{"id":3196,"date":"2021-11-05T10:00:39","date_gmt":"2021-11-05T09:00:39","guid":{"rendered":"https:\/\/blogs.bmj.com\/medical-humanities\/?p=3196"},"modified":"2021-11-05T10:22:54","modified_gmt":"2021-11-05T09:22:54","slug":"eric-garcia","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/medical-humanities\/2021\/11\/05\/eric-garcia\/","title":{"rendered":"We\u2019re Not Broken: Changing the Conversation around Autism with Eric Garcia"},"content":{"rendered":"<p><strong>Podcast with Eric Garcia by Brandy Schillace<\/strong><\/p>\n<p><em>&#8220;We&#8217;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&#8217;s book will inspire generations of people on the spectrum to realize their fullest potential.&#8221;<\/em><\/p>\n<p><strong>\u2014Steve Silberman, New York Timesbest-selling author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity<\/strong><\/p>\n<style type=\"text\/css\">\r\n       .errordiv { padding:10px; margin:10px; border: 1px solid #555555;color: #000000;background-color: #f8f8f8; width:500px; }#advanced_iframe {visibility:visible;opacity:1;}#ai-layer-div-advanced_iframe p {height:100%;margin:0;padding:0}<\/style><script type=\"text\/javascript\">  var ai_iframe_width_advanced_iframe = 0;  var ai_iframe_height_advanced_iframe = 0;var aiIsIe8=false;var aiOnloadScrollTop=\"true\";\r\nif (typeof aiReadyCallbacks === 'undefined') {\r\n    var aiReadyCallbacks = [];  \r\n} else if (!(aiReadyCallbacks instanceof Array)) {\r\n    var aiReadyCallbacks = [];\r\n}    function aiShowIframeId(id_iframe) { jQuery(\"#\"+id_iframe).css(\"visibility\", \"visible\");    }    function aiResizeIframeHeight(height) { aiResizeIframeHeight(height,advanced_iframe); }    function aiResizeIframeHeightId(height,width,id) {aiResizeIframeHeightById(id,height);}<\/script><iframe loading=\"lazy\" id=\"advanced_iframe\"  name=\"advanced_iframe\"  src=\"https:\/\/w.soundcloud.com\/player\/?url=https%3A\/\/api.soundcloud.com\/tracks\/1153214323&amp;color=%23ff5500&amp;auto_play=false&amp;hide_related=false&amp;show_comments=true&amp;show_user=true&amp;show_reposts=false&amp;show_teaser=true\"  width=\"560\"  height=\"315\"  frameborder=\"0\"  border=\"0\"  allowtransparency=\"true\"  allow=\"accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture\"  style=\";width:560;height:315;\" ><\/iframe><script type=\"text\/javascript\">var ifrm_advanced_iframe = document.getElementById(\"advanced_iframe\");var hiddenTabsDoneadvanced_iframe = false;\r\nfunction resizeCallbackadvanced_iframe() {}function aiChangeUrl(loc) {}<\/script>\n<p>&nbsp;<\/p>\n<p>Join us on this episode of the Medical Humanities Podcast as Brandy Schillace speaks with Eric Garcia, author of <strong>WE\u2019RE NOT BROKEN: Changing the Autism Conversation (Houghton Mifflin Harcourt, August 3, 2021)<\/strong>. With a reporter\u2019s eye and an insider\u2019s perspective, Garcia chronicles the state of autism in America. Part manifesto, part memoir, and part reported essay, WE\u2019RE 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 \u2014from dating apps to workplaces to Congress \u2014and deserve to have a say in the policies and structures shaping their lives.<\/p>\n<p>&nbsp;<\/p>\n<figure id=\"attachment_3197\" aria-describedby=\"caption-attachment-3197\" style=\"width: 268px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-3197 size-medium\" src=\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/11\/Garcia-Eria-Podcast-Pic-scaled-e1634892386625-268x300.jpg\" alt=\"Eric Gardia Portrait\" width=\"268\" height=\"300\" srcset=\"https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/11\/Garcia-Eria-Podcast-Pic-scaled-e1634892386625-268x300.jpg 268w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/11\/Garcia-Eria-Podcast-Pic-scaled-e1634892386625-768x859.jpg 768w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/11\/Garcia-Eria-Podcast-Pic-scaled-e1634892386625-640x716.jpg 640w, https:\/\/blogs.bmj.com\/medical-humanities\/files\/2021\/11\/Garcia-Eria-Podcast-Pic-scaled-e1634892386625.jpg 1305w\" sizes=\"auto, (max-width: 268px) 100vw, 268px\" \/><figcaption id=\"caption-attachment-3197\" class=\"wp-caption-text\">\u00a9Kristin Herbruck<\/figcaption><\/figure>\n<p><em><strong>ERIC GARCIA <\/strong>is the senior Washington correspondent for <\/em>The Independent<em>. Previously, he was an assistant editor at the <\/em>Washington Post<em>&#8216;s Outlook section and an associate editor at <\/em>The Hill <em>and a correspondent for <\/em>National Journal<em>, <\/em>MarketWatch<em> and <\/em>Roll Call<em>. He has also written for the <\/em>Daily Beast<em>, the <\/em>New Republic<em>, 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\u2019re Wrong About and his recent piece on NBC News THINK.<\/em><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<h3><\/h3>\n<h3><\/h3>\n<h3><\/h3>\n<h3><strong>Transcript<\/strong><\/h3>\n<p>BRANDY SCHILLACE: Hello and welcome back to the <em>Medical Humanities Podcast<\/em>. This is Dr. Brandy Schillace, Editor in Chief. And today, I\u2019m really excited to have with me Eric Garcia. He\u2019s a Washington D.C.-based journalist who\u2019s focused on politics and policy and is currently the senior Washington correspondent for <em>The Independent<\/em>. His first book has just come out on August 3rd, <em>We\u2019re Not Broken: Changing the Autism Conversation<\/em>. I\u2019m really excited. I\u2019ve actually read it myself. Eric, welcome and thank you for joining us.<\/p>\n<p>ERIC GARCIA: Thank you for having me, Brandy.<\/p>\n<p>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.<\/p>\n<p>GARCIA: Well, I mean, I\u2019m autistic, so I guess I was born.<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: As my friend John Marble likes to say! But I think the other thing that happened was I didn\u2019t want to, in my career, I didn\u2019t really wanna be somebody who wrote about autism for a long time. I worked at <em>MarketWatch<\/em>. I worked at <em>National Journal<\/em>. 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.<\/p>\n<p>What happened was I think that&#8230;. 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, \u201cOh, I don\u2019t drink \u2018cause I\u2019m on the autism spectrum.\u201d And he said, \u201cOh, there\u2019s a lot of autistic people here.\u201d And a medicine I take doesn\u2019t mix with alcohol. It\u2019s like, \u201cOh, there\u2019s a lot of autistic people in Washington, D.C.\u201d And I was like, \u201cAh, I hadn\u2019t thought of that.\u201d He\u2019s like, \u201cYou should write something about that.\u201d 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\u2019ll do that.<\/p>\n<p>Then what happened was I was at <em>National Journal<\/em>, 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, \u201cWell, why should this exist?\u201d And I said, kind of, \u201cWell, I think we focus too much on trying to cure autism and not enough on trying to help autistic people live fulfilling lives.\u201d<\/p>\n<p>SCHILLACE: Mm.<\/p>\n<p>GARCIA: Now, if you remember, this is in 2015.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>GARCIA: So, if you remember in the beginning of 2015, there was that measles outbreak at Disneyland.<\/p>\n<p>SCHILLACE: Oh, yes! Yes.<\/p>\n<p>GARCIA: And it\u2019s because pare-, you know, a bunch of hippie parents wouldn\u2019t vaccinate their damn kids, you know?<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>GARCIA: \u2018Cause, \u2018cause they\u2019re afraid of, they\u2019re afraid of, you know, their kids getting autism.<\/p>\n<p>SCHILLACE: From the vaccine.<\/p>\n<p>GARCIA: And then the se\u2014 Yeah, from the vaccine, which is just not true, you know?<\/p>\n<p>SCHILLACE: No, not at all. [laughs]<\/p>\n<p>GARCIA: You know? And then what happened after is that, you know, I\u2019m a political reporter. And then, you know, the next thing that I know is Donald Trump decides to run for president.<\/p>\n<p>SCHILLACE: Yeah.<\/p>\n<p>GARCIA: And, you know, he says on the debate stage that autism has become an epidemic.<\/p>\n<p>SCHILLACE: Oh, god.<\/p>\n<p>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?<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>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\u2019ve had a lot of bad information about autism.<\/p>\n<p>SCHILLACE: Right! [laughs]<\/p>\n<p>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\u2014 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.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>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\u2019m just gonna close that. I mean, so, what I decided to do is I just decided to hit the road.<\/p>\n<p>SCHILLACE: OK, yeah.<\/p>\n<p>GARCIA: I decided to travel across the country to see what\u2019s it like to be autistic across America?<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>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?<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>GARCIA: What are the challenges that autistic people face? And what are we not doing, and what can we do to improve people\u2019s lives?<\/p>\n<p>SCHILLACE: Yes. Yes, and I think that\u2019s, 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\u2019s a way forward, that there\u2019s some, that there\u2019s ways to improve, improve access, improve understanding. That there\u2019s ways forward is just as important.<\/p>\n<p>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\u2019m 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\u2019ve written a piece, you know, written a book about, you know, just more of a straight memoir-ish kinda thing, you know?<\/p>\n<p>SCHILLACE: Sure.<\/p>\n<p>GARCIA: You know, maybe I would\u2019ve sold more copies of the book, you know. Maybe I would\u2019ve, you know. But my feeling was, my story is just my story, and I\u2019m 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\u2019t able to succeed and didn\u2019t have the same resources I did? I mean, what happened when they didn\u2019t have the same resources as I did, the same resources I did? I\u2019m sorry.<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: And what happens when that\u2019s the case? \u2018Cause 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?<\/p>\n<p>SCHILLACE: [delighted chuckle]<\/p>\n<p>GARCIA: Like, I thought, I think that they\u2019re 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\u2019t necessarily&#8230;. 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?<\/p>\n<p>SCHILLACE: Right, right.<\/p>\n<p>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?<\/p>\n<p>SCHILLACE: Yeah. No, I get that completely. Well, partly. I mean, full disclosure, I am myself, I\u2019m undiagnosed because I didn\u2019t realize until I was an adult, but I actually am also autistic.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: And as a child being told so often, right, that I was to not be weird. \u201cDon\u2019t be weird.\u201d<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: \u201cYou know you\u2019re weird to people.\u201d And my only frame of reference for autism was <em>Rain Man<\/em>, movies.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: And so, of course, my parents, I watched that. And if you\u2019re told that\u2019s, if you yourself, even an autistic person are told that\u2019s autism, of course you\u2019re gonna think, well, that\u2019s not what I have. I don\u2019t wanna tell the world about that. You know, I don\u2019t wanna identify with that because the representation is so poor.<\/p>\n<p>GARCIA: Yeah, exactly. Yeah, like I mean, yeah, like well, like I\u2019ve talked about, I\u2019ve spent a lot of time dragging <em>Rain Man<\/em>, so I don\u2019t wanna&#8230;.<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: And, you know, like, but like, my general beef with it is this idea that, my general beef with the movie <em>Rain Man<\/em> is we don\u2019t really get much of Raymond\u2019s inner world or how he feels or thinks. It\u2019s almost entirely through Tom Cruise\u2019s lens.<\/p>\n<p>SCHILLACE: Right! [laughs]<\/p>\n<p>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 <em>Rain Man<\/em> is, that Tom Cruise\u2019s character only really cares about his brother when he\u2019s, you know, monetarily valuable, you know?<\/p>\n<p>SCHILLACE: Mmhmm.<\/p>\n<p>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?<\/p>\n<p>SCHILLACE: Right. Yeah. And I think that the spectrum nature of what it\u2019s like to be autistic is, I have many friends who have autism who didn\u2019t know they had autism. I didn\u2019t know.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: Again, I was unaware for a long time. I just thought, you know, I was like, well, I\u2019m, I clearly look at things a little differently!<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>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\u2019s many people for whom their experience is they\u2019re told that their perspective on the world is not a superpower and is not positive.<\/p>\n<p>GARCIA: Yeah! Yeah, they\u2019re told that, you know, they\u2019re told that they\u2019re a burden or told that they\u2019re the cause for a lot of sorrow for their parents or they\u2019re the cause of a lot of grief for their parents. Or they\u2019re told that they\u2019re, that they\u2019re, you know, they\u2019re the reason for their parents\u2019 divorce, which statistically it just isn\u2019t true. And like, I think the denouement of the movie <em>Rain Man<\/em>, like if we could just go back to it a little bit, the reason why it\u2019s so horrendous is not because Raymond being disabled is so bad. It\u2019s the fact that we just, it\u2019s the fact that as societally, we treat people we consider quote-unquote \u201cseverely disabled\u201d or the people we consider disabled as the only thing we should do is institutionalize them.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>GARCIA: Or that\u2019s the compassionate, humane thing. So, if you\u2019re told that\u2019s your, if you\u2019re told that you\u2019re autistic and that\u2019s your fate, then of course, you\u2019re not gonna wanna accept this, you know.<\/p>\n<p>SCHILLACE: Yeah.<\/p>\n<p>GARCIA: \u2018Cause like\u2014<\/p>\n<p>SCHILLACE: It so colors policy.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: It doesn\u2019t mean\u2014 Trust me. I am sure that there are people in politics, in policy right now who have autism, but who are not [inaudible].<\/p>\n<p>GARCIA: Oh yeah! No, I have, I have a\u2014<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: We\u2019ll talk about this. Like, it\u2019s not my job to armchair diagnose, but like, there are a few times\u2014you know, I\u2019m on Capitol Hill a lot of the time\u2014and there are a few times where, like, when I turn off my recorder, I\u2019m like, are they??? Mmmmm!<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: Maybe!<\/p>\n<p>SCHILLACE: Maybe! Yeah. Honestly, part of my own diagnosis was a friend of mine who is autistic and who\u2019d had the support that autistic people can receive if they have a diagnosis all through her life.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: We sat down to lunch one day, and she said, \u201cSo, really. You know, I\u2019m just curious. How do you feel about being blah blah blah in your career and autistic?\u201d And I was like, \u201cWhat? I\u2019m not?\u201d<\/p>\n<p>GARCIA: [laughs] Yeah!<\/p>\n<p>SCHILLACE: And she goes, \u201cOh! Oh, you are.\u201d<\/p>\n<p>GARCIA: [laughs] Yeah!<\/p>\n<p>SCHILLACE: I was like, \u201cOh!\u201d<\/p>\n<p>GARCIA: Yeah!<\/p>\n<p>SCHILLACE: \u201cWell!\u201d<\/p>\n<p>GARCIA: Well! [laughs] Yeah. Well, like, that\u2019s also kind of the thing is that it\u2019s kind of like, it kind of reminds me of, you know, like, I grew up\u2014and I still am, you know\u2014I 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\u2019m 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.<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: But then I almost feel like autistics amongst ourselves, we\u2019re kind of like Protestants.<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: Like, we could almost, [laughs] like \u00a0we 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. \u2018Cause like, what happened is like, one time I was hanging out with a friend of mine, and I was like, I was like, \u201cAre you ADH\u2014\u201d \u2018Cause she wasn\u2019t autistic, but she was ADHD. And I was like, \u201cIs she ADHD?\u201d And then like, I was like, and then like, I said, I said, \u201cHey, are you ADHD?\u201d And she\u2019s like, \u201cYeah, I am. I\u2019m diagnosed.\u201d And I was like, I knew it, you know!<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: You know? You know, we do have this sense for it. And it\u2019s like it reminds me of like, you know, to your point, it\u2019s like one guy I interviewed in the book, his name is John Marble, and if you\u2019ve read the book, you know, I just, I think John Marble\u2019s just fantastic. But like, he was in denial for a long time. He didn\u2019t 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\u2019eman, 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, \u201cSee? You know, there\u2019s a difference in the sensory processing.\u201d So, like, we do, as a tribe, we do kind of have this understanding.<\/p>\n<p>SCHILLACE: Mmhmm.<\/p>\n<p>GARCIA: And that understanding can provide clarity a lot of the times.<\/p>\n<p>SCHILLACE: Well, and I think, as with other disabilities, you know, there\u2019s a real, oh, it\u2019s very frustrating, where we talk a lot about disability rights here at <em>Medical Humanities<\/em>, the ways in which disabled people are not seen as full people is that somehow their lives are less.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: Or because they\u2019re non-quote-unquote \u201cnormative\u201d\u2014by the way, might even be a minority category to be normative\u2014<\/p>\n<p>GARCIA: Right.<\/p>\n<p>SCHILLACE: \u2014they\u2019re seen as less and that their lives are not as full. That people are always surprised to find out like, that they\u2019re in relationships or that they\u2019re married or have children, and that shocks people, that they\u2019re sexually active. \u201cOh, but you\u2019re disabled!\u201d Well, yeah. You know, I\u2019m just a human being.<\/p>\n<p>GARCIA: But yeah. Well, like, to that point about sexually active, like, the idea that autistic people can\u2019t be sexual is so weird to me because some of the horniest people I know are autistic.<\/p>\n<p>SCHILLACE: [laughs] Well, don\u2019t you think it\u2019s partly that idea people have as though autistic people are unemotional, or they don\u2019t have\u2014<\/p>\n<p>GARCIA: Yeah, that they\u2019re unfeeling or they\u2019re unempathetic.<\/p>\n<p>SCHILLACE: [laughing] Which is not true!<\/p>\n<p>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\u2019t 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.<\/p>\n<p>SCHILLACE: Mmhmm.<\/p>\n<p>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\u2019s almost this assumption that they\u2019re never gonna read it. But like, that still hurts, and that still does\u2014 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\u2019ve 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\u2019t understand that they\u2019re 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.<\/p>\n<p>SCHILLACE: Right. And well, their personhood. They are, their personhood.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: They have their\u2014 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]<\/p>\n<p>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\u2019re implicitly saying, when you\u2019re an anti-vaxxer about autism, that you\u2019d rather your kid gets sick from measles and die than be autistic.<\/p>\n<p>SCHILLACE: Which is, it\u2019s\u2014 And it also, it creates this impression that autism is a kind of blight, that disability itself is something\u2014<\/p>\n<p>GARCIA: Yeah, exactly.<\/p>\n<p>SCHILLACE: \u2014to be hidden away, to be denied, to be&#8230;. And again, I mean, I have been encouraged, you\u2019re encouraged in your life, \u201cWell, don\u2019t tell people about this because you will not have the same opportunities.\u201d<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: And we get to a place of accepting that when we shouldn\u2019t accept that. We shouldn\u2019t accept that we have to lie about disability in order to be accepted. You know, that\u2019s, we\u2019ve got to change that.<\/p>\n<p>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\u2019re ever gonna get anybody to ever kind of accept autistic people is through increasing visibility and showing that we\u2019re all affected by autism, whether you have a loved one who is or whether you are yourself, you have, you know somebody who\u2019s autistic. But on the other end, it comes at a great price for that person.<\/p>\n<p>So, one person I interviewed in the book, her name is Marcel Champy. She just said point blank that she\u2019s always regretted disclosing that she was autistic in her workplaces because immediately, it leads to prejudgment or things like that. So, it\u2019s one of those really tough things because like, I would never tell someone, and I still don\u2019t tell anybody, like, you have to disclose, you know, for the cause, you know, like. You know, because like, that\u2019s people\u2019s livelihoods. And I don\u2019t really know, I\u2019ll say it, I don\u2019t really know the right answer. Like, I don\u2019t 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\u2019t, you know, they should also be accepted as well. But like, on the other end, I don\u2019t know how to, you know, I know that that comes at a great cost for the employee, you know?<\/p>\n<p>SCHILLACE: Right. I feel that there\u2019s a real connection to be made here\u2014and you, in fact, make this connection in your book\u2014between coming out as autistic and coming out as gender non-conforming as well. Because I think that there\u2019s a similar sense. You have to decide if you\u2019re gonna live, who you tell and what the consequences might be. And I think we are in a period where that\u2019s 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\u2019s 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\u2019s liminal spaces are confusing. It\u2019s hard to know how to navigate them.<\/p>\n<p>GARCIA: Yeah, certainly. And I mean, like, I mean, you know, you know, look. I live, I\u2019m a college-educated male who lives in a big city that\u2019s, 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.<\/p>\n<p>SCHILLACE: [chuckles]<\/p>\n<p>GARCIA: Like, I understand. Like, you know, I understand why you wouldn\u2019t want, I understand why my queer friends or my gay friends wouldn\u2019t 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\u2019t wanna disclose that they\u2019re autistic, or they can\u2019t, you know. And then, of course, you know, but like, you know, and then there are some people who just can\u2019t, you know, mask that they\u2019re autistic because they can\u2019t speak, or they have, you know, and then they have, that leads to even more stigma.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>GARCIA: They can\u2019t, you know, they can\u2019t 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\u2019t, you know, that aren\u2019t that positive, you know? You know, and a lot of other judgments. So, it\u2019s, so, it\u2019s really unfortunate.<\/p>\n<p>SCHILLACE: The reality is we need to change our ability to, we need, the world needs to change, right?<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: We need to create more safe spaces rather than putting the onus on the person to make, you know. It shouldn\u2019t always be on the head of the autistic person or the disabled person or whatever minority to do all the educating. It shouldn\u2019t 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.<\/p>\n<p>GARCIA: Yeah. I mean, like, I think that one of the things, it\u2019s 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, \u201cWelcome to the church!\u201d There\u2019s nothing like that for when you join the autistic community, you know?<\/p>\n<p>SCHILLACE: [laughs] Right. Yeah, there\u2019s no parade, really.<\/p>\n<p>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\u2019re often fighting in the school district to get that little scintilla of money because it\u2019s never been fully funded, you know. You\u2019re, it\u2019s framed as you versus the school rather than the school just having those things ready, at the ready.<\/p>\n<p>SCHILLACE: Right, right.<\/p>\n<p>GARCIA: Same thing with employers. Same thing with, same thing with any space.<\/p>\n<p>SCHILLACE: Yeah, I agree, and I think that\u2014 So, one of the, just to close up here today, I wanna talk a little bit about the title \u2018cause I think this all comes down to this phrase, a really powerful phrase. The title is <em>We\u2019re Not Broken<\/em>. 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.<\/p>\n<p>GARCIA: I can\u2019t take credit for that, actually.<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: When I was writing that original <em>National Journal<\/em> piece, Andy Koehler came up with the headline, <em>I\u2019m Not Broken<\/em>, which was the name of the original piece. And then <em>We\u2019re Not Broken<\/em> is that. But I think it goes to this fundamental idea that disabled people aren\u2019t failed, and autistic people aren\u2019t failed versions of normal. And I think that for so long, because there\u2019s been so much misunderstanding about autism and any other type of neurodivergence, that there\u2019s this feeling, that there\u2019s this impulse to fix them.<\/p>\n<p>SCHILLACE: Mmhmm.<\/p>\n<p>GARCIA: And that\u2019s what led to, that\u2019s what leads to autistic people are still being, you know, there\u2019s a place in Massachusetts, the Judge Rotenberg Center, that still shocks autistic people today, uses shock therapy on them. That\u2019s 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.<\/p>\n<p>SCHILLACE: Mmhmm.<\/p>\n<p>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\u2019s what I, that\u2019s what I wanna argue, is that even if you do that\u2014 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\u2019m saying autism is all wonderful or that I\u2019m erasing the real challenges that autistic people have or the real impairments. I\u2019m the first person to say autism is a disability, just like deafness, just like blindness, just like using a wheelchair. And I don\u2019t deny that they come with real challenges and real impairments. But let\u2019s focus on those things. Let\u2019s focus on the things that impair people. And let\u2019s also focus on how do we, as a world, disable autistic people? Because if we didn\u2019t have wheelchair ramps or curb cuts, being in a wheelchair would suck, you know?<\/p>\n<p>SCHILLACE: [laughs] Yes.<\/p>\n<p>GARCIA: And if we didn\u2019t have Braille, you know, being blind would be much harder. And if we didn\u2019t have ASL, being deaf would be much harder. But that\u2019s not to say that there still aren\u2019t challenges and difficulties with them, but we do work to make things better for them.<\/p>\n<p>SCHILLACE: Right.<\/p>\n<p>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\u2019t mean you yourself are a failed human being. It means that you just have a different operating system.<\/p>\n<p>SCHILLACE: Yes. Yes. No, I think that\u2019s, that is wonderful. And I like this way of talking about all people and our uniqueness is something that we\u2019re a big fan here because, of course, we\u2019re also very pro-LGBT here as well.<\/p>\n<p>GARCIA: Yeah.<\/p>\n<p>SCHILLACE: And, you know, I think it\u2019s the concept that humans are persons; they\u2019re not statistics. They\u2019re not needing to be shunted away from the public. I mean, in a way, asking people to behave normative is, it\u2019s sort of a version of institutionalizing them, right?<\/p>\n<p>GARCIA: I hadn\u2019t thought of it that way!<\/p>\n<p>SCHILLACE: [laughs] But it\u2019s almost\u2014<\/p>\n<p>GARCIA: But yeah, it is. It\u2019s like\u2014<\/p>\n<p>SCHILLACE: \u2014internalizing the institution.<\/p>\n<p>GARCIA: You\u2019re internalizing the, you\u2019re 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\u2019t thought of that, thought of it that way. But wow!!!<\/p>\n<p>SCHILLACE: [laughs]<\/p>\n<p>GARCIA: Wow. Jesus, Brandy!<\/p>\n<p>SCHILLACE: [laughs] Isn\u2019t it also a way of erasing, too?<\/p>\n<p>GARCIA: It is, it is, it is.<\/p>\n<p>SCHILLACE: We wanna erase this: either take it out of our sight or dress you up in such a way that you don\u2019t appear to be different. And I feel like that\u2019s a real problem.<\/p>\n<p>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.<\/p>\n<p>SCHILLACE: Yeah, and that\u2019s horrifying.<\/p>\n<p>GARCIA: It\u2019s horrifying. It\u2019s, yeah.<\/p>\n<p>SCHILLACE: Representation. Representation is a big part of how we end up with accessibility, you know?<\/p>\n<p>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\u2019s no longer, this person\u2019s a part of the community, and therefore they become a pillar of the community.<\/p>\n<p>And what happens when you\u2019re part of the community? Then the community changes so that you\u2019re more, that things become easier for that person in the community. And then it becomes everybody\u2019s social, you know, just like how in my community, I\u2019m 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\u2019s the argument that I make a lot of times, is that when you do that, it becomes everybody\u2019s responsibility. And I think that\u2019s much, that\u2019s a much better way of looking at disability than it is, than, you know, sending someone away to an institution.<\/p>\n<p>SCHILLACE: Right. I will just mention here Alice Wong, who comes on our podcast periodically, she has the Disability Visibility Project.<\/p>\n<p>GARCIA: I love Alice so much.<\/p>\n<p>SCHILLACE: She is so great, isn\u2019t she? [laughs]<\/p>\n<p>GARCIA: Yeah. Yeah.<\/p>\n<p>SCHILLACE: So, yes. OK, well, this was wonderful. I know we have to sign off though. I feel like we could go on talking.<\/p>\n<p>GARCIA: Oh, we could go on for hours.<\/p>\n<p>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 <em>Medical Humanities<\/em>. Thank you, Eric, also, for being part of our show today.<\/p>\n<p>GARCIA: Thank you very much for having me.<\/p>\n<p>SCHILLACE: And thank you to all for being part of the conversation.<!--TrendMD v2.4.8--><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Podcast with Eric Garcia by Brandy Schillace &#8220;We&#8217;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&#8217;s book will inspire [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/medical-humanities\/2021\/11\/05\/eric-garcia\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":345,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15029],"tags":[15058],"class_list":["post-3196","post","type-post","status-publish","format-standard","hentry","category-podcasts","tag-podcasts"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>We\u2019re Not Broken: Changing the Conversation around Autism with Eric Garcia - Medical Humanities<\/title>\n<meta name=\"description\" content=\"Join us on this episode of the Medical 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