disability services are not accessible!

Hello. I'm a person who attends college. I'm also a disabled person, oh my gosh. I was hoping to talk to you today about the subject of, "DISABILITY SERVICES ARE NOT ACCESSIBLE."

Basically, the reason I found myself wanting to talk about this is because, you know, sometimes I take classes--being in college--and if I mention to my professor that I'm disabled, or...you know, either as like, "I'm having trouble with this because I have a disability that affects me in this way," or just in a way that, like, isn't related to academics but is just like, "I think I responded to this story this way because I'm disabled," I don't know...

So basically, you do this and then the professor will be like, "Well, like, if you need any accommodations, we should...you know, you should go to the disability services office and we'll get you some accommodations." They say this to be helpful. And, um, sometimes on the first day of class, you get the syllabus and if the professor is, like, a really sensitive professor they'll have written, like, "Students with disabilities, um, please contact the disability services office if you need accommodations." So, um, at this point, I completely give up on ever being able to get any kind of support from this professor as a disabled student, because disability services is so awful. I basically need disability services like I need a hole in the head--actually, I mean, not even as much.

So, what are my problems with disability services? It seems like they would be really great--they make college accessible for disabled students.

Um...okay. My first problem is...I got this pen so I can make little signs. Okay. My first problem is, "DOCUMENTATION." This means that...well, basically the way it works is that if you have a disability and you're in college and you want accommodations, you can't just say "I'm disabled," you have to bring in a diagnosis of your disability that is from the past three to five years.

So, um, this might seem like it makes sense--disabled people are always going to the doctor and getting diagnosed all the time! But, actually, um, it doesn't make that much sense because that's not actually true. Like, some people, they might be diagnosed with their disability when they're like ten and it's not a disability that changes, so, um, they don't ever get diagnosed with it again. So then they're like eighteen and they're in college and they're not eligible for accommodations because they don't have a recent enough diagnosis.

So, basically, I guess the reaction that a lot of people would have would be, "Well, so, get another diagnosis." Um...I guess, number one, is, like, yes, some people could do that but why is it necessary if it's a disability that doesn't normally change? And, number two, like, that actually takes a lot of time. It's kind of hard to go and do that when you're in college. And, number three, that actually takes a lot of money. My family has a lot of money--I can go and get another diagnosis if I'm told that I have to get one to have something that I need. Um, other people's families wouldn't be able to pay for that, so it's actually kind of a class bias in disability services.

Another thing I have about documentation is just that I don't necessarily understand the point of it in every case. Like, I think, hypothetically you could make some argument about how people are going to pretend to be disabled for like the benefits they get from it 'cause being disabled is extra fun. Like, I guess you could say someone is going to pretend to have some kind of kind of, like, chronic illness so they can have their own room or something like that. I don't know. I'm sure you can think of examples.

But a lot of the time there isn't really any arguable benefit for getting accommodations that you don't need. But...you know, if someone says they want to take a test in a different room for, I don't know, anxiety reasons, or, like, they're easily distracted, or, like, anything...how could taking a test in a different room, um, actually make any difference to someone who didn't actually need to do it? Like, if anyone goes and takes a test in a different room, it doesn't make them do better on the test unless that's actually something that they needed in the first place.

So, um, it basically bothers me because, as I'm going to go into, I can't help but feel that disability services almost has a hatred of disabled people because it's, like, this constant assumption that we must be lying and that we should do all this work to prove that we're not lying, which brings me to my second point which I'll just call, "ALL THIS WORK."

So, um, okay. Let's say I'm in class. I'm disabled and I realize that I would do better with a particular accommodation. Um...so let's say I tell someone that I need this accommodation. Whose responsibility is it that I get this accommodation and therefore, um, my schoolwork is just as accessible to me as a it is to non-disabled kids? Do you think that it would be my professor who is being paid to teach all the students, or do you think that it would be the disability services office who is also being paid to make college accessible to disabled students? Well, I'm going to read you something awesome which I found on the St. Petersburg College disability services website. I think it really just like sums up the whole attitude.

"Colleges and universities have no responsibility to identify or seek out students with disabilities. It is the student's responsibility to make his or her disability known to the proper individuals, to provide correct and current paperwork documenting the disability, and to request accommodation personally"--I really want to go and talk about this in a minute.

But anyway...yeah. It's our responsibility. All the time. I don't know if you know anything about being, um, disabled, but sometimes, like, it's really hard to do anything, and things that other people think of as being very normal, like, may be, like, pretty, really hard for you. So, it may, all the time, be kind of like going around and carrying, I don't know, a really, really giant heavy bag that no one else is carrying and you're expected to do everything the same as them anyway. So, I guess disability services felt that, like, one bag isn't enough, so they have to add a second bag of making you be the one who has to go through all of the effort to get accommodations instead of them just doing it--which it seems like would be their job, but no.

So, um, what do you have to do? You have to figure out what accommodation you need, you have to go to disability services--or maybe you go to your professor first, I don't know--um, you get your d--you get your documentation, which may take a lot of steps if you don't have documentation, but, um, you get your recent documentation, and you meet with your professor...and also, sometimes you have to keep doing this over and over again when you've already done it.

For example, I have a friend who had to take a test in a separate room, so every single time that she had a test in the class she had to bring a form to the professor for him to sign saying that it was okay for her to take a test in another room. So, basically because of the basic, like, cognitive problems that she had going on at the time she couldn't actually go to the professor and get him to sign the form. She couldn't remember or focus enough to do it. So she basically didn't get her accommodations because she was made to do all the work and she wasn't actually able to do it. So...it just doesn't really seem very fair I guess when someone is already dealing with things, and when someone, besides, is a student, and when someone else is doing this as their job, that they can't just do some things for you.

Um, a particular thing is when you're supposed to personally go to your professor and tell them about your disability and what accommodations you need. For some people this isn't really possible. In fact...yeah. For example, let's say someone has an anxiety disorder and they don't want to go talk to someone about it. Let's say someone has any kind of disability that is kind of stigmatized and they don't always like to go around telling people about it.

(break)

Sorry, my roommate was going to the bathroom and I didn't want that to be in the video.

Um yeah so basically there are various reasons that a person might not want to be able to go to a professor and start telling them about their disability, or that it might be very difficult for them to do so, but they're still required to do it. And this ties into what I was saying before--basically that disability services kind of seems to hate disabled students, because, um, even though things are already kind of hard, we're basically supposed to do all this extra work just to be treated the same.

Um, yeah, shit, what was my third thing?

I guess what I was going to say--I don't need to write it down. I'm probably wrong. I probably do need to write it down. But I was going to talk about, like, surprises. Basically disability services has this really cut-and-dry view of disability where you always know what you need. So, um, you know, if someone needs extra time to take a test, they'll always know that that's what they need. If someone needs...I don't know. You don't really need that many examples.

Basically, you know, someone's supposed to be able to know before they even start the semester what kind of accommodations they're going to need, and, you know there can't be any surprises. But...living with a disability, there are a lot of surprises. And one reason this is is just because of...I guess because of the general sort of complexity of, like...it's not always that you can't do something completely, but that for a lot of people it's that you can't do something sometimes or it's harder for you to do something.

So, this means that, like, you know, you might not ask for an accommodation on, like, a paper because you don't feel that you're...like, maybe you have, like, a reading disability, but you don't feel like you're so affected that you won't be able to work really hard and do this one paper. But then the paper comes around and you're like really super tired or, like, you have like three papers and it takes you so long to do this that you just can't do all of it, so you just don't do one of your papers. There's basically no way in hell that you could go at the last minute and be like, "Hey, can I have a disability accommodation? Because of my disability, I can't do all these papers at the same time." And...you know. That wouldn't be seen as real.

Something else, kind of an in-between issue, but something that's always personally bothered me is that, you know...if, for cognitive reasons, I cannot do something in class, like...I'm not even saying that I want to get away with that and have it not affect my grade. But I would appreciate it, I guess, if the professor doesn't decide that I don't care about their class and start being really nasty to me, which has happened; and, um, I don't know, I guess I wish that there was some way for disability services to actually be involved in issues when someone is either being discriminated against because of their disability or in which, like, professors are misunderstanding things that happened because of the person's disability--because if you're in a class with a professor that like really hates you it can make it really hard to succeed because you don't ever get any support or help from them.

Shit my roommate's dropping stuff and I know I'm gonna get really confused in a minute. I guess that was basically the whole point I was making, though. Basically, no room for clearing up misconceptions about disability--basically no room for anything relating to prejudice against disability--especially because disability services is extremely in the medical model of disability, in which everything is about the disabled person and basically it's the disabled person's fault that things don't work for them. Um, that's actually like, for me, I would kind of say that's what the whole thing is. That's what it feels like. The whole thing is about how it's the disabled person's fault and they should feel very very bad and the only way they can make up for causing such a problem is by doing all this extra work and getting their documentation together and shit.

What else did I have to say? Let's find out.

Shit--you know, it's really too bad, because I made another video about this and I said something so smart and I can't remember what it is.

So I guess you might be asking, what is something else that you could do, besides disability services--for example, if you are a professor, how could you help? Um...do it yourself?

Like...there's probably some things, I assume, are probably against the law. But there are other things that you can just do, and I know this because one time, for me, a professor let me take an exam in a separate room for emotional reasons, which I explained to him, which he accepted without me having any documentation because he was a really good person and he knew that there wasn't a reason that I would need that accommodation unless I actually needed it.

Um, there's things like that. There's things like trying to make your class universally accessible. What universal design means, basically, is that instead of making something so that only non-disabled people can access it and then, like, very long-sufferingly, like, making a tiny ramp for a disabled person to get in...you just make everything so as many people can do it as possible. So when you're designing your class, just think about different ways that people might need to access the information.

Or, you know, if someone's in class, just write on the syllabus if they're having trouble with something because of their disability, they can just talk to you. You don't need to have the whole part about "go to disability services," because you don't know what that means, so just say that they could talk to you, and then people will actually think that you get it, because you actually will.

Um, yeah, that's basically it. Sorry I can't remember the amazing thing that I said in my video that I made of this the other day.

(break)

Guess what? I just went back and looked at my other video and I found what I was going to say. I was going to say something about--wait--"BEING AN ADULT AND DEVELOPING GOOD SELF-ADVOCACY SKILLS."

So, this is something I have seen. When disability services people are being criticized for the fact that they basically make disabled students do all the work to get their services, they'll usually be like, "Well, we're actually teaching our students to be responsible, take initiative, and develop good self-advocacy skills." Well, this sounds nice, especially because a lot of the time disabled people are treated as being children, or treated as being incompetent and needing people to do everything for us, which obviously isn't a good thing. So, like, maybe first off it sounds kind of good when they're saying, "Oh, we're gonna make you do things for yourself." But actually, if you say that you're treating someone like an adult, but they're actually the only person who's being made to behave that way, then you're not really treating them equally.

Because, when you're in college, you aren't exactly being treated like an adult--like, no one is. You basically have someone kind of taking care of a lot of the details of your housing for you, a lot of the details of your eating, depending on the housing and eating decisions that you make, but you have a lot of people doing stuff for you.

And, if you're not disabled, your classes just are accessible to someone like you automatically and you don't have to do anything. So, if someone is disabled, and suddenly instead of doing it for them, you know, given the fact that they're a young adult and maybe they still need some support and can't do everything on their own, you say that they have to do it all on their own, because they need to get mature and get self-advocacy skills, you're actually holding them to a different standard from other students. Which is not fair, actually, so don't do it.

how an autism spectrum disability affects my life now

[the video hasn't processed yet, if it doesn't make it onto youtube I'm going to plotz though.
FUCK YEAH SEAKING IT'S PROCESSING
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Hey um I tried to do this yesterday but the video was too long and it wouldn't post. Um, I made this video a year and a half ago which is called "How Asperger's Syndrome affects my life now." I, um, constantly want to delete this video because I don't identify as having Asperger's Syndrome anymore, and um the video also starts with me saying something like, "Well I guess I'm very high-functioning so you probably shouldn't judge Asperger's Syndrome from listening to me," and in retrospect I think that's a ridiculous thing to say. But I mean like everyone else I like when people talk to me on the Internet and I get a lot of comments on that video so I don't want to delete it. But I wanted to make a sequel.

Um, first of all, like, the whole Asperger's thing...kind of a stupid word, not going to be in the DSM anymore because it's not a concept that makes sense. Um, I mean it's not the only ASD diagnosis that I ever got, either, and I also um...the thing is that the reason I used that word about myself was not ever because I wanted to. Like, I used to use the word autistic when I was much younger. But um, from non-disabled people I would face you know criticism because I would be told, "You shouldn't be using that word about yourself because you're not severely disabled enough" or something like that. Um, I don't really think that this is a way of talking that makes sense, I mean there are lots of...pretty much every disability that I can think of, there are some people who are very severely affected and some people who are very mildly affected. I also don't think that people can just talk to me and decide that I am mildly affected when they don't live my life. Um, so, I guess, I'm no longer interested in feeling guilty about using the word Autistic about myself--I mean I consider myself part of Autistic culture, I consider people with severe disabilities to be people who I feel as much loyalty to as I do to people who have a disability experience very much like my own, I don't, um...I mean, I've known a lot of people with severe autism, and I mean it's more severe but it's not something else, and I don't...that doesn't really make sense to say it is.

Yeah, sorry, to actually talk about myself, um...I, like, I feel like, I mean before, I didn't know other people with autism so I was very um, my whole view of what stuff was was very much based in what I read in books by people who didn't have autism, so I was, I feel like I was always trying to fit myself into that kind of category and then when I didn't fit it I would just say, "oh well I must be so high-functioning that that's why I don't fit into that description." [note: but then there were other things I couldn't do that even people with "classic Asperger's" [i.e. worse than mine] were supposed to be able to do, so I didn't understand that.] But you know as I've gotten to meet other people with autism and other disabilities I've realized that you know I have stuff going on that's pretty classic sometimes but it hasn't been written about as much but it happens to most of the Autistic people that I know.

Um, okay, so, first of all, the whole social thing has been something that's really massively changed for me in the past year and a half since I made that video and since I became more involved in disability culture. I think the thing is that even though before I used to think of myself as being, like, "better" and "recovered" and "not really autistic anymore," like, because I was always judging by, because I was always judging myself by the standard of whether I looked like a normal person, I...it was very hard for me to relate to other people who didn't have disabilities because I always felt inferior to them.

Like, um, I guess um the way that I walk is kind of different from some people who don't have disabilities, so um, especially with other women--when I was friends with other girls, if we were both walking down the street I would become so conscious of the way that I walked and the way that it wasn't like the way the other person was walking that I would get like pretty upset, and um it really poisoned my relationships especially with other girls because I was very, I was always comparing myself to them and thinking how I couldn't move like them and stuff like that which is kind of stupid.

Um, another thing is that I was really really worried always that other people didn't really want to be around me and I was just like attaching myself to them, so it meant that it was hard for me to reach out to people and then when I did I felt really like upset about it and like they didn't really want me there and I mean...I think this has been a really...it was a really bad thing in a lot of my friendships because I couldn't help...I would always resent people as if they'd actually done something to me, when in fact like the only thing that was going on was that I thought that I was inferior to them so I just resented them. And um I guess all I can say is that since I've become more conscious of identifying as disabled and less upset about being disabled, it's pretty, like...you know if I'm walking along and I know that I'm walking differently from someone else it's like, surprise! I guess I'm disabled so I walk like I'm disabled. Shock! Not really a big deal. Um, I mean I figure that other people probably want to be around me just as much as they want to be around anyone else so I'm not afraid I guess of trying to reach out to people and talking to people and...

It's funny because people, um, professionals always talk about "social skills" and they frame social skills as being able to look like you're normal, but I mean, what I would call my social skills have vastly improved now that I don't care about that anymore because you know when you're not thinking about trying to make yourself look like you're normal, you really are much more interested in other people and you have a lot more energy to spare on just caring about other people and listening to what they have to say.

Um, other stuff, the brain stuff, which is actually, like, the real problem. Um I've been watching The Walking Dead recently which is a TV show about zombies and I figured out that I'm basically a zombie. For example if a zombie was following a person that it wanted to eat, and the person leaves, the zombie will just keep going in the same direction, and um that's pretty much what I'm like. It's hard for zombies to like make new decisions or um figure things out, like they just see objects that they used to use when they were alive and they just get triggered into using them the same way 'cause they don't really, you know, get it. Um, it's very hard for me to think about anything in a new way or to switch myself into any kind of new task, which can be a really huge problem. It's, um, and I mean there's also a lot of stuff which I guess is probably a bit like having dementia which is just you know constantly forgetting what you're doing a lot--and I mean, I know all this stuff is the kind of stuff where people can be like, "oh that happens to everyone," which is totally true, but I mean the way that it happens to me is very pervasive and makes it hard to do things.

I also have pretty severe anxiety problems and um a problem is that I get such severe anxiety about my um (laughs) cognitive problems, which I guess are what you would call poor um central coherence and executive dysfunction, and stuff like that, if you like big words, um I get so upset about those things that I like will intentionally like block off like the part of my brain that tries to remember what I have to do and um will intentionally get myself stuck on like new ideas--or, not new ideas, I will intentionally get myself stuck on old ideas so I can just kind of stim out on them and not have to um do the actual work--which I mean, it's very hard, the only way...I mean, the good way for things to happen is for someone else to just sit down with me and like calmly explain to me what I have to do and help me like stay like emotionally stable during that.

But that doesn't always happen because I don't get disability services at school because I haven't been recently diagnosed enough, etc., and even if I was people would probably be like, "well, autism is just a social disability so why do you think you need help with mental stuff?" Um, yeah, not a lot of fun, that stuff.

Something that's interesting, I don't know how many people it happens to, but I, um, when things are very bad for me I have like dissociative and derealization symptoms which are um...it basically means that everything kind of looks and feels the same. So like talking to my mom and talking to my best friend and talking to a stranger all feel exactly the same. It's like um I mean intellectually I remember who people are but it's kind of as if I had just been fed the information and I didn't actually have like the lived experience of having them in my life. So it's just like when you're with people you don't feel the same click of recognition when you're having that kind of episode (I guess it's, I guess you could call it an episode) and I um I don't know. It can be really scary. Especially because you feel like you don't know them so it's kind of like a sense of stage fright, because you know it's as if you're performing a relationship with someone that you don't really have in your life. So um that can be really hard and I think that's a lot of why I try to avoid all my cognitive stuff and just end up fucking myself over by trying to ignore like the brain stuff, just because um when I look at things head-on I get a lot of anxiety and the results can be so unpleasant that I feel like it's almost worse not to do it.

Okay, I ran out of time, I hope this video is short enough that it'll actually post. But I just wanted to make this because the other video I don't like so much and I really think this is better and more in line with what I actually think about and believe now. Okay.

Regular Person Listening Day

Hi, it's Autistics Speaking Day, which is a thing. Um, well, basically an organization for autism made up of people that aren't autistic--I don't know if you've ever heard of that before, but there's a lot of them. They decided that they should do a thing on November first, called Communication Shutdown, and they thought that people should promote autism awareness and try to think about what it's like to be Autistic by not using social networking sites like Facebook.

Which, I mean,

number one, like disability simulations tend to not be good, because you can't tell what it's like to have a disability just by putting on a blindfold or sitting in a wheelchair or not going on Facebook (which doesn't actually have anything to do with being Autistic)...but you can't tell what it's like, so it's silly to imagine that you can and it's better to just listen to people and treat everyone respectfully,

um, you know,

and, um, I think a lot of Autistic people, when we hear about autism awareness, are like, "well I mean, wouldn't people be more aware if they just listened to us, instead of doing something like this, which doesn't really have to do with us?" So Corina Becker, who is an Autistic person who does a lot of cool things, decided that we should have Autistics Speaking Day which just means that people who have autism could just, like, write or say something, like, on the Internet or somewhere else, just to tell people how they feel about stuff.

I made a post and stuff, it's about the sort of thing I always talk about, nothing interesting, I'm going to link to it in the description of this video.

One thing I wanted to say is just...I mean, when I see the phrase "Autistics Speaking Day" that does make me feel, you know, it makes me feel weird because some people can't speak and some people can't even write.

So, by definition, it has to leave some people out I guess, at least superficially, but, I think, um, I feel like people may see that and say, "Well, the people with autism in my life, they can't write a post, and they can't tell me how they feel." So, um...to people who feel like that, who are in that situation, I think that there's still a way of observing Autistics Speaking Day with the person in your life. And, um, one way of doing that is respecting the person and knowing that the life they live has meaning for them.

One example of the opposite of what I'm recommending is something that one of my psych professors said I think a week or two ago when she was talking about autism. Someone mentioned that one of the kids with autism they had worked with was very focused on like, people's hair, or like, shoelaces, or something, I can't remember what it was...

No, it was trains, which are great, it was actually something that's, like, inarguably cool, but then my professor was like, "Well, you know, that's autistic people, they get really interested in uninteresting things."

So, um, I mean, how does anyone decide what an uninteresting thing is? Like, I don't like the TV show Glee, but my friend likes it, and my friend doesn't like the TV show Mad Men because she thinks that nothing happens. And some people like sports, like, professional sports, and I don't like professional sports, I like comics books and some people don't, um, and, well, I like trains, and I like, um, looking at colors, and some people, um, they just like spinning things and looking at them. People like a lot of things and I guess I don't really like the idea of saying that...

I mean, it's certainly possible to say, "For this person it's become, like, a severe problem that they're always spinning things and not doing anything else." You know, you can say that, but I feel like the level of judgment in saying, "They're interested in uninteresting things..." (coughs) Sorry. I'm also sick, um, in addition to being Autistic.

But um, I think a lot of the time, people have a way of talking about people...I mean really, all disabled people, but often people with very severe disabilities who aren't verbal, people have a way of looking at them and saying, "their meaningless behavior, um...they...I don't understand what they're doing so I think that it's meaningless."

Um, I guess I feel like one thing that Autistics Speaking Day, which I guess you could just call it Regular Person Listening Day, I guess one thing that Regular Person Listening Day could be about is just seeing that everyone does what they do for a reason, and if someone in your life is doing things that you don't understand, like making noises, or getting very upset when you don't think they should be upset, or not being able to wear their clothes because their clothes are uncomfortable for them and their sensory issues, I mean, I feel like a way of listening to them is just refusing to ascribe meaninglessness to behavior that you don't understand, um,

I think that's a kind of listening that you can do for everyone no matter what they can do in terms of talking.

"it's social model vs. medical model NOT mild vs. severe disability" transcript

Hey, okay, so I just wanted to say something because I keep reading a lot of flamewars, which is probably a stupid thing for me to do 'cause it just makes me annoyed, but I just ended up feeling like if someone just came out and said this then people wouldn't be so annoying to each other on the Internet.

So basically what I want to say is...well, I mean, I'm annoyed by particular flamewars that people have about disability rights, and I have autism, so I think I tend to read the flamewars that are about autism, but I've definitely heard people say this about everything from Down Syndrome to, like, spinal muscular atrophy and, like, tons of different disabilities.

Basically a person will be talking about a disability in a way that their opponent thinks is too positive, and they'll be saying, "We shouldn't be trying to cure this disability or talking about how awful it is--we should be talking about how to help people that have it, and accepting them."

And then the other person will say, "Well, that's how you feel because your disability's not severe, but I know someone whose disability is severe, and that's why I have my point of view. And both our points of view are equally valid because they both come from our experience," or something like that.

Okay, well, I don't really think this is true. I think instead of saying, "it's, like, mild disabilities vs. severe disabilities and those each lend themselves to a different political opinion," I think that it's just the medical model of disability vs. the social model.

And, um, the medical model of disability basically means that if someone isn't successful in society, um, you figure out what's wrong with them and you try to change what's wrong with them or keep it from happening to anyone else.

And, um, the social model of disability means that if someone isn't successful, you say, "Well, what should society be doing differently so that this person can be more successful?"

Um, I think a good example of this is a lot of the time people will say, "Well, autism is so terrible because my relative has autism and they can't live independently, and my whole family is really worried about where this person's gonna live when they're older."

Well, people who are into the social model of disability would say, "This is a political issue, and the government is already supposed to be supporting people who can't live independently, but as it is a lot of people end up in institutions when they don't need to be in institutions, they don't want to be in institutions, and institutions are actually more expensive for the government." So, um, those people would say, "This is actually an issue we need to be working on, and it isn't a fact that can't be changed, that someone's family has to worry about where the person is going to live and how they're gonna be taken care of--um, that's actually something that can and should be made different."

So, um, I personally have seen people who had pretty mild disabilities, I guess, who were very upset about the disability they had, wanted it to be cured, and supported the medical model of disability; and it's also the case that many people who were instrumental in developing disability rights and the social model of disability were people with severe disabilities.

So, um, that equation just isn't true, basically. And I also happen to find it kind of offensive, because, um, the assumption seems to be that if someone supports the social model of disability they must have a really easy experience with their disability, because if they had a hard experience they would support the medical model.

And you know, I think it's pretty insulting to go around saying what someone else's experience must be like just because you disagreed with them--especially on the Internet since you don't actually know them. But, um, yeah I just wanted to say this and I wish that people would think about this before they start bringing in people's personal disability experiences, instead of just saying that they don't agree with them.

hi kids, exciting development

so, because executive dysfunction is TERRIFIED of me and basically cries into its handkerchief when I'm around, I have finished putting new stuff on my website and reorganizing/writing some new bits for the disability section, something I've been planning on doing all summer, not one but ONE AND A HALF HOURS before my first class of my senior year. Come on you guys! Impressive!

Stuff is still uploading, so don't go to it right this minute that I'm posting it or you will be disappointed. But some possible things of note:

Difficult Cider (2010 musical odds and ends)

Lyrics for all the songs on the website

a terrible zine/diary thing I made two years ago, about something I'm trying to write a (somewhat more politicized) post about right now

On Speaking Badly: An Unintelligible Pop Opera

["It’s kind of, like, hard because, especially with speaking badly, because a lot of people speak badly who don’t have a disability, and I can’t really say that speaking badly is my thing, and that, um, it’s a hundred percent, that everyone who does it has a disability. I do think, though, that I can say that I think people have reactions to bad speaking that are unfair reactions, and I tend to think that those reactions come out of some kind of ableism, whether people can see it or not. Um...it’s analogous, I think, to, sort of, kids telling each other 'you’re so gay,' or sort of policing each other’s gender. And I think, you know, that can be going on in situations where all the kids are cis and straight kids, but there’s still this bogeyman. And I really remember, when I was a kid, that other kids seemed to not really even understand that a gay person was a real kind of person. It was just this sort of monster that we didn’t want to be. And, um, I feel like the same thing can be true with disability--even if people aren’t even outright saying, like, 'you talk like you’re retarded,' or something like that, or, like, 'you walk like a gimp,' I don’t know--but even if people aren’t saying those words, and even if people aren’t thinking about it as being about disability...I think that, um, we have a very deep sense that people who talk differently or move differently are not quite right. And, you know, whether that comes from not liking disabled people, or whether that results in not liking disabled people, I couldn’t really say, but, um, it’s definitely a problem."]

and last but not least, THE AWESOME DISABILITY SECTION, which is not that great actually, it only has like three things on it, but those things include:

Hi, I was just wondering why you keep using words like "ASD" and "autism spectrum disorder" and "autism" and "Autistic" about yourself when it's pretty clear that you have Asperger's and not autism at all.

What should I know about ASD that I'm not learning from pop culture?

this has already been up there for a year, but I still think it's like the best thing I've ever written, so: Pulling Rank and Involuntary Assimilation

also I have a suggested reading page which includes a transcript I made of Ari Ne'eman's awesome interview with Madness Radio, which as you may recall I love, cried about, became friends with him solely on the basis of, and so on and such forth.

Now it's 5:46, it's still not done uploading, except I think all the disability stuff is, but not the music. By six maybe it should be okay?

Autism Spectrum Disorders in the DSM V Part 2 Transcript

Um, a really long time ago I had talked about how I read an article about how the diagnostic...something...the DSM...I actually realized I have no idea what that stands for, which is kind of bad. [For the record, I know what the DSM is and all, I just forget what it stands for.]

Yeah, so they're trying to change Asperger's, and autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and, um, I don't know, I find that very upsetting.

So, um, I guess--and I mean, I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like, um, some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.

And, um, this makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.

And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, I feel like, maybe if you made, like, a diagram, and you had, like, somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person, but I don't know, I still feel like, the ways in which I'm different--I still feel very connected and identified with that severely disabled person. And, um, it's very hard for me to feel that I'm not supposed to care about that person.

And, um, my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But it was a woman about my age who has Asperger's, and she said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled

--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.

But, um, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then, um, she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well, this, I guess, I feel like it's just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis.

And another example is, like, cerebral palsy, which is when you don't get enough air when you're in the womb, and it leads to having, like, a physical disability with, like, trouble controlling your muscles and muscle weakness and stuff. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use like a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, they can still talk. And those people obviously don't need as many services, or they need different kinds of services.

So, um, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged--what you need is supposed to be judged by, like, the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't really the case, and to the extent that that is the case, it shouldn't be the case.

So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. Or, um, I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--like, I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. Like, that just doesn't make any sense, and I feel like this person doesn't know what she's talking about.

And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that, um, people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.

I read some interview with some guy, who, like, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said, um, that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And, um, I don't know, I think that's funny because, like, even some people who don't have autism have to use diapers, because, like, all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident, you know, like...I guess I think it's funny that he thinks that only happens to severely autistic people.

But, um, just the same, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And, um, I don't know, that just makes me feel upset

I feel like, um...Okay. I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, um, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people. And also, I think--

I mean, I've been called "retarded." I think a lot of people with Autism Spectrum Disorders have been called "retarded." And, um, there are certain people who will go around...I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.

But, um, this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And, um, I've been called retarded, I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are also called "retarded," have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.

And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.

(I guess maybe I do these in case a person who can't hear or doesn't like noises would be interested, but I also am just interested in figuring out how I speak, which is a lot of why I started making YouTube videos in the first place. I think it's interesting that as I've recently started trying to advocate for myself a lot more, I've started using the phrases "It upsets me" and "It makes me feel uncomfortable" almost compulsively. It's really cool to be able to say those words, I hope someday all of us learn how to say them.)

ASD Savants/Disability Redemption transcript

Hey, so I wanted to talk about the idea of redemption--I'm not trying to convert you to Christianity, it's a completely different kind of redemption. I think the idea of redemption is around in the conversation about Asperger's and high-functioning autism. And what I mean by redemption is the idea that if someone has a disability, if they're good at something else, it's okay that they have a disability.

And the kind of things you can be good at, it's a very narrow thing, it's the kind of things that are considered to be good by, like, intellectuals or something. Or I shouldn't say that--like, let's say you're really good at playing soccer, that would probably be okay. Or if you're really good at killing cows, or music criticism. Anything like that. If you have an ASD but you're good at something like that, then it's okay that you have an ASD, and you shouldn't even call it a disability, because all the trouble that you take up is canceled out by the fact that you do such and such good thing.

Well, this just isn't a point of view that I want to be part of, because I think it's kind of messed up and offensive. And the whole idea that people who take extra work to take care of, or people who have a disability--even people who are just kind of different and need a different thing from the world--we live in a culture that sees that as such an awful thing, like such people are such a huge burden and you should be really freaked out about them. And into the middle of that come people like Temple Grandin who will try to argue that people with Asperger's and HFA are, like, super special smart at certain things, and because of that, it's not really a disability, or it's okay, or "a dash of autism creates a genius" or whatever stupid recipe thing she's been saying lately--I just think that's really ableist. If you think, "well, it's okay to have this, because it creates a genius"--I mean, the whole idea that being a genius is such an important and valuable thing--well, it's not the most important thing in life and that's not the only kind of valuable people that there are.

It's weird for me, because I guess I'm a "high-functioning" person, but really, the reason I think of myself as a high-functioning person is just because people don't perceive me as having a disability most of the time. But it's funny because I don't feel that I'm a genius or that anyone perceives me that way. I definitely don't feel like a fucking savant--I mean, I'm good at some things, but it's not anything big, and I think when people meet me, there's very little sense of me being a genius--I mean, to the extent that anyone thinks anything about me in terms of disability or difference, it's probably that I'm kind of out of it, or that I seem like kind of an asshole, or just that I'm kind of stupid. So I don't relate to the genius thing. I guess I relate more to people who are intellectually disabled, because I feel like people give them the same kind of impatience and weird looks that they give me.

So those are the people that I feel the closest to, and it's upsetting to see other Asperger's people, like, throw intellectually disabled people under the bus--I just see so much writing by people with Asperger's, who if they see themselves grouped with people who are 'retarded,' they'll be like, "Oh, I'm not retarded, it's not the same thing, people think it's the same thing!" and it's like, okay buddy, it's not exactly the same thing, but there's some overlap, just calm down, there are similar things about the way retarded and autistic people move, and the way we sometimes process things, and the way people treat us.

Like, okay, I get that it's not exactly the same thing, but don't fall all over yourself trying to distance yourself from another group of people with a disability because it just makes you look like an asshole. And I really feel like this idea that people with ASDs are valuable only as long as we have these particular amazing talents is just kind of bad in the long run. And I feel bad when I think about any particular person who's achieved some measure of success because they're seen as being so super talented and their ASD is some adorable quirk because they're so talented it's okay--what if that person goes through something really bad and their speech kind of shuts down? Or, like, I used to be really good at reading and now I have a lot of trouble reading--that skill is just not really there for me anymore. And, if you've spent so much time arguing that you're okay because you're so good at such and such, what do you do if you stop being good at such and such? What does that make you? Does it make you not okay anymore?

I don't think that it does. I don't think anybody should have to redeem themselves for their disability by being a genius, you know?

I think people can act like this with all kinds of minority groups that make them uncomfortable. I mean, you can see it so much in Queer Eye for the Straight Guy--the whole fact that all the gay guys in public and on television are guys who have these particular skills that are supposed to be useful for straight people (I know, and they don't have any lesbians because we're not good at anything, I guess) but it's just like, they're trying to say, "Look, you have to accept gay guys--yeah, they're gay, and it's weird, but look at this other stuff they can do! Look how they can help YOU!" and it's like, why do you have to be so fucking selfish and think that other people only matter if they can contribute something in a way that you think is an appropriate way to contribute? I mean, what's wrong with someone being just a regular gay person who's kind of mediocre? You'd be okay with a straight person being mediocre.

And like, the average nondisabled person that I meet, I don't usually think that they're super great and they're going to cure cancer or something, but all of the sudden you're supposed to think that people with Asperger's are okay but a person with Down Syndrome isn't okay because a person with Asperger's might cure cancer?

Kind of stupid, and also, most of the time, not true. Lots of people with Asperger's, like me for example, are pretty dumb, not particularly great at anything, and I don't think that affects my value as a human one bit. That's all. I just wish that people wouldn't talk about ASDs this way, because I feel that while it may enhance the social status of a small group of people with ASDs who have special talents, it really insults and hurts a lot of other people with disabilities, and in the long run can even have a negative affect on the people who are considered to be savants.