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October 6, 2011 / Amanda Forest Vivian

Armchair Farmhouse #1: Clayton

I hope you guys don’t mind me creeping back on love-nos since I haven’t been posting here, but I am doing a PODCAST and I think it would be better to post transcripts here instead of on my regular blog, because I can hide them instead of having them appear on the main page of the blog and take up a huge amount of space.

My podcast is called Armchair Farmhouse and in it I interview people about why they do or don’t identify as disabled and what their history is with that identity. I only want to interview people in real life so I’m mostly going to stick to RL friends but if anyone reading this is near Cincinnati, you should totally let me interview you! I’m especially interested in talking to people who have diagnosed mental or physical health conditions but don’t consider themselves disabled. My first interview (which you can listen to here) is with my friend Clayton who has CP, ADHD, and general bad brains, and recently identifies as disabled but didn’t for a long time.

Armchair Farmhouse 1: Clayton
September 19 and September 20, 2011

Amanda: (sighs) Why is it…I hate that it always does the metronome.

(Metronome is turned off.)

Amanda: Okay, hello. My name is Amanda and I thought it would be interesting to do a podcast asking people who have disabilities whether they identify as disabled. I am currently at a point in my life where I recently graduated from college and am living with my friend Clayton. Um, right now Clayton and I are pretty drunk, we spend a lot of our time getting drunk and watching The Vampire Diaries. Um, what I think is interesting is that when I first met Clayton I didn’t think that I was allowed to consider myself disabled and I considered Clayton “my disabled friend,” which I hope you know ‘cause that’s kind of awkward to say now–

Clayton: No, I know.

Amanda: But um now I consider myself disabled and I know that Clayton actually doesn’t consider himself disabled so I think that he’ll be an interesting first person to interview in my interview. I’m gonna bring the microphone over to him cause he’s lying on the bed cause he’s really drunk. Hi Clayton.

Clayton: Hi.

Amanda: Wait you’re not next to the microphone.

Clayton: Oh, I’m sorry. Hey. Yeah.

Amanda: Okay. What were my questions?

Clayton: Your questions, I think, were…all right. “Do you consider yourself disabled?” and “At what point did you decide that you felt that you fit that particular category?” or whatever. Those were your two questions–you only had two. Those were the basic questions you came up with, after a whole bathroom break to think about it.

Amanda: I wasn’t thinking about that, I thought you were gonna think about them.

Clayton: It’s your interview, it’s not my interview!

Amanda: I know.

Clayton: I guess it’s our interview.

Amanda: I wasn’t thinking about them in the bathroom, I was praying in the bathroom.

Clayton: Well, I–okay–

Amanda: Your face looks weird.

Clayton: It’s cause you’re looking at it upside down, buddy, it’s okay.

Amanda: Okay. Sorry.

Clayton: All right. Uh, I do consider myself disabled in a technical sense, but I’ve always felt like there’s, um, sort of like a paper bag test for disabled people. And I don’t know, I don’t know whether I got this impression from other disabled people or from people who wanted to be supportive and accidentally gave me the impression that I wasn’t, like, disabled enough? I don’t really know who gave me that impression. Sometimes when I’m around people that I, that I sort of have been raised to view as “more disabled” I feel a little weird leveling with them about my disability ‘cause I sort of feel like I’m being, uh…like, like, I feel like I’m complaining? But uh, but, you know, I used to feel less comfortable with it than I am now, so I don’t know. I think I’m in a weird middle place.

Amanda: (coughing) Sorry, I’m not coughing on you. What were my other questions?

Clayton: Your other question was, “At what point did you decide that you, like, identified as disabled”–

Amanda: Well no, I mean I didn’t want to assume that people identified that way so I guess I wanted to be like, “at what point did you realize that you fit into categorize…CATEGORIES that some people would describe as being disabled.”

Clayton: I think I knew intuitively, like, always, but I really don’t think that I thought about how important it was to…take ownership of that particular…well, that sounds weird. I don’t feel like I felt like it was okay to identify as disabled until I met you in college.

Amanda: Really?

Clayton: I really do. Like, I–

Amanda: I mean, is it like because of me cause I don’t think I really did for most of the time we were friends.

Clayton: Well, I sort of feel like, you know, like, when I was in high school or whatever–you know, people really wanted me to think that I was like, that I could do anything or whatever, which is clearly not the case, like I’m not gonna, I’m not gonna, like, set a record in doing hurdles in the Olympics, it’s not gonna happen. And like, it’s okay to have a hard time with certain things. But, um, college was so difficult that I really didn’t have a choice, you know, and then I think when you became more politically aware, you know, I sort of admired the fact that you, that you, um, that you started to identify as disabled but you were able to define what that meant yourself? Instead of having, instead of taking on some sort of, um, or slotting yourself into a predefined category with certain limitations, you know, that were set, you know, independently of yourself. So I don’t know. Yeah, I feel like it wasn’t really until college.

Amanda: Yeah. Oh, okay. Were those all my questions?

Clayton: Those were the only two you mentioned.

Amanda: Okay. Do you have any other things that you would like to talk about for my imaginary interview with the imaginary Internet? What’s wrong with your face?

Clayton: It’s upside down, buddy.

Amanda: You look like Stefan Salvatore!

Clayton: I don’t know if that’s a compliment cause you kept telling me how ugly you think he is.

Amanda: He’s sort of grown on me.

Clayton: I, uh…

Amanda: So have you ever seen a microphone that looks like mine before?

Clayton: No I haven’t.

Amanda: Does it look kind of scary? Does it look kind of like an alien saucer, like, floating above you?

Clayton: I haven’t but you know I was gonna say maybe people with disabilities are in an awkward place right now.

Amanda: Why do you think that, Clayton?

Clayton: Only because, because, ideas like neuroplasticity are only just starting to sort of enter public consciousness.

Amanda: I don’t really know what that is–is that, like, that you can like change stuff when someone’s really young?

Clayton: No. Like, we used to think that you could only really determine the path of your neurological development, like, at a, before a certain age, and then you got to be a certain age and your brain, like, stopped–

Amanda: So does that mean that you could, like, do stuff and not be disabled anymore?

Clayton: I wonder, because you know, for instance I have ADHD–which you’re not encouraged to think of a disability because it’s not obvious to other people, but it is a disability–and they’ve done studies with things like meditation and they, you know, you can, like, when someone knows how to do it, obviously, you can hook ‘em up and you can watch them literally restructure the way that their brains work. So it’s really, uh–and now they know that certain behaviors or activities aren’t localized exclusively in certain parts of the brain and the reason that, for instance, that I move weird–I have cerebral palsy, for the people out there that can’t see me, you know, wobble around–

Amanda: You’re also lying down.

Clayton: Technically–yeah–technically, medically, the reason that I have difficulty moving around is that the area of my brain that’s supposed to tell my body what to do is damaged, but, like, they gave me that prognosis before they were aware that, like, people with severe brain damage could relearn how to engage in certain activities using other parts of the brain. Um, so I think people are in in a different place, and the attitude towards therapy is different too. You know, uh, it’s not so much the ‘80s and early ‘90s “no pain, no gain” idea, you know, it’s…it’s just different. And you got people…I keep telling you how into RJ Mitte [from Breaking Bad] I am even though I don’t watch anything he’s in. Because, you know, he clearly has CP, and his CP is supposedly more severe than mine, like, much more severe, and for people who don’t know, you know, he uh, when he was, I guess a lot younger he couldn’t really move around unless he used crutches and he had a lot of difficulty speaking, and now I’ve watched him and he doesn’t move that way anymore. So, yeah, in ’88 and ’89–I guess I was diagnosed in ’90–the prognosis was a lot more, uh, depressing, for people with things like CP. But I think it’s different now.

Amanda: Yeah. So why do you think that’s awkward–because you feel like you weren’t, like, around when there was, like, more stuff?

Clayton: I think it’s awkward because probably people my age have just gotten to the point where they feel comfortable accepting the idea that they’re disabled.

Amanda: Yeah.

Clayton: Except that now it looks like, you know, if you put in, if you’re smart and you’re persistent, then maybe, you know–well, people my age were probably told they’d never be able to type on computers, you know, which is clearly not the case, so you’ve got this issue where you have specialists who are supposed to be in charge of giving you a sense of what’s possible, and uh, what they say doesn’t seem to really apply. So, I, I don’t know. I don’t–yeah. It’s–I mean–

Amanda: Am I bugging you? Do you want to go to bed?

Clayton: No, you’re not bugging me. I think the proof that it’s an awkward situation is that I don’t have, uh, I can’t really think of how to express it in a more concise manner.

Amanda: Yeah. I don’t know, I mean, well I’m probably too drunk to tell if it’s a similar thing but sometimes I feel like that, because I know that, like, when I was growing up, like, the possibility for verbal people to get diagnosed with autism was not very big. So, like, I mean, when I was a kid, when I was diagnosed, when other my mom told other people that I was diagnosed, like, they would be like, “oh she doesn’t have autism because people who have it can’t talk” and, like, it’s really weird cause sometimes my mom sends me these like forwards from like autism centers and stuff where they have all these groups for kids with autism and my mom obviously think it’s really bad that I can’t, like, be in them, and that I didn’t grow up being able to be in them, and like if I tried to go to social skills things it was for kids that had really different stuff from me, and, like, um…which is too bad cause I would have liked to be around other kids that have autism and it’s really weird cause I know people that are only a little younger than me, and they were like diagnosed with, like, AUTISM, when they were really young, and everyone knew that was what they had–and I think that’s pretty weird. But, um, I don’t know, that’s actually not the same, I’m just drunk.

Clayton: Aww, it’s okay. Well, the thing I think is probably most important is, you know, obviously, I wish, of course, I wish that in ’88 they had, like, known more about it, so they could say–

Amanda: Well, I mean, if, like, people are neuroplastic, like, always, doesn’t that mean that you could still do stuff, or–

Clayton: I think the fact that I can do so much is proof that people are neuroplastic. And only now people are starting to accept that in the medical community, and then I think it’ll trickle down into more public awareness, uh, but, I think, I think it’s always important to take ownership of…if you feel like the term disability applies to you, it’s important to feel comfortable taking ownership of it while remaining aware that it’s, uh, that it’s sort of like…that it’s always, every day it’s gonna mean something slightly different.

Amanda: You’re so cute.

Clayton: So you sort of have to constantly renegotiate. And, uh, you know, um, I…

Amanda: I’m just looking at your hair, I won’t actually bug it.

Clayton: And I also want to say that as much as I believe that neuroplasticity is part of reality, that it’s not just…that it works…I also think that there are definitely…there’s definitely a difference between disabled and able-bodied, like I think that there’s a real difference. I don’t think that it’s necessarily a good idea to say that, well, everybody is just temporarily…people are disabled or they’re just temporarily able-bodied cause it’s not exactly the same to be 80 and feel 80 and to be like 40 and feel 80, that’s not very…it’s different

Amanda: I think I remember you saying that when I first met you, that you felt like from the waist down you were like really old?

Clayton: Yeah. So, like, I, it’s not that I think disability is, you know, this sort of social construct, I think it’s a real thing, if you experience discomfort you’re gonna experience discomfort regardless of what the social attitude towards your discomfort is. But, um, I don’t know, like, it’s really, uh…I think it’s up to individual people to decide how they feel about the term disability, and I think it’s up to those people to decide what that term means once they choose to accept it or whatever.

Amanda: Yeah. Sorry. Are you ready for bed?

Clayton: No…I think that’s all I have to say really.

Amanda: Okay. No, I just remembered, when you said that you identified as, like, “having CP,” rather than being disabled, which I think was like a year ago, I…I don’t know, I thought that was interesting cause I feel the opposite, like, I feel like the word disabled is like exactly as nonspecific as I would like.

Clayton: Yeah.

Amanda: But, um–

Clayton: Well, I probably feel differently now than I did before.

Amanda: Really?

Clayton: You know, but, um–

Amanda: It’s weird cause it seems like it just happened but I guess it was actually quite a while ago.

Clayton: Well, it’s weird cause you know you’re encouraged to, like, you got…you’ve got…if you have a…you know, your family or whatever, they want to believe that you can do everything, and at the same time they’re very aware that you’re, like, fragile. You know. So they tell you you can do everything but they treat you like you can do very little, and, like–

Amanda: I feel the other way around.

Clayton: Oh, yeah? Yeah. Well, it’s, um…I don’t know, like, I think you know what you can do. And I wish that everybody had support. And I wish that people trusted people cause I feel like if people trusted people they wouldn’t say, “oh, you don’t, she doesn’t have autism,” or, “I don’t think you’re disabled, I just think you have trouble walking”–well, what the fuck does that mean? What is that? What do you think that that is? You think it’s just a lifestyle choice that I made? Like, uh…I’m sorry. I know that I go on and on and on.

Amanda: No, that was cute. Gosh. Thanks, CK.

Clayton: I wanted to say one other thing–that I think that even though diagnosis is sort of ambiguous, you know, that even when you get a specific diagnosis it doesn’t really tell you what’s really gonna happen–I think it’s really important, if you think that they apply, to feel comfortable pursuing diagnoses, partly because I think that some people think that a diagnosis is a straightjacket, um–

Amanda: Oh, do you mean for like ADHD and stuff?

Clayton: I just know people that clearly have it but that don’t want to get the diagnosis because they feel like it’s a life sentence. Um, but, I think that–when you–if you have diabetes, it’s good to know that you can lose your foot, you know–but it’s also–

Amanda: What? Can you lose your foot if you have diabetes?

Clayton: Yeah.

Amanda: I didn’t know that.

Clayton: It’s good to know that you can lose your foot–and yeah, that’s a little depressing, but it’s also good to know that you’re not, like, falling asleep and nodding off because you’re lazy, it’s cause you, your body’s not doing what it’s supposed to do. I think it’s important, even if it’s not personally important it’s also important from a social and economic standpoint, because regardless of how people, what people’s individual attitudes are toward certain disorders or whatever, it’s legally practical, you know? I don’t–

Amanda: Like, you mean, it’s legally practical to be diagnosed so you can use it if you need it?

Clayton: Well, yeah. You know, if you don’t have something, you know–I mean, there are people that don’t have certain things…Okay–there are people with CP and people that don’t have CP, and both might have trouble getting around, but like, for people with CP, the, the issue is clearly–do I want to say pathological? Is that the term I want to use?

Amanda: I think it’s probably not the term you want to use but–

Clayton: Well, what I mean is the term, I mean, the–

Amanda: Well let me look up pathological but I always think of pathological as being some kind of mental health type word, which obviously isn’t the thing. But like what are you thinking about?

Clayton: I think that people who have a disorder or something that predisposes them toward having difficulty with something are simply more likely to need accommodations, and if not now then they might in the future, and I don’t feel like you should be so scared of your own body that you don’t make that available for yourself, you know, and I know that some people might feel like, “oh, well, there are people that are more disabled than me who need it more than I do,” well, there are people that are more disabled than them who need it more than they do. But you can’t do anything about that. And honestly the more functional you are, the better you can function–the more functional you are physically or emotionally or cognitively or, I don’t know how many other categories there could be that I’m missing, the more functional you’ll be as a human–as, as, you know, as a friend or as a family member or whatever, so it’s always good to take care of yourself. I don’t even know if that makes sense.

Amanda: Yeah. No, that makes sense. Wait, so do you feel like you feel like different from when you like said to me before that you like didn’t identify as disabled–

Clayton: Well, actually–

Amanda: –or just, like, different words for, like the same thing?

Clayton: I feel like I was encouraged to not think of myself as disabled but only because the people that were telling me thought, were, were, were–

Amanda: Your hair is so long.

Clayton: –oh, were incapable of thinking of a diagnosis as anything, but, like, a straightjacket. And I just don’t feel like diagnosis–I feel like having being subsequently diagnosed with other things has been incredibly liberating, and I guess that there’s no reason–I don’t feel there’s any reason I can’t retroactively feel that way about things that I’ve known about for much longer. You know, like if I didn’t, if no one ever bothered me–bothered, sorry–if no one ever bothered to diagnose me with CP because, “oh, like, it’s not worth making him feel limited,” then, you know, people might be telling me, “oh, you just, you know, you do that to get attention”–clearly not the case! That’s…crappy. Diagnosis is supposed to help you protect yourself, you know, uh, and I feel like you know everything is on a spectrum so just cause you’re not as bad as somebody else doesn’t mean that you have to think that you were given some sort of gift. You know. If things are difficult they’re difficult. You know. And I honestly feel like any sort of, any sense that I got that maybe people for instance who had–who used wheelchairs were, somehow, somehow felt like I was whining, I think I probably made that up. You know, nobody does that.

Amanda: I was actually like thinking about that girl yesterday.

Clayton: Isn’t that weird, that I, like, I didn’t feel like I could get to know her cause I felt like she would judge me, and that’s totally messed up! And I think that comes from me being told, “Oh, you’re not really disabled, you just have difficulty walking.” You know, it’s okay. Like, it’s all right. I’ve known people that are worse than her and that doesn’t mean she should feel self-conscious. I know I’m just saying the same thing over and over again.

Amanda: Well, I’m too drunk to tell, like, everything you say sounds really unique.

Clayton: Well that’s nice.

Amanda: It’s the White Russians.

Clayton: That’s nice. Um–

Amanda: I love the White Russians. Are we done with our interview do you think?

Clayton: Yeah. If you had to title this, you could probably title it with the phrase “not all gimps have to be super-gimps,” I guess is what my message to the people is–to my people–

Amanda: Okay. Gosh I’m so out of it. I feel like I don’t remember anything you said. I’m sure it was all really good–

Clayton: –salam alaikum!

Amanda: –well, what does that mean?

Clayton: It’s, it’s, it’s actually probably a shitty thing to say.

Amanda: What is it? Wait, come back to the microphone.

Clayton: It’s like–I think it’s like, uh, like, it’s a term, it’s a really like characteristic term of, of like late-‘60s neo-Islamic black power movement. [Clayton is a white Buddhist.]

Amanda: Yeah, that’s probably not good.

Clayton: No, but like, like, I remember meeting people that I felt like were disability militants who like would probably do the power fist, you know? Um, yeah. Okay. All right. Yeah.

Amanda: Well, now we’re drunk so we’re gonna go to sleep. I feel like when I started drinking I didn’t think I was so drunk and even when I had the last drink I was like “I could be a lot more drunk”–

Clayton: I kept telling you, dude, you’re already–

Amanda: But then, like, look what happened. Now look at me. I don’t remember this conversation.

[In the middle of the night we started having this conversation about a documentary Clayton watched part of about a supposed “escaped mental patient with a hook for a hand” who lived in Willowbrook after it had been shut down and preyed on kids with developmental disabilities. At the time the conversation seemed kind of poignant and I had wanted to add a coda to the interview where we summarized what it was about, but it’s been too long now to really remember.]

One Comment

Leave a Comment
  1. Liam Smith (@AutistLiam) / Oct 7 2011 5:24 pm

    By the way, “salam alaikum!” is “peace be with you” in Urdu, Hindi and Arabic and is used to mean roguhly the same as “Hello” and “Goodbye”

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