Episode 8: Here There Be Monsters

On this, the final episode of Traitor Radio, we’re talking disability and the ‘r’ word with Schuyler and Robert Rummel-Hudson, the father-daughter pair behind Fighting Monsters with Rubber Swords, a brilliant blog and disability advocacy project. Rummel-Hudson’s book, Schuyler’s Monster, is a must-read.

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Schuyler, who’ll graduate from high school in the Dallas suburbs this year, and Robert discuss how it felt the first time they heard President Donald Trump mock a reporter with a disability, how they’ve overcome clashes with institutional resistance to ability accommodations, and what to say — and do — when someone uses the “r” word as a slur.

RESOURCES:

Below, find a transcript of this episode.

TRAITOR RADIO EPISODE 8: HERE THERE BE MONSTERS

ANDREA GRIMES: Hello Traitors! Welcome to Traitor Radio, the podcast for people who are mad as hell and ready to bring the resistance home.

< THEME MUSIC >

ANDREA: I’m your host, Andrea Grimes. Traitor Radio is a way to focus our energy and our anger into making positive change in our own communities, one issue at a time. The format is pretty simple — we introduce y’all to real people who will tell real stories about their real lives, and how they’re affected by racism, sexism, transphobia, xenophobia and all those nasty -isms and prejudices that are making America un-great. Then we’ll give you some homework so you can do something about it — stuff that goes beyond calling your elected officials, which you should totally do, but which will help you start making change in your own community.

That’s the good news. The bad news: This is the last episode of Traitor Radio. For a while, at least — we’ve been running on the support of some incredible patrons, and on my own pocketbook, and I will just be straight up with you: I can’t afford to keep Traitor Radio afloat right now. I believe paying people for their work is essential to social justice, and I have some medical bills and other expenses that I need to cover, which means I just can’t supplement our Patreon income right now. BUT I wouldn’t even be recording THIS episode without our amazing Traitors of Record: Patrick, Ruth, Jake, Caitlin, Teresa, Aspen, Shannon, Jonathan, Robin, Scott, Merritt and Aria, who are making it literally possible to for me to be talking to you right now.

Traitor Radio may be taking an indefinite break — though I hope to bring it back in some form, someday — but I think our episodes, and the issues we’ve covered, are evergreen. So please listen to our archives and remember that every activist, new or seasoned, is welcome here. Hello, old-school resisters! But this is a 101-level space; if you’ve never done activism before, or you’re just getting into the swing of it after the election, I’m so happy to join you on your journey to un-fucking this country.

So let’s get started.

< MUSIC >

ANDREA: Years ago, when I was but a wee young cub reporter working at the Dallas Observer, I became virtually acquainted with this guy, Robert Rummel-Hudson. Dallas is like this, or was — if you’re even vaguely sort of into the same thing, whether it’s music or art or writing or whatever, you’re going to get to know everybody else who is into that thing pretty quickly, even in this giant city. So I came to know Robert, who had written this incredible book with and about his daughter, Schuyler. It was a book about monsters and mysteries and adventures and childhood and parenthood and this condition called polymicrogyria that affects Schuyler’s ability to communicate verbally. Following Robert and Schuyler’s work over the years has been awesome — they’ve given public lectures together at schools and colleges, and even at South by Southwest. Today, they’re on Traitor Radio to tell a story about (mis)communication, disability and advocacy in the time of Trump.

I am so pleased to have them on the show. I’ll let them introduce themselves and their story here in just a sec, but please note — Schuyler often uses an iPad to talk, and because she is a delightful and creative and hilarious person, her iPad voice sounds like a fancy British lady. So when you hear that voice, that’s Schuyler. But it’s also Schuyler when you hear this voice:

SCHUYLER: Hi everybody! My name’s Schuyler Rummel-Hudson.

ANDREA: I’ll let them take it from here.

< MUSIC >

STORYTELLING

SCHUYLER: Hello, my name is Schuyler Hudson, and I am a senior at Plano Senior High School in Plano, Texas. I’d like to talk about my life. I am happy to be here with my father, and share my story with all of you.

ROBERT: Hi, I’m Robert Rummel-Hudson, and I’m an author and a disability advocate. I’m also Schuyler’s dad, which is the best thing of all about me. I should really lead with that. When Schuyler was three years old, she was diagnosed with a rare brain malformation called bilateral perysylvian polymicgrogyria. From where I stand, I can tell you what the doctors say about it, how it affects her speech and her cognitive abilities, and how it can (and does) give her seizures that can be life threatening. But I can’t tell you what it’s like to have what Schuyler calls a little monster in her head. But Schuyler can.

SCHUYLER: My little monster is called polymicrogyria, or PMG. I was born with it. PMG means my brain doesn’t want me to talk, and sometimes it makes it hard to understand things, and it makes me have seizures. It feels like the Great Wall of China, or like an earthquake in my head. It makes me different from everyone else.

But what makes having PMG even harder is that people in the world don’t take time to understand me.For example, people are in a hurry when I am trying to talk, and don’t wait for me, like when I try to talk in class, but no one want to wait for me to spell on my iPad. When I talk to my friends, I use my voice, and they can understand me if they try hard. It make me frustrated and sad when people don’t give me a chance to show what I can do.

ROBERT: When we first embraced the idea of using assistive technology to give Schuyler a voice, we were starting from a place of total ignorance. That was twelve years ago, and even after all this time, we still have a lot to learn. The thing I find interesting is that the learning curve seems a lot steeper for my wife and I than it ever has for Schuyler. From the very beginning, even when she was presented with this totally alien digital language system, Schuyler seemed to get the possibilities, and figured out the little tricks and patterns and pathways to making that system work for her.

SCHUYLER, using her iPad: I was five when I used my first speech device, which I called the big box of words, Now I use my iPad mini to speak for me. I sometimes try to talk with my voice first, but when people can’t understand me, I use my iPad.When I talk with my iPad, people think I am like anyone else, which feels like I’m just like them. But even with my iPad, I sometimes feel a little bit left out, because my friends talk very fast. But without it, I couldn’t talk to people at school.

ROBERT: It took me years to really understand and appreciate that the assistive technology Schuyler was using represented just one piece in a kind of communications toolbox that she was assembling, with the tech piece but also some spoken language, which she still prefers even though it can be hard to understand, and a little sign language and a lot of very physical gesturing. I was always pushing that tech piece so hard, but Schuyler figured out almost immediately that she had a lot of choices she could integrate into her communication.

SCHUYLER, using her iPad: At school, one of my favorite classes is art. It calms me down. I can take what’s inside me, like if I am mad, or sad, or happy, and express it with paint, or drawing. I also play percussion in the band. Some of my band friends are like family to me, and I love marching band the most, because I can go to football games, and play on the field with my friends.

When I take classes with everyone else, teachers and friends help me. When I don’t understand what my teacher is saying, sometimes my friends help, by saying it in a different way. But sometimes school can still be hard.

[MUSIC]

SCHUYLER: Mmmhmm! I remember in middle school. My science teacher –

ROBERT: Don’t say her name!

SCHUYLER: Argh! Dangit! Sorry.

ROBERT: It’s okay!

SCHUYLER: She was a little mean.

ROBERT: You think she was mean?

SCHUYLER: A little!

ROBERT: Do you think she was mean, or do you think it was that she didn’t undertsand?

SCHUYLER: Didn’t understand.

ROBERT: Did you guys work it out?

SCHUYLER: Eh. Kinda.

ROBERT: Kinda. Do you remember what we figured out, what we discovered when we talked to her? Why she was having a hard time with your disability?

SCHUYLER: She has one, too.

ROBERT: She has one too. That was very interesting. And once you guys figured out that you were both kind of, a little bit different, and looking at things a little bit different, that helped a little, didn’t it?

SCHUYLER: A little bit.

ROBERT: Yeah. That was cool.

[MUSIC]

ROBERT: She was having trouble connecting with a teacher and trying to learn a different way, and it felt like the teacher was totally unsympathetic to Schuyler’s disability. Then we met with the teacher, and it turned out that the difficulty stemmed from the fact that the teacher herself was on the autism spectrum. Their individual disabilities were working at cross purpose to each other, but once we figured that out, things got better. Well, better in the sense that everyone understood the roadmap, I guess.

SCHUYLER, using her iPad: I want to be like any other teenager, but not a punk, or a mean person. I like to play Pokemon, and I am always changing my hair color. I want to be different, but I want to pick how I’m different.

< MUSIC >

HOMEWORK

SCHUYLER: I’m nervous!

ROBERT: You’re nervous? About pushing buttons?

SCHUYLER: No, talking.

ANDREA: It’s gonna be great! Okay, hello Traitor Radio listeners! It’s Andrea, and I’m on the line with Schuyler and her dad to talk about your homework for this episode. We’re going to start by talking about a moment the three of us discussed when we were developing this show: The speech that Donald Trump gave at a campaign rally in South Carolina way back in 2015, where he mocked Washington Post reporter Serge Kovaleski’s physical disability.

[BEGIN NEWS CLIP]

NEWS ANCHOR: … While defending his debunked claim that he saw thousands of Muslims celebrate the collapse of the Twin Towers here in New York, he appeared to mock a reporter with a disability. Take a look.

TRUMP: … Written by a nice reporter, the poor guy, you gotta see this guy. [grunting, straining] ‘Uh, I don’t know what I said, ahhh. I don’t remember!’ He’s going, like, ‘I don’t remember, a-doh, maybe that’s what I said.’”

[END NEWS CLIP]

ANDREA: Schuyler, what did it feel like for you, seeing Donald Trump act that way?

SCHUYLER, using her iPad: When I saw him on TV last year, making fun of people like me with little monsters of their own, I felt very mad at him. He is not nice to people like me.

ROBERT: I remember that evening clearly because we were actually watching tv with Schuyler the first time we saw that clip. I looked at Schuyler immediately, and I could just read her body language before she even said a word. When she finally said something, she simply said something along the lines of “He’s making fun of my friends.” She got it immediately. She didn’t see herself, necessarily, not right away, but she has a lot of friends with disabilities, kids at school and in her Miracle League sports teams, and a lot of them have various physical impairments. So this was one of those moments where we had to kind of react on the fly, because she was getting it straight from Donald Trump. And as it turned out, she didn’t need a lot of guidance. Like any other thinking, feeling human being who watched then-candidate Trump in that moment, Schuyler knew exactly what he was doing, and she hasn’t forgotten. She still hangs on to that, and I think she’s right to do so.

ANDREA: And now, of course, Trump is the president. Schuyler’s told me that she doesn’t just feel angry at him because of the way he disrespects people with disabilities — she’s mad for a whole lot of other really righteous reasons, too.

SCHUYLER, using her iPad: He is not respectful to people who are different, or women, or people who come from other countries. He is not honest to the world, even though he is the president of the United States. In the future, he makes me worry, because he’s not fair to all people with monsters, like me, or people who will be sick, and not be able to go to the doctor.

ANDREA: Schuyler’s talking, of course, about the Republican crusade to repeal Obamacare, which has floundered for now, but there are still a lot of ways politicians can make things hard for Schuyler and her family.

ROBERT: You see it almost every week now, it feels like. Recently there was some outcry about Betsy DeVos removing special education implementation documents from the Department of Education website. There was some discussion about whether or not this was just simple housecleaning, but the fact is, during her confirmation hearings, DeVos showed that she was completely unaware of even the basics of federal protections for kids with disabilities in public school, so anything she does in regards to kids with special needs always sets off the alarm bells. This administration has repeatedly shown its disregard for the issues facing the disability community, and honestly, I think most people are just hoping they’ll be left alone. There’s not a lot of discussion about moving the ball forward in regards to disability advocacy. It’s like we’re all just trying to avoid eye contact with this administration.

ANDREA: I guess if we’re talking, let’s talk about talking — about the language we use. Specifically, the “r” word. You write about this on Facebook a lot, Robert — I mean, the fact that you have to write about it at all is pretty enraging, but do y’all wanna talk more about how that word sounds to you, and what it means when you hear or read it?

ROBERT: It’s a topic I stayed away from for a long time, in part because as a writer, I get a little uneasy when we start talking about policing language. And to be perfectly blunt, I was a pretty horrible offender in the past, particularly in college. I’d be making the same defensive arguments, you know? ‘You can’t tell me what to say, the First Amendment, blah blah blah.” It’s humiliating to admit that now. But it also speaks to a larger point, which is why I’m so vocal about it now. If I can change, if a former entitled dude bro like me can change, than anyone else can, too.

A lot of people are mystified by the persistence of ableist language in our popular culture, particular the “r” word, and I love that we’re not saying it. I really do. Why do so many comedians and politicians insist on “punching down”, in a sense? Why take our most vulnerable population and make them such a punchline? I think part of the allure is the cheap laugh, and the way that making fun of people with disabilities, particularly intellectual disabilities, allows a kind of unearned edginess. If you’re going to use racist or homophobic language, you run the risk of being confronted on an equal footing, which is exactly how it should be. But for people with intellectual disabilities, self-advocating can be a real challenge. And of course there’s the risk of alienating a population with what we perceive as real power. The power to boycott, the power to make policy, the power to vote. People with intellectual disabilities in particular struggle to achieve any of those things. I think there’s a kind of cynical calculation that ableist language doesn’t carry much of a risk, and sadly, that’s probably true. Changing that is a pretty big boulder to push, because it requires a societal empathetic change. And honestly, it feels like society is moving away from empathy and advocacy for the vulnerable right now.

ANDREA: Schuyler’s taken this on, herself — a couple of years ago, a comedian named Gary Owen, who has appeared on an actual television special, a Showtime program, doing absolutely appalling material mocking people with intellectual disabilities who dare to have relationships. Schuyler responded in her own video.

[BEGIN CLIP OF SCHUYLER’S RESPONSE TO GARY OWEN]

SCHUYLER, using her iPad: My name is Schuyler and this is for Gary Owen who is so mean to his cousin and her boyfriend and people like me. People like me have a right and a choice to fall in love like everyone, and you were wrong. I am not a joke. People can love and live regular life and you don’t care at all about people who have a monster of their own. Please don’t be cruel and hateful to other people like me. I think you should say that you are really, really sorry to your cousin and her boyfriend and to people who are different. Thank you for watching my video.

[END CLIP]

ANDREA: Schuyler, you wanna tell us about that?

SCHUYLER, using her voice and then her iPad: Yeah! I made a video for a man who made fun of his cousin, because she had a boyfriend, and he called her the R word. People like her, and me, are not a joke. Please don’t be cruel just so friends will laugh at us. Also, you don’t know who might hear you, and have a friend, or a sister, or brother with a little monster like mine, and who will be hurt. Please be kind to people who are different.

ANDREA: One of the things I loved reading in the first draft of Schuyler’s story for this episode was her, like, one bajillion plans for the things she’s going to do when she grows up — which is, maybe terrifyingly for you, Robert, right around the corner. Schuyler, you wanna tell us about that?

SCHUYLER, using her iPad: In the future, I think I am going to travel to Hawaii, and Paris, and China. I want to get married, and get a job, maybe working in a bakery, or a library. I would like to own a cafe. It will be called Space Monkey Cafe, and my parents will help me. I like to help people like me, and I like to help my father with his stories of heroes, and monsters. Maybe when I get out of school, I can help sick children, and the poor, and people like me, with little monsters of their own.

ANDREA: And you’re already building up your resume, right?

SCHUYLER, using her iPad: This summer, I got an internship at CVS. It was fun, and I met new people at work. They were awesome, and nice to me. I was on time for my job, and helping people who buys the stuff from my store. I made my own money, and I learned to have an account for money of my own.

ANDREA: In terms of building up resources and supporting groups that support independence for folks with disabilities, what can our listeners do? Are there specific organizations, nonprofits, etc. whose work you want to highlight?

ROBERT: Schuyler has an organization she’s been with since she was very young. What do you like about Miracle League?

SCHUYLER, using her iPad: Miracle League is fun, and I meet a lot of new friends from soccer, and baseball. They also play football, and basketball, and bowling. Me and my friends all have different little monsters, but it doesn’t matter, we can all play. When I am too old to play Miracle League, I want to volunteer to help out with soccer, and baseball.

ROBERT: There are over three hundred Miracle Leagues around the world, including in Canada and now Australia. They can be found at http://www.themiracleleague.net. And while Schuyler has focused her energies on Miracle League, the great work done by Special Olympics deserves mention as well. And like Miracle League, Special Olympics also functions on a local level as well as a national one, so you can get involved in your community and see the impact you can make right there. I believe they are at specialolympics.org

There are a lot of disability advocacy groups I’ve been especially proud of as the need for vigorous advocacy has become so dire. They’ve really stepped up at a time when people with disabilities have faced some pretty awful attitudes and policy shifts.

The Arc of the United States has been at the forefront of calling out ableist language and attitudes. They were one of the most tenacious groups in calling out Donald Trump after the Serge Kovaleski business, and they’ve worked hard to keep the threat to disabled communities as part of the national dialogue. They can be found at thearc.org.

The group I’ve been the most proud of lately is called American Disabled for Attendant Programs Today, but of course we all know them as ADAPT. We also know them for putting themselves LITERALLY in harm’s way to advocate for disability rights. If you were horrified by the sight of protesters being dragged, literally DRAGGED, from their wheelchairs during the protests against the Republican ACA alternative legislation, and if you paid attention to the shift in the hearts of both citizens and policymakers because of those protests, then you’ve seen ADAPT in action. They are my current superheroes. You can find them at adapt.org.

Finally, as people are going about their lives, I’d encourage them to pay careful attention to the businesses where they shop. Dpo they see people with disabilities working there? Are those people working in areas where they interact in a meaningful way with the public? Do those businesses trust in people with disabilities to represent the face of the company? There are a lot of corporations such as CostCo and Walgreens that are reorganizing their training programs in order to more effectively employ people with disabilities both physical and intellectual, and to find ways to utilize their strengths. Small businesses and local franchises are trying to do the same thing, too. When you see businesses making that effort, recognize them. Talk to the manager, write to corporate offices, whatever that looks like. And if you’re an employer, reach out to Equal Employment Opportunity Commission to find out how you can institute training programs and internships for the disabled. Employment for people with disabilities is such a huge problem in this country, and improving this one area can change the lives of people with disabilities probably most of all.

ANDREA: I also want to plug your book and your blog — want to tell us where folks can find your and Schuyler’s work online and in print?

ROBERT: Most of Schuyler’s social media presence is still friends-only, but I believe you can find her on Instagram, username furiosa_rumhud21. My blog posts can be found at http://belovedmonsterandme.blogspot.com, and information about my book is at schuylersmonster.com. The book itself can be found on Amazon and through Barnes and Noble or especially through your local independent booksellers.

SCHUYLER: Yeah!

ANDREA: And I’ll give the last word to Schuyler. Schuyler, what’s your homework for our listeners?

SCHUYLER, using her iPad: I think people need to believe in people like me, with their monsters. The people I know who helped me to find my spark are my parents, and teachers, and they believe in me, that I can change the world with hope, and finding other people’s sparks. People like me need help getting a job, and living by ourselves, and if you can give someone a job, you can hire someone like me, and you will be surprised, because my new boss says I am “ROCKING” my job! We can use a chance to live a good life like you, and everyone else can.

< MUSIC >

ANDREA: Thanks for tuning in. This episode was produced by me, Andrea Grimes. Our music is by Emily Meo. Follow us on twitter at @TraitorRadio, and find us on Facebook.com/TraitorRadio, and at TraitorRadio.com. I hope we’ll be back soon.

< THEME MUSIC fade out >

 

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