Episode 8: Power Structures, Decision Makers, Media Representation, Employment, Voting, Health Insurance, Benefits and Disability (Featuring Lawrence Carter-Long)

In this episode of Remaking Normal, Alexander Freeman sits down with disability activist, actor, producer, modern dancer, writer, journalist, radio show host, and communications strategist Lawrence Carter-Long for a wide-ranging and deeply informed conversation about disability media representation, power structures, voting rights, health care, infrastructure, income, and public benefits.

He is perhaps best known for his leadership as Director of Communications and Public Affairs at the National Council on Independent Living (NCIL), where he helped shape national disability policy conversations and media narratives. He has created, curated, critiqued, and consulted on projects for prominent organizations such as the National Endowment for the Arts, Turner Classic Movies, and the American Film Institute. His contributions to cultural discourse include writing for esteemed outlets like Film Quarterly, PBS, The Atlantic, and USA Today. Lawrence is featured in the award-winning documentary “Code of the Freaks” and appeared as an actor in the NY Times Critic’s Pick “Best Summer Ever.” Lawrence has lectured and curated programs on the history and evolution of disability in media at the Library of Congress, the Academy Museum of Motion Pictures, and the United Nations. Lawrence is the Director of Engagement for the ReelAbilities International Film Festival. 

Together, Alexander and Lawrence unpack how media representation influences public opinion and policy outcomes, why disabled people are marginalized in conversations about democracy, and how systemic barriers affect access to voting, healthcare, transportation, income, and benefits. 

@lcarterlong

Lawrence@NothingWithoutUs.com

lawrence@reelabilities.org

Find out about the documentary "My Own Normal" at myownnormalmovie.com and consider working with Alexander on a feature film by visiting outcast-productions.com. Subscribe to the Outcast Productions LLC YouTube Channel @OUTCASTPRODUCTIONSCo and follow @realalexanderfreeman on Instagram.

Transcript

SPEAKER_00 0:05

I'm Alexander Freeman, and this has been Remaking Normal, Episode 8. Power Structure, Decision Makers, Media Representation, Employment, Voting, Health Insurance, Benefits of Disability. Today I'm talking with disability activist, modern dancer, radio show host, actor, and producer, Lawrence Carter Long, who is the director of engagement for the Real Abilities International Film Festival, and was formerly the director of communications of the Disability Rights Education and Defense Fund. Lawrence is a multi-hyphenate who is created, curated, critiqued, and consulted on projects for prominent organizations such as the National Endowment for the Arts, Turner Classic Movies, and the American Film Institute. His contributions to cultural discourse include writing for esteemed outlets like Film Quarterly, PBS, The Atlantic, and USA Today. Lawrence is featured in the award-winning documentary Code of the Freaks and appeared as an actor in the NY Times critics pick Best Summer Ever. Additionally, he served as a consultant for the Disney Plus feature Out of My Mind. A popular public speaker, Lawrence has lectured and curated programs on the history and evolution of disability and media at the Library of Congress, the Academy Museum of Motion Pictures, and the United Nations. Lawrence, it's great to have you on the show.

SPEAKER_01 1:47

My pleasure. Thrilled to be here with you.

SPEAKER_00 1:49

How do you define normal?

SPEAKER_01 1:51

So you're starting with the easy ones. How do you define normal? It's a tough question because I think in order to answer it, we also have to ask ourselves, historically speaking, who has had the power to define it and who has not. So I guess I would answer the question by beginning with the thought that normal is not a fact. It's a social agreement. It's the kind of thing that gets reinforced over and over again, like a habit or like the law. And it's the default setting that society installs so that it doesn't have to question itself. I think it's a trick that is presented as neutral when it really forces us, when we get down to it, to think about who has power. And so let me put it this way: historically, the power to define normal is usually with the institutions that sort people into categories, like who belongs and who doesn't. So medicine defines what's wrong. Schools define and decide who's ready. Employers decide who's qualified. Government decides who's deserving. I could go on and on and on and on, right? But media tells this story, repeats this story over and over again. And after a while, those decisions that are made start to feel inevitable. And so disability exposes that whole power structure because disability isn't rare. If you look at the United States, disabled folks are 28.7% of the society, at least those who identify as disabled, according to the Center for Disease Control. So what's rare, I think, within that, society designed disabled folks in mind. So I'm less interested in doing something like including disability as an add-on than I am in changing or remaking, as you do, the definition of normal itself. Because once you define normal, then you also get to decide who gets access, who gets opportunity, who gets treated as a problem to manage. I'd say for most people, normal is power with a friendly face. And disabled folks don't need visibility inside that story. What we really need is the power to remake and to rewrite it.

SPEAKER_00 4:23

As a creator, curator, critic, and consultant, how has your career shaped your perspective on how normal gets constructed in culture?

SPEAKER_01 4:32

Yeah, I'd been lucky enough to be a cultural commentator, a critic, a curator on the creative side as an actor and a dancer, and all of those different things have given me kind of a 360 view how normal gets created. So I would answer that question as how has my career and all the different facets of my career, my career has even helped me understand how normal gets assumed and constructed. I would say that I've been lucky enough to be able to see the machine from different angles. And that makes it almost impossible if you're paying attention and keeping your eyes and your ears open to stay naive about something like representation. Because curating and criticism teach you pattern recognition. You see which stories repeat themselves over and over again, and you see which ones get buried. And consulting shows you where the decisions are locked in early, long before the audience ever hears or sees what has been creative, what has been made. And being on camera or being on stage shows you who they're creating the work for, because you can feel when disability is being staged to make non-disabled audiences more comfortable. So I would say across all of that, the through line and the same truth keep showing, keeps showing up. And that is culture manufactures whatever the default becomes and then sells it back to us as just the way things are. I think that's how normal gets constructed. Who gets hired? Who gets funded? Whose notes matter? Who gets to define what good looks like? I I'd say my focus through the years has shifted from okay, let's be included, to ask for who's in charge. Because inclusion without authority, that's fragile, that's fleeting, that can go away with one change. Um, power, though, is getting to decide what the story even is, and that makes all the difference.

SPEAKER_00 7:03

You've collaborated with institutions like the National Endowment for the Arts, Turner Classic Movies, and the American Film Institute. What have you observed about the structural forces shaping disability representation in media?

SPEAKER_01 7:18

Yeah, a lot could be said about the structural forces that skew, I think, and control in some ways, disability representation in media. But they're pretty predictable if you've been doing this for a little while. There are things like inertia, people just get stuck in their habits. That's the way we've always done it. So we're gonna keep doing it that way. But there's also, I think, the power structures. I keep coming back to that. Um, things like gatekeeping and risk aversion, people just being afraid of what they don't understand. And of course, the favorite excuse, I think, within the industry always comes back down to cost. And as a result of that, because they didn't put it in the budget, so then it always costs more. And so access gets treated like an exception instead of a baseline. And then that keeps the lane narrow in terms of who can participate as an artist and who gets to show up as an audience member. So these structural forces can yap about inclusion all day long, but the the system is really defined by two things as I see it, and that's budgets and authority. So, what's in the budget and who gets to make the decision? Who controls the money, who controls hiring, who controls what gets greenlit? And you know, so you can have these, and I've seen this. I mean, I've been a I was a poster child at five. I'm 58 now, right? So I've seen this throughout my entire lifetime, and you see over and over again these little bursts of disability visibility, and then you still see disabled people missing from writers' rooms or production teams or casting or leadership or executive ranks. And and I I think it's because this access can access continues to be treated as optional. And if access is treated as optional, well, then disabled people become optional. And so if you don't build it in from the beginning, it's not a creative standard and a standard that's gonna expand possibilities, so it's not gonna stick unless disabled people have real authority in the process and are there from the get-go. So access and inclusion are always the first things. Have you noticed? Access and inclusion are the first things that get cut when budgets get tightened or schedules don't align. I I think it's because the industry loves disability when it doesn't have to do anything, but it really fears disability when you've got disabled people in the house.

unknown 9:50

Yeah.

SPEAKER_00 9:52

Unfortunately, I think we are going backward instead of forward as a society. So how can we build on those foundations?

SPEAKER_01 10:00

I think we need to include accessibility in the budget in the same way that we do color correction and catering. It's just got to be a line that's always there, and we got to put disabled people in power. We got to give disabled folks an opportunity to rise up through the ranks and then prove their worth by making decisions and making the tough calls. I don't think we're gonna see real substantial changes, real fundamental changes until we change those foundations. Because every problem that I continue to see is really shaped by the lack of infrastructure in those areas. I'm gonna give you the disability version of AAA. Okay, so you've asked, how can we move forward? The disability version of triple A in my mind comes back to these three things: agency, autonomy, and authority, right? So, agency, you gotta make the decisions for yourself. Autonomy, the buck stops with you, and authority. You make your decision, that is the decision. You don't get a million people questioning it, challenging it, whatever. You're like, I have the authority to make this decision, I make that decision. But that but ultimately that's gotta start when we decide that it starts, when we when we give it some teeth, and when we begin to challenge the the misconceptions that continue to persist around disability. I I mentioned earlier that I was a poster kid at age five, right? So over 50 years. And you look, I don't care if it's movies, if it's novels, uh uh uh or if it's the news media, right? Disability still largely, unless you've got somebody who's been at it for a little while, continues to be largely a plot device, right? So it's tragedy, this horrible thing happened. Inspiration, look how this person has overcome the tragedy, or just simply looking at disability as diagnosis and not really going any further, right? Here's the here's the condition, here's what it's called, these are the effects of that condition, blah, blah, blah. Now that's outdated to you and me, and it's outdated to folks listening to the show. But out there in the world at large, it persists. And I can tell you, as a as a person, I've worked a lot in in film and TV, but the throw line for my careers, and I say that in the plural sense, has been communications. And that includes seven years working in the federal government and reaching across the aisle, talking to folks who are blue or red or purple or whatever. And those misconceptions about disability persist because they are convenient. And why are they convenient? Because they let non-disabled audiences feel something without needing to change anything. That's the problem. I think it lets institutions kind of play the game of having compassion or empathy without sharing any of the power that they have. And people, I think, have allowed, and disabled people are guilty of this, I think, have kind of allowed good intentions to equal good representation sometimes. They just don't. I think we were happy to be seen, we were happy to be heard, we were happy to be included. That was so damn rare that we were excited by that. But the butt it stops there, it hasn't grown beyond that. And so, yeah, you can have sympathetic storytelling, but it still reduces disabled folks to symbols and and sympathetic characters, which can still be patronizing, and and all of that erases agency. So, so, and it's still built around, I hate to say it, but it's the truth, non-disabled comfort. We just have been so consumed with making sure non-disabled people are comfortable with what we're saying and doing that we've neglected to tell the real story. We tell a sanitized, safe, sometimes sappy version. And and they persist because they protect the status quo. All of that protects the status quo. So I'd say we got to get past the idea that disability is something that's here to be interpreted rather than authored. And and we can't be looking at disability as an exception. We continue to think of it as an exception rather than a normal part of life, quote unquote, whatever you define normal to be. So visibility without power doesn't do us any good. It's still the same old story. I think we've got to be thinking and willing to push for stories that don't support the status quo, but actually that are willing to shake it up. I think disability is at its best when we're constructively disruptive and we just haven't been disruptive enough. We've been content to be included, but that's kept the situation out of status quo.

SPEAKER_00 15:00

What kind of narrative would you like to see in terms of shifting the kinds of stories that we put out there? What did you see on a federal level when you were in government, and what kind of narratives do we need to put out there?

SPEAKER_01 15:14

I I think it starts from the assumption that the audience watching is non-disabled. And so the choices that are made, I whether it's the framing, the lighting, the music cues, the pacing, the arc, all of those things. Even when the disabled character is centered, the work can still be organized around non-disabled feelings. And that's the same old, same old things like relief or or inspiration or admiration or pity or whatever. I think we've spent a lot of time, at least my entire life thread, talking about authentic representation. I think we need to spend a little more time talking about imagination. I'm not only interested in the world as it is, I think that's good, but that would make every film a documentary. I'm also interested in, more so these days, about how the world could be and how film could be. And so in a film like Best Summer Ever, for example, where I got to play the town cop, it was a bit of a jerk, right? Frankly a jerk. You've got this situation where disability was everywhere in that film. It's a narrative, it's a high school musical, kind of like Grease or Footloose. 75% of the cast and crew were disabled, but I don't think the word disabled was ever used. People were football players and cheerleaders and sports casters and cops and pot dealers and all kinds of stuff in that in that film. But it wasn't the focus and it wasn't where you put your attention. And so it it took that gap between sort of the experience of disability and and made it impossible to ignore by not centering whatever the diagnosis was. And I love that because disability, to anybody who's lived it, is full spectrum, baby. It is ordinary and it is messy and it is political and it is boring and it's complicated. Hollywood disability, on the other hand, is often just symbolic. It's just out there to teach non-disabled people a lesson or virtue signaling or manufacture some sort of sappy emotion so that somebody can get an award. And so I just want to see more complexity, more messiness, more imagination to expand the options in terms of what does representation mean beyond casting. I yeah, I want to see disabled actors play disabled characters, but more than that, I want to see disabled people working in production and in screenwriting and directing as you do, because we've got to get into the place where we understand I don't know, casting is the floor, authenticity is in the authority, as I was talking about earlier. So who shaped the script and and and the tone and the framing and who has the power to say this works or this doesn't work? We haven't seen enough of that. And so I think that that's really we won't see real changes until those things become the standard and rather than the exception.

SPEAKER_00 18:21

Instead of showing disabled people in film as the pity party or doing incredible things, instead of making people who are able-bodied feel good about themselves and go, Yay, we touched on disability. You say it needs to be a disabled character that is downright evil or strong.

SPEAKER_01 18:41

Yeah, I'm talking disabled people in space and disabled action heroes and disabled love interests and disabled sex workers and disabled whatever. Like I I want the the spectrum and and the full palette to be broader than just this very these very narrow lanes that we've been subjected to. You can sort of be a bad guy without having the facial disfigurement, which is sort of the the the stereotype, or or you're angry because you're disabled, or you can just be a bad guy, or you can just be a hero, or you can just be whatever. Why not have, as we sort of, as we did in Best Summer Ever, you got a disabled character who's the school teacher or the principal, right? But the story, the plot and the point doesn't center around their disability. It doesn't shy away from it. You see it. They might talk about it on screen, but the focus is the football game or the love interest or whatever the pot of the story that you're trying to tell us.

SPEAKER_00 19:41

In your writing for Film Quarterly, PBS, The Atlantic, and USA Today, what recurring misconceptions about disability representation do you see? And why do they persist?

SPEAKER_01 19:55

Again, I think they persist because people have confused the narrative with reality. The misconceptions about disability, why do they persist? And I think they persist because they've been reinforced over and over again for so long that the stereotype and the misconception is now confused with reality. In fact, if people see representation of disability that isn't tragic or heroic or isn't the diagnosis, what we talked about earlier, they don't know what to do about it. They don't know what to do with it, rather. They don't know where to place it. They're like, what kind of story is this? I've never seen this before. If you're if you're not overcoming it, if I'm not playing rocking music, then what am I supposed to do here? Audiences have been spoon-fed, the same tripe, over and over again for so long that I think they've confused the misconceptions with reality, and and that has limited the stories that we've been able to tell. I think it's that inertia over and over again, and I think it's a it's we've we've in the desire or the attempt to make people comfortable, we've stopped getting real or we haven't gotten real in the first place. And that just keeps manufacturing or recycling the same stories over and over again. That I think is is the real is the real problem. They persist because uh while people are hungry, I can tell you, but before Real Abilities, I had a month-long, a monthly, I should say, disability film series in New York City that was called Dis This. And the tagline was disability from a whole new lens. And it was a six-month experiment that lasted four years that we ended up doing in partnership with NYU at some point. And the idea was that all the films I had seen, or most of them that I had seen to that point, showed this films about disability that were one of three things happy, safe, or sentimental. So I asked myself if I screened movies that weren't any of those three things, would other people show up? Would I just be sitting in the dark eating popcorn watching? Movies I loved. And these were independent, they were edgy, they were like cult films, and they they weren't playing into those old, tired stereotypes. And we started out, we had 25 people, then we had 50 people, then we had 75 people, then we had 100. And then it came to the end of the six months and they wouldn't let me stop. And what was very clear there, with this this, and has certainly been confirmed and affirmed over and over again in the 18 years that we've been doing real abilities now, is that people are hungry for disability to be done differently. They are tired of the same old, same old. They are eager to get something new, even if they don't know what that is. And so I think we need to, more and more disabled filmmakers, one just have to do it, I have to put it out there. And by making the films, that's getting easier and easier right now because of technology. It's getting cheaper to do, which is good. You can you can record video instead of on film. There are many things that are breaking down some of those traditional and historic barriers. And time and time again, when we screen those films that are outside the box, that are different, that are edgy, that are, that are show a point of view or perspective that hasn't been seen before. People like with Best Summer kind of are minds are blown. And they're like, wow, I haven't seen that before. Give me more. But sometimes we have to show them, we have to give them that first taste for the light bulb to go off. I think what we need right now are more opportunities for that light bulb to go off, both for disabled artists and disabled audiences and viewers at large, who may become disabled at any point in time in their own lives as well. It's the kind of thing that we're doing at Real Abilities, right? You've got to change the power structures and you've got to change the systems. So let me talk a little bit about that, I think. I think the the the fix, you talk about the structures, the the fix is pretty direct if you break it down. You gotta standardize access, just bake it in. You gotta fund disability-led talent, you've got to hire disabled people across departments, right? So that's catering, that's gaffers, that's color correction across the board, and then of course, production and direction and acting and all those things, and make sure that disabled people get an opportunity to be in leadership roles where the decisions are made. Otherwise, you just get periodic visibility and and but permanent dependence. So, I mean, if we're if we're visible but not deciding, I think this is what I'll come back to here. If you see us, but we're making the decisions, we're still being managed. We need to be the ones managing. That ultimately is what needs to change everywhere, every one of these circumstances. Who's making the decisions?

SPEAKER_00 24:49

From Code of the Freaks to Best Summer Ever, how have your on-screen experiences revealed the distance between lived disability and Hollywood's portrayals of it?

SPEAKER_01 25:00

Yeah, I talked about this a little bit before. How did my experiences from Code of the Freaks or on to Best Summer Ever, what did that reveal to me? And I think it revealed that the story that gets told depends on who's making the story, who's to who's telling the story, and who you've invited to be part of that process. So if the even I think I said it before, even when a disabled character is centered, the work can be organized around non-disabled people, trying to make them feel better. Disabled work, this is what I learned. Disabled work tends to do something else. It starts from the inside and then it shines outward. So it doesn't attempt to translate disability in order to make it more palatable to somebody else. You meet the disabled folks in those stories as they are on our terms. And then it lets disability exist, and then you've got to meet it where it is or where the people that you're viewing are. And that difference is is less about talent because there's disabled talent everywhere. And I think more about authority, right? Who has the power to shape the story? So it's it's really asking yourself, what is the story I want to tell? Who is the story built to serve? And and who gets to decide that? And then having the guts or the willingness or the or the resources to actually tell that story in a different way. It it really comes down to two things, I think imagination and opportunity. And you need both of them in order to do it differently.

SPEAKER_00 26:32

Looking at the big picture, what do you see as the biggest barriers to disabled creatives having real power in media, not just visibility?

SPEAKER_01 26:41

Yeah, I think there are two questions there. One is about the pipeline, right? And I think that's the first part of the question, which is really important. Like, what are the biggest barriers to disabled people having that real kind of power that I've been talking about? Something beyond mere visibility. I uh let me talk about that first. I would say the barriers are structural, they're persisting. Access friction that turns participation into an obstacle course, and gatekeeping blocks entry to networking and meeting other people and building a career. And then you've got people are in the industry, or they've got this notion in their heads that disabled people are expensive or complicated or whatever, or just difficult to deal with. And you've got the pipeline myth, I think, which is really important to talk about. I've heard over and over again, and I'm I've lost count. How many times I've heard industry types say, well, we can't find disabled talent. But what they really are saying is they don't have systems that recruit, train, mentor, or hire disabled people in ways that can grow and compound over time. So power in the industry, man, is created through repeats. Jobs lead to more jobs, right? And so if disabled people are only invited in for special projects, I'm gonna build that career in the way that the industry is set up. So I think, you know, you've gotta you've gotta do those things. You've got to standardize access and fund development and hire disabled people across departments, as I was saying earlier. So, how do you do that? How do you make those changes? Why, why does why do groups like real abilities exist? And how are we changing the landscape?

SPEAKER_00 28:26

How has real abilities changed the landscape for disabled storytellers, directors, and performers? And what does real abilities do differently that Hollywood should pay close attention to?

SPEAKER_01 28:38

Yeah, I I I think first off, I want to put a fine point on it because people, if they think about when they think about Real Abilities, they may might think about us as our flagship film festival, which is in the spring every year. But you think festival, and and there's an assumption, right, that you go for the week, the nine days, and that's a celebration of work that's currently being shown today, and then it's over. The rest of the year, what do you do? RealAbilities is an annual film festival and a year-round nonprofit organization, year-round advocacy group. So we do three things really consistently to improve inclusion and accessibility for disabled artists and audiences. We put the past in perspective, we showcase what disabled creatives are making right now, and we work year-round to build a more inclusive and accessible future for disabled artists and audiences. And that work never stops. It's not accidental, it's a strategy because the past matters. Representation has a history, that's why. And history explains the harm and shows you the patterns. And so the present matters because the new way was already here and it deserves a real platform. People need to see this work. And the future matters because access and inclusion have to become the baseline, not just an add-on, not something that's just done as a special favor to somebody. If you're gonna build a real career, people need to fully participate. So what we do at Real Abilities is really all about infrastructure. It's about raising the standards and raising the bar. It's about bringing communities together, and it's about always keeping an eye on the lawn game that moves culture toward that disability autonomy and authority and agency that we were talking about earlier. It's not a spotlight, it's more of a power grid. There are multiple things happening at once. And I think what makes Real Abilities different, and this is someone who had a relationship with Real Abilities since before it began, but now has been in a leadership position as director of engagement for a little bit over a year. I think what Real Abilities has done most impressively is change the landscape through consistency. One great film isn't going to change a system. That crystal will still be there in one platform when it returns every year and it continues to grow and build community and raise standards and expectations. It's got repetition. These things happen over and over and over again. And through time, those changes, as they continue to happen and you continue to push the envelope, changes culture. You've got stories that when told together change narratives. Real abilities does that better than anybody. And then audiences start to have different expectations. And so do the artists. And so Real Abilities, I think, is at its best because we're creating spaces where disabled creatives aren't just a novelty act on somebody else's stage, because visibility without opportunity is just applause. You can get that in your living room or your backyard. But Real Abilities helps work be seen in a context. And that context is really important because the context in which it's presented builds relationships, establishes careers, and gives you some momentum, a little gas to move forward with some fuel to move forward. And so by treating access kind of as a baseline, we're changing who can participate as an artist and who can show up as an audience member. I think that's crucial. And when that room changes, who's in that room changes, the conversation also changes. And then the expectations also change. And so when the expectations change, then you've got enough pressure toward the industry that they have to evolve. And so I would say it's that consistency over time, 18 years now, that builds a track record of success and power and beyond this year's headlines or last year's headlines, where meaningful changes can actually take place.

SPEAKER_00 32:59

You talk about how we're not really a democracy if not everyone can physically vote. So let's talk about that logically. I expected there to be flying cars by now, and for us as a society to be focused on things like what to do about the climate crisis and human survival. It's 2026 not to be focused on voting, which is a fundamental right. So what do we need to do to change infrastructure? Because mail and voting is not accessible and doesn't work.

SPEAKER_01 33:30

Let me start with the voting question. With regard to barriers in voting, I began my work in disability doing public policy in New York City, one of the largest, most influential cities in the United States. Some of the barriers, and this was in 2005, 2006, the barriers that we saw then are still persisting 20 years later. And they continue to be predictable. Barriers to voting are inaccessible polling places, machines that fail, inadequate trading, inaccessible information, problems with transportation, just getting to the voting polling place, I should say. Um long lanes, long lines, right? That that you're gonna be in pain, you're gonna be fatigued, you can't get the assistance that you need. These are not one-offs, these are not happenstance, they're they're they're recurring failures that continue to happen over and over and over again. But the foundation for those failures are cultural, because disabled people are still treated like peripheral citizens, as as somebody that doesn't really need to be included unless they really fight to be included and they cause a stink, and then you've got to include them, but you don't have to enjoy it and you're gonna be grudging about it. And so you people tolerate lack of access until it affects them. And then they see how tough it can be until it until it affects them personally. So they treat it as something that's inconvenient rather than unconstitutional. So I think that ultimately that has to change. I I'd say eliminating those barriers requires consistency. I'll come back to that. Enforceable standards, funding, and consequences for noncompliance. If you mess up and you mess up over and over again and somebody can't vote, then there have to be penalties for that. Voting access has to be a core function of actual democracy. If we're going to call ourselves a representative democracy, then people have to be able to vote, all people. If disabled people can't vote reliably, then that's uh not a disability problem ultimately, that's a democracy problem. And we have to treat it as such because voting access comes back to power, and when that's blocked, well, everything else is blocked as well. To the second part of your question, which I think is just as important, which is how does media representation influence public policy? Every way, shape, or form. And this is why. This is what I learned doing public policy, grassroots public policy work in New York City, and then seven years on the federal level, the National Council on Disability, is that policy is always downstream of perception. And if media teaches the public that disability equals tragedy or dependency, well, then policy becomes paternalism. And then you get minimal support and maximum control, right? It's charity. It's something you do because you want to, not because you have to. And then media, if it starts to teach the world that disabled people are full of citizens that should have equal rights and equal access, autonomy, and investment, well, that's going to change everything, right? Imagine IDEA, Individuals with Disabilities Education Act, passed in the mid-70s, never been fully funded for over 50 years, has not been fully funded. And so we know that, yeah, the media doesn't write laws, but it writes, it writes the permission structures for laws. It allows things to happen or not to happen. And it shapes what voters are willing to accept and what lawmakers fear and what institutions think they can get away with. And so sentimental disability stories, they aren't just annoying, they're politically consequential. They they normalize pity and low expectations, and that's why they are dangerous. If we're not showing disabled people in disability communities, even, right? Because it's not just about the individual. Disability has been framed as an individual burden. It's not been treated as a constituency. When you got groups of people come together together with similar needs and similar concerns, so you got to show disabled folks, one as a constituency, groups of people coming together, that 28.7% of the public that we were talking about earlier, and as complex citizens that have agency. You do that, you can't justify the systems. You can't justify the status quo that continues to trap people in poverty or in lack of access. It's it's not just decoration. Representation, when you do it right, is a central part of the civic ecosystem. You get it wrong and everything else falls apart. I think we need the will to get there. First and foremost, it starts with deciding that's what we're gonna do. We found out during COVID-19 that everything shut down and we thought, oh, how are we gonna have school? How are we gonna have classes? We used the existing technology and improved upon it in order to make classrooms accessible to people. We wanted to do it, so we found a way to make it work. None of these things are gonna work until we decide that we want to do them. People just didn't go to the moon because they wanted to go to the moon. It was a decision. Willpower, knowledge, skill, money was all put into making that a reality. And it's gonna take all those things to make voting and any other public policy issue more accessible and workable. It begins with the decision. And until we make the decision, it's just gonna be piecemeal here and there. I think ultimately, when you look at public policy in general, right, at the end of the day, we've got to stop forcing disabled people to choose between survival and opportunity, get it, get folks out of the poverty trap. Too many systems punish work, punish savings, punish independence, all those things we're supposed to be working toward. And that's containment disguised as support. So we can't we can't do this unless we have benefit reforms that allow disabled people to earn and save without losing essential supports. I think ultimately that's what it comes down to. We've got to end the poverty traps, and we've got to have asset limits where people um um aren't forced to stay broke or income clips that punish people for working. It's gonna require a fundamental shift in thinking and in doing so that the policies that we enact are more reflective of reality. Many disabled people have variable capacity or variable income, especially freelancers and artists. And a rigid system can't handle variability. It doesn't support work, it penalizes it. So ultimately, it's going to come down to rethinking the systems that are in place right now. Ultimately, the point of government assistance should be increasing participation and stability, not things like surveillance and big brother and scarcity. But if the system requires people to stay poor to stay eligible, then the system is broken by design. So I think it's going to take fundamental changes across the board. What we have now is it clearly isn't working. So we almost have to start from scratch.

SPEAKER_00 40:45

Health care, health insurance, and income are all intertwined. So what I am getting at is what do the numbers look like, and how does health care, income, social security, and having a savings without getting punished because income is a huge issue, especially the question of who should get disability benefits and who should not, and what qualifies as being disabled? Can you talk about that? On a personal level, how have you been affected? What reforms are essential to make disability benefits functional, fair, and dignity-centered?

SPEAKER_01 41:22

I I I guess I would say I'm faced right now, and I think many people are. One of the hot button issues and topics that that people are um engaged with at the moment and is healthcare reform, right? And when we look at my insurance is gone, which I'm paying for on my own currently, from $500 a month to $1,300 a month because the subsidies, if the subsidies disappear. And healthcare gaps are a lot of different things, right? But but they they come down to so much access and competence and coordination and bias, right? So if you've so I don't know, if you've got coverage without competence, or your access isn't affordable, that's not care, right? Too many providers treat disability as the whole story or treat disability as a as some kind of anomaly, anomaly that can lead to dismissal and diagnosis and all kinds of misunderstandings. And um, we need accessibility standards, we need better reimbursement for coordinated care, we need training that makes disability competence the norm rather than an option or even an anomaly. And and accountability matters. I mean, can complaint charges that just go into the void, like the processes that you can file a complaint, but you never hear anything back or changes are never made, um, um, are just paperwork. That's not progress, you know, and and so I think we've allowed too many of these things to to become the status quo. And and I think the the foundation of it is consistency and accountability. And if you can't access competent, affordable care, your ability to work, vote, create, live, um, is constrained. Um, that again is not just a healthcare issue. It's it's it's not about um allocation systems or accounting systems. It it comes back to power. Bias is a barrier, and like stairs or lack of captioning or audio description. Policy can remove those barriers, but we you have to be willing, one, to make those policies and two, be accountable to them. Um and we're seeing too many gaps, too many breaks between the practical reality that people live and the inadequate assumptions or infrastructures that keep these systems broken. The problem is you're asking how these things, which are obviously uh in so many ways, intertwined, right? Income, opportunity, caregiving, health care, care making, just basically living one's life. The the the I think what people fail to understand is where these things intersect, and they all intersect, right? Um is that wherever and however they intersect disability within the system or within these systems is something that's always going to complicate whatever else exists. And so you might have poverty but if you add disability to poverty it complicates that system. You might have lack of opportunity at work, but add disability to that mix, it makes it even messier. You might have bias and stereotypes about this group of people or that constituency, but if you add disability to that mix, be it race, be it age, you're complicating an already messy narrative. And so as as I see it, I'm just tired at the end of the day, I'm tired of awareness campaigns and I want to see more shifts toward accountability and and shifting the status of power so that people aren't forced to choose between having a job and leaving the house or buying their medications or getting married or or eating or going to school. These are the types of decisions that people are being forced to make. And I think storytelling in some way shifts policy because it makes exclusion unacceptable. And and what we've got to do I think is connect the barriers that disabled people face to real life systems, right? To where the point out use the individual circumstances that people face to show how the system is broken. And then you start talking about how the system is broken. Well then you also have to point a picture and talk about um what are the solutions? How would I fix this if it came down to me? Right? What are the changes that I would make and why would I make those changes? And this is how those changes would benefit everybody. It is the public policy equivalent of the curb cut effect which is yeah it might have been designed with this one group in mind but everybody else benefits from it as well. And I think disabled people have got to be willing and and actually in in positions where we can help illustrate those stories. One thing that's very clear to me though is that Penny doesn't build that kind of power never will never has and never will clarity does though. And and I think the the most affected stories everybody's circumstances are going to be different. I can only really talk about my own but you you can talk about yours and there everybody listening can talk about theirs right but we've often been told we've been conditioned to believe that let me put it this way disabled people are inspirational. But inspiration without perspiration actually rolling up your sleeves and doing the work is a synonym for aspiration and that's just a lot of hot air and so what you got to do is make that inspiration mean something. Something in order for inspiration to matter it has to be a verb something has to shift something has to change. And so when we talk about disabled people within the middle of these systems whichever one you want to pick citizens experts neighbors caregivers we're all dealing with structures that can and should be changed. And so I think what we have to do is change what the public expects and what the public public expectations are what by these institutions. Everybody wants to heal or fix disabled people but we're not talking about fixing the systems that keep us down. So I think the focus has to be different. We got to raise standards so that policymakers need cover. Yeah elected officials can't hide behind we didn't know or it's complicated. We've been telling them for decades. And so I think what we've got to do is sort of create the kind of moral urgency show up everywhere be noisy be loud be dare to be obnoxious in some ways so that we can turn that moral urgency away from oh I don't know awareness toward and from a request to a demand. And that only happens as you've seen from you might want to look at Jim Lebrecht and Nicole Nunham's Crip Camp or Jim's uh uh change not charity um you can't do it you can't be like Oliver please sir may I have some more it can't be a request it has to be a demand and it's only going to be a demand that demand is only going to be listened to when we come together and as a unified voice and we're stating the same things I think as a community we fail to do that in in many ways. We tend to focus on disability as an individual burden that's what society has taught us Lawrence is disabled Alexander is disabled what are they going to do to get themselves wherever they need to be in life instead of asking what are the systems that hold people like Alexander and Lawrence back how do we change those we got to change the questions that we're asking in order to get the right answers. What I have learned through time is that my experience of normal has changed several times throughout my life and it continues to change. What was normal for me at five years old was very different at 15 and very different at 35 than it is for me now at 58. And if I'm lucky to live long enough then it's going to be at 85. And so what having a disability from birth has taught me is that life is impermanent things will always shift and things will always change and that one thing that disabled people are really good at is adapting to meet those changes because we get a lot of freaking practice doing it. And we don't have the luxury of being complicit or complacent because the goalposts are always changing and I think our needs in some ways are always changing as well. I I am not immune to that any more than anybody else's. I think what disability has has taught me though or or has given me in some ways is an opportunity to develop skills to meet that challenge. I have had to live my entire life in a world that wasn't built for people like us in mind. So I have learned how to do that. I have learned how to innovate and how to adapt and how to improvise and how to be creative. Those skills while sometimes exhausting because sometimes you just want to go and do the thing and be done with it right have served me well and continue to serve me well. And so Monday is sometimes different than Tuesday is very often different than Friday and who knows what I'm thinking on Sunday. But what I've learned to do is kind of surf the waves the metaphorical waves if you will between those different changes and just keep moving forward ultimately even if that means I take a day or a week or a month of rest it's with that goal of I'm recharging my batteries so that I can get back to it when the time is right. And I think uh uh having cerebral palsy my entire life has given me an opportunity to develop those skills whether I asked for it or not um um in a way that I don't know a lot of people have had opportunities to do nor if they suddenly found themselves 80% of those who have disabilities become disabled later in life my disabilities have certainly become more pronounced as I've gotten older and they've changed. You better learn that it's going to change often um um and once you accept that reality you can then learn to work with it I think the thing most non-disabled people do not realize and are afraid to realize is that is that practical reality nor are they equipped to deal with it because so many people are in denial. That they don't want to think that they might someday if they live long enough they might too become disabled. So they don't prepare for it. They don't prepare for it and then when it happens which is almost inevitable they don't know what to do and they they haven't done the they haven't done the homework that they need to understand it. They haven't developed the networks that they need to navigate it. They haven't learned what they need to learn about the history in order to keep the mistakes of the past from happening again. And so people are ill prepared because they put these blinders on thinking disability is that thing that happens to those people and not relating it back to themselves. And I think we all at the end of the day are harmed by that way of thinking I think we've got to think about it broader and that's going to change the way we act and the way we relate to it.

SPEAKER_00 52:37

When it comes to healthcare where do you see the most significant gaps in access quality and understanding and how can policymakers make a change in this space?

SPEAKER_01 52:49

Yeah I think we talked about that I I think this answer kind of covers all those bases right so what are the most urgent fundamental policy changes right in order for disabled people to live their lives to the fullest well I I can tell you this as somebody who's lived his life most of my work and my career has been in communications I I appreciate and understand the value of repetition and advertising advertisers will tell you that people need to hear something at least nine times before it sticks in their head I am more than willing to repeat these things but but but let me let me just kind of rephrase in a way that I think ties it all together if I may here's the bottom line we have to stop if we really want this stuff to change we have to stop forcing disabled people to choose between survival and opportunity that's that's the bottom freaking line like too many systems punish work and punish savings and punish independence. I think I said it before that that's not support that's barely survival and and so we need reforms to these systems and they need to be fundamentally reformed that allow people to earn a living and save money I'll I'll be very stupid like bottom line here earn money save money without losing health care or housing and so what does that mean that means stronger home and community based services so that people aren't shoved into nursing homes or institutions where your rights and your opportunities go into mouthballs. And and if you're going to do that then then you need to have enforceable accessibility for lack of a better phrase and housing transportation freaking online access because modern life is dependent on all of those systems. And so healthcare to go back to healthcare for a minute must be yeah competent yeah accessible and yeah affordable in order to be meaningful because covered doesn't mean squat if you know you've got insurance coverage but you can't afford to get the test done. It doesn't mean anything it's it's meaningless. So I I would say that the concepts I'll just bang away on it again concepts like autonomy are not abstract. The ability to participate fully in public life are dependent in many ways on the supports that make participation possible. And we've got to fight you know what we've learned if anything in the ensuing years posts the lockdown part of COVID because COVID's still with us in some ways and certainly with different administrations in power is that these kings can change very rapidly it it's it's it's a lot easier to destroy stuff. You can do it a lot quicker than you can build them up. And so we can't take these things for granted. So understand that who you vote for has consequences and people in your life will either be hurt or harmed by the choices that you make and be willing to educate yourself about the hurt or the help that the choices that you make are are likely to have toward the people that you love and if they tell you listen for God's sakes. Ultimately it comes back to daring to ask disabled people what the reality of the situation is. If you're going to say that you're an ally then be supportive enough to shut up and listen and then take into account the things that they tell you. When people tell you this is harmful, listen. When people tell you this is helpful, listen. And then act accordingly based on what your heart and your conscience and your mind tell you I think we've we've lost the willingness to sit down and dialogue with each other and actually listen to the reality of these situations in some ways. And ultimately the words community and communication come from the same source and that means being with and listening to each other. And we have to have a willingness to do both of those things in order for society to work. But it affects disabled people differently yes absolutely like I said before disability complicates everything right it influences everything. So yeah this is a how do you be human? One of the ways that you be human is to understand that if one has a disability it's going to complicate and influence every other aspect of their life.

SPEAKER_00 57:14

For people listening how can they take action? Because it's very important to me that people not just listen but take immediate action.

SPEAKER_01 57:22

So you've asked what amount would be comfortable not just to get by but to actually thrive not to survive but thrive. And I think that's going to depend on so many different factors. I think it's going to depend upon the zip code that you live in I the cost of living for me in Oakland California was very different than when I lived in New York City and is very different than where I live in Asheville, North Carolina. So I think that's going to vary depending on the individual but what what I I can say without any hesitation is that we're probably going to have to get off this kind of romantic notion of pulling ourselves up by our bootstraps and being ultra resourceful because manufacturing whether you're disabled or not things like manufacturing jobs are going overseas um your billionaire bosses are going to do what they can to make sure the shareholders are happy and that keep them employed and keep them making money. And so blue collar work a lot of the manufacturing jobs factory jobs a lot of the things that were part and parcel to creating a I'm getting into a whole different conversation here but but to the United States let's say post-World War II are gone are are quickly going the way of the dinosaur and so I think we're going to have to start looking at things like universal basic income and looking at ways to redistribute wealth so that people have the means and the resources and the funds in order to live their lives fundamentally different way than we've ever dared to look at before. And that's going to include disabled people as well. I don't have the the experience or the knowledge to give you the nuts and bolts and the details on that, but I can look at it in broad strokes and I can forecast going forward 10, 15 years, that's no longer going to be something that that that's optional. I think it's probably going to be required because the way that people live work and feed themselves continues to fundamentally change at a rapid rapid pace. And so we better start looking for answers to these questions now or we're going to be ill prepared to deal with the situation that's just going to smack us in the face. So I I mean I I I don't want to end this kind of on a because I've got to go pretty soon but end this on a down note but it means doing what disabled people do every day which is planning ahead looking forward planning for every inevitability or any possibility of success or of failure um and then adapting as we need to. So it's daring to ask those tough questions and then making decisions based on what the best and what the worst answers might be. Disabled people do that every day.

SPEAKER_00 59:52

How can people reach out to you?

SPEAKER_01 59:54

Thank you for the opportunity I love this conversation Alexander and I I appreciate the conversation I think it's necessary today and I'm I'm just grateful for it and grateful for you. Anybody that would want to reach out they want to reach out personally the best address is Lawrence L-A-W-R-E-N-C-E at nothing without us nothing without us all smushed together dot com and I do that I I bought that domain back in I think 2013 something like that because the saying that disabled people kind of adopted has been nothing with about us without us but if you say that you assume that there are some things that disabled people needn't be around or needn't be in or needn't be a part of I don't buy that anymore. I think it should be nothing without us period disabled people should be everywhere that everybody else is and so you want to reach out directly to me you can reach me at Lawrence at nothingwithoutus dot com. I'm on blue sky lcarterlong same with Instagram lcarterlong you can find me there do a search on LinkedIn you can get me there if it's work related to everything that we're doing at Real Abilities the excitement on the horizon there as we go toward our 18th year you can reach me at Lawrence L A W R E N C E at R E E L like the movie Real Real Abilities All Together OneWord dot O R G. And I'd also say if you're reaching out because you enjoyed the podcast that's wonderful I want to hear from you or if you disagree with something please let me know that's how I learn but if you're reaching out for help with something clarity really helps. I mean have these answers uh ask yourself these questions what are you building? What do you need and what's the timeline and and and are you serious about access as a baseline and disabled leadership as a standard if so I'm down I'm interested in any collaborations that that move those resources and shift decision making so I I I don't do optics I do infrastructure is what I've started to say and so if you want to the shift shift happens so if you want to shift who gets hired or who gets funded and who's trusted then my inbox is open to you at any time bring it on I'm Alexander Freeman and this has been Remaking Normal the people you'll hear on this podcast and the stories they share remind us that normal isn't a rule to follow it's something personal something evolving something we create every time we choose to be real if you've been inspired by these conversations make sure to subscribe to Remaking Normal wherever you listen to podcasts and to the Outcast productions LLC YouTube channel for films and more follow me on Instagram at realalexanderfreman you can also visit myownormalmovie dot com to learn more about my documentary My Own Normal and explore outcast productions dot com and consider working together on a film thank you for listening for feeling and for being part of this journey together we're remaking normal