We Are Disability Lead

(INSTRUMENTAL BLUES MUSIC PLAYS)

EMILY:

Welcome, and thank you for joining us this afternoon. This is Emily Blum speaking, and I'm the Executive Director of Disability Lead. And, it's so exciting to say our new name 'Disability Lead' out loud and to be able to share it with all of you. We have such a fun program today. But before we dive in, an image description. I am a white woman with brown wavy hair and wearing tortoiseshell glasses, a black lace top and dangling earrings all in the color of our new logo, which appears in my virtual background. The Disability Lead logo is a one line typeface made up of text that reads Disability Lead, and the T in Disability is a plus sign made up with our three distinct colors, orange, fuchsia, and purple, all coming together. The plus sign symbolizes the positive impact that people with disabilities have in leadership roles, and the importance of intersectional perspectives coming together as one. Also included in the virtual background is a pattern of disruption, again in the colors of purple, orange and fuchsia. And, that symbolizes our amazing network of positive disruptors, all people with disabilities who are using our power to create an equitable and inclusive society. And, we believe our experiences, ideas and leadership as people with disabilities are vital to achieving justice. To learn more about our work, who we are, what we believe, and what we do, please visit disabilitylead.org.

We are so excited to share our work and our stories with you. We sent out a guide on accessing key accessibility features in zoom. And, tonight we have CART ASL interpreters and Spanish translation. If you have any challenges accessing these features, please connect with us via the chat box. My colleagues will be monitoring and responding. Thank you everyone for joining us, including so many Disability Lead members, and those who donated to support the accessibility of this program. We have such a fun program scheduled tonight. And, features the amazingly talented and outrageously funny comedian, Maysoon Zayid. Maysoon Zayid will be followed by a conversation with three incredibly smart, our inducing and talented disability advocates who are changing our culture, our politics and our policies. I'm so excited and humbled to be joined by Andraéa LaVant, Dominic Kelly and Andres Gallegos, for a chat about how they lead with power, influence and change. And speaking of power, influence and change, that just happens to be our new tagline. But before we begin, I'd like to invite Illinois Governor JB Pritzker to say a few words. Welcome Governor Pritzker.

PRITZKER:

Hello. This is Governor JB Pritzker. I'm honored to join you all today. And, I'd like to congratulate the Disability Lead on its new name, and for coordinating such a meaningful event that truly empowers individuals with disabilities. As members of Disability Lead, you represent vital civic leaders in our communities and across our State. Every individual deserves the right to live, learn, work, play and be included in everyday life. And, your continued advocacy is making a real impact. Your critical work helps ensure individuals with disabilities have positions of power and influence, creating a more inclusive society. I'm proud to join you in this effort. I will always strive to make sure our State works for those with disabilities. Because I know that together we can change outcomes for so many. It's why in our response to the pandemic earlier this year, I prioritize residents who have disabilities. This was just another step in our mission to weave equity into everything we do here in Illinois. I'm glad to celebrate our fellow Illinoians who Building Illinois into the great inclusive state our residents deserve. I look forward to continuing to work with you all, as Disability Lead, moves Illinois towards a more equitable future for all.

EMILY:

Thank you, Governor Pritzker for those kind words and for your leadership on behalf of disabled Illinois residents. Yes, Disability Lead members are vital civic leaders, and we believe our perspectives are valuable and needed. For those who don't know our next guest, you are in for such a treat. Maysoon Zayid is an actress, comedian, writer and disability advocate. A Palestinian woman from New Jersey say he jokes about her family, global culture, and her life was Cerebral palsy. She co-founded the New York Arab American Comedy Festival. And yes, if you're an Adam Sandler fan, you're definitely gonna recognize Maysoon as a woman behind the beauty shop counter. And, You Don't Mess with the Zohan. Without further ado, please welcome Maysoon

MAYSOON:

Hello. My name is Maysoon Zayid. And, for those of you who can't see me, I look like the lost Kardashian. I have long black straight hair, cinnamon skin. I am wearing completely and appropriately sparkly lipstick. I'm sitting in front of a bookshelf, covered in books that I shall never read. But my friends sent me them for free. So, I feel like I have to promote them. And, I'm also sitting in front of a giant, evil eye to protect me from people who are jealous. So, what I just did there is called an audio description. And, in our new virtual live hybrid world, it's really nice to when you're doing a meeting, a panel, a conference, whether live or online, to take a moment and describe yourself. Now, why would we do that? We do that so that people who cannot see, so that people who are either blind or can't afford the technology, they have video streaming can participate by knowing who we are, and what we look like. So, now that my audio description is out of the way, I'd like to tell you my origin story. My mom looks like Julia Roberts and my dad looks like Saddam Hussein. And, the doctor who delivered me was drunk.

As a result, I have something called Cerebral palsy (CP). It's a neurological disorder that manifests itself differently in everyone. In my case, I shake all the time. So, I shake it, I shake it. I shake it to like Taylor Swift. But I shake it like Taylor's version, not scooters. But I don't want anyone to feel bad for me because I got 99 problems. And, palsy is just one. In the oppression Olympics, I would win a gold medal. I'm Palestinian. I'm Muslim. I'm a Woman of Color. I'm disabled. I'm divorced, and I live in New Jersey. If you don't feel better about yourself, maybe you should. So, when I was born, the doctors told my parents I would never walk. Now, let me be very clear. There is absolutely no shame in not walking or using any mobility device you feel frees you. We are told to often don't use that wheelchair. Don't lean on that crutch. Don't use that cane. If you do, it will make you deteriorate. This is false. There is no shame in using mobility devices. They do not make us deteriorate. Quite the opposite. Forcing ourselves to live in pain. Forcing ourselves to push ourselves to physically do stuff that is that difficult for us will cause us to deteriorate. Choose any mobility device or no mobility device, whatever makes you feel free is the right choice. But I was born before the ADA was signed. I know. I know. This is impossible to believe, because cinnamon don't crack, but it is true. I am older than ADA 25 and ADA 30. So, my dad was determined to teach me how to walk, and he had a mantra. And, his mantra was you can do it. Yes you can, can. And, he had two ways of teaching me how to walk. The first was to place my feet on his feet and just walk. I walked miles on that man shoes.

His second technique was to dangle a dollar bill in front of me and have me chase it. My inner stripper was so strong, I was running in stilettos by kindergarten. You know, I've had so many people come up to me and say, you are so brave. I am so inspired. If I were like you, I would kill myself. That is not the compliment that people think it is. And, I am here to tell you that disabled lives are worth living. And actually, there are perks to being palsy. One of the best perks to being palsy is never having to stand online. And, in the before time, one of the greatest places to stand online was Disney. I used to love to go to Disney as a child. I would ride Space Mountain like 15 times, come back out, find a kid that was like a male in the sun just like sweating online about to go down like a ton of bricks under the sign that's a two hour wait from here. And, I'd be like hanging there kid, it's totally worth it. I just went on Space Mountain 15 times.

But there was a ride that I loved even more. It was called, The Mad Hatter's Tea Party. And, you would sit in a teacup, and they'd spin you around really fast. And, every time I rode that ride, when I would walk off, I would walk straight for like six minutes. I was like, oh my gosh, this really is the most magical place on Earth. But it all went bad. A bunch of people started renting people with disabilities so that they could cut the lines at Disney. And, they got caught. And now, no ways allowed to cut the lines. It's no longer the happiest place on earth. And, I just wish that I could have been one of those tour guides before they got caught. Because I would have made it a teachable moment. I would have taken the kids aside from their parents. And, I even like, hi Timmy and Sally. I wouldn't care what their names were. I just call one Timmy and Sally. I'd be like, Hi Timmy and Sally. Mommy and Daddy did a very, very bad thing. And, you're just one little accident away from being just like me. So, hold on tight kids. Now, who wants to go on Space Mountain? This ability does not discriminate. You are welcome to join us at any time, regardless of race, religion, ethnicity, gender, age, economic class, or who you love. Everyone is welcome. I think we should all be a lot more like disability, don't you? I grew up in Cliffside Park, New Jersey. So, my hometown, and my disability have the same initials, CP. I was one of six Arabs in a town of 33,000 Italian Catholics. And, I've had the same best friend since I was in kindergarten. I was never bullied. I was never made fun of. My best friend Tina would take me to midnight mass and show me off. And, she would say, she is from where Jesus is from. And, I'd say, I'm from Jersey, Bon Jovi rules. So, when I turned 18, my best friend Tina decided to make me her designated driver. Because as I mentioned, I'm Muslim. And, Muslims don't drink, or at least we don't admit to it on social media.

So, I became her designated driver. And, this was a very, very bad idea. Because any time the police would call me over, I would, you know, they'd come up to my window, and be like, license and registration. And, I'd be like, hey, and they'd be like, are you drunk? And, I'd say, I am not drunk. I am differently abled, sidebar. Don't use differently abled. Don't use special needs. Our needs are not special, but just needs. Were not different, were just disabled, say the word. So, I would tell them that wasn't. And then they'd say, well, we're gonna need you to get out of the car, and walk a straight line. And, I'm like, alright. If I can, it'll be a miracle. Let's do this. So, what I decided to do instead, was I learned how to sing the alphabet backwards. So, I'd be like Z, Y, W, U, V, T. And, they were so impressed. They would slow clap for me, like the end of the movie Rudy. And, they'd be like, you go girl. And, I drive off into the sunset with Tina, covered in her own vomit after a night of partying. And, what I didn't know was that I was lucky. I had no idea how lucky I was. 50% of all Americans killed by law enforcement are disabled. As disability takes the lead, we need to battle that statistic. We need to bring our communities together, and we need to save lives. Because 50% is in humane, and disabled people deserve life. So, like most Muslim girls, growing up in America, I had a dream. And, my dream was to be on the daytime soap opera General Hospital. And, I pursued it by studying theater at Arizona State University. But when I graduated college, and I went out, and I started auditioning, I realized that people on TV, they didn't look like me. People with disabilities are 20% of the population, but we're only 2% of the images that you see in media. Of those 2%, 95% are played by non-disabled people. If you cannot see it, you cannot be it. Visible disability, much like race cannot be played. It is offensive, inauthentic and cartoonish, when non-disabled actors play visibly disabled on screen. A good way to think about it is if a wheelchair user can't play Beyonce, then Beyonce can't play a wheelchair user, and she can slay anything. Just not that.

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I know what everyone says. They say it's acting. But there are certain things that cannot be played. And, we have no idea how many people with invisible disabilities graced our screens, invisible disabilities like mental health issues, like Fibromyalgia, like lupus, like chronic pain, like depression. And, the reason we don't know how many people with invisible disabilities are entertaining us is because the stigma against them is so strong, that even the most celebrated celebrity fears revealing their disabled status. Yet there is no shame in being disabled. When I finally made my television debut, I went on a show called Countdown with Keith Olbermann. And, as soon as I was done with my debut, I limped home quickly, and I googled myself, because that's what actresses do. And, when I got online, I realized that the entire world was making fun of me. As I mentioned, growing up in Cliffside Park, New Jersey, nobody ever made fun of me. I was never bullied. I was never left out. But suddenly, after my television debut, people on YouTube and Twitter, were trying to guess what was wrong with me. See, I was on a new show called Countdown with Keith Olbermann. And, Cerebral Palsy was not the topic, we were talking about politics. So, we never addressed it. And, the audience was so not used to seeing a person with a disability talking about anything other than being disabled. They didn't know what to do with it.

So, I had comments that were well meaning, like, I think that woman is having a stroke. Why isn't Keith calling 911? Or, oh cocaine, cocaine? She shouldn't have done so much before she got on screen. Then I had the not so nice people. I had the people who said I looked like an honor killing gone wrong, or a Gumby terrorist. We were raised to believe that sticks and stones may break my bones, but words will never hurt me. And, that's simply not true. Never be the person who causes another human being to harm themselves. If you feel the need to spew hate online, Google cats on glass tables instead, you will thank me. Now, my time with you is very limited. But I am here to change you, to inspire you, to be best. I am here to give you advice you don't want to hear. Number one, single people avoid marriage. Marriage is a racket. Married people are just trying to suck you down into their Hell. Do not let them trick you. One of their greatest techniques is if you're a single woman, they will march you out on the dance floor. And, they will throw a 10 pound ball of flowers out your head. And, if you don't catch it, they make you think you're a loser. You are not a loser. Avoid marriage like COVID. Two, stop asking people if they have kids. If you don't know the person that you're talking to, well enough, to know whether they have kids or not, it's none of your business. You have no idea what the person across from you has been through. Maybe they had a miscarriage that morning. Maybe they ran out of money, and can't afford another round of IVF. Or maybe, just maybe, they never mind to have kids. Maybe they want to have a cat named Beyonce. Did you ever think about that? No.

Oh, and Fun fact, people who have children will always tell you, you never have to ask. They're like Timmy and Sally immediately. But there's one question that is even worse, that you should never ask another human being. And, I know what you're thinking. What does this have to do with disability? Everything. Because every community intersex with the disabled community. So, if we talk about marriage, we're talking about disability. If we talk about reproductive rights, we're talking about disability. If we're talking about inclusion and talent, we are talking about disability. So, as I wrap up my talk about disability, I warn you never ever, ever asked another human being if they are pregnant. The only time that is a valid question is if you see a skull coming out from between them legs, then do your thing and call 911. I have one of those bellies that always looks like I'm five months pregnant. So, people are constantly asking me if I am. So like, for example, in the before time, I used to tour 200 days a year. And, whenever I went through TSA, I was always random. So, the TSA agent is patting me down. And, she goes, is it a boy or a girl? And, I said it's Doritos. Cool Ranch. Thank you all so much for joining me today. Thank you for supporting this unbelievable, incredible organization as they revamp and re-empower. And, I would like to leave you with this. The world is broken. But we can fix it. We can fix it by saying no to arming violence worldwide, and saying no to violence against women. We can fix it by saying no to being an internet troll, and no to raising an internet troll. And, we can fix it by saying no to being silence. Your voice is your weapon against injustice, disability rights are human rights. I beg you, use it. My name is Maysoon Zayid, and if I can can, you can can.

EMILY:

Thank you, Maysoon. That was so funny, and so much fun. And, we have a lot more fun in store for all of you. And, I am particularly excited to share with all of you for the first time our video, We Are Disability Lead. You know, we have worked so hard on our rebrand, and I just want to give a special shout out to our staff, our Board of Directors, and our many, many funders and donors who have made all this possible. In our video, we share in ways that are fully accessible the story of our work, our organization and our network of positive disruptors for leading with their disability identities to create better, equitable and more inclusive communities. We Are Disability Lead. I'm so honored to be joined by our next guest, Andrés Gallegos. You heard from Andrés in our video, because he's such an incredibly valuable member and board member. But I'm so thrilled to also be in conversation with him. Because when I think about making change, and the spaces in which changes are made, policy and law are incredibly critical. So, welcome, Andrés. Can you introduce yourself and give our audience a visual description as well?

ANDRES:

Yes, first of all, thank you for having me. I am Andrés Gallegos. I am a Display Rights attorney here in Chicago, with law firm Robin Solman and Pat, where I lead and direct our law firms national display rights practice. I am a Hispanic male of light complexion, exceedingly gray hair, I wear glasses, black friend glasses, and this afternoon I have on a French blue shirt with a gold tie.

EMILY:

Wonderful. You know, I think when I invited you to our event tonight, I positioned our conversation as upbeat and fun. That said, I do wanna start on a somewhat somber note. You know, for many disabled people, 2020 and 2021, were among some of the hardest and most heartbreaking. And, the idea that our lives and bodies are not valuable or we're saving was both ugly and pervasive. You are on the forefront of a legal battle to uphold the basic human rights of disabled people. So, can you talk about that case? And, what are the lasting possibilities from that?

ANDRES:

Emily, the case surrounds Mr Michael Hickson in Austin, Texas. And, it's one of the most blatant and egregious examples of ableism with deadly consequences that I've seen in my 27 years of practicing law. This, unfortunately, is a story about a life not worth living, a person not worth treating. Those were the beliefs of his physician at St David's South Austin Medical Center in Texas. That was verbally expressed, and then acted upon for six days, despite the absence of a terminal or irreversible condition. All of Mr Hickson's life sustaining treatment, including artificial nutrition, and hydration were drawn from this man, a 46-year old black man with multiple disabilities resulting in his death. Now, when Mrs Hickson challenged her husband's physicians, and press for an explanation as to why he wasn't being treated, and why he was just being left to die, one of those physicians and a legally recorded conversation with her said, as of right now, his quality of life, he doesn't have much of one. And, when she further press for an explanation, the physician said that because of his paralysis is brain injury, he has no quality of life. The physician then distinguish Mr Hickson from other patients that he was treating aggressively for COVID-19. And, the physician said, his quality of life is different than theirs. They were walking, they were talking. With a pandemic, there seems to be this unmasking of discrimination and some comfort that physicians and health care professionals have taken with a pandemic just to be blatant in their discrimination of People with Disabilities. In February of this year, there was an important study that came out in the Health Affairs journal, by Dr Lisa Iezzoni who is a physician at the Harvard Medical School. And, she herself has multiple sclerosis. And, Dr Iezzoni is one of the champions for health equity for people with disabilities. But her study revealed that over 86% of all physicians in the country, view people with disabilities as having a poor quality of life, or low quality of life. And, that belief that implicit bias, translates into decisions they make in treating patients. Right.

EMILY:

Yeah, well, you know, I wish the family the best. And, know that they are in good hands. And, really what a powerful signal that, you know, somebody with a disability is, you know, representing them in court and fighting for on behalf of all people with disabilities, you know, do you think that will then have some kind of legal precedent or policy implications of winning that case?

ANDRES:

Well, we're hoping. Foremost, what we're trying to do is make sure that they're held accountable. That they change hospital policy. They change policies within the healthcare system. And, so that they recognize that implicit bias had a role to play here. And, that it never happens, again. Whether it resonates with the healthcare community, I don't know. We have called for both Department of Justice and Office of Civil Rights for the Health and Human Services to also conduct an investigation. And, we ask for criminal investigation as well.

EMILY:

Alright. My final question, because you hold so many roles and wear so many hats, both as an attorney, as a member of Disability Lead, as a Board Member of Disability Lead, and what I was remiss to say from the beginning, chair of the National Council on Disability, which advises the President and Congress on issues of Disability Policy. That's my long intro. Here's my question, Where is there still the biggest need for Disability Leadership?

ANDRES:

As I see three areas. One is that we need more elected officials with disabilities. They are the leaders in their respective areas. And so, the more people with disabilities that we have in those positions, the better for us as a community. Proper boards are where decisions are made for corporations, where policies are set, where strategic planning is done. And, that's where we need to be present. And, our issues need to be represented at the forefront, and at the early development policies. And so, that why we're taking into consideration, during the planning phases of any activity, and simply not as an afterthought. And finally, I still think that we still need to see more people with disabilities in C-suites, at the President, Vice President, the Directors and, and high level Officer positions within corporations for the same reasons. And, that is that we be more visible because, again, setting the tone, allowing the workforce to see that people with disabilities are in leadership positions. And, if they're in leadership positions, I mean, disability is something that is embraced within the corporate structure. And, I think that sends a strong message.

EMILY:

Well, Disability Lead, we have our work cut out for us. Thank you so much for joining us.

ANDRES:

Thank you for having me.

EMILY:

So, we just heard from Andrés about how the law is being used to drive change, and improve the lives of people with disabilities. But now, I want to dive into the cultural shift we've seen taken place, from better representation in Hollywood, and the media, to stronger acknowledgement that disability is important and necessary facet of diversity. I'm thrilled to be in conversations with my next two guests, Andraéa LaVant and Dom Kelly. Welcome both. Andraéa LaVant is founder and President of a Social Impact Communications Firm that specializes in helping organizations speak disability with confidence. If you don't already know Andraéa from her consulting work, you may have recognized her from the Oscars Red Carpet for both her Shimmering Sequin Gown, as well as her work as the impact producer for the documentary Crip Camp. So, welcome, Andraéa. Can you introduce yourself, and give a visual description and talk about what an impact producer does?

ANDRAEA:

Oh my gosh. I'm so excited to be here. Yes, I will. I'm Andraéa. I use, she, her pronouns. I am sitting in my living room office with a variety of decor behind me,including a field couch with some pillows, and some signature silver glasses. You can see, I am wearing a T-shirt that says Disability is an Intersection. And, it actually has a black woman with an afro, you can't see that she's sitting in a wheelchair. And, I'm a Black woman. I'm wearing cat eye, orange and tan glasses. My hair is in a straight bob just below my chin, and I've got some lavenderish lipstick on. And, sure so, an Impact Producer, the role is really to take the messaging of a film in this case, for Crip Camp, and to affect social change, to say, OK, we have this incredible, you know, work that's been done, but how do we then really bring it out into the community and make it more than just kind of a standstill thing with something that ultimately, you know, leads to better and greater and all other things. So, that's what our goal was for Crip Camp was to take that messaging. And, we had a variety have kind of specific goals. One of them included cross movement building across different, you know, social justice movements. One of them was to kind of resource and connect emerging leaders, which is what we did through our Crip Camp virtual experience last summer. And then also to rejuvenate and kind of revive those of us that have been in the movement, you know, for a while now and kind of reconnect us, which I think we all need it, especially because of the pandemic.

EMILY:

Well, thank you for being here and welcome. And, I'd also like to welcome Dom Kelly, who is a political and fundraising professional and Disability Justice, advocate at Fair Fight Action, which is Stacey Abrams organization to protect voting rights. Dom, can you introduce yourself, give a visual description and talk about the connection between disability voting protection, and why fighting voter suppression is so needed?

DOM:

Thank you. I'm Dom Kelly. I use he, him, pronouns. I am in Atlanta, Georgia. I am a white man with brown hair, a beard and mustache. I'm wearing a gray blazer over a white button down shirt, sitting in front of a plant, and some of my favorite records on the wall behind me. I, first of all, I'm so thrilled to be here, and talking to two people that I really, really admire. So, thank you. At Fair Fight Action, we focus on advocating for voting rights for all eligible voters in the country. And, right now, we've seen a large scale attack on voting rights across the country, at the state level. And so, this work is extremely important for all voters, but particularly, for disabled voters. Voting can be an accessible for disabled voters already. And, we've now seen over 400 voting bills introduced in 47 States this year. And, many of those bills have implications for People with Disabilities. So, it's incredibly important that we include disabled people in the conversation about voter suppression. And, the time is really now. So, that's the work that we're doing at Fair Fight Action on the Disability Council.

EMILY:

Andraéa, the thing that strikes me about Crip Camp is the visibility. And, for so long, stories of disabled people who are either untold, or they were told to the perspectives and voices of those who aren't disabled. So, to see this movie get the attention that it got, to see the Crip Camp crew at the Oscars, to see you in full glow up, and go to your service tag too, and to see that Oscar stage included ramps, and other other details for accessibility was just mind blowing. So, I'm curious of the changes that you've seen, and hope to see as a result of this very powerful and very visible movie?

ANDRAEA:

Wow, that's a great question. I mean, it was pretty. I mean, I feel I'm kind of like speechless about the whole experience. Especially, you know, what people don't know is what had to happen. As we all know, none of that stuff magically appeared. It was like, oh, all of a sudden, you know, Jim, and so many others involved with the film, with the Academy, you know, and obviously, leading up to from the very, you know, when they began working on the film and connected with Netflix, they were things that they insisted upon, everything from, you know, quality audio descriptions to the transcript for deaf, blind folks. For the first time, you know, Haben Girma talks about this being the first Netflix film that she was actually able to watch.

And then, you know, they incorporated image descriptions. And so, for me, you know, and I think for those of us that have kind of watched the evolution of the journey, it's incredible to have the visibility of the film itself. But really, it's about the systemic changes that we're seeing, that will, I mean, like we said, the Oscars is like, it's the cream of the crop, right? I mean, you don't get any bigger than that. And so, the fact that if the Oscars had a ramp, everything else, every award show, every event that comes thereafter, if they set the bar there, then it's like undoubted that it has to continue, they can't go backwards. And so, that, you know, we've seen that in, you know, working with Netflix. And now, we had an opportunity as a firm to train them on image descriptions for, you know, the rest of it, you know, moving forward in terms of the projects that they releasing. So, I think, you know, that's the chance, they say, the change that we want to see. And so, the Academy was incredibly, they were great. And even being there, we felt really welcome in a way that I honestly didn't expect.

I think that as a, you know, a black disabled woman, in particular, it's rare that I feel like, you know, I can be completely Andraéa in a space. And, it really, I mean, as they say, I mean, they kind of rolled out the red carpet, right, is like was actually true, not just and we all know, when it was called out on Twitter that there is more improvements that need to be made. So, I'm definitely not trying to, you know, skirt over the fact that there's more that needs to be done. And, even some of the, you know, the problematic work that was elevated and stuff like that, but it definitely opened the doors. And, I will say it wasn't like it opened the door, and then we'll revisit it next year. I mean, it has literally the conversations that we're having, because of the fact that, you know, sparked these conversations around just representation in Hollywood. And, you know, in front of them, behind the camera, and even, you know, working with the academy moving forward on, I mean, just so many things that it brought to light in a way that I'm excited about. And, in particular, what I alluded to as a, you know, from an intersectional approach, I think that there's huge opportunities for, you know, representation that is more reflective of our, you know, the multiple identities that we hold as disabled people.

EMILY:

There's so many more stories to be told.

ANDRAEA:

Absolutely.

EMILY:

Yeah. You know, Dom, you know what I think was so powerful about Crip Camp is that it revealed that the political is personal, and how stories of people's experiences can change the world. Can you talk about Fair Fights work to collect stories of voter suppression? And, how that will be used? And, why specifically disabled voters are so important to that effort?

DOM:

Absolutely. So, what you just said is really important to just say, again, that stories matter. And, when we're talking about legislation that will help protect the right to vote, it's not just about legislation, it's about how it affects people. And so, disabled people have to have, you know, have to be able to share their stories. So, we are collecting stories from voters across the country, to be able to help advocate specifically for federal legislation, the John Lewis Voting Rights Advancement Act, in particular. And, we've already gotten stories from people all across the country, but we are really lacking in stories from disabled voters. And, you know, for instance, here in Georgia, I'm sure you all know that, historically, voter suppression is, we're pretty much ground zero for voter suppression. And, last primary election, there were people in line for nine, 10, 11 hours, maybe more.

And, I saw it with my own eyes. I was out there talking to voters, who were in line for hours, people who brought their kids because they, you know, can't afford to take, you know, bring their kids to daycare while they're also taking time off work to make sure that they're able to cast their vote. And historically, this happens in areas that are, you know, have a higher black and brown population. And so, imagine a disabled voter having to stand or sit or wait in the line for multiple hours. That's just one example. My grandmother in law, she gained her right to vote on the day the Voting Rights Act passed. It was her 27th birthday. And, for the first time, she was unable to vote in the primary election here in Georgia, because she didn't get her ballot, her absentee ballot application and she requested. And, she would not vote in person because she is, you know, compromised, and was unable to, in the middle of the pandemic go and cast, you know, her ballot. You know, those are the kinds of stories that we need to hear to demonstrate to Congress that this is vitally important legislation that needs to be passed. And, this affects young people, black and brown people, or disabled people. This affects everyone.

EMILY:

I mean, it was stories that helped pass the Americans with Disabilities Act more than 30 years ago. So, absolutely. And, I think we're gonna be able to provide a way for folks to get involved. So, please check that out. Share your story, if you've experienced voter suppression. You know, what really strikes me, at the heart of the storytelling efforts, whether it's Crip Camp or Fair Fight work is the importance of building community. And, keeping folks connected and our stories alive. So, Andraéa, how do we sustain these communities? And, how do we continue to grow these communities in this moment, as we think about returning to "normal life"?

ANDRAEA:

It's all right here, like, you know, it is really being transparent, I think about our stories. It's our responsibility, specifically as leaders to create and, you know, not just accessible, more physical, you know, perspective, but, you know, the spaces that make people feel like they belong there, you know, where we have considered them proactively not reactively, you know, that we have put, you know, things in place where we're asking questions, and we're acknowledging one another's individuality, as well. And again, those experiences, it's choosing for those of us that have privileged in certain areas around certain identity, so white people. But, you know, stepping back, and allowing those who have, you know, historically not been able to take up space to be able to do that. And, to listen, more than to speak, and to create as many ways as possible to connect, I think, you know, we're continually finding specifically when, you know, because we work with employers and, you know, brands organizations around, you know, kind of returning to normal. And so, we're continually having to caution them around that, because it's, you know, things like, no more, you know, virtual this, and no more like, we don't have to do it. And, the fact is, it made it so, you know, I mean, connecting with you all, how would I have that? You know, that I mean, think about it, like meeting Emily, meeting Dom, meeting, all these people that I've met over the past year sitting here in Tempe, Arizona, like it would not have happened. And so, we have to continue to cultivate community in ways that allow people to bring their whole selves, and to do it in ways that are not formulaic, that are not, you know, has to be done this way. But, you know, if Crips are up at 10pm, and there's, you know, a conversation that has to be hosted at 10pm. Like, we need to create space to do that, you know, moving when we think about, you know, Disability Justice and the principles around interdependence, but also just the capitalist society that we live in, and the work hours and all of that, it's about creating flexible spaces where we can connect in ways that we haven't in the past.

EMILY:

Dom, how do you think about sustaining and growing these communities?

DOM:

I think, I mean, what Andraéa said is spot on. Its connection, continued connection. I think it's important that we, I know for myself as a disabled person, I have sometimes resented the fact that I have to educate people who are not disabled. But, I do think it's incredibly important that we also have allies, so that, you know, when we're out in the world advocating for ourselves, we have other people in that fight. So, I think it's continuing that connection with each other and, you know, making those connections with others and bringing them in, and saying, you know, this is what disabled people look like, this is how we operate in the world. These are the barriers that we face. You know, I grew up with, disabled, identical, I have Cerebral Palsy. My identical brother has Cerebral Palsy. My fraternal triplet brother, who passed away when I was six also had Cerebral Palsy. I grew up with disabled people. My mom was an advocate, like this was my whole world. And, I have met disabled people who not like have never met another disabled person in their life. And, I have met non-disabled people who have never met a disabled person in their life. So, I think it really is about making those connections within our community and outside.

EMILY:

Well, I'm just so grateful and thankful to be joined by you guys. Earlier, we were joined by Andres Gallegos. All three of you are incredible leaders. And so, my final question, and Andraéa I'll start with you, is there still the biggest need for disability leadership? Where do we need allies?

ANDRAEA:

Where? I mean, it's everywhere. We're not there yet. It's just that you know what I'm saying? It's just that simple. I think that for those of us that are, you know, deeply entrenched in the community work, sometimes we think that like, oh, man, like, where else are we gonna go and whatnot. And, it's like, I every single day, I am actually made more and more aware that we need to be infiltrating every single space, and there's just so many places for us to be, and we need to be there, and we need to make sure that the leadership doesn't look like it has historically within our community.

EMILY:

Amen. Dom?

DOM:

Rebecca Cokley told me, you know, we have to create our own spaces, because oftentimes, they're not there for us. And, like that is in probably much, she probably said that in much better words than I just did. But that stuck with me. And, I think we've got to keep creating those spaces. We've got to run for office. We desperately need to run for office. We need to be running tech companies to make sure that websites are accessible. Like we need to be creating these spaces for ourselves. And, I think, you know, there are some really killer people who are doing that work already, but like, let's all keep stepping up. I'm gonna say one more time. We all need to run for office. We need more disabled people in office.

EMILY:

What a wonderful night. Thank you so much to Governor Pritzker, to Maysoon, Andrés, Andraéa, Dom. And, thanks to all of you for joining us this evening, as we debut our rebrand and reintroduce ourselves as Disability Lead. Please connect with us at disabilitylead.org, sign up for our emails, follow us on social media. Support us financially if you can, it would mean the world. We will be back with more events and conversations just like this over the summer. But until then, follow along. Thank you, and have a wonderful evening.

(INSTRUMENTAL BLUES MUSIC PLAYS)

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