We’re Not Broken: Eric Garcia on Changing the Autism Conversation ~ 901

Tim Villegas:
Eric Garcia, author of We’re Not Broken: Changing the Autism Conversation, wants you to know something about autistic people.

Eric Garcia:
Autistic people are fine just the way we are. Do we have challenges? Yes, just like every other human being does, and we should work to address those problems. But we’re not failed versions of normal. And I think what needs to happen is that, the reason why I say “changing the autism conversation,” it needs to change so that autistic people are included in that conversation.

Tim Villegas:
And he’s adamant about letting autistic people be who they want to be.

Eric Garcia:
The world is cruel to a lot of disabled people, particularly autistic people. Otherwise I wouldn’t have written this book if I thought the world was nice to them. But you can’t restrict people’s freedoms or their ability to have their own dignity in the name of security.

Tim Villegas:
Hey, y’all, my name is Tim Villegas, and you are listening to the Think Inclusive Podcast presented by MCIE. This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us or on the socials: Facebook, Instagram, or Twitter. Today on the podcast, we interview Eric Garcia about his new book and talk about the biggest misconceptions of autism, why simply existing is not inspirational, and what his dream for the future of a more inclusive world looks like. Thank you so much for listening. And now our interview with Eric Garcia.

Tim Villegas:
So today on the podcast, I’d like to welcome Eric Garcia, who is a journalist and author of We’re Not Broken: Changing the Autism Conversation. He previously worked at the Washington Post, the Hill, Roll Call, National Journal, and Market Watch. His writing has been featured in the New Republic, the Daily Beast, the American Prospect, and salon.com. Welcome to the Think Inclusive podcast, Eric.

Eric Garcia:
Thank you very much.

Tim Villegas:
What are some of the biggest misconceptions of being autistic?

Eric Garcia:
How much time do we have? I think the biggest misconception… Autism has been subjected to so many misconceptions throughout its very, very long history in the public eye. In the beginning, it was often seen as something that was caused by unloving parents. And even before that, it was seen as a symptom of schizophrenia. It didn’t get its own separate diagnosis in the Diagnostic and Statistical Manual of Mental Disorders until 1980. Up until then, it was under the diagnosis of schizophrenia. Over time, there’s been the misconception that vaccines cause autism, which is not true. Then there’s been this idea that it affects only upper-class white people, which is a misconception. Then there was the misconception that it only affects boys more than girls. Then there’s the misconception that autistic people are unable to work, or that they all work in Silicon Valley. So it’s been misconception after misconception. Misconception is kind of the story of autism in many ways.

Tim Villegas:
So in the book you say, “To be inspirational means to be exceptional and somehow extraordinary, but to be successful because of supports and accommodation is to universalize our success.” Can you expound on that?

Eric Garcia:
I really hate—I’m sure you see these stories of “autistic person graduates from high school or college”—and it’s supposed to be a really inspirational or feel-good story. And I really hate that because it’s like, well, why is that inspirational? It’s inspirational because it’s exceptional, because it’s out of the ordinary. That’s why it’s a news story. My feeling is that those stories aren’t inspirational to autistic people. They’re meant to inspire neurotypical people. I would really love it if autistic people could be average. We should make graduating from college the ordinary instead of out of the ordinary. If you universalize things, that might not make neurotypical people feel good, but it’ll improve autistic people’s lives. And frankly, I don’t care if you feel good if you’re a neurotypical person. My life isn’t meant to make you feel inspired.

I’m sorry, you know, I write about it in the book. When I got a job, I say specifically, “This is the point where you might think that I get a happy ending.” I’m sorry, there’s no such thing as a happy ending. Nobody’s entitled to a happy ending except the person themselves living that life. And even then, you’re not entitled to a happy ending. Life is cruel and it sucks—deal with it. But I think it’s important to say that if we give the right supports to autistic students, then more will graduate. Then it’s no longer inspirational. Then that’s a universal thing that can happen and it’s a possibility.

Tim Villegas:
Right. So what do you think is the barrier then? Is it just a matter of mindset, like people just haven’t thought about giving the supports, or is there something more systemic?

Eric Garcia:
I think so. I talk about it a little bit in the book. I would have liked to have done more in the book, but for example, the Americans with Disabilities Act didn’t mention autism in its original 1990 version. It was added later in the ADA Amendments Act, once regulations were put in place. Autism is included in the Individuals with Disabilities Education Act as a disability that’s covered, but you have to remember that was a reauthorization of the 1976 Education for Handicapped Children Act. So a lot of the things about autism that get recognized are grafted into pre-existing policies. That’s a good thing because it means we’re including autistic people more in society. But it also means we’re shoehorning autism into policies that weren’t built with autistic people in mind. It’s a paradox. On one hand, you want to include them in larger society, but you also want to make sure we’re not forcing them into frameworks that don’t fit. I didn’t even try to answer that question in the book.

Tim Villegas:
Do you have any thoughts about what needs to happen to IDEA?

Eric Garcia:
First of all, the federal government needs to actually live up to its commitment. I believe—though you probably know this better than I do—the federal government is supposed to pay about 40% of the cost. It’s only ever paid around 14.67%, I think. Don’t quote me on that exact number, but it’s not what it’s supposed to be. Almost every Democratic presidential candidate in the 2020 primary promised they would fully fund IDEA or increase the amount of money promised. The real difficulty is that the federal government isn’t giving the money needed to properly administer IDEA. On top of that, is the promised money even enough? The delivery of services depends on that. And most states have to balance their budgets by law, which makes it hard for states and localities to live up to their promises. If you don’t have a good attorney, you’re basically doomed.

Tim Villegas:
Real talk from Eric Garcia.

Eric Garcia:
I’m saying the things your listeners probably already know.

Tim Villegas:
Yeah, yeah. Well, let’s talk about… In the book you talk about parents advocating for workshops. Are these the same parents and families who are saying, “We want our kids in a separate, special education classroom”?

Eric Garcia:
They probably are. I should say I didn’t look into that in my book. I probably should have. But I think it’s entirely possible. Sheltered workshops and segregated work were seen as the right thing to do for a long time. It was thought that disabled people couldn’t hold a job. Now we recognize that disabled people can work full-time and deserve a decent living wage. And I should note that a lot of people on the front lines of ending sub-minimum wage are Republicans—Cathy McMorris Rodgers, Governor Greg Abbott in Texas.

Eric Garcia:
Parents may feel like there’s a support system around segregated workshops—transportation, supports, respite for caregivers. But those things could come with integrated work. We just never thought of them that way. Parents are often afraid of the unknown because the world can be cruel. Some people might think I’m being unempathetic to parents in this book, but I understand why they’re afraid. The world is cruel to disabled people, especially autistic people.

Eric Garcia:
Otherwise, I wouldn’t have written this book. But you can’t restrict people’s freedoms or their dignity in the name of security. That’s what you do when you pay people below minimum wage or segregate them from coworkers. You’re saying they aren’t entitled to work with others or earn the fruits of their labor. A lot of these jobs are very menial. I talked with Maxfield Sparrow, and they were cutting felts for puzzle floor things. Not to say that all work doesn’t have dignity, but it assumes disabled people can only do the lowest of low labor. It’s providing indignity and doesn’t give them their due.

Tim Villegas:
What do you think we can do as a country to improve healthcare—not just for autistic people, but for everyone?

Eric Garcia:
One doctor told me that they couldn’t think of a worse place for an autistic person than an emergency room. Because autism was medicalized for a long time, doctors often think they’re helping autistic people by trying to kill the symptoms of autism or autistic traits, instead of treating the actual issues autistic people are dealing with. Doctors need to listen to autistic people and their needs, rather than trying to treat what people don’t want treated. They need to recognize that disability is not the same as illness and that disabled people’s needs are valid.

I interviewed Lydia Wayman, and she said doctors thought she was faking being sick. Doctors need to take what autistic people say at face value. That’s really important. You deserve to have doctors listen to you.

Also, there needs to be more research into what is actually killing autistic people. Autistic people with intellectual disabilities are much more likely to die of epilepsy. Autistic people without intellectual disabilities—the two biggest killers are heart disease and suicide. Those are pretty big crises that need to be addressed.

Tim Villegas:
Eric, can you tell us more about what you mean by the fate of autistic and LGBTQ people being intertwined?

Eric Garcia:
Yeah, that’s really important. One of the things I noticed when I started writing and researching about autism was how many autistic people I met were queer—lesbian, gay, bisexual, transgender, gender non-binary, or something in that sphere. What I realized is that a lot of them aren’t taken seriously because they’re autistic. So if they want to transition, people might say, “You don’t know what’s good for you.” That’s basically the argument J.K. Rowling makes when it comes to trans men being tricked into transitioning, which is really gross.

Also, Ivar Lovaas, who was the father of applied behavior analysis at UCLA, was the same person who worked on and advised the UCLA Feminine Boy Project. That project served as the template for what we now know as conversion therapy. It used a lot of the same conditioning and aversive techniques. So those two things—ABA and conversion therapy—share DNA and the same impulse.

Even though I’m cisgender and heterosexual, I have to recognize that the same impulse that wants to stop me from stimming is often the same impulse that doesn’t want gay men to have a lump breast, or wants lesbians to wear dresses, or wants trans men to be women, or trans women to present as men, or forces non-binary people to conform to one gender or another. The core message is that you can only be loved if you fit into these prescribed norms that weren’t built with you in mind.

Eric Garcia:
So if you are queer—and I’m using “queer” to include everything, because that’s what a lot of my LGBTQ+ friends say—then queerness and autism, choosing those things and choosing to be your most authentic self, are in many ways acts of defiance against what people want you to do. But they’re also acts of self-acceptance. You’re saying, “I am who I am, and I’m deserving and worthy of love as I am.” That’s the most important thing I would say. And there are plenty of LGBTQ+ autistic people.

Tim Villegas:
I want to go back to an earlier question I had that we kind of skipped over—about the terms “high” and “low” functioning.” I’m wondering, why are those terms problematic?

Eric Garcia:
I wouldn’t say they’re problematic as much as I’d say they don’t accurately describe what’s going on. I’m a journalist. My job is to describe the world as it is with words. The terms “high functioning” and “low functioning” don’t accurately depict what autistic people can and can’t do.

A lot of people say to me, “It’s easy for you to say because you’re high functioning.” But I have trouble taking out the trash. I have trouble remembering things. I have trouble cleaning my place. I have a lot of difficulties. That kind of flattens my experience.

In the same respect, people considered “low functioning”—those with intellectual disabilities or who don’t speak—are seen as incapable. That flattens their experiences and diminishes what they can do. It prescribes what they can do based on neurotypical standards. But look at the Interagency Autism Coordinating Committee. They have members with intellectual disabilities and nonspeaking members like Ivanova Smith and Hari Srinivasan. They must be functioning pretty well to be on a government committee.

We flatten their experiences when we use terms like “low functioning.” I prefer terms like “higher support needs” or “lower support needs” because they focus on what people need to navigate the world. It’s more responsive to them than to our perceptions of them. I like those terms better.

Tim Villegas:
Thank you for that clarification. So as we look to the future, what is your dream for autistic people and how do we get there?

Eric Garcia:
Well, I’m on Capitol Hill right now. I’m literally calling you from the phone closet on the Hill, where they’re debating President Biden’s proposed $400 million on home and community-based services. That would be a massive boon to autistic people—to allow them to live in their communities, live with their families, and be seen as vital members of the community. Not just live in the community, but be seen as members of it.

The other thing I’d really like to see is autistic people being included in anything. Anytime there’s a discussion about autistic people, they should be included.

Tim Villegas:
So this is just for fun. Oh, I know what I wanted to say—your book. Okay, so the book that you wrote, your titles are song titles.

Eric Garcia:
Yeah!

Tim Villegas:
And then in the body of your chapters, you have subtitles that are lyrics.

Eric Garcia:
Yeah.

Tim Villegas:
So as a segue into the last question—we know you love music. Do you have a running list of your top five albums?

Eric Garcia:
It changes all the time. I would say my top five favorite albums of all time—yeah, you’re really putting me on the spot. I’m gonna say Highway to Hell has to be on there. Then Electric Ladyland by Jimi Hendrix is definitely on there. I go back to it all the time, and it was a big part of writing this book. Kind of Blue by Miles Davis is definitely on there. I’d probably put on something else… When I was on deadline, very few things helped, but Straight Outta Compton by NWA—you’re from Southern California, so you know.

Tim Villegas:
Yes, I do.

Eric Garcia:
And then afterward, I think I’d put on—it’s a toss-up right now between Master of Puppets by Metallica or Paranoid by Black Sabbath. It’s one of those two. That’s usually my top five, and the fifth one alternates a lot.

Tim Villegas:
All right. Is there anything else that you wanted us to ask?

Eric Garcia:
Not really. I think the thing I’d just like to say is that autistic people are fine just the way we are. Do we have challenges? Yes, just like every other human being does, and we should work to address those problems. But we’re not failed versions of normal. The reason why I say “changing the autism conversation” is because it needs to change so that autistic people are included in that conversation. That’s the simplest answer I can give—autistic people need to be included.

Eric Garcia:
One of the things I write about at the end of the book is that you’re seeing autistic people being included more in presidential campaigns, working in Congress, getting elected to office, acting, and working in different sectors of the business community. They’re going to change things and make things better than I ever could. Hopefully, they move things forward in a way that I couldn’t. So I’m very hopeful. I don’t want to say I’m very optimistic—when I was writing the proposal, it was done on the premise that I thought things were improving. I started writing it in 2016 when Hillary Clinton put out her policy proposal on autism, and then Donald Trump got elected. So you got the first presidential policy on autism, and then you got an anti-vaxxer elected as president. That should have been a harbinger of how he would handle a pandemic.

So I don’t want to say I’m optimistic—I’m usually Mr. Doom and Gloom, that’s just who I am. You can ask any of my friends. But what I am is hopeful. If I’m not hopeful for humanity at large, I’m hopeful for the autistic community. That’s what I’m hopeful for.

Tim Villegas:
Eric Garcia, really appreciate your time on the Think Inclusive podcast. Is there a place people can buy your book or follow you on social media?

Eric Garcia:
You can follow me because I tweet way too much about politics and everything else https://twitter.com/EricMGarcia. You can buy my book We’re Not Broken: Changing the Autism Conversation wherever books are sold. You can always DM or message me. I’ll gladly be a guest on your podcast. Also, I’m the senior DC correspondent for The Independent. So follow me—even though I’m not British, I ended up being a senior correspondent for a British newspaper. So yeah, that’s also what I do.

Tim Villegas:
Eric Garcia, thank you so much for your time.

Eric Garcia:
Thank you.

Tim Villegas:
That will do it for this episode of the Think Inclusive podcast. Subscribe via Apple Podcasts, the Anchor app, Spotify, or wherever you listen to podcasts. Have a question or comment? Email us at podcast@thinkinclusive.us. We love to know that you’re listening.

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This podcast is a production of MCIE, where we envision a society where neighborhood schools welcome all learners and create the foundation for inclusive communities. Learn more at https://www.mcie.org/.

We’ll be back in a couple of weeks to talk with Genia Stephen, host of the podcast The Good Things In Life.

Genia Stephen:
All kids being educated together. Not just being placed together, but with real attention to all of the isms—real attention paid to ableism and racism—so that kids aren’t just placed in a physical space together, but are truly educated together as a community.

Tim Villegas:
Thanks for your time and attention. Until next time, remember: inclusion always works.