cost to Medicaid. And we’re reflecting this in social security as well, that shouldn’t be the only avenue to Medicaid for people with disabilities. 

    And there’ve been states where these programs have been uncoupled and they have found that people with disabilities, when given the option, will just apply for Medicaid. They don’t want the cash benefit, they’re fine with going to work and holding down that job. They just want access to the healthcare program because private insurance won’t pay for that. So I think that’s definitely one of the things that we need to do if we’re going to make any progress. 

Sarah Goldman:

I agree 100% with that. And that’s actually what I was going to say as well, is that we need to do a better job of increasing access to insurance and also allowing for insurance companies to provide more benefits than they do for long-term care. And in Florida, we recently passed a couple of years ago the working people with disabilities program, which allows individuals that are on a Medicaid waiver. 

    So it’s not anybody on Medicaid, just those are on a waiver, using home and community-based services to earn up to $52,000 a year. And that’s a great achievement considering we were at 28,000 before that, but what about people that want to earn higher than that? Or what about people that want to get married? 

    I have great health insurance with my job right now, but I only get 30 shower visits a year, and that’s not enough for somebody with a disability. We see insurance more as a preventative thing or, oh, you must be temporarily injured, let’s give you 15 physical therapy visits, 30 shower visits, and then you’re good to go. Just keep doing your routine health car. And for people with disabilities, that’s so much more. 

    And so why are we looped in these long-term care programs for home and community-based programs are looped into Medicaid, which then loops us into poverty. And it’s this endless cycle where if we could just reform our healthcare system and make it more affordable and have different benefits in it, it could really increase our quality of life.

Ashley Inkumsah:

So as the disability community comes together today to celebrate the ADA turning 31, what is one key takeaway that you would want our audience to be left with today? 

Sarah Goldman:

I would encourage people to just really… I have friends all the time that say, wow, I don’t understand some of the barriers that you faced until I met you because they didn’t have to think about it. And so my biggest encouragement is for people to just really try to become more aware of your surroundings and to advocate for things that you see that aren’t accessible and aren’t addressed.

    I really love when people step up to become advocates for our community. And I think that we need more people out there that are willing to go on this fight with us. Nothing about us without us, but we need that support from others as well. So I would say, become aware of your privilege, be aware of your surroundings, listen to us when we share our experiences and know that they’re valid and help us, come on the journey with us and advocate with us. 

Ashley Inkumsah:

Olivia?

Olivia Babis:

For me, I think a lot of it, and Sarah touched on it a little bit, there would be nothing about us without us. But a lot of times, that’s not done. So a lot of times decisions are made on behalf of the disability community without actually consulting anybody with an actual disability. We still allow allies to speak on our behalf. 

    And so if there’s events that we can’t participate in, instead of making the event accessible, we’ll just send people to speak on behalf of the disability community and parents and providers, and other allies. And allies of course are important, we are a minority community, we’re not going to get anywhere without them. But they need to know when to take a step back too and let people with disabilities to speak for ourselves. 

    People with disabilities are far more experts on disability than someone who doesn’t live in our body. I could have someone that is a family member that has known me my entire life, but the way we experienced my disability is not the same. And so the fact that my experience with my disability is far different than someone else’s experience, that needs to be recognized.

    There’ve been some focus groups done that started to show this split between what the priorities of family members and providers are for people with disabilities versus what our priorities are for ourselves. And they’re not identical. So am I seeing them a lot of times perpetuating myths and stereotypes about the disability community that aren’t true. And a lot of this is done with the best of intentions, but we still need to let people with disabilities speak for themselves. 

    We need to provide them with power and opportunity to connect with decision makers and people that have the potential to change things versus nominating themselves to speak on our behalf and push forward their own agenda for us versus the disability community speaking on behalf of itself and pushing forward its agenda first. 

Ashley Inkumsah:

Yeah.

Sarah Goldman:

I think it’s a balance of both, it’s how do we encourage people to disabilities to be advocates and train them on how to be advocates and also how do we gather allies to help support us in our mission towards advocacy, it’s both. 

Ashley Inkumsah:

Yep, absolutely. I think, yes. You said exactly what I was thinking. I think allyship is definitely important, but there is definitely a time where you need to pass that microphone and have someone share their lived experiences because no matter how close you are, no matter how much you love someone with a disability, until you’re in their shoes, you don’t know. You can’t speak for them. So we definitely need that meeting of both of those worlds of advocacy and people with disabilities sharing their own lived experiences, for sure. Where can our audience keep up with what both of you are working on? 

Olivia Babis:

I am the senior public policy analyst at Disability Rights Florida. So our website is disabilityrightsflorida, all spelled out, .org. So we’ll have information on policy and legislation that we’re following. We just did a recent podcast regarding Florida’s last legislative session and goals that we were following and tracking and what we suspect we’ll be promoting and looking forward to for next session follow. 

    So of course, on Facebook and Twitter we have a couple of different coalitions that we operate within. So we are actually pushing a new supported decision-making bill for Florida for next session. So we have an SDM coalition, which is SDM the number four FL, and we on Facebook with that in that website for that is idecide.org, if people want to check that out.

    We have a coalition and around voting rights. So disability rights score to helps facilitate the wrap up chapter in Florida which was started by the American Association of People with Disabilities, to turn out voters with disabilities. So we’ve been working with them. We have a website for that, it’s accesstovote.org. And we work around voting rights with that. 

    So people are welcome to get involved there, check out the websites and send us an email if they want to attend our meetings monthly, we’ll have a lot of exciting things as we get closer to the election from candidate forums and equipment training, Florida will actually have accessible vote by mail for 2022 in all 67 counties. So we’ll be working with the counties on how to implement that and how we can do outreach efforts around that. 

Ashley Inkumsah:

And that is wonderful. You have some awesome things, your organization is doing some really important work on Florida. So that is great. And I hope all the people are able to follow you and keep up with what you’re doing. Sarah, did you want to add anything? 

Sarah Goldman:

Yeah, so I don’t have as many amazing things going on as Olivia does. I work for our statewide Independent Living Council in Florida here. So our website is Florida F-L-O-R-I-D-A S-I-L-C.org. And so what we do is we work on a state plan for independent living. And my role is to take over the goal and objectives around youth initiatives. 

    So really working with the next generation of young people with disabilities, making sure they have resources to learn how to advocate for themselves and all variants of independent living that we support. So that’s where I’m at, feel free to check out some of the work we’re doing. I also have a personal Instagram and Facebook under Sarah Goldman. And I do a lot of public speaking and like to post about my advocacy adventures. So feel free to follow me there as well. 

Ashley Inkumsah:

Wonderful. Well, thank you to the both of you so much for joining me today. It was really an important conversation and I’m really glad that we had it at such a topical time as we’re celebrating the 31st birthday of the ADA. So thank you so much. I really, really enjoyed today’s conversation.

Sarah Goldman:

And thanks so much for having us Ashley. 

Ashley Inkumsah:

It was really awesome to have this conversation with Sarah and Olivia and come together to celebrate the ADA turning 31, and all of the amazing strides that the disability community has been able to make since 1990, while still acknowledging that there is still much work to be done. 

    So the ADA was written at a time where things were quite different and I really want ableism to be dismantled and for our laws to reflect and push for that. As much as we spend so much time community organizing and starting grassroots within the disability community, our laws needs to be in lock step with the work that we’re doing in our communities. And our laws really must work in tandem with our activism and with our advocacy. 

    So thank you so much for listening to, watching or reading today’s episode. As per usual, you can find ASL interpretations as well as transcripts for all of our episodes on our website at http://www.wid.org/what’s-up-wid. And in our famous last words here on What’s Up WID, to paraphrase one of our co-founders ed Roberts, we need to get out there and change the attitudes so we could build forward better. Thank you so much once again, and I’ll talk to you next time.

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