Episode 6:  Language

Introduction

REID DAVENPORT: On this episode of Basic Able, we’ll be talking, listening, captioning, reading, however way you communicate-ing about language. For instance, do I say “disabled people” or “people with disabilities?” What about “differently-abled” or “physically-challenged?” Why am I asking myself rhetorical questions out loud? This is Reid Davenport. This is Basic Able.

[Spaghetti Western-Tarantino-esque music]

Language, a heavy topic indeed. A lot of people tell me that I need to clean up my language, that I swear too much, but they don’t realize how clumsy I am. Motherfuckers!

And now an anecdote on language. Since I moved into my apartment a little more than a year ago, I have become very close with a few of my neighbors. And it was just brought to my attention that before we got to know each other, I was referred to as “the hot guy in the wheelchair.” And I was offended. Why did they have to use both of those descriptors? Why couldn’t I just be the guy in the wheelchair?

So, here with me now to talk about language are Dr. Sara Acevedo and Cheryl Green. Sara is an autistic mestiza, educator, and disability justice advocate, born and raised in Colombia. Her background is in Linguistics, Disability Studies, and Activist Anthropology. Sara is adjunct faculty in Interdisciplinary Studies and recently received her PhD in Anthropology and Social Change.

Cheryl, who is coming to us from Portland, is a neurodivergent multimedia digital artist, closed captioner, and audio describer whose work focuses on disability culture. She’s on the board of the Disability Art and Culture Project and wants to tell everyone about her cat all her the time. For the record, Cheryl said she would not participate in this episode unless I mentioned her cat. So there’s that.

CHERYL: [chuckles]

REID: Welcome, Sara and Cheryl. Thank you for being here.

SARA ACEVEDO: Hi, Reid. Thank you for having us.

CHERYL GREEN: Hi, Reid. It’s great to be with y’all. And I didn’t bring my cat, so thank you for mentioning him.

REID: Yeah, I just wanted to do my due diligence. So, now because this is the last show of the season, and we’ll be back in the fall, we’ll be doing something a little different, dare I say special. I don’t have any questions, but I just have a list of terms related to disability. And I wanna throw these out there and see where the discussion goes.

Differently-abled

So, we’re gonna start out with a fun one to just wet our whistles, and that is one I’ve been hearing more and more often is “differently-abled.” What are your thoughts on differently-abled?

CHERYL: I think that’s bullshit in basically any way that you can slice it. I hate that term, because people think that— First of all, euphemisms don’t work. They are known to make things worse when you don’t just talk about something. You make something taboo, “Ooh, we can’t say the D word.” Well, differently-abled is another D word. But really, it still isolates and separates disabled people. Because all people are different from one another in some way, but we don’t call non-disabled people differently-abled. We’re still only using it for disabled people or people with disabilities. And so, I just don’t find it useful as a term that promotes inclusion. It definitely doesn’t promote inclusion. It does not promote equity. And it’s just plain— I mean, it is absolutely ridiculous-sounding.

SARA: Yeah. I just think it’s a discursive acrobatics. It’s so difficult. Why really make it more difficult than it needs to be? It is just even difficult to say it, “differently-abled.” Differently-able how?

REID: Now, does it relate to the inherent problem that some people see with the word “disabled?” Is “disabled” in itself problematic, and that’s why people don’t wanna use that word?

SARA: I think that there is a confusion. This is a question that I often get from my students and other people that I talk to. It’s like, “Shouldn’t we get rid of the ‘dis?’ Because ‘dis’ just means less.” To me, that is just a very clear example of people who have not been exposed to disability culture. There is a history behind these words, and there is also not only a history of oppression, but also a history of reclamation. Staying in the surface with these discussions about language is really missing the point of there being, there is complexity.

CHERYL: I just heard Sara use the word “discussion.” It starts with the prefix “dis.” Why is this not an issue but “disabled” is?

REID: Got ‘em!

CHERYL: [laughs]

REID: You got me. Good looks.

CHERYL: I think you need to say diffscussion with two Fs instead of an S from now on, diffscussion.

REID: I think we should say differently-cussioned.

SARA: Differently-cussion.

CHERYL: Yeah, differently-scussioned.

REID: [laughs]

Crip, cripple, and gimp

Speaking of reclamation, the next terms are “crip, cripple, gimp.”

CHERYL: Well, I like them all. I have been told I’m not allowed to use “gimp.” That’s just for gimpy people I guess to use that.

REID: [laughs]

CHERYL: I mean, I got a gimpy brain. Let’s be honest, I got a gimpy brain. I do use “crip” sometimes in the context of crip culture and crip pride. I love the word “criptastic.” I have heard “cripalicious,” which is great. I’m all for it, in a nutshell, but I think that like, in the brain injury community that is not a thing. It’s still very much you know, “I’m a thriver, not a survivor,” or uplifting inspiration-porn rhetoric like that. I don’t think “crip” comes up a lot there. But I identify more with crip culture, neurodivergent culture, than I do with brain injury culture. Also, I am with age, starting to become physically gimpy as well. So, I think maybe I’m getting close to being able to start to reclaim that. I can ask my physical therapist what he thinks about that, ‘cause, you know, I need his permission, of course.

REID: Yeah, can he write you a prescription for gimpiness?

CHERYL: Well, he’s supposed to make me less gimpy, not more gimpy.

SARA: Well, I have different views, not from Cheryl, just various things that come to mind and that I wrestle with. There’s a recognition of a crip culture and a cripstemology and crip embodiment and all of what it means beyond, again, the medical label. And so, what the reclamation actually brings is this resonance with community and a community that’s fragmented and a community that’s very rich and a community that we don’t, of course, agree with each other or all know each other because we’re crippled, right?

CHERYL: [laughs]

REID: We just know most of each other.

SARA: We just know most of each other, yeah. Yeah.

CHERYL: Can I just say that when I engage in that battle, I mean, I just can’t engage in it, because of my crippling fear.

Person with a disability versus disabled person

REID: [laughs] “Person with a disability” versus “disabled person.” How much time do we have? [chuckles]

SARA: OK, that’s a big one.

REID: It’s a big one.

SARA: It’s a really big one. Just cut me, ‘cause you know I could go on forever.

REID: Yeah, I will cut you.

SARA: Just cut me.

REID: Yeah.

SARA: Oh my god, you know? Like, oh my god.

REID: Well, let’s start off with how either you have the language that you use for you, but if you had to pick between, “I’m a disabled person,” or, “I’m a person with a disability,” which would you choose?

SARA: Oh, I’m a disabled person, 100%. 100%. And I’m an autistic person, not a person with autism. I’ve said this before, right? I often try to situate my own experience before just getting into this big discussion with no context. And I say, “I don’t carry autism in a bag,” right? I don’t carry it with me and then go and drop it. I’ve said this before, just simply because the image is just stuck in my head.

I once also saw a graphic: There were two stick figures, and one of them was carrying a bag. The bag had all these multicolored, different hues of color and stuff, and it said “autism.” Then the little stick figure next to it, the whole brain was in this color, different color hues, right? And so, that really brought it home for me at a visual level, at a way that I could sort of internalize and always carry that image with me and share it with people.

REID: Cheryl?

CHERYL: I mean, what could I add to that, seriously? [laughs] I don’t know what I could add to that. I really have a lot of feelings and resonance around everything that you said, Sara.

REID: Let me throw a wrench into this kumbaya moment here. I usually use person-first. And I can only proffer this, but it’s interesting, it would be interesting to see if there’s a difference between people with “invisible disabilities” versus “visible disabilities.” And I am partial to person-first because I feel that society already projects my disability back at me way too much. So, I try to reclaim my personhood, because it’s so obvious that I’m disabled that people sometimes don’t see past that.

SARA: Yeah, yeah.

Inspiration porn

REID: So, let’s talk about inspiration porn, the new burgeoning inspiration porn industry. So, I full-heartedly believe that inspiration porn is an issue. However, I do think that the term is used to cover up laziness. I made a film—I think both of you have seen it—about baseball and growing up with a disability. I made it first and foremost for myself to take all this pain I had and turn it into a film. And people within the community have suggested to me that that film was inspiration porn. And if that’s where we’re at, I think the term is problematic, because I was not making a film to inspire other people. I was making a film about my life that I wanted to reflect upon. Here’s a clip.

[ambient music, birds chirp]

REID: I’m a filmmaker who can’t shoot a steady shot. I’m a baseball fan who can’t play. But it’s worth it for those moments when I make it onto the field.

[music rises with emotion then fades]

SARA: This is what is coming up for me. I watched the film, and I think that what you’re suggesting about overusing any term and then devoiding it of its meaning has potentially powerful, can be a powerful tool, but it can also be a bit of a drawback.

So, I think how I understand inspiration porn is in the context of non-disabled people utilizing an expression or a form or an activity or anything else to feel better about themselves, for whatever reason, right? So, “I will use disability as a prop, and thereby denying the humanity of the person, the disabled person, by appropriating that image and applying it to my life to make me feel better because, oh, ‘I was lazy, couldn’t go to the gym today, but my life could be worse, ‘cause look’.” And that’s the most classical example, let’s say.

And let’s discuss, because this is such an interesting point. And it’s like, how do we, at what point do we say, “OK, this word, we’re devoiding it of its meaning completely, and does it mean that disabled people also use inspiration porn?”

REID: You know, when I was making this film, I was acutely aware of inspiration porn. So, I was even trying to go against inspiration porn. And the one thing that I struggled with the most was the soundtrack.

CHERYL: Ah.

REID: How do I get an extremely emotional song, specifically at the end, that isn’t going to be seen as trying to elicit some bullshit inspiration? But then again, the reason why we have this term, and the reason why it could be read that way, is because there is so much inspiration porn out there that you don’t need to be 18 years old to purchase at your local Walgreens. It’s everywhere!

CHERYL: It is, and people think that they want it. And maybe a lot of people do. I find that no matter what work I present, people tell me it’s inspiring. When I tell people I made a very non-inspirational film, they still tell me it was inspiring. And so, I think that people have a limited mindset about what it is that they’re supposed to say around expressions of disability.

And so, I get told that my life is sad, not by people who have asked me what I think of my life. But I’m told it’s tragic, it’s sad, they don’t know how I could live this way, they don’t know how I’ve come this far, what an inspiration I am. And they don’t have any backstory to any of it, yet they just— People have told me they couldn’t possibly live through what I’ve lived through, without knowing what I’ve lived through.

Developmentally-disabled

REID: “Developmentally-disabled.”

SARA: OK!

REID: I mean, technically, I'm developmentally disabled.

SARA: Mmhmm.

REID: It’s like, what does it mean?

CHERYL: [chuckles]

REID: Is there a point to this overly-medicalized term? If you're gonna have this medicalized term, what's the point to it?

The point is that we still, as a broader society, feel like people with disabilities, your role is to be a patient and receive services, and the best way to do that is get your diagnosis. So, that’s the point of it is to line people up for services. It’s to rank people. It’s to decide who’s gonna get to participate. If you have that label, then it’s inspiring and exciting that anyone would ask you to prom, whereas if you don’t have the label, then whatever, of course you would be asked to prom.

REID and SARA: [laugh]

CHERYL: I mean, that’s one example. There are other examples.

REID: But I love being a token!

CHERYL: I knoooooow. Who doesn’t? It’s so fun to be a token.

So, that’s the point of it. The point of it is to rank people and get them set up for services. Unfortunately, there’s just so— One of the problems I’ve seen is— I am not someone who’s ever been diagnosed with a developmental disability. So, I’m gonna speak from outside that category or that label. I have a lot of friends over the course of my life who have carried that diagnosis, and I have seen a divide. I have seen some people say, “I don’t want that label! I’m not developmentally-disabled like them!”

And this is a big problem for me, ‘cause anytime we say, “I don’t want a label that those type of people have,” we’re really dividing the community, and we’re doing that disability hierarchy: “It would be cool to have CP, but oh, developmental disability label, that’s not a developmental disability like that one.” So, it’s troubling when it’s used to rank people. And it’s very common in the traumatic brain injury community too, “I don’t have a disability like that.” I’m like, “Well, what do you think of people who have cognitive or intellectual disabilities or a developmental disability diagnosis?” You’re really giving some hints about what you think about this community of people when you say, “I’m not disabled like them.”

SARA: Yeah, I’ve been encountering for a while now, and I’ve been having these conversations with other autistic scholars and activists around this. Another sort of dividing ourselves is to sort of speak about autism in ways that, “Oh, but we are intelligent. We are intelligent, OK? We are.” It’s like this assertion that we need to affirm our humanity by dehumanizing other disabled people.

So, if we say, “Oh, but we’re autistic, but we’re intelligent, we’re in here, we are active, our brains work,” it’s like, I mean, it’s tacitly implying that people with intellectual and other cognitive disabilities are not— And what does intelligence mean?

I go back to this whole idea of development. What does a development mean, right? How did we develop differently than others? And who gets to determine what regular or normative development is? And so, in that sense it’s like, again, just contesting assumptions, all of them. Like, what is intelligence? I do not believe in that. I believe it’s a construct. I believe it’s a very Western-centric, Anglo-centric construct that speaks to what… [chuckles] that speaks to this idea of ideal humanity. And who got to determine that? What kinds of bodies and identities got to determine what an ideal humanity was?

So, in saying, “Oh, but we are intelligent,” I feel like we are throwing other disabled people under the bus with that, sort of asserting, “I’m not like those people, OK? I’m autistic, but I’m not like those people.” I find it complex.

Neurodivergent

REID: Neurodivergent.

SARA: [laughing] Oh!!! Boom.

CHERYL: Yes!

REID: [laughs]

SARA: Pretend we’re not overly excited. “Oh, neurodivergent, okay.”

REID: [still laughing]

SARA: Cheryl, Cheryl.

CHERYL: It’s the most beautiful word. It’s one of the most beautiful words. Say it again. Say it a bunch of times in a row for me.

SARA: You’re biased. You’re biased. Neurodivergent.

CHERYL: I love the term “neurodivergent.” Again, depending on who I’m talking to, I might, say, identify myself as neurodivergent or as somebody with a brain injury or brain-injured or whatever. I like it because I feel that I am neurodivergent. If you look up the definition of it, there I am. I also like it because that term, I feel, makes me feel more aligned with Sara and other people who are neurodivergent but maybe didn’t have a traumatic brain injury. So, for me, it’s a community-building term. I like the way the word sounds. I think it’s a cool-sounding word. I like the way it sounds when Sara says it, especially. And I find it kind of an in-your-face, reclaimed term that is very pleasant.

And I also find that when I identify myself as someone who had a brain injury, usually the first question I get from strangers is, “How did it happen?” as if I would like to relive my trauma for you, as if that’s a fair question in any way. It’s not. It’s a gross, unfair question that you’re never gonna reciprocate. You just wanna hear something gory and then be relieved that I lived through it, again, not actually knowing the story. When I identify myself to people as neurodivergent, nobody ever asks what that means, and I can live my life in peace and not be interrogated and I love it. Then when I do meet other people who identify as neurodivergent, and I say the word, hands go in the air, people start flapping, people start yelling, “Me too! Me too!” And so, I really like it.

SARA: So…I really enjoy an idea of not diversity, but divergency or whatever. I really like “divergent.” I really like it because I am very averse to the norm. And I guess that’s a political statement, but mostly because I’ve never understood the norm. I’ve tried to assimilate to the norm by mimicking and sorta masking, and that’s caused me tremendous pain throughout my life. And you know, I always knew I was neurodivergent my whole life. I just didn’t have the language for it. And not having the language for, or an understanding of, neurodiversity causes a lot of…. [sighs] It sort of really rehashes or brings out this internalized ableism. You don’t see any other model out there. You don’t see the alternatives, right? So, the alternatives for me were nonexistent. There was no, “Oh, let’s gather in community and talk about how we are divergent from the norm and how, in being divergent from the norm, we are absolutely beautiful and rich and layered and complex and human.” There is, “You need therapy. You need medication. You need to be tamed.”

So, for me there is this visceral or interconnection, precognitive, affective connection between the taming of my body as a woman, the taming of my body as a Latin American woman, and the taming of my neurology. I often think about the label of “hysteric” and think about the overlapping experiences of neurodivergent women and women who are labeled hysteric, and even going way back in history thinking about witches and the persecution of witches and the witch hunts. And then bringing it to today and thinking about, or a little after the birth of psychiatry and the insane woman, and then bringing it to today to the feminist. How are we characterized because our bodies do not…resist taming? When they resist taming, they are violated and they’re abused and they’re oppressed. And for me, those identities are totally interrelated.

So, my neurology expresses in the, it comes through the somatic expression of my body, in sitting with my leg crossed or moving or, not flapping, stimming with my hands or doing anything else that could seem, “unladylike.” For me, that is not only a site of pride in a communal identity but also a source of divergent personhood, which I love so much. And there is the, of course, because it’s complex, there are the sides that are complex about, that are more difficult, about an identity that is not only symbolic or political or cultural, but it’s also an embodied identity. And that causes, there is distress in a lot of that. There is not only the stress from what medical professionals would project onto my body, but there’s the stress because of “crippling anxiety,” [laughs] because of extreme anxiety and other things that I live with.

But that is not something that I would disregard from my identity. It is actually part of who I am. It makes me complex. It makes me human. It makes me vulnerable. And it makes me be happy and sad and upset and anxious and all of the things at once. And I think that severing a part of my identity by rejecting—I’m not saying I enjoy anxiety—but rejecting that would also be rejecting the things that my brain does and that make me who I am and that inform the work that I do.

REID: Thank you, Sara and Cheryl, so much for coming on. And it’s been a lot of fun.

SARA: Thank you for having us. I think that you were expecting something funnier, but Cheryl and I are really boring. So we apologize for that.

REID: Are you? You’re funny.

CHERYL: I love being boring. Thank you, Reid.

Wrap-up

[rock music break]

REID: Basic Able is presented by Through My Lens and made possible through a grant from the Ford Foundation. Producer of Basic Able is Lyntoria Newton. Executive producer Dan Lee. Camera Nicholas Berger. Captioning and guest with conflict of interest Cheryl Green. Visit ThroughMyLens.org to find out more about how we’re disrupting media portrayals of disability and how to get involved.

This is Reid Davenport reminding you that you shouldn’t throw stones, no matter what kind of house you live in. You could seriously hurt someone. Thank you for listening, watching, or reading Basic Able. I’ll see you in the Fall. Cool. Did it.

[Spaghetti Western-Tarantino-esque music]


Episode 05: Speech

Introduction

REID DAVENPORT: On this episode, we’ll be talking, listening, captioning, reading, however way you communicate-ing about speech impediments, a term that sucks, but my favorite excuse for why you’re not laughing at my hilarious jokes. Oh, they just probably don’t understand me. So, let’s talk about how sometimes you can’t understand me as we fall down the meta-rabbit hole. This is Reid Davenport. This is Basic Able.

[Spaghetti Western-Tarantino-esque music]

I remember hearing something to the effect that if you appear to be disabled above the neck, you’ll have a much more difficult time getting past stigmas connected to disability. I have no idea if it’s even possible to quantify social inclusion in any meaningful way. But I put forth this notion because it reflects my own sentiments about living with speech that is deemed “abnormal.” To literally, and therefore figuratively, not be understood is something that doesn’t go away.

Nina G. on YouTube trolls and comments

My first guest, Nina G., is a comedian, professional speaker, storyteller, writer, and educator. She brings her humor to help people confront and understand disability culture, access, and empowerment. Some of her reviews include, “She would be inspirational if she was funny,” “I really hope we can find a cure for this unfortunate condition,” and “I have meat in my fridge funny than her.” Welcome, Nina G.

NINA G: Well, what a lovely welcome. Thank you, Reid!

REID: What motivated you to kind of put those on, say like, “Here they are?”

NINA: I am impervious of any YouTube trolls. Because what I always say is, “Never pity me for having a disability, but you can pity me for going to Catholic school in the 1980s with a stutter and a learning disability. I will take that pity any day.” And that is why I can have a YouTube channel with open comments, because I get nonsense every single day. And it’s like, I’ve had total worse by people who actually had some power over me. So, you know, some guy in his basement saying he wants to see my “b- b- b- boobs?” Not a big deal! I don’t really care.

Although, the one time that I did like, the comment that pissed me off the most was someone said, “This is the bravest thing I’ve ever seen.” The bravest thing this guy’s ever seen is me doing stand-up comedy!!!

REID: Yeah.

NINA: And I put that in my act now, and I say, “In your face, 9/11 first responders.” I’m telling dick jokes, so. [chuckles]

REID: Yeah, yeah! And they are very good dick jokes, if I may.

Being a comedian, being a woman, talking about your disability, can you talk about the responses you’ve gotten, the good, the bad, and the ugly?

NINA: I have one video that has a million hits, and it’s a heckler video. Heckler videos always do really, really well online. So, it’s not like my best work. It’s not that great. But it has a million hits, so. But it has thousands and thousands of awful things people say. When the first Woman’s March happened, I had this amazing peak of like 100,000 people in a week, and 90% of the viewers on that are men.

REID: The misogyny peak. [laughs]

NINA: Yes!! And I’ve gotten paid two grand off the video. So, like, at least I’m getting paid for the abuse that I take. But also, it’s just like you know, like, OK.

Captioning stuttered standup comedy

REID: So, you caption a lot of your stuff, and I’m kind of curious if you ask the captioner to keep in your stutters.

NINA: I only do if it’s part of the joke. Otherwise, it’s like no, listen to what I’m saying instead of how I’m saying it. And the other thing I wanna say about captioning my videos is a lotta comics don’t, and deaf people know who I am. ‘Cause I have done shows, and they’re like, “Oh, yeah. I’ve seen you on YouTube.” And it’s because I am captioned!

REID: I didn’t know deaf people had a sense of humor.

NINA: They do! Yeah.

REID: No way.

NINA: No, they do.

REID: It’s mind-blowing.

NINA: [chuckles]

Miracle cures

REID: Do you still get people who say, “Oh, I saw this Oprah episode, and you should try this!”

NINA: Well, and I think that’s a thing whether you stutter or whatever your disability is, is that as soon as someone meets you, they suddenly have a PhD in the thing you have. That is a constant for all of us. And for me, the thorn in my side for a very long time was that Oprah had a show on this thing that you put on your head that you put in your ear, and it gives you feedback. And it was a miracle because the girl couldn’t say a sentence, and then she could speak afterwards. And what it is, it’s feedback. So, when I do a show, and there’s feedback in my ear because it’s crappy audio, I don’t stutter because it’s a trick in the brain. It’s called the choral effect, which by the way, kinda screws up all of your stuttering jokes when you don’t stutter.

BOTH: [laugh]

NINA: So, you know, a little bit of stuttering is always very helpful.

But the other thing is, is that people would just come up to me, and it’s like, “Oh! I just want you to know this.” Like, once I was at this conference, and I was just talking on learning disabilities. And I was trying to network, and a woman stops me, tells me this really important information because she thought I would like to know. And I was like, “Yeah. I just deal with it by telling everyone to shut up and not interrupt me. And that’s all I need.”

REID: Any other memorable responses?

NINA: I think a lot of times people perceive that I am making fun of myself. I don’t make fun of myself! I make fun of the assholes that I encounter. Is it OK if I say asshole?

REID: Please.

NINA: OK.

REID: I don’t—

NINA: OK. Please, OK. Good.

REID: I don’t think you’re swearing enough.

NINA: OK. Oh, fuck yeah!

REID: Yeah. Cool.

NINA: Let’s go.

REID: Yeah. We have a little explicit sign next to our logo.

NINA: Wonderful.

REID: So, fuck Oprah.

BOTH: [laugh]

NINA: Oh, shit! You’re never gonna be in the book club. [laughs]

REID: Yeah, damn.

NINA: You know, I have my book coming out. So, I will not say, “Fuck Oprah.”

REID: OK.

NINA: So. [laughs]

Nina’s books

REID: Yes, that was my next question. Talk about your new book.

NINA: Well, I have my old book, which is Once Upon An Accommodation. Is it there?

REID: It’s here!

NINA: It’s—

REID: Of course, it is.

NINA: Oh, oh, OK! ‘Cause there’s all these: An array of disability books…and it’s not up there, apparently.

REID: Fuck.

NINA: Fuck.

REID: I thought it was. No, I have it somewhere.

NINA: Well, Reid hasn’t put it prominently—

REID: I’m a dick.

NINA: —on the shelf with all the alcohol there. [laughing] So—

REID: Oh, shit. I’m gonna find it. Keep talking.

NINA: OK. So, I’m gonna keep on talking, and the book is called Once Upon An Accommodation. See, I’m gonna just look at the camera now and do a little thing. It’s called Once Upon An Accommodation, and it is a book about learning disabilities and how to advocate. So, it is a children’s book written by me and illustrated by Mean Dave. I hear something above my head. I’m not gonna look though. And the book is about a person. It could be a child, it could be an adult, it could be a teenager. But he finds out that he has a learning disability, and the book is about him discovering what that is and how to advocate. Nothing yet, huh?

REID: This is really embarrassing.

NINA: [chuckles] This is really embarrassing, everybody. He is looking and looking.

REID: Someone took it.

NINA: Somebody took it!

REID: Yep. ‘Cause it was so good.

NINA: Well, you’ll have to go on Amazon or CreateSpace to get another one, or you can get another one at NinaGComedian.com under the Book tab.

Here it is! Yay! We found it! Here it is: Once Upon An Accommodation: A Book About Learning Disabilities.

But my next book is called Stutterer Interrupted: The Making of a Stuttering Standup Comedian. So, it’s just my memoirs.

REID: Cool. And when will that be out?

NINA: I’m hoping within the next year.

REID: Thank you so much, Nina! I really appreciate it.

NINA: Thank you!

REID: Yeah.

A word from our sponsors

[painfully sappy music]

This Episode of Basic Able is brought to you by The Larry Lewis Foundation. Love, courage, strength. At the Larry Lewis Foundation, we’re focused on curing disability. All of them. All of your donations go towards medical research. Or, put another way, all of your donations go towards…hope.

Lateef McLeod on communication and poetry

Here with me now is Lateef McLeod. Lateef McLeod is building his career as a motivational speaker and spoken word artist. He has earned a BA in English from UC Berkeley and an MFA in Creative Writing from Mills College. He is now a student in the Anthropology and Social Change doctoral program at the California Institute for Integral Studies in San Francisco. Lateef, thank you so much for being on.

So, my first question is, why poetry?

LATEEF MCLEOD: [via device] I chose poetry as my main art medium because I could adequately express my thoughts and feelings in several verses instead of having to writing pages as in other medium. Typing has always been slower for me, which means I need more time to write. However, I do have to say I also like to write fiction, and I am writing a novel right now to address some concepts that I would like to express through the storytelling format. I have always been attracted to the narrative and the art of constructing another world in fiction. Since I was young, I loved to be engrossed in a good novel.

REID: So, if it's OK, I would like to read a section of your poem, Wall.

Don't shield me from the impatient faces that tap their toes

their eyes always wander looking for the next novelty

they need patience

but my cell phone goes deathly for hours in the day

can't we just find a fiber optic way

to hook my brain to the machine

so my thoughts can be electronically voiced

over twelve-inch speakers

Can you talk about how your relationship with your voice has changed over time?

LATEEF: My relationship with my voice has become more assertive as I become a mature adult because I have become more sure of things since going through life experiences. But like many people who use AAC, I have to deal with time.

And what I mean by that, in modern society we are expected to do about everything by a strict time schedule, even communicate. And for people who use AAC, we fall behind that time schedule.

REID: And AAC is assistive communication?

LATEEF: Augmentative alternative communication, yes.

REID: Gotcha.

So, you have another poem called Too Pretty For Ugly Laws, which it sounds like a poem written by Muhammad Ali.  What  was the inspiration behind that poem, Too Pretty For Ugly Laws?

LATEEF: The poem was inspired by the book The Ugly Laws by Susan Schweik, which recounts the time during the turn of the 20th century when American cities passed Ugly Laws banning people with disabilities from panhandling or being seen in public. So, when I saw that, I said that is bogus, and I need to write something to refute that. So, I thought that I belong to the fraternity, Kappa Alpha Psi, and we are known as the pretty boys. So, I definitely must be too pretty for some Ugly Laws.

REID: Oh, yeah! I mean, I agree! [laughs]

Intersectionality and identifying yourself

So, intersectionality is one of the buzzwords going around our community, but please indulge me if you will. On your Huffington Post bio, you are described as a black poet with cerebral palsy. Is that what you'd prefer, and if so, why not something else like black disabled poet, poet who has cerebral palsy and is black, or disabled poet who is black, yada yada yada. Or a poet who is, as we established, too pretty? 

LATEEF: I guess I was using first person language for the Huffington Post bio, and I put black first because I have become used to, in this country, describing by race first. I think as a person of color growing up in this country, you learn early on your race and ethnicity will affect how people will look at you. You can either hide that fact or confront that fact, and I choose to confront it and have control of how I am labeled.

REID: So, what synthetic voice pop cultural reference are you sick of hearing the most? Steven Hawking, Roger Ebert, or Speechless?

LATEEF: Speechless.

REID: So, what do you think of Speechless?

LATEEF: [laughs] I actually think it is a step in the right direction. It has some flaws, but it does show what it is like to grow up having cerebral palsy.

REID: Now, if I was into making corny jokes that able-bodied people would say, I would say that it's not a step in the right direction; it's a roll in the right direction. But I'm not gonna do that.

Is there anything I missed, anything you wanna talk about or you feel like other people should know?

LATEEF: My website is LateefHMcLeod.com. I've really enjoyed being on the show.

REID: Thank you so much, Lateef. I really appreciate your time.

Rupal Patel and personalizing AAC voices

REID: So, here with me now is the founder and CEO of Vocal ID, a company that is providing alternatives to the generic voice that is used with many speaking devices. Welcome, Rupal Patel. Now, Rupal, I am so excited that you're here because I want to talk to you about this technology, but also because you are the season's token non-disabled guest.

RUPAL PATEL: [laughs]

REID: So, a lot is riding on your non-disabled shoulders. So, can you first tell me what Vocal ID is?

RUPAL: Sure, Reid. First of all, it's a pleasure to be here and to talk to you. Vocal ID is a voice technology company, and as you said, what we do is we create customized digital voices for people who have to rely on computers to talk, not for them but as a way communicate to the rest of the world.

The importance of voices

REID: Why is it important to have a different voice?

RUPAL: Communication is more than just information transfer, right? So, certainly, communication devices allow us to get our message across. The world is filled with a whole set of different kinds of voices, and those voices tell who we are.

REID: How would one convey who they are through their voice if they’ve never used their “voice” ever?

RUPAL: Someone who relies on a device to talk, they make sounds. So, they make vocalizations, and what we do is we harness those vocalizations. We record that voice. So, it’s not clear enough speech for people to use. So, you can obviously speak clearly enough that I can understand you. But there are people with more severe communication impairments where it’s not easy to understand what they’re saying, but they are uniquely different than another individual who’s unable to speak.

So, what we do is we record those samples, and then we find someone similar to them in age, in gender, where they live, and so on so forth. And we have that person, that surrogate talker record several hundred sentences, and then we mix those voice samples together. And we create a computerized voice that’s a combination of the two.

REID: How many people have you been able to serve using this technology?

RUPAL: So, in 2016, we kind of launched our service. And up until now, we’ve had about a hundred and I wanna say, 140-something, 150-ish individuals who now have custom voices that we’ve built. We wanna continue to be able to reach more people and are looking to do that as well.

REID: Well, thank you so much, Rupal. I really appreciate it.

RUPAL: Absolutely. OK. Best of luck, Reid.

[rock music break]

Wrap-up

Basic Able is presented by Through My Lens and made possible through a grant from the Ford Foundation. Producer of Basic Able is Lyntoria Newton, executive producer Dan Lee, camera for this episode Daniel Chávez Ontiveros, Isara Krieger, Spark & Foster Productions, and Breaktide Productions, captioning Cheryl Green. Visit throughmylens.org to find out more about how we’re disrupting media portrayals of disability and how to get involved.

This is Reid Davenport reminding you that “able” is a four-letter word. Thank you for listening, watching or reading Basic Able. ‘Til next time.

[Spaghetti Western-Tarantino-esque music]


Episode 04: Documentaries

Introduction

REID DAVENPORT: On this episode, we’ll be talking, listening, captioning, reading, however way you communicate-ing about disability in documentaries. Yes, this podcast just got real. This is Reid Davenport. This is Basic Able.

[Spaghetti Western-Tarantino-esque music]

All right. A little joke for you. A podcast host with cerebral palsy and a sound designer with spina bifida rolled into the studio. Well, actually, the joke is on you because you have to listen to find out what happens.

JIM LEBRECHT: [chuckles]

Jim LeBrecht Introduction

REID: My first guest has mixed and designed sound for almost 250 films, including The Kill Team, In Football We Trust, and Bad Santa. He is currently co-directing Crip Camp, which is the story of Camp Jened and its summer camp awakenings that would transform lives and shape the future of the disability rights movement of the ‘70s. For those of you who are listening, allow me the privilege of describing Jim to you. He has luscious curly hair, dons a chain with a ring on it, and looks like he’s a still a little stoned from a Grateful Dead concert that took place back when Jerry was still around.

JIM: [chuckles]

REID: In fact, this is the first time I’ve ever seen him without a tie-dyed shirt. Welcome, Jim.

JIM: [laughs]

REID: Thank you for being here.

JIM: [continues laughing] Thank you, Reid. First off, I didn’t mix Bad Santa.

REID: Sorry.

JIM: I did some work on it, but this is just me being a Boy Scout, OK?

REID: Yeah.

JIM: I uh—

REID: Were you a Boy Scout? [laughs]

JIM: No, they wouldn’t let me in.

REID: Wait, are you serious?

JIM: Yeah! My father wanted me to be in the Boy Scouts, but I’m 60, almost 62 years old. So, yeah, they wouldn’t let me in.

REID: Wow.

JIM: Yeah. But I overcame that.

REID: Yeah.

JIM: Yes. [laughs]

Disability documentary films

REID: Now, you’ve been working in documentary as a sound designer for decades, and you’ve seen documentaries of all sorts. But I wanna hear some patterns when it comes to disabilities.

JIM: You know, I think you can talk about the tropes around disability in narrative film separately from documentary. And by nature, documentaries really are more about the truth and revealing the truth and showing it in a way that is compelling. Whereas, narrative films for the most part, you know, if the cripple doesn’t wanna die, I mean, why bother making the film, right? I mean, we’ve certainly seen some variations on that but not a lot. But in the documentary world, I probably have worked on let’s say you know, about maybe 10 to a dozen films dealing with disability. But they’ve all been rather wonderful, and I gotta tell you, even if I was close to bankruptcy, if it was a film that really didn’t show disability in an honest light, there’s no way I could, I would work on it.

Regan Brashear’s film, Fixed, really was kind of a modern, a more recent kind of discussion about technology and disability. Jen Brea on Unrest, which really focused on her acquiring ME or Chronic Fatigue Syndrome, and I will not try to attempt to pronounce—

REID: [laughing]

JIM: —Myalgic—

REID: Yeah, yeah

JIM: —Myalgic uh Encephal— Sorry, folks. I need more coffee for that.

REID: Nice try, though.

JIM: Yeah, thank you!

REID: Yeah.

JIM: You know, I’m—

REID: Yeah.

JIM: There’s Jen. She’s a graduate student at Princeton, and she’s had a really bad fever. And then afterwards, like basically has you know, developed these symptoms where there’s no energy. And she’d been thinking about maybe doing documentary work, but she decided that she needed to document how she was doing ‘cause the doctors wouldn’t believe her. And she started filming on her iPhone. And over the course of I don’t know exactly how long, but at least a couple of, few years, she wound up making this film that was extraordinary look at people with ME and what the science or non-science is about it, the absolutely pitiful amount of money that goes into researching this, people thinking that it was just something that was psychiatric and not you know, actual physical problem.

REID: Here’s a clip.

[Unrest trailer plays, a heart beats beneath the spoken words]

JEN BREA: I don’t know what I did to myself. I don’t think I can get up off the couch. I feel like my brain is misfiring.

[pensive music]

Sometimes, I wouldn’t be able to speak. Wwwwwwwwow.

MAN: If you say too little, they can’t help you. And if you say too much, they think you’re a mental patient.

JIM: Unrest premiered at Sundance, it’s been on PBS, and it is played throughout the world.

REID: It got shortlisted, right?

JIM: Yeah. So, the documentary world for the Oscars—

REID: Yep.

JIM: —there were like about 180 films that qualified, and then that gets whittled down to 15 films, which is the shortlist.

REID: Yep.

JIM: So, she made the shortlist, didn’t make it to the final five. But the film has done amazing amount of good in regards to raising awareness about ME, Chronic Fatigue Syndrome. And also, on top of all that, it shows her filmmaking. And there were times where she wasn’t gonna be able to travel to England but figured out the technology to allow her to direct remotely. She was directing some of the shoots from her bed. I think this is actually really an amazing time right now because people like Jason DaSilva’s film, When I Walk, and Jen Brea’s film, Unrest, that they have made it to the motherland of Sundance.

REID: Can you go through your mental facilities and kind of try to also talk about the bad portrayals of disability?

JIM: It’s a tough one because…there are some extraordinary people who’ve done things, right, that are pretty mind-blowingly good. It all matters how you frame things. And if you’re giving somebody praise and putting them up on a pedestal for doing something that isn’t very extraordinary to the general disabled population, then that’s kinda saying, “Boy, it’s great he actually got his pants on today.”

Working as a disabled person in the film industry and disability identity

REID: Now, you and I have both done work in film. And my work mostly deals with disability. So, I’ve opened myself up to being pigeonholed. But you came in a different way, as someone who just relied on their talents to break into a career. Was that difficult? And as you’ve become one of the most prominent sound designers in the Bay, has your relationship with your disability identity changed?

JIM: That’s a wonderful question. You know, [chuckles] so, when I was 15 or 14, actually, at Camp Jened, I met Judy Heumann. And Judy had been a camper at Camp Jened and then became a counselor. And Judy had, I guess in the summer of ’71, she had just previously prevailed in a lawsuit against the New York City school district. ‘Cause they wouldn’t give her a teaching position because she had post-polio and used a wheelchair. And her involvement in doing that was really kind of a real kinda beacon for me, and she was one of the early people with Disabled In Action in New York. And so, I became active in high school. When I went off to college, I helped found the Disabled Students Union at UC San Diego and stayed politically active.

But out of college, I got a job at the Berkeley Repertory Theatre as their resident sound designer. And I really had no time for anything but my job and you know, laundry. But I kinda drifted away from my activism because I really needed to do whatever I could to focus on my career. And I felt bad about that. I felt like I wasn’t really contributing the way that I wanted to.

And interestingly enough, in one of our interviews we’ve done with Judy Heumann for Crip Camp, she said, “Oh, Jim, we all had our eyes on you.” It was kinda like saying, “You had a real job.” Not that the jobs at CIL or at WID or other places weren’t real jobs, but they saw me out there really as excelling in a business in which I was really just yeah, I was the only person in a wheelchair doing what I was doing, that I was aware of.

REID: Right.

I’m here with Jim LeBrecht. We’ll be right back.

JIM: I’m here with Reid, and we’re gonna take a short break.

[rock music break]

Top 10 signs you’re watching a BASIC disability documentary

REID: We have the top 10 signs you’re watching a BASIC disability documentary. If you see three of these in a flick, then that shit is BASIC:

10.  The main character with a disability is interviewed less than his or her family or friends.

9.  There is an Image of a cat scan that is used with voiceover explaining a specific condition.  

8.  There’s a scene where a person with a disability gets out of bed and brushes his or her teeth.

7.  The disabled person is the only one subtitled.

6.  Family member explains how their loved one’s disability has transformed their own lives.  

5.  The filmmaker thinks he or she is the first person to realize disabled people are sexual.

4.  Anyone at any point calls someone with a disability inspirational.  

3.   A doctor’s appointment scene.

2.  A person with a spinal cord injury explains where on their body their injury occurred and what that means. Think T- # something.

And the number 1 sign that you’re watching a basic disability documentary: At the end of the movie, you realize that shouldn’t have been a movie.

[rock music break]

JIM: The dulcet tones of Teddy Pendergrass.

REID: Were you ever a DJ?

JIM: I would’ve loved to have done radio.

REID: You have a great voice for it.

JIM: Yeah, I have a great face for radio too.

REID: Yeah, yeah.

JIM: So, it’s, that’s an old joke. That one goes back to the ‘60s.

REID: I have a great voice for closed captioning.

BOTH: [laugh]

The documentary Crip Camp

REID: So, Crip Cramp.

JIM: A couple of years ago now, Nicole Newnham and I came together to do this documentary called Crip Camp. And it’s a documentary. It starts off at a summer camp I went to in the very early ‘70s in the Catskills of New York, Hunter, New York. And it was a really revolutionary summer camp. And you know, imagine a summer camp for the “handicapped” run by hippies. You kinda get the picture that it was a really kind of you know, kinda broke a lot of the stereotypes of what it was like to go to a summer camp for the handicapped. We weren’t patients. We were campers. We weren’t people that had to go to bed at 8:00. We were people who were staying up all night, listening to music with the counselors. And I had heard rumors that you could smoke dope with the counselors, so I said, “Dad, I wanna go to a new summer camp next year.” “OK, Jim. That’s fine.”

We’re really kinda looking at the camp and the fact that you can’t strive for a better life if you don’t know it exists. And this is one of the things we learned at that camp. And that Berkeley, with the Center for Independent Living, provided the kind of support that people needed to live independently. And that’s why people were drawn to Berkeley from my community. And so, we’re gonna look at the early days of CIL, Independent Living Movement, and then also look at the 504 sit-in. Because so many people from Camp Jened were working at CIL and a number of people who were on the inside at the sit-in at the federal building.

And then from there, the coda is well, kinda what is the aftermath of this time and this experience? And what are people’s lives now? And how did this experience really effect them? We’re not talking about just campers. We’re talking about counselors and staff members. And I’m just a really big believer that it’s a universal story: That you have to know a better life is possible. And with really not a huge amount of support, people are able to achieve amazing things and have really wonderful, fulfilling lives. Not just fulfilling for them; fulfilling for other people that are their friends and they come in contact with. And it’s a very small price to pay to make this all very achievable.

REID: Thank you so much, Jim. I really appreciate you coming in.

JIM: I really appreciate the time with you. Thank you, Reid.

[rock music break]

AJ Murray Introduction

REID: One of my guests today is AJ Murray. I was amazed at AJ’s acting ability as he played a man with cerebral palsy going to film camp in the film Becoming Bulletproof. Then I realized the film was a documentary and that AJ was a man with cerebral palsy going to film camp. Nevertheless, Daniel Day-Lewis has nothing on this dude.

[Becoming Bulletproof trailer plays; plucky music in the background]

AJ MURRAY: You never really see anybody with a disability on TV.

DIRECTOR: All right, AJ. Action.

AJ: I don’t know if I’m crazy, but my dream is to become a professional actor.

REID: Welcome, from Atlanta, AJ.

So, the first documentary you appeared in was Becoming Bulletproof. Sounds like a sequel to The Terminator. Were you a cyborg?

AJ: Well, it depends on who you ask. Let’s just say I was a willing participant.

REID: So, for those of you who haven’t seen the documentary Becoming Bulletproof, it’s about a film camp for adults with disabilities where they make films. So, it was a movie inside of a movie that is now the topic of our podcast. Watch out for that rabbit hole. And AJ, you played the Mayor. Did you have any sex scandals?

AJ: No. I wish I had. I’m a very clean Mayor, a very clean and pure Mayor who just does his job to serve the people of Prairie Town.

REID: You sound like the typical politician that we shouldn’t trust.

AJ: [chuckling] Well, I hope the— I don’t mean to make it sound like that. Although, I’ve heard that before.

About being featured in the documentary Becoming Bulletproof

REID: This episode, we’re talking about documentary portrayals of people with disabilities. And you were the main subject for Becoming Bulletproof. Do you think the film fell into any tropes that we typically see when portraying disability?

AJ: I don’t think so, but I know that I can be a little impartial. It was a long process for the director getting this story on camera and to the screen precisely because the directors of Zeno Mountain Farm didn’t want like any typical portrayals that you see of people with disabilities. I know from a first-hand experience that there was several hours and hours of discussion about how this community and group of very close friends was gonna be portrayed because this is something that we all care about.

REID: There were very intimate parts of the film that involved your daily routines. What made you so open about filming them, and do you regret it?

AJ: No, no, not at all. As a matter of fact, to me, that was absolutely at the forefront of telling my part of the story in the documentary. Because I knew that what the director, Michael Barnett, was trying to get across, I had no problem showing my showering. I had no problem. You know, there’s spots in the film where I talk about my sexuality and my sexual frustration. I had no problem talking about those things or showing my feeding. Why? Because that’s a part of everyday life. Not that every person with a disability, but I knew that this could be one glance into a world that’s not really in the mainstream. So, I wanted to be as transparent and as open as possible.

Current and recent TV work

REID: So, what are you working on now?

AJ: I did an episode of Speechless! I got to work with Micah Fowler and Minnie Driver. It’s a really funny episode. It’s the season finale, and—

REID: Did you did you get Minnie’s number?

AJ: No! You know, of course, you always think about that, but you wanna, you know, I wanna remain a gentleman. I did, however, manage to get a hug.

REID: That sounds well worth an episode.

AJ: She is incredibly sweet and incredibly warm, very, very funny. And Micah Fowler is just the light of that set. He was always giving really high compliments and praise. He’s a really, really good, solid young man. So, shout out to the whole Speechless cast and crew and definitely Micah Fowler and Minnie Driver.

REID: Shifting gears a bit, you appeared on this season of Drunk History, the episode on Judy Heumann and the 504 sit-in. And I don’t mean to put you on the spot, but I was wondering if you could recite the line you had in the episode.

AJ: Fuck you.

REID: Uh…excuse me?

AJ: Fuck you!

REID: [chuckles] Um I uh I don’t know what I did to offend you.

AJ: The line was…fuck you!

REID: I see. I see.

Well, AJ, I really appreciate your time. Thank you so much for today.

AJ: Thank you so much. I’m really, really stoked to be here, and I hope in some capacity, we could do it again.

REID: I think we must!

AJ: Yes, we should.

[rock music break]

REID: I wanna read a post AJ recently wrote on Facebook: “Growing up being a TV geek and a dreamer, I’ve always yearned to see someone like me on television. Not just brown skin, but wheelchair, spastic, and embracing themselves as they are. Not wanting to be someone else, but proud and accepting of themselves. Not making excuses or trying to be something they’re not. Not focusing on being what society deemed as ‘the norm,’ just representing their version of normal. This show Speechless has meant the world to me ever since I found out about its conception. I voiced my request to the universe, and I must’ve burned the ears off all of my friends and family on almost a daily basis, talking about how much I wanted to be a part of the groundbreaking show on ABC.”

Well, tonight I watched myself on the season finale, and I loved it. I embraced every part of me, and I am proud of the cast and crew and viewing audiences for allowing, supporting, and redefining what normal truly is.

May Season Three continue opening doors and changing the fabric of our world as we realize we’re more alike than we are different.

Wrap-up and credits

Basic Able is presented by Through My Lens and made possible through a grant from the Ford Foundation. Producer of Basic Able is Lyntoria Newton, executive producer Dan Lee, camera Daniel Chávez Ontiveros, captioning Cheryl Green. Visit throughmylens.org to find out more about how we’re disrupting media portrayals of disability and how to get involved.

This is Reid Davenport reminding you that, in the words of Coolio, you gotta get up to get down. Thank you for listening, watching, or reading Basic Able. Till next time.

[Spaghetti Western-Tarantino-esque music]

 

 

Episode 03: The Judy Heumann Episode

A message from our sponsors

REID: A word from our sponsors: Disability Love Dating Service. Do you want to find love and compatibility with someone like you? Then join Disability Love, and start searching people with the same diagnosis as you for free. We match you based on 87 medically intrusive questions to find your perfect body match. Disability Love: Because you’ll have so much to talk about.

[painfully sappy music]

Introduction

On this episode, we’ll be talking, listening, captioning, reading, however-way you communicate-(ing) about Judy Heumann, the mother of the Disability Rights Movement. I wanna make a joke about her but don’t want her to ground me like the last time. This is Reid Davenport. This is Basic Able.

[Spaghetti Western-Tarantino-esque music]

I was at a conference last year, and I met this guy who had lived in D.C. I told him I used to live there and about this podcast, and he said, “Oh, I have this great story for you.” He said that he used to take the bus to work, and every morning, there was a woman who used a wheelchair on the same route as him. This woman was so nice and so friendly. I think they exchanged small talk now and then. He said one day, he was walking past the Smithsonian Museum of American History, and on its massive steps leading up to its entrance was a portrait of his bus-pal, who was of course, the legendary Judy Heumann.

Judy Heumann sued New York City for the right to teach in the late 1960s, formed Disabled in Action in 1970, helped orchestrate a 28-day sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare: The longest federal building occupation in U.S. history. She has served under Presidents Clinton and Obama, was the first Disability and Development Adviser at the World Bank, and is currently a fellow at the Ford Foundation. I would continue, but my computer has just literally ran out of bullet points. Goddamn it, Judy!

[rock music break]

So, here we have in the studio, the one, the only Judy Heumann.

JUDY: [chuckles]

REID: Judy, thank you for coming on.

JUDY: It's great for me to be here especially as the one and only. Although actually, I've been looking up online, and there's another Judith Heumann. But I don't think she has a disability.

REID: No, we should go find her. So many people refer to you as the Mother of the Disability Rights Movement. So, if I swear, will you wash my mouth out with soap?

JUDY: Yes, my parents would've done.

 

Overarching issues facing people with disabilities and community organizing

REID: What is the most overarching issue facing people with disabilities today?

JUDY: A traditional answer would be we need to be organizing more, we need to have stronger movement, all of which I agree/ But I think in a little more than a year, Trump and his people have come in and are making people question so many things and distrusting each other.

REID: Is there any credence to the notion that Trump is ironically strengthening these movements?

JUDY: Well, I agree with you that, when you look at the Women’s Movement and the organizing of women and how the Women’s Movement also is reaching out more into the disabled women’s community, I think those are very positive. The amount of work that the disability community had to do last year to fight against proposals that he was putting forward in the area of healthcare and the successes that we had, I think was very, very important.

Yes, we’ve benefitted because we’ve seen our ability to organize rapidly in, I think, a very positive way. Yes, we’re working more with other rights-based movements, and we have so much more to do to fight off you know, the repressive actions that they’re moving forward with.

REID: Now you brought up the Women’s March, and there’s been a lot of criticism around the Women’s March about it being especially white, especially straight. Do you kind of see the same issues within the disability community?

JUDY: It goes without saying, I think, in the disability community that people from different racial, ethnic, and religious backgrounds are beginning to have their voices heard more than in the past. I think the movement had been, in the past, very white. People who have similar problems gravitate together, and they work with people they know. And so, some of the issues in the communities of separation and segregation also, I think, has had an adverse effect on being able to bring groups together who didn’t, on a regular basis, break bread together.

Democracy is something I believe in very strongly, both because my parents you know, escaped persecution in Germany, but also because I know as a woman, as a Jew, as a disabled Jewish woman, that discrimination against one that goes unfought results in discrimination against others.

REID: We have Judy Heumann in the studio. We’ll be right back.

[glitchy rock music break]

No! Don’t do that!

And now for another installment of, NO!  Don’t do that!

Your favorite film is Temple Grandin. You see a woman in a coffee shop wearing an Autistic Empower t-shirt. Surely, you think, she loves Temple Grandin as well. Should you approach her and start a conversation about the film? NO! DON’T DO THAT!

[glitchy rock music break]

#howtopissdisabledpeopleoff

A hashtag has recently emerged that really and truly warms the cockles of my heart. The hashtag is howtopissoffdisabledpeople. Man, I feel so warm and fuzzy inside. I have the pleasure now of reading our favorites. Some words have been added or removed for clarity.

Alice Rowley tweets: “When a person says, ‘At least your legs don't get tired from walking around, you get to just sit’." Alice responds, “Bitch, you hop in a manual wheelchair and navigate uneven sidewalks all day, then get back to me about how your hands, arms, and back feel.”

Teal Sherer, who is the star and creator of the web series My Gimpy Life tweeted: “Putting your hand on my head while I’m grocery shopping and praying to God to heal me.” I guess it didn’t work for Teal.

Damon Lord tweeted: “AIRPORT: We're taking your blind white cane away from you, no offensive weapons on the flight.

ME: Fine, but you'll need to replace it, and provide me with someone to guide me around the airport.

AIRPORT: Um... You can keep your white stick.”

JD Weaver tweets: “Say ‘I had a broken leg once and so I can relate.’ ‘I ate broccoli once doesn't mean I’m broccoli’.” [delighted laughter]

Heather Davidson writes: “People say, 'You don't look disabled, you are so pretty’.” Well, Heather. I get that all the time as well.

Gregory Mansfield writes: “The accessible bathroom that's down a flight of stairs.” [laughs] It happens more often than you think.

Wow. I feel better. Don’t you guys?

[rock music break]

Taking on disability rights activism

We’re here talking with Judy Heumann.

When you were five, you were not able to be admitted into public school because they called you a fire hazard. And then, 15 years later, they said it again when you were trying to teach. Then you took them to court. Are you proud that you proved you're a different kind of a hazard to them?

JUDY: Yeah, I think when I decided, when I was going to college, that I wanted to be a teacher, and I knew that was gonna be difficult because I didn't know any other people who had gotten a teaching license in New York City who were wheelchair users at that time. So, going to court. And basically, the Board of Education settled out of court. We had the first African American female judge, Constance Baker Motley. And so, she kind of reprimanded the Board of Ed and said, "I strongly encourage you to do a review of why you just denied Ms. Heumann her license." And they did, and I got my job.

REID: The million-dollar question, which I think, if you’re within the disability community, you ask yourself over and over again: Why is the Disability Rights Movement not equivalent to movements like the Civil Rights Movement, the Suffragist Movement, and why are people with disabilities still largely not seen as a marginalized minority?

JUDY: We’re a very diverse community, as I’ve said over and over again. And when you look at certain things like many families where there is a disabled person, they may be the only disabled person in that family, and I think that has an impact. If you’re a woman, if you’re African American, if you’re Latino or Asian or Native American or Polynesian or whatever community you may come from, typically, your family is similar to you. We’ve looked at disability for so long as something which we wanna prevent, we wanna cure.

As we worked on Section 504 and the ADA, we recognized we needed a movement. So, yes, a blind person may need a, b, c, and a deaf person may need d, e, f, and so on, with a physical disability may need three other things. But there’re also things that we will have in common. And that what we need to be able to do is fight together to say that we oppose discrimination, we are fighting for the rights of all people, and that we’ll also fight with other movements.

The growth and development of the Disability Rights Movement is occurring more exponentially than it did before. And as our movement grows, and as we enable other people to understand that discrimination against disabled people and lack of fighting against that discrimination from the Civil Rights Movement also enables discrimination against others.

Reminiscing about Ed Roberts

REID: Ed Roberts, another giant in the Disability Rights Movement, you knew him well.

JUDY: Right.

REID: Could you talk about him a little bit?

JUDY: Ed was a big thinker. You know, Ed could articulate a vision of what should be. I mean, Ed… he loved sports, he loved politics, so he could talk to a broad range of people. He was a big flirt, and he really helped people—non-disabled people and disabled people—kind of go to a different level.

Ed Roberts used a motorized wheelchair. He was able to use one finger. He had had polio when he was 14. So, he wasn’t able to walk, he couldn’t use his arms or hands, and he used a respirator, not all the time. But as he got older, he used a respirator all the time. So, he had a plastic tube in his mouth that helped him breathe. And when he went home, he would go into something called an iron lung. And people would approach him, and he knew that they would kind of look at him and be thinking, “I could never live my life like that.” And he could really draw people in with his eyes. He had great eyes, and he had a great smile. He was very smart and very articulate. So, he would kind of disarm people.

When he first had polio, the doctors basically told his mother, Zona, they’d be better off if he died because if he would live, he would be a vegetable. So, he always liked to tell this story that when he testified at hearings—congressional hearings or state hearings—he loved to say, “Here I sit before you, as a vegetable.”

REID: [chuckles]

JUDY: “And I’m an artichoke: Prickly on the outside, with a big heart in the middle.”

He was willing to fight the system when he believed in something. And so, when he became the Director of the Department of Rehabilitation in California, when Jerry Brown was Governor the first time, he did things that the federal government, for example, said were not permitted. So, he used a certain part of funding from the federal government to set up 10 Centers for Independent Living in California, and he identified a couple of other state Directors who didn’t have disabilities who were interested in the whole concept of independent living. And so, like Ed had done here in California, they also used some of the same monies that the federal government was saying couldn’t be used to set up CILs. So, Michigan and Massachusetts used some of their money the same ways Ed had. So, we saw the development of Centers for Independent Living in three states before the federal government had gotten involved at all.

Rapid fire questions

REID: OK, rapid fire time. Better boss: Bill or Barack?

JUDY: Kind of can’t compare because of my jobs. They were equally good.

REID: Brooklyn or Berkeley?

JUDY: Brooklyn.

REID: ADA or 504?

JUDY: 504.

REID: Pancakes or waffles?

JUDY: Pancakes.

REID: Judy Heumann, everyone.

JUDY: Thank you so much, Reid.

REID: Thank you.

JUDY: I look forward to doing this again.

REID: Awesome!

[rock music]

Wrap-up

This is supposed to be a satirical podcast, but I need to take a break from that for just a second. Please bear with me. I am constantly reminded that I stand on the shoulders of giants, whether it’s my access to education, employment or just living my life. One of these giants appeared on my show today. In the 60s and 70s, when Judy Heumann began her quest for equal access, there were very few, if any, giants for her to stand on. But she nonetheless cleared her path. Judy Heumann should be a household name in the U.S., mentioned in the same breath as the Susan Sontags, the Harvey Milks. How will we know where to go when we don’t know from where we came?

But the essence of this episode is not about the wrongs of the world. This episode is about realizing your ability to make those wrongs right because this episode is about Judy Heumann.  

[rock music break]

Basic Able is presented by Through My Lens and made possible through a grant from the Ford Foundation. Producer of Basic Able is Lyntoria Newton, executive producer Dan Lee, camera Daniel Chávez Ontiveros, sound Isara Krieger, captioning Cheryl Green. Visit throughmylens.org to find out more about how we’re disrupting media portrayals of disability and how to get involved.

This is Reid Davenport reminding you that pickles are just old cucumbers. Thank you for listening, watching or reading Basic Able. ‘Til next time.

[Spaghetti Western-Tarantino-esque music]


Episode 02: Breaking News: The News is Broken

Introduction

REID: On this episode, we’ll be talking and listening, captioning, reading, however way you communicate-(ing) about the news media, for years, the top scapegoat choice for politicians, celebrities, and people with too much time on their hands. (Think great-uncle Clarence.) I’m none of these people. I don’t mean to brag, but nevertheless, let me be frank: When it comes to disability, I’m with Uncle Clarence. Breaking news: This is Reid Davenport. This is Basic Able. And news media, we are coming for you.

[Spaghetti Western-Tarantino-esque music]

People with disabilities are often asked to dispel ignorance around disability at very inappropriate times: Waiting in line at the coffee shop, at the gym, at a cocktail party. And I am fully aware of me explaining this to you is ironically meta. Wait for it. Nevertheless, this segment is a free pass for those who want to keep up. In return, I ask that you please refrain from asking me during our first conversation, in horrific curiosity, how I shave. The answer is, “With an extremely sharp blade and my eyes shut.” So, without further ado, here’s Basic Able’s very first teaching moment.

[after-school special sappy music break]

So, so, so many tropes that the media goes towards when talking about disability. Back in a different lifetime, I was a reporter. And we didn’t have that great of a break up. But one of the things that really helped me through it was writing this poem about the media. It goes something like this.

News media, oh news media,

What are we to do,  

When it comes to disability,

You need to get a clue

The disabled athlete that gets into a game

You talk about the standing ovation,

Even though she could quite possibly be a jerk,

She’s still your inspiration,

You write a review of a restaurant,

It has a new Michelin-rated chef,

While his food is world-renown,

You think it’s more interesting that he’s deaf,

It was a joyous occasion, a beautiful day,

The bride was far from salty,

But you insisted nonetheless that she SUFFERS FROM

Cerebral palsy

Love (kind of), Reid.

[after-school special sappy music break]

Introduction to Lawrence Carter-Long

Here with me now is an award-winning media guru. He has been a radio host, curated Turner Movie Classics series on disability in the movies, and has recently began his job as the first-ever Director of Communications for the influential Disability Rights Education and Defense Fund. Welcome, Lawrence Carter Long.

LAWRENCE: Thank you, Reid. It’s a pleasure to be here, man.

REID: Yeah! Thank you for coming.

So, we’re talking about disability in the news, and I guess my first question is, “What the fuck?”

LAWRENCE: [chuckles] Well, [laughs] I wish there was a simple answer to that. Disability usually fits in their minds—the minds of media editors, producers, writers, folks like that—into a very narrow, prescribed sense of what it can or can’t be. Half the times, the story is written before they even talk to you, right? So, disability’s allowed to be tragic. It’s allowed to be heroic. It can be inspirational, right? You can be, a disabled person can be a prop in somebody else’s story, you know, like the non-disabled person that asked the student that’s in their class who has Down Syndrome to go to the prom with them, right? And they never interview the person with Down Syndrome. So, in their minds, that’s what disability is, and if your story is something that doesn’t fit within those lines, if it’s outside those lines, often, they don’t know what to even do with it.

Stephen Hawking memes where he can walk after death

REID: So, in March, we lost Stephen Hawking. And many in the community have been critical about how many news outlets have been covering his death. The first time I saw you mention it was you tweeted a cartoon where Hawking was walking towards the celestial abyss—

LAWRENCE: [chuckling]

REID: —without a wheelchair, leaving his chair behind. Why is that so problematic?

LAWRENCE: Well, everything that Hawking did as a scientist, he did as a disabled scientist. So, to do a cartoon where the wheelchair is empty, and you’ve got Hawking now as a non-disabled man walking off into the cosmos basically ignores that fact. It erases most of his history, a significant chunk of his history.

When you think Stephen Hawking, yes, you think about the cosmos, you think about his books, but you also think about that distinctive wheelchair. More than that, you think about the distinctive voice that he had. And I’m talking literally, all right? Whenever you hear that kind of robot voice, right, that communication device, I don’t care if it’s on the Big Bang Theory or if it’s on The Simpsons, you know that that’s Stephen Hawking, right? Those devices were the ways that he operated in the world. They gave him independence. And to take that and to reduce him only to somebody who walks or somebody who doesn’t walk, I don’t think is fair to Hawking, and it’s not fair to the disability community either. So, it deserved to be called out.

REID: What if the act of walking is not relevant in this afterlife? And therefore, his wheelchair is not needed anymore, that he can move with and like everybody else?

LAWRENCE: I think if his wheelchair is irrelevant in the afterlife, which Hawking didn’t believe in—

REID: [chuckles]

LAWRENCE: —by the way. He was an atheist, right?

REID: Right.

LAWRENCE: The act of walking probably isn’t relevant either, all right? You become stardust. Ashes to ashes, stardust to stardust. To put sort of those cosmological things that are beyond mere human understanding—or at least my understanding—into a framework which suggests oh well, at least now Professor Hawking is free from his wheelchair, right, he’s been liberated from his wheelchair is not only accurate, it’s not fair either.

One of the things that comes out about Hawking once you research his life, the guy had a wicked sense of humor. The biographer for him, what she said was that he had this penchant for running over the toes of people who got on his nerves. And that included Prince Charles, right? No one was safe. Nothing was sacred. [chuckling] And she said that his biggest regret was that he didn’t have the opportunity to run over Margaret Thatcher’s toes, you know? And I guess if there’s one thing that I could grant Professor Hawking maybe, if there is an afterlife, I hope he’s just you know, running tracks like back and forth, day in and day out. It might be his heaven and her hell. I don’t know.

REID: There’s a cartoon for you.

LAWRENCE: [laughs]

[rock music break]

REID: We have Lawrence Carter-Long here, and we’ll be right back.

And now, a word from our sponsors.

FrontSeat rideshare service is proud to announce FrontSeatChair, a fully accessible option for passengers using wheelchairs. Starting this June, we’ll have nearly half a dozen FrontSeatChair vehicles in nearly half a dozen major cities. We anticipate upwards of a 25% pickup success rate. FrontSeatChair: The best option for wheelchair riders because it’s your only (fucking) option.

[rock music break]

#SaytheWord campaign

REID: Can you talk about your #SaytheWord campaign?

LAWRENCE: Yeah! It happened during one of the final State of the Union addresses by President Obama. And I had worked with folks, colleagues in the White House who had done everything humanly possible to make that State of the Union address as accessible as it could be. So, there was Audio Description, there were captions, there were, you know, you could play with the fonts. There was so much that could be done to make sure that all Americans could watch that speech and participate.

That particular speech, President Obama, he’s listing all the identity groups that you can mention. He’s mentioning the LGBT community, he’s mentioning women, he’s mentioning Latinos, he’s mentioning Asians, he’s mention, you know. And I’m sitting there with bated breath, thinking he’s gonna do it. He’s gonna do it. We are finally gonna arrive! He’s gonna mention the disability community. And he wrapped the speech up, thanked the audience, everybody applauded except for me. And I’m thinking, wait a minute! You just talked about disabled people in your speech. Why couldn’t you list us as a group?

And so, I basically tweeted out this barrage of this little fit that I had saying, “Come on, man! You’re the president of the United States. The very least you could do is say the word, #SaytheWord ‘disabled’.” I started sort of revisiting it time and time again on different Facebook statuses. And the one that I remember most distinctly was I said, playing off the Internet meme “see the person, not the disability,” and I said, “If you see the person, not the disability, you’re not getting the complete picture. Discover what everything that you’ve been missing. #SaytheWord disabled,” right? And this reporter from NPR, Barbara King, saw it, and she said, “What do you mean by that? I always thought that we were supposed to you know, call people differently-abled.” And we got into this online discussion. And it just got a whole life of its own from there.

REID: I prefer handi-capable. [chuckles]

LAWRENCE: Handi-capable. You know, if you get, if you use— I think people should be allowed to use the word handi-capable but only if it comes with a utility belt and a cape, right? It sounds like the device that you know, Supercrip and Poster Child ride around in—

REID: Yeah!

LAWRENCE: —kind of like the Batmobile. Right? Yeah.

REID: Yeah, yeah, handi-capable.

LAWRENCE: Or it could be a kitchen utensil, you know? It slices, it dices, it makes julienned fries, you know? It’s a—

REID: Yeah. It cuts your fingers off.

LAWRENCE: Especially hurt.

REID: [laughs]

LAWRENCE: But we need more disabled people.

REID: Yeah! OK!

LAWRENCE: The census is coming up, right?

Person-first language versus identity-first and community-first language

REID: I think a lot of people, reporters included, get caught up with person-first language versus identity-first language. How do reporters approach it?

LAWRENCE: It depends on the reporter you’re talking to. Much like the disability community, I don’t think there’s any real consensus there. It depends on where somebody is in their own evolution, and I think it also depends on who they’re surrounded by, who their community is, right? You’re gonna have various differing opinions depending on who that is. And so, what I’ve learned to do, because this is the important seed, I think, that has come out of that whole discussion now for three years, which is whether it’s prefix-first, “disabled person” or person-first, “person with a disability.”

The most important thing that any reporter or any person who cares about these issues can do is can the euphemisms, forget the silly nonsense like “differently-abled” or “physically challenged” or you know— One of the ones I saw recently was, “exceptional abilities.” And I’m like, what is it? Riding a unicorn while juggling? Like, like you know, that would be exceptional.

REID: That would be very exceptional.

LAWRENCE: That would be very exceptional. But it doesn’t relate to my life whatsoever, right?

REID: Mmhmm.

LAWRENCE: So, I think if we can strip down all the nonsense and simply say “disabled,” whether you’re prefix-first or person-first, right. Whether it’s identity or community. ‘Cause a lot of people, as I’ve talked about this issue, say it’s not only about identity-first language, but it’s about community-first language, that I’m with a group of millions of disabled people, and that I wanna put the community first rather than me. There’s this notion in the United States that says in order to matter, in order to be worthwhile, you’ve gotta pull yourself up by your bootstraps. You’ve gotta be a person with a disability, right? But what that does is that isolates a person, and it keeps them away from community.

I didn’t get involved with disability community until I was 35 years old, yet I’d had cerebral palsy since I was born. I wonder to this day what I could’ve learned if I’d gotten tapped in to disability community sooner, and people could’ve shown me the ropes. I didn’t get that option because the proclivity that we had when I was growing up in the 1970s, in those dark ages years ago, was you know, you had to be as normal as possible. It was only when I realized I was never gonna be normal—cerebral palsy or not—that I was able to cast that aside, and then sort of move into my own life. Other people shouldn’t have to wait that long.

REID: Right. Unlike you, I caught my cerebral palsy when I was 21 in Cancun.

LAWRENCE: You got it in Cancun?

REID: Yeah!

LAWRENCE: Was it a good— It must’ve been a hell of a party. [laughs]

REID: Yeah! It was totally worth it.

LAWRENCE: How many margaritas was that?

REID: Oh, ah, it was many margaritas and some other stuff.

LAWRENCE: [laughs]

REID: But we’re we’re not going there.

LAWRENCE: [chuckles]

Pick the fake headline game

REID: OK. So, I set up a little game for us.

LAWRENCE: Ooh, fun.

REID: And by us, I mean you.

LAWRENCE: [laughs]

REID: I have a set of headlines. Two of them are real; one came out of my butt.

LAWRENCE: [laughs]

REID: Your task is to pick the one that is fake. Are you ready?

LAWRENCE: Um, as ready as I’ll ever be, Reid.

REID: So, we have Young Gymnast with Spina Bifida Dazzles Crowd. Golfer’s Severe Disability Gives Others Hope.

LAWRENCE: What, now what with a severe disability?

REID: Golfer’s—

LAWRENCE: Golfer’s.

REID: So, I’ll say it again. Golfer’s Severe Disability

LAWRENCE: Oh! OK.

REID: —Gives Others Hope.

LAWRENCE: So, the fact that this golfer has a severe disability makes people hopeful.

REID: Don’t interrupt my game.

LAWRENCE: All right. All right. I’m sorry. I’m just, I’m trying to understand how that even works.

REID: Middle Schooler with Down Syndrome Inspires with His Wrestling.

LAWRENCE: See, I’m torn here. When I was a kid, I don’t know that they let middle schoolers wrestle. And I’m not sure how golf could inspire anybody to anything. So, I think I’m leaning toward #3.

[the “you lose” buzzer]

LAWRENCE: Ah!

REID: It’s #1.

LAWRENCE: #1!

REID: Yep.

LAWRENCE: Why? Because biffers don’t do gymnastics?

REID: I don’t know!

LAWRENCE: [chuckles]

REID: #2 was in the Norwich Bulletin.

LAWRENCE: Norwich. Norwich like England, Norwich?

REID: Yes.

LAWRENCE: OK.

REID: And #3 was in the Des Moines Register. Ready for #2?

LAWRENCE: Oh, we’re doing it again!

REID: Yeah.

LAWRENCE: All right. I haven’t embarrassed myself enough with the first one. All right. Hit me. All right.

REID: We have Running an Animal Shelter with No Vision.

LAWRENCE: OK. #2.

REID: California Boy with Cerebral Palsy Befriends New Pup.

LAWRENCE: All right.

REID: Dog With Two Legs Show That Disability Doesn’t Define You.

LAWRENCE: See, that headline doesn’t make any sense! Because if they’re mentioning the dog with two legs, they’re saying by the headline itself that disability does define that dog! Because if he had four legs, it wouldn’t be news.

REID: Answer the goddamn question.

LAWRENCE: [laughs] Sorry. That’s not a logic question!

REID: No.

LAWRENCE: All right. I’m gonna go with #3.

[the “you lose” buzzer]

LAWRENCE: Oooh! All right. Which one was it?

REID: Running an Animal Shelter with No Vision.

So, the California boy was a Fox affiliate in DC.

LAWRENCE: [chuckles]

REID: And the dog with two legs was in Bakersfield—

LAWRENCE: Bakersfield.

REID: —California.

LAWRENCE: See, that’s common in Bakersfield.

REID: Yeah.

LAWRENCE: Yeah.

REID: OK. Up for one more?

LAWRENCE: All right. Hit me. Hit me. I gotta get one of these.

REID: Differently Abled TV Hosts Inspire Viewers.

LAWRENCE: Reid, who did the story on you?

REID: [laughs]

LAWRENCE: No, OK.

REID: Very good.

LAWRENCE: OK.

REID: Lady Gaga Learns Sign Before Meeting Deaf Fan. Friendship Comes Calling For Blind Ham Radio Operator On Christmas.

LAWRENCE: That sounds like a Lifetime movie. You sure Lifetime didn’t make that movie?

REID: Will you do it? I don’t know! I don’t know!

LAWRENCE: Yeah, it’s like ready and prime.

REID: [laughs]

LAWRENCE: I think Lady Gaga’s wealthy enough that she could teach, she could hire other people to learn sign language for her. So, I’m going with Lady Gaga.

[celebratory bell ringing]

REID: YEAH!

LAWRENCE: Yes!

REID: Yes, indeed!

LAWRENCE: Yes! All right.

REID: Lawrence Carter-Long, thank you so much.

LAWRENCE: Thank you, Reid. It’s been a pleasure.

REID: Appreciate it.

LAWRENCE: Good luck with the show, man.

REID: Great. Thanks.

[rock music break]

Reid strikes back against patronizing reporter in the National Review

REID: As I was putting together this show, I came across an article I had saved, which is dated January 18th, 2011. It’s entitled, “The Quiet Contender” by Robert Costa of the National Review. The article begins: 

“As others kept their distance, Tim Pawlenty took a knee. It was late, and most undergraduates had long since left the auditorium at George Washington University. But a lone young man in a wheelchair remained. He waited patiently near the door, his shoulders twitching. Then, as Pawlenty finished his last handshake with a clean-cut College Republican, he noticed the fellow at the exit and approached him. The student struggled to ask a question. Pawlenty, an athletic 50-year-old, dropped to his side.”

So, I just have a few suggestions for the reporter, Robert Costa.

First, when using a person with a disability as a pawn to humanize someone else, you should go all in and medicalize his or her condition by naming what the person’s disability is.

Second, if the pawn is a wheelchair-user, you should include if it’s a manual or electric wheelchair. Because then we’ll know more about the nature of his or her disability. Because obviously, that is vital to the story.

And lastly, you should interview said pawn. If you had, you might’ve found out that he, himself was a reporter. A reporter who is now a podcast host. And a podcast host who is now telling you I am not your pawn.

And that, Robert, is checkmate, twitching shoulders and all.

[rock music break]

Wrap-up and credits

Basic Able is presented by Through My Lens and made possible through a grant from the Ford Foundation. Producer of Basic Able is Lyntoria Newton, executive producer Dan Lee, camera Daniel Chávez Ontiveros, captioning Cheryl Green. Visit throughmylens.org to find out more about how we’re disrupting media portrayals of disability and how to get involved.

This is Reid Davenport reminding you that you can, in fact, polish a turd. It just won’t look that different. Thank you for listening, watching, or reading Basic Able. Till next time.

[Spaghetti Western-Tarantino-esque music]


 

Episode 01: Sexy Disability Models

A message from our sponsors

REID: And now, a word from our sponsors.

[bright acoustic guitar music break]

Are you afraid your disabled or elderly loved one is going to take a nasty spill? Would you feel a whole lot better if there was a healthy dose of Big Brother to their independence? Then you need Keep ‘Em Safe. Unlike those necklaces that rely on the distressed individuals to press the button, Keep ‘Em Safe has a camera inside the wearable so you can keep an eye on them. And the wearable monitors velocity of the individual. So if they fall, an ambulance will automatically dispatch. Remember: No running! Keep ‘Em Safe. Because too much independence can be a bad thing.

[bright acoustic guitar music]

Introduction

On this episode, we’ll be talking, listening, captioning, reading, however way you communicate-ing about disability models. No, I’m not talking about disabled men who pose for GQ or disabled women who do the catroll. The models we’ll be talking about are less sexy, more nerdy, and therefore, right up our alley. This is Reid Davenport. This is Basic Able.

[Spaghetti Western-Tarantino-esque music]

For some of you, the thought of hearing the difference between the Social and the Medical Model of Disability makes you nauseous because you’ve heard it in so many lectures, read it in so many books, and constantly think about it as it relates to your life. Trust me: We’re not trying to emulate Disability Studies 101. So, you can put your hand down.

For other people, disability models sound dry and geeky, which is offensive. I’m not dry.

The Medical Model says that disability is borne out of one’s medical diagnosis. Whereas the Social Model says that disability is caused by society’s reaction to one’s medical diagnosis. Example: I know this man with cerebral palsy. He’s funny, he’s charming, he’s good looking, he’s a podcast host. But I digress. According to the Medical Model, his disability is cerebral palsy. It’s on me, I mean, on him to adapt and to overcome.

According to the Social Model, he’s disabled because of inaccessibility, employment discrimination, people’s awkwardness towards him, etc., etc.

After thinking for years about these two models, there is something that still disturbs me greatly: The question surrounding soup. For me, soup is out of the fucking question. That journey from bowl to mouth with a steady hand might as well be 50 miles of rocky terrain during an earthquake. And of course, soup is hot. So, unless I want third-degree burns on my face, I stay away from soup. Yes, I’m soup-phobic.

Now, according the Medical Model and my gut, which we’ve already established is absent of any soup, I can’t eat it because of cerebral palsy. According in the Social Model, I can’t eat soup because I don’t have the assistive technology to safely transport the soup to my lips. I have to admit though, it’s really weird talking about my lips with you. Anyway, soup. I’m confused.

Talking to Cathy Kudlick about disability models

Here to help me figure out the real reason why Grandma’s chicken noodle is so fucking ableist is Professor Cathy Kudlick.

Cathy Kudlick is a professor and Director of the Paul Longmore Institute on Disability at San Francisco State University. Her new book coming out soon is the Oxford Handbook of Disability History, which I am told is not just about how the City of Oxford deals with disability. Welcome, Cathy! 

CATHY: It’s great to be here.

REID: So, soup.

CATHY: First of all, the question might be, “Why eat soup in the first place?” The other way to think about it is to consider other ways of eating the soup: Should it be in a bowl? Should it be in a straw? Why not be able to eat soup the way you get to eat soup? [chuckles]

People are very creative about getting food into their stomachs. There’s this wonderful creativity and ingenuity and a real sense of force and power and flexibility and all of these really exciting things that people don’t think about when it comes to living the life of a disabled person. And I think Neil Marcus said it really well. He says, “Disability is an ingenious way to live.” I might not have the quote just right, but yeah. It’s close.

REID: We’ll have our fact-checkers check it out.

CATHY: Yes, that’s right. Yeah.

There’s a simulation exercise that you can do to understand what it’s like to be a blind person. And that the usual one is they put a blindfold on you, and you walk around. And you say, “Whoa! It’s dark,” or “I can’t find it,” or “Where am I?” And somebody leads them around, and it’s really, it’s gross. I mean, it’s a depressing and not a very useful exercise. It’s basically what it’s like to put a blindfold on. That’s it. It’s not really teaching you squat about blindness.

If you were gonna do a social simulation, you give somebody a white cane, a pair of sunglasses, and you’d say, “Go somewhere where you don’t know anybody. You don’t have to pretend you’re not seeing. You don’t close your eyes. And you just watch how people treat you because you have a stick in your hand, glasses on your face. Do they talk down to you? Do they ignore you? Do they talk to the person you’re with? Do they, you know, all of those things.” And that will get you at the social ideas.

Because the the average blind person, by the time they’ve gotten into the world, they’ve learned how to move around and get around by themselves. They’ve learned how to go to restaurants. They’ve learned how to do all the things that people don’t think they can do. So, you wanna focus on the social reactions and the weirdness that comes from when people don’t understand.

REID: Is there a new model that is emerging that will kind of replace the Social Model?

CATHY: I’m hoping we’re gonna get beyond models. That’s my dream, is that we go beyond the notion of a model. And you know, again, as I said, it’s kind of useful for teaching at the beginning, to get people to question their assumptions and move to a different place. I find models too confining, and it’s too…it’s too simple. And I think people are not simple.

Another message from our sponsors

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REID: Welcome to the first installation of, No, Don’t Do That! This is the segment of the show when we describe a situation. You, the listeners, will then be presented a question of whether you should a) do something or b) not do something if you were in that situation. Now, there are no wrong answers, but the only right answer is, “No, don’t do that!”

A woman is rolling up a steep curb cut in a manual chair with groceries in her lap. You ask yourself, should I push her up? NO, DON’T DO THAT!

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Cathy edited the recently-released book, Telethons

REID: I wanna talk about a book that was recently released that you edited: Telethons. I know that author Paul Longmore wasn’t just a colleague but a friend. He was one of the most, if not the most, prolific disability scholar. Can you talk about what it was like for you to continue his work?

CATHY: Mm. Wow. Yeah, that’s um— I’ve thought a lot about it. And I’m honored that you asked me that question. I haven’t really had a chance to talk about it that much. But it was um…[sighs] I mean, there was a piece of me that went on, not quite auto-pilot, but I just needed to get through it. It was a task. I knew it was a great book. I knew it needed to get out there into the world. The other piece was yeah, Paul was a friend.

I’ve gotta tell you the great Paul Longmore story about how I didn’t meet him. I said in an email to him: “Wow! I’ve never met a professor like this. This you know, it’s so great. And I, you know, I’ve never been able to talk to anybody about my disability, and I would love to talk to you about it.” No answer. No answer. One year went by. Two years went by. And I think it was almost three years.

So, I was at a conference, and I was at a session, and there was this guy that was really smart, and he was really funny, and he was very articulate and you know, all of these things. I thought, oh, that’s Paul Longmore. And I thought, I have to go and meet him. So, I crawled up a little. You know, I just felt like a little tiny worm. And I went up, and I said, you know, I introduced myself. And he says, “[gasps] Oh my god! I owe you a letter!”

BOTH: [chuckle]

CATHY: And we went to lunch afterwards. So, here we are, and it’s Paul, who didn’t have use of his hands and Cathy who barely has use of her eyes, in a restaurant you know, nice restaurant in a hotel, right? And the food comes, and I’m supposed to feed him. [chuckles] So, I take up my little spoon. He says, “OK.” And he was really good about kinda making me comfortable and do this. But I have no depth perception, so I’m just like brrrraaaaa, you know. And he’s like, “No, no! Over this way! Over this way!”

REID: [chuckles]

CATHY: And it and we just started laughing. It was so funny. And it was just this wonderful bonding experience. It wasn’t just about our ideas and our intellects, but it was really this kind of hilarious moment where our two disabilities kind of worked against each other, but they bonded us.

So, from that point on I mean, we were sharing ideas, and he would call me up, and we’d talk. And I would call him up when I had ideas. You know, we really exchanged work, and I gave him feedback, and he gave me feedback. And all along, heard about this telethon book through his whole, as he was writing it. And he would share little bits, but he wasn’t sharing a lot of it with me at that point.

And then you know, he died suddenly, and it was devastating for all of us. I mean, I can’t even, you know, I still don’t have words for it. It was just like this amazing intellect was no longer with us. He had once said to me in a conversation, “If anything ever happens to me, I would like you to be one of the people that really works on finishing my book.” And I thought OK, finish your book already, OK? [chuckles] ‘Cause I didn’t wanna do it. But then of course, he died.

So, I get files and files and files and files and files of this book. And it was intense because it was, conceptually, it was mostly done. It was you know, his basic ideas were there. Some chapters were really polished and really finished, and other ones were completely in disarray. Sometimes the footnotes were in the body of the book, and the body of the book was in the footnotes.

But I’d have these really intense moments where I’d be sitting there, and I knew Paul— Paul never met a quote he didn’t like. And I’m sitting there, and I’m having this debate with myself: Should I cut this quote? Should I not? And this is gonna sound really weird and metaphysical, but I felt him with me. It was the weirdest, most intense experience where you know, and I could almost hear him saying, “Don’t take that one out!” Or you know, “OK, you can take that one out, but put this other one in.” And it wasn’t always. I mean, it was, but it was a few times.

There were a few times when I came up with the perfect formulation in that book, and I’m the only one that knows where they are. But I knew they were perfect. And that was just such a satisfying thing. I said, “Yes! Paul would’ve said it exactly that way.” And I felt all proud of myself and everything for channeling this other person. And that’s really what it was. It was channeling another person.

I think he would’ve been proud. There were a few times where we had arguments about what I did, especially with the conclusion. But I had to go with what I had, and I had to go with you know, what other people were telling me. And I think he would’ve done some things differently, had he lived, but I have to honor what I had to work with. And I couldn’t second guess too much.

REID: Well, thank you for doing that. I mean, it’s a tremendous book. He was very dense, but at the end of being dense, he would sometimes pack like a punchline—

CATHY: Mmhmm.

REID: —to a joke. And this was no different in Telethons. Longtime MDA Telethon host Jerry Lewis wrote an op-ed, and he mentioned the dependence of children with MD on other people pushing their wheelchairs. To which Paul retorted, “This perception apparently screened out the widespread use of motorized wheelchairs.”

CATHY: Paul was one of the funniest people. And it wasn’t just around disability; he was just generally funny. He just would you know, kind of sit there. He had a lot of moral authority, and he would just say something, and it would just cut through all the garbage and be very funny but very pointed and extremely observant.

The upcoming Oxford Handbook of Disability History

REID: So, you’re coming out with a book that you co-edited. Can you talk about that?

CATHY: Sure. It’s called the Oxford Handbook of Disability History, and there’s three of us that edited the book together: Michael Rembis at Buffalo, and Kim Nielsen at Toledo. And the three of us are all disability historians, and we tried to get a snapshot of more international and kind of cutting-edge histories that we could find from talking to people that we know in the field.

Any book— I think what people don’t realize when a book comes out, it’s really, it’s not the newest thing; it’s probably the oldest thing in a way. Because you know, people work on a book, just like with a film, you work on it for a long, long time. Like when you look at the stars in the sky, you see these lights out there, and it’s great. But some certain percentage of them are already burned out in real life, but you don’t see it yet. And—

REID: You’re so uplifting. [laughs]

CATHY: No, but it’s not a bad thing. It’s gonna be great. I think it’s really, really an important intervention, and there’s some great articles in there. I’m very proud of the volume. I’m very proud of what we’re bringing to light.

REID: Thank you so much, Cathy. I really appreciate it.

CATHY: OK, sure.

Wrap-up and credits

REID: These are some sponsors we tried to reach out to, but they weren’t sure that our listeners would be interested in their products: Vintage Rotary Telephones, Hanes Socks with Individual Toes, Me Before You on Blu-ray, Colgate’s new Ultra-Thin Dental Floss, Spaghetti.

Basic Able is presented by Through My Lens and made possible through a grant from the Ford Foundation. Producer of Basic Able is Lyntoria Newton, executive producer Dan Lee, camera Isara Krieger, captioning Cheryl Green. Visit throughmylens.org to find out more about how we’re disrupting media portrayals of disability and how to get involved.

This is Reid Davenport reminding you that sometimes it’s better to be a bridge than it is to build one. Thank you for listening, watching, or reading Basic Able. Till next time.

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