We’re Not Broken: Changing the Conversation around Autism with Eric Garcia

Podcast with Eric Garcia by Brandy Schillace

“We’re Not Broken is a landmark book at a crucial moment in history, when autistic people are finally being recognized as the ultimate authority on their own lives. Surveying the whole autism landscape -from federal policy to intimate relationships -with heart, insight, and wit, Garcia’s book will inspire generations of people on the spectrum to realize their fullest potential.”

—Steve Silberman, New York Timesbest-selling author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

 

Join us on this episode of the Medical Humanities Podcast as Brandy Schillace speaks with Eric Garcia, author of WE’RE NOT BROKEN: Changing the Autism Conversation (Houghton Mifflin Harcourt, August 3, 2021). With a reporter’s eye and an insider’s perspective, Garcia chronicles the state of autism in America. Part manifesto, part memoir, and part reported essay, WE’RE NOT BROKEN weaves together personal anecdotes, interviews, and the latest scientific research to debunk the most pernicious misconceptions about autism and show that autistic people are everywhere —from dating apps to workplaces to Congress —and deserve to have a say in the policies and structures shaping their lives.

 

Eric Gardia Portrait
©Kristin Herbruck

ERIC GARCIA is the senior Washington correspondent for The Independent. Previously, he was an assistant editor at the Washington Post‘s Outlook section and an associate editor at The Hill and a correspondent for National Journal, MarketWatch and Roll Call. He has also written for the Daily Beast, the New Republic, and Salon.com. Garcia is a graduate of the University of North Carolina at Chapel Hill. You can see Eric share his work and research on You’re Wrong About and his recent piece on NBC News THINK.

 

 

Transcript

BRANDY SCHILLACE: Hello and welcome back to the Medical Humanities Podcast. This is Dr. Brandy Schillace, Editor in Chief. And today, I’m really excited to have with me Eric Garcia. He’s a Washington D.C.-based journalist who’s focused on politics and policy and is currently the senior Washington correspondent for The Independent. His first book has just come out on August 3rd, We’re Not Broken: Changing the Autism Conversation. I’m really excited. I’ve actually read it myself. Eric, welcome and thank you for joining us.

ERIC GARCIA: Thank you for having me, Brandy.

SCHILLACE: You know, I came across your book in part through an online conversation on Twitter, and I have so enjoyed it. And I just wanted to ask you to say a little bit more to the audience about who you are and how you came to this subject and approach to this topic.

GARCIA: Well, I mean, I’m autistic, so I guess I was born.

SCHILLACE: [laughs]

GARCIA: As my friend John Marble likes to say! But I think the other thing that happened was I didn’t want to, in my career, I didn’t really wanna be somebody who wrote about autism for a long time. I worked at MarketWatch. I worked at National Journal. I was an economic correspondent when I started writing about it. And I will, and I was happy to do that. I was doing what I wanted. I was perfectly happy to do that.

What happened was I think that…. So, in 2015 I was at a party, and a friend of mine by the name of Tim Mack, he offered me a drink. And he said, and I said, “Oh, I don’t drink ‘cause I’m on the autism spectrum.” And he said, “Oh, there’s a lot of autistic people here.” And a medicine I take doesn’t mix with alcohol. It’s like, “Oh, there’s a lot of autistic people in Washington, D.C.” And I was like, “Ah, I hadn’t thought of that.” He’s like, “You should write something about that.” And I was 24, I was 23 at the time. I was 24. I was 24 at the time. And I thought, oh, you know, when I get better as a journalist, I’ll do that.

Then what happened was I was at National Journal, really happy doing things there. Then the print, they decided to shut down the print edition of the magazine. And so, then I pitched this idea to my friend Richard Just, who was the editor of the print magazine. He said, “Well, why should this exist?” And I said, kind of, “Well, I think we focus too much on trying to cure autism and not enough on trying to help autistic people live fulfilling lives.”

SCHILLACE: Mm.

GARCIA: Now, if you remember, this is in 2015.

SCHILLACE: Right.

GARCIA: So, if you remember in the beginning of 2015, there was that measles outbreak at Disneyland.

SCHILLACE: Oh, yes! Yes.

GARCIA: And it’s because pare-, you know, a bunch of hippie parents wouldn’t vaccinate their damn kids, you know?

SCHILLACE: Right.

GARCIA: ‘Cause, ‘cause they’re afraid of, they’re afraid of, you know, their kids getting autism.

SCHILLACE: From the vaccine.

GARCIA: And then the se— Yeah, from the vaccine, which is just not true, you know?

SCHILLACE: No, not at all. [laughs]

GARCIA: You know? And then what happened after is that, you know, I’m a political reporter. And then, you know, the next thing that I know is Donald Trump decides to run for president.

SCHILLACE: Yeah.

GARCIA: And, you know, he says on the debate stage that autism has become an epidemic.

SCHILLACE: Oh, god.

GARCIA: He blames the vaccines. But then the more, you know, and part of me was just like Donald Trump is Donald Trump, you know. Ah, you know?

SCHILLACE: Right.

GARCIA: Then what, but what happened is afterward, Ben Carson, who is a pediatric neurosurgeon, had a chance to say Trump is full of it. And he kind of, he kind of dithered. And, you know, that said to me that, you know, wow! We’ve had a lot of bad information about autism.

SCHILLACE: Right! [laughs]

GARCIA: And, you know, my feeling was, OK, if our public officials, if our politicians are having bad information about autism, what does that mean for the rest of us? So, I wrote that piece that blew up, changed my life overnight. Then my agent now, Heather Jackson, suggested I write a book. And then I thought, well, you know, my main argument was in that piece. But I was like, well, what does it look like? How did, if we got so much bad information about— Sorry for that. If we got so much bad information about autism, what does that, that means that we must have, you know, that means that we must have a lot of bad policies about autism.

SCHILLACE: Right.

GARCIA: And it means that we must be really letting down autistic people. So, what I did is I just, is I decided, oh, I’m just gonna close that. I mean, so, what I decided to do is I just decided to hit the road.

SCHILLACE: OK, yeah.

GARCIA: I decided to travel across the country to see what’s it like to be autistic across America?

SCHILLACE: Right.

GARCIA: So, I went to the Bay Area of California. I went to Pittsburgh. I went to Michigan. I went to Nashville, Tennessee. I went to West Virginia. And I even did some reporting here in Washington, D.C., which is where I live, and basically, just tried to interview autistic people and see what is it like to be autistic in this country?

SCHILLACE: Right.

GARCIA: What are the challenges that autistic people face? And what are we not doing, and what can we do to improve people’s lives?

SCHILLACE: Yes. Yes, and I think that’s, the what are we not doing, and what can we do? Because I feel as though too often, we, even in social justice circles, we stop at the what are we not doing without giving people a sense that there’s a way forward, that there’s some, that there’s ways to improve, improve access, improve understanding. That there’s ways forward is just as important.

GARCIA: Right. Yeah. Like, so, I was really kind of compelled to write this because of, because like I was just like, well, you know, well, you know, I’m a political reporter by trade, you know? And I think I could have, you know, and people have said this to me that, like, I potentially could’ve written a piece, you know, written a book about, you know, just more of a straight memoir-ish kinda thing, you know?

SCHILLACE: Sure.

GARCIA: You know, maybe I would’ve sold more copies of the book, you know. Maybe I would’ve, you know. But my feeling was, my story is just my story, and I’m a political journalist. And I felt that, like, you know, I wanna know how is it possible that I was able to succeed? And then also, how is it possible that so many autistic people weren’t able to succeed and didn’t have the same resources I did? I mean, what happened when they didn’t have the same resources as I did, the same resources I did? I’m sorry.

SCHILLACE: [laughs]

GARCIA: And what happens when that’s the case? ‘Cause one of the things after that piece, after that piece came out, one of the things that fascinated me was how many autistic people I met across the country. And I hope this comes out in the book that autistic people are just fantastic people, you know?

SCHILLACE: [delighted chuckle]

GARCIA: Like, I thought, I think that they’re amazing. And I think what I wanted to know is that, like, there are smarter autistic people than I am. There are harder working autistic people than I am. There are kinder autistic people that I am. But I would, but, you know, that doesn’t necessarily…. But, you know, so, my feeling was, wow. You know, like, how was I able to succeed, and how were those people, and why did those people languish? Like, what happened?

SCHILLACE: Right, right.

GARCIA: So, my impulse was to place myself in the larger tapestry of everything rather than just tell my own story and like, oh, look at me, you know?

SCHILLACE: Yeah. No, I get that completely. Well, partly. I mean, full disclosure, I am myself, I’m undiagnosed because I didn’t realize until I was an adult, but I actually am also autistic.

GARCIA: Yeah.

SCHILLACE: And as a child being told so often, right, that I was to not be weird. “Don’t be weird.”

GARCIA: Yeah.

SCHILLACE: “You know you’re weird to people.” And my only frame of reference for autism was Rain Man, movies.

GARCIA: Yeah.

SCHILLACE: And so, of course, my parents, I watched that. And if you’re told that’s, if you yourself, even an autistic person are told that’s autism, of course you’re gonna think, well, that’s not what I have. I don’t wanna tell the world about that. You know, I don’t wanna identify with that because the representation is so poor.

GARCIA: Yeah, exactly. Yeah, like I mean, yeah, like well, like I’ve talked about, I’ve spent a lot of time dragging Rain Man, so I don’t wanna….

SCHILLACE: [laughs]

GARCIA: And, you know, like, but like, my general beef with it is this idea that, my general beef with the movie Rain Man is we don’t really get much of Raymond’s inner world or how he feels or thinks. It’s almost entirely through Tom Cruise’s lens.

SCHILLACE: Right! [laughs]

GARCIA: Which is one reason I hate that movie so much. But then the other thing is that, you know, I really kind of have a problem with the fact that Rain Man is, that Tom Cruise’s character only really cares about his brother when he’s, you know, monetarily valuable, you know?

SCHILLACE: Mmhmm.

GARCIA: So, and I mean, I think it also had a very, very narrow perspective. I mean, the movie ends with him being institutionalized and that being the humane thing, you know?

SCHILLACE: Right. Yeah. And I think that the spectrum nature of what it’s like to be autistic is, I have many friends who have autism who didn’t know they had autism. I didn’t know.

GARCIA: Yeah.

SCHILLACE: Again, I was unaware for a long time. I just thought, you know, I was like, well, I’m, I clearly look at things a little differently!

GARCIA: Yeah.

SCHILLACE: And I learned to think of it as a positive. I learned to think of myself and my way of approaching the world as a positive, as a superpower almost. But there’s many people for whom their experience is they’re told that their perspective on the world is not a superpower and is not positive.

GARCIA: Yeah! Yeah, they’re told that, you know, they’re told that they’re a burden or told that they’re the cause for a lot of sorrow for their parents or they’re the cause of a lot of grief for their parents. Or they’re told that they’re, that they’re, you know, they’re the reason for their parents’ divorce, which statistically it just isn’t true. And like, I think the denouement of the movie Rain Man, like if we could just go back to it a little bit, the reason why it’s so horrendous is not because Raymond being disabled is so bad. It’s the fact that we just, it’s the fact that as societally, we treat people we consider quote-unquote “severely disabled” or the people we consider disabled as the only thing we should do is institutionalize them.

SCHILLACE: Right.

GARCIA: Or that’s the compassionate, humane thing. So, if you’re told that’s your, if you’re told that you’re autistic and that’s your fate, then of course, you’re not gonna wanna accept this, you know.

SCHILLACE: Yeah.

GARCIA: ‘Cause like—

SCHILLACE: It so colors policy.

GARCIA: Yeah.

SCHILLACE: It doesn’t mean— Trust me. I am sure that there are people in politics, in policy right now who have autism, but who are not [inaudible].

GARCIA: Oh yeah! No, I have, I have a—

SCHILLACE: [laughs]

GARCIA: We’ll talk about this. Like, it’s not my job to armchair diagnose, but like, there are a few times—you know, I’m on Capitol Hill a lot of the time—and there are a few times where, like, when I turn off my recorder, I’m like, are they??? Mmmmm!

SCHILLACE: [laughs]

GARCIA: Maybe!

SCHILLACE: Maybe! Yeah. Honestly, part of my own diagnosis was a friend of mine who is autistic and who’d had the support that autistic people can receive if they have a diagnosis all through her life.

GARCIA: Yeah.

SCHILLACE: We sat down to lunch one day, and she said, “So, really. You know, I’m just curious. How do you feel about being blah blah blah in your career and autistic?” And I was like, “What? I’m not?”

GARCIA: [laughs] Yeah!

SCHILLACE: And she goes, “Oh! Oh, you are.”

GARCIA: [laughs] Yeah!

SCHILLACE: I was like, “Oh!”

GARCIA: Yeah!

SCHILLACE: “Well!”

GARCIA: Well! [laughs] Yeah. Well, like, that’s also kind of the thing is that it’s kind of like, it kind of reminds me of, you know, like, I grew up—and I still am, you know—I was raised in a very good, devout Christian household, very Protestant household, and my family had converted from Catholicism to Protestantism before I was born. And I’m still a Christian, a bad one at it. But like, it kind of reminds me of how the old days of autism, when it was only parents, or when it was only diagnosticians or clinicians could do it. It kind of reminds me of the Catholic Church that there was this priesthood that can only diagnose it.

SCHILLACE: [laughs]

GARCIA: But then I almost feel like autistics amongst ourselves, we’re kind of like Protestants.

SCHILLACE: [laughs]

GARCIA: Like, we could almost, [laughs] like  we can almost, we kind of have a sense of ourselves and a sense, you know, the idea of a sensus fidelium. Like, we can, like, we can diagnose ourselves, and we can recognize, and we can track in each other. ‘Cause like, what happened is like, one time I was hanging out with a friend of mine, and I was like, I was like, “Are you ADH—” ‘Cause she wasn’t autistic, but she was ADHD. And I was like, “Is she ADHD?” And then like, I was like, and then like, I said, I said, “Hey, are you ADHD?” And she’s like, “Yeah, I am. I’m diagnosed.” And I was like, I knew it, you know!

SCHILLACE: [laughs]

GARCIA: You know? You know, we do have this sense for it. And it’s like it reminds me of like, you know, to your point, it’s like one guy I interviewed in the book, his name is John Marble, and if you’ve read the book, you know, I just, I think John Marble’s just fantastic. But like, he was in denial for a long time. He didn’t think that he was autistic. And then finally, when he was spinning out at work and having a lot of the troubles that autistic people do in work, he was, you know, he was kind of in denial about it until Ari Ne’eman, who was, you know, the founder of the Autistic Self Advocacy Network, you know, took him to a coffee shop and then took him back to his office and saw, “See? You know, there’s a difference in the sensory processing.” So, like, we do, as a tribe, we do kind of have this understanding.

SCHILLACE: Mmhmm.

GARCIA: And that understanding can provide clarity a lot of the times.

SCHILLACE: Well, and I think, as with other disabilities, you know, there’s a real, oh, it’s very frustrating, where we talk a lot about disability rights here at Medical Humanities, the ways in which disabled people are not seen as full people is that somehow their lives are less.

GARCIA: Yeah.

SCHILLACE: Or because they’re non-quote-unquote “normative”—by the way, might even be a minority category to be normative—

GARCIA: Right.

SCHILLACE: —they’re seen as less and that their lives are not as full. That people are always surprised to find out like, that they’re in relationships or that they’re married or have children, and that shocks people, that they’re sexually active. “Oh, but you’re disabled!” Well, yeah. You know, I’m just a human being.

GARCIA: But yeah. Well, like, to that point about sexually active, like, the idea that autistic people can’t be sexual is so weird to me because some of the horniest people I know are autistic.

SCHILLACE: [laughs] Well, don’t you think it’s partly that idea people have as though autistic people are unemotional, or they don’t have—

GARCIA: Yeah, that they’re unfeeling or they’re unempathetic.

SCHILLACE: [laughing] Which is not true!

GARCIA: Which is just not true. Yeah. Like, I may, you know, autistic people may not be able to understand immediately that they made somebody feel something or feel a way, but they did, but once you recognize it, then you immediately connect with it. But like, I think even like, you know, even if you aren’t able to find work or get married or have kids or things like that, even if you do require around-the-clock 24/7 care, like, I will say this from the top of my lungs, you still deserve your humanity.

SCHILLACE: Mmhmm.

GARCIA: And like, one reason why so many parent bloggers bug me is that they feel that they almost have this right to talk about their kids in very graphic ways that you would never talk about your other children, because there’s almost this assumption that they’re never gonna read it. But like, that still hurts, and that still does— You know, even autistic people with intellectual disabilities or non-speaking autistic people or any of those types of people, they still can understand, and they still do. One thing that I’ve learned, you know, being a former kid and being an adult, is kids can track these things in how you view them and perceive them, and that does affect them. And even then, even if they don’t understand that they’re being broadcast to the world, they still are human beings. They still deserve their dignity. And they still, they deserve not to be exploited. You know, so.

SCHILLACE: Right. And well, their personhood. They are, their personhood.

GARCIA: Yeah.

SCHILLACE: They have their— And, you know, to go back to your point earlier about Disney World, about the measles outbreak, or Disneyland, the concept that being autistic is worse than potentially dying from measles is really upsetting! [laughs]

GARCIA: Yeah. Yeah, it is. Like, you know, there had been parents in the past who said that autism is worse than like, cancer or death or things like that. But you’re implicitly saying, when you’re an anti-vaxxer about autism, that you’d rather your kid gets sick from measles and die than be autistic.

SCHILLACE: Which is, it’s— And it also, it creates this impression that autism is a kind of blight, that disability itself is something—

GARCIA: Yeah, exactly.

SCHILLACE: —to be hidden away, to be denied, to be…. And again, I mean, I have been encouraged, you’re encouraged in your life, “Well, don’t tell people about this because you will not have the same opportunities.”

GARCIA: Yeah.

SCHILLACE: And we get to a place of accepting that when we shouldn’t accept that. We shouldn’t accept that we have to lie about disability in order to be accepted. You know, that’s, we’ve got to change that.

GARCIA: Right. Yeah. And it goes to like, you know, like, you know, it leads to this double-edged sword because on one end, like the only way we’re ever gonna get anybody to ever kind of accept autistic people is through increasing visibility and showing that we’re all affected by autism, whether you have a loved one who is or whether you are yourself, you have, you know somebody who’s autistic. But on the other end, it comes at a great price for that person.

So, one person I interviewed in the book, her name is Marcel Champy. She just said point blank that she’s always regretted disclosing that she was autistic in her workplaces because immediately, it leads to prejudgment or things like that. So, it’s one of those really tough things because like, I would never tell someone, and I still don’t tell anybody, like, you have to disclose, you know, for the cause, you know, like. You know, because like, that’s people’s livelihoods. And I don’t really know, I’ll say it, I don’t really know the right answer. Like, I don’t know what is the right solution to ensure that we can have acceptance, and we can show that autistic people can work in any sector if they want to and if they can. And, you know, the ones who don’t, you know, they should also be accepted as well. But like, on the other end, I don’t know how to, you know, I know that that comes at a great cost for the employee, you know?

SCHILLACE: Right. I feel that there’s a real connection to be made here—and you, in fact, make this connection in your book—between coming out as autistic and coming out as gender non-conforming as well. Because I think that there’s a similar sense. You have to decide if you’re gonna live, who you tell and what the consequences might be. And I think we are in a period where that’s being lauded like, yes, please do say who you are, come out as trans, or come out as these other non-conforming things. And that is wonderful, and we do celebrate it. But there are people for whom that is something that they fear to do, that it might be dangerous for them to do. And so, I think we have to honor that, too, that there’s two edges to this. And me personally being kind of I sort of have a foot in both camps a little bit and in neither. It’s liminal spaces are confusing. It’s hard to know how to navigate them.

GARCIA: Yeah, certainly. And I mean, like, I mean, you know, you know, look. I live, I’m a college-educated male who lives in a big city that’s, you know, that likes to see itself as open-minded and liberal. But, you know, there are a lot of people in smaller towns where autism may not be as understood or where there might not be as much information about it, in the same way like, you know, the same thing could be said for queer communities. Like, and I say this as a boring, straight, cishetero guy.

SCHILLACE: [chuckles]

GARCIA: Like, I understand. Like, you know, I understand why you wouldn’t want, I understand why my queer friends or my gay friends wouldn’t wanna come out in their home town, but they might be more comfortable saying who they are in a big city or in a better community in the same way I can understand why some people wouldn’t wanna disclose that they’re autistic, or they can’t, you know. And then, of course, you know, but like, you know, and then there are some people who just can’t, you know, mask that they’re autistic because they can’t speak, or they have, you know, and then they have, that leads to even more stigma.

SCHILLACE: Right.

GARCIA: They can’t, you know, they can’t even hide it. And they, and that opens them up to all different kinds of judgments and a lot of other things, you know, that aren’t, you know, that aren’t that positive, you know? You know, and a lot of other judgments. So, it’s, so, it’s really unfortunate.

SCHILLACE: The reality is we need to change our ability to, we need, the world needs to change, right?

GARCIA: Yeah.

SCHILLACE: We need to create more safe spaces rather than putting the onus on the person to make, you know. It shouldn’t always be on the head of the autistic person or the disabled person or whatever minority to do all the educating. It shouldn’t always be their job to have to educate everyone else. We need to get to a place where that education is happening and where those safe spaces are being created and expanded writ large.

GARCIA: Yeah. I mean, like, I think that one of the things, it’s almost like, you know, one of the things like, I think because I grew up in a really religious culture, like, I remember going to church, and when people would go up to the altar call for the first time to get saved or whatever, you would get like pamphlets, and you would get all these different things like, “Welcome to the church!” There’s nothing like that for when you join the autistic community, you know?

SCHILLACE: [laughs] Right. Yeah, there’s no parade, really.

GARCIA: Yeah, yeah. So, like, so, like, but it puts a lot on autistic people, you know, and it puts a lot on, it puts a lot on the community. And it puts a lot on the families and the loved ones to how to kind of navigate this and kind of advocate for. I mean, even the fact that when you go to an IEP, you’re often fighting in the school district to get that little scintilla of money because it’s never been fully funded, you know. You’re, it’s framed as you versus the school rather than the school just having those things ready, at the ready.

SCHILLACE: Right, right.

GARCIA: Same thing with employers. Same thing with, same thing with any space.

SCHILLACE: Yeah, I agree, and I think that— So, one of the, just to close up here today, I wanna talk a little bit about the title ‘cause I think this all comes down to this phrase, a really powerful phrase. The title is We’re Not Broken. And I just wanted to ask you, so, how did you arrive on that? Because I do feel like so much hinges on that idea.

GARCIA: I can’t take credit for that, actually.

SCHILLACE: [laughs]

GARCIA: When I was writing that original National Journal piece, Andy Koehler came up with the headline, I’m Not Broken, which was the name of the original piece. And then We’re Not Broken is that. But I think it goes to this fundamental idea that disabled people aren’t failed, and autistic people aren’t failed versions of normal. And I think that for so long, because there’s been so much misunderstanding about autism and any other type of neurodivergence, that there’s this feeling, that there’s this impulse to fix them.

SCHILLACE: Mmhmm.

GARCIA: And that’s what led to, that’s what leads to autistic people are still being, you know, there’s a place in Massachusetts, the Judge Rotenberg Center, that still shocks autistic people today, uses shock therapy on them. That’s the rationale for a lot of times putting people through ABA and forcing them to kind of conform, to act more like, one of the underlying things that ABA is to make autistic people act more like neurotypicals, you know.

SCHILLACE: Mmhmm.

GARCIA: And almost, a lot of the ways we approach autism are predicated or they hinge on making autistic people act more normal or neurotypical instead of helping them live more fulfilling lives and finding ways to make the world more amenable to them. And I think that’s what I, that’s what I wanna argue, is that even if you do that— And I think I wanna say this, and I wanna be very clear, so excuse this little tangent here. A lot of times when I say these things, autistic people, I mean, parents of autistic people think that I’m saying autism is all wonderful or that I’m erasing the real challenges that autistic people have or the real impairments. I’m the first person to say autism is a disability, just like deafness, just like blindness, just like using a wheelchair. And I don’t deny that they come with real challenges and real impairments. But let’s focus on those things. Let’s focus on the things that impair people. And let’s also focus on how do we, as a world, disable autistic people? Because if we didn’t have wheelchair ramps or curb cuts, being in a wheelchair would suck, you know?

SCHILLACE: [laughs] Yes.

GARCIA: And if we didn’t have Braille, you know, being blind would be much harder. And if we didn’t have ASL, being deaf would be much harder. But that’s not to say that there still aren’t challenges and difficulties with them, but we do work to make things better for them.

SCHILLACE: Right.

GARCIA: And I think that what I try to say is that just because you have significant challenges or just because you may need more support or you may need more aid or you may need 24-hour round-the-clock care, that doesn’t mean you yourself are a failed human being. It means that you just have a different operating system.

SCHILLACE: Yes. Yes. No, I think that’s, that is wonderful. And I like this way of talking about all people and our uniqueness is something that we’re a big fan here because, of course, we’re also very pro-LGBT here as well.

GARCIA: Yeah.

SCHILLACE: And, you know, I think it’s the concept that humans are persons; they’re not statistics. They’re not needing to be shunted away from the public. I mean, in a way, asking people to behave normative is, it’s sort of a version of institutionalizing them, right?

GARCIA: I hadn’t thought of it that way!

SCHILLACE: [laughs] But it’s almost—

GARCIA: But yeah, it is. It’s like—

SCHILLACE: —internalizing the institution.

GARCIA: You’re internalizing the, you’re being forced to conform and abide by the rules, just like you would in an institution in ways that restrict and limit your freedom. I hadn’t thought of that, thought of it that way. But wow!!!

SCHILLACE: [laughs]

GARCIA: Wow. Jesus, Brandy!

SCHILLACE: [laughs] Isn’t it also a way of erasing, too?

GARCIA: It is, it is, it is.

SCHILLACE: We wanna erase this: either take it out of our sight or dress you up in such a way that you don’t appear to be different. And I feel like that’s a real problem.

GARCIA: Yeah. Like, I mean, in the old days, in the old days, like, you know, parents were encouraged to remove photos of their kids, you know.

SCHILLACE: Yeah, and that’s horrifying.

GARCIA: It’s horrifying. It’s, yeah.

SCHILLACE: Representation. Representation is a big part of how we end up with accessibility, you know?

GARCIA: Yeah. And like, this is the argument I make for, like, you know, Home and Community-Based Services and care is that like, if you live in the community, if an autistic person, regardless of their support needs, lives in the community, then it no longer becomes something we can relegate to the shadows or something we can relegate to, you know, this person belongs in an institution. Then it becomes a social responsibility for everyone, and it becomes, you know, it’s no longer, this person’s a part of the community, and therefore they become a pillar of the community.

And what happens when you’re part of the community? Then the community changes so that you’re more, that things become easier for that person in the community. And then it becomes everybody’s social, you know, just like how in my community, I’m socially obligated to my neighbors. You become socially obligated to the autistic person, and they become socially obligated to the rest of the community. So, it becomes this mutually reinforcing thing. So, that’s the argument that I make a lot of times, is that when you do that, it becomes everybody’s responsibility. And I think that’s much, that’s a much better way of looking at disability than it is, than, you know, sending someone away to an institution.

SCHILLACE: Right. I will just mention here Alice Wong, who comes on our podcast periodically, she has the Disability Visibility Project.

GARCIA: I love Alice so much.

SCHILLACE: She is so great, isn’t she? [laughs]

GARCIA: Yeah. Yeah.

SCHILLACE: So, yes. OK, well, this was wonderful. I know we have to sign off though. I feel like we could go on talking.

GARCIA: Oh, we could go on for hours.

SCHILLACE: [chuckles] But thank you to all of our listeners. This has been a fabulous conversation. Speaking of accessibility, the transcripts are always available on our blog, which will attend the podcast link, which can be found on SoundCloud. Thank you once again for joining Medical Humanities. Thank you, Eric, also, for being part of our show today.

GARCIA: Thank you very much for having me.

SCHILLACE: And thank you to all for being part of the conversation.

(Visited 316 times, 1 visits today)