29 November, 2010

I have to stop

I just get really angry sometimes. And it's about all the same old stuff.

But I just can't handle the high-functioning/low-functioning thing, not now, not ever. And I don't really have to, often, because this is a pretty small blog and most of the people I am in contact with as a result are people with autism-ish disabilities, or people who get it. But sometimes I end up reading comments from people like Harold Doherty and I just...I can't do it. It just is too much.

Partly this is because--I mean, if you read my stuff you know that sometimes I have thought a lot about killing myself or hurting myself. Sometimes I've had to sort of disappear from myself because things are so hard. I have a lot of brain problems. And right now I get the privilege of being close with a lot of people, but this feels like a privilege because I used to be very much alone. But the social stuff is the least of it. Cognitively, and emotionally, a lot of things are unbearable sometimes.

And I just seriously can't handle these characterizations of "the kind of people with autism who don't want a cure" as being a person who isn't really affected and thinks everything is great. People who say those things don't live my life. Usually, they don't live any kind of disabled life. They don't understand that a person can be very taxed and still usually want to live. They don't understand that a person can want to die, but still think that a cure isn't the only solution to feeling that way.

I hate having to always pull this out, because really anyone should assume that people who are involved in anti-ableism know people with severe disabilities--but I know people with severe disabilities, mostly through being staff for them and volunteering with them (which is a weakness, I'd like to get to know more severely disabled people through self-advocacy and in my everyday life). And...it's not any different, when it comes down to life. They're not tragic people. Most people have the equivalent of what I was talking about the other day, when I was talking about wanting to die. People have things that move them through life, things that are special to them.

Some people with severe disabilities, like people with mild and moderate and whatever you want to call it disabilities, are very lonely and very sad and are not getting the help they need. This is a tragedy. But we, disabled people, are still not the tragedy.

I really can't handle, with how much stuff hurts sometimes, seeing people like me characterized as not really having any problems and not really being affected by disability. Things are really bad and people who are invested in the tragedy model of disability will never be empathetic enough to understand how bad things are, because I don't consider myself a tragedy and therefore I must not be suffering ever.

One problem with this whole way of thinking, this division, is that it makes all my suffering and all my hard work meaningless. These people think that if you do something that people with autism aren't supposed to be able to do, then it's just because you don't really have autism. This is one of the attitudes that most makes me want to kill myself, because I know that even if I work really hard and accomplish a lot, no one will respect me for this because they will just see me reaching a level that a person without autism could reach, and refuse to believe that I'm not just a normal (or normal enough) person operating at my base level. Sometimes it feels like there's no motivation for me to do anything.

The last problem is just that one of the people that Doherty et. al. most like to use as an example of someone who has a really easy time is one of my best friends and is the only thing that keeps me going sometimes. I know that my friend is not a person who is unaffected by disability. He is probably the epitome of someone who is working way beyond their means, and he pays for this all the time. I love and respect him for doing this to himself, and I feel that even if someone doesn't agree with his work, they should respect him for how hard he works to do it.

But they don't, they don't, they don't, and that breaks my heart (because I'm easy, I guess, kind of soft), and it just makes me, more than anything, sad to read what these people have to say. It gives me a sense of being erased and thrown away, of being completely nothing. I really don't know what they want from us--if we all just laid down and died, would they believe that we're really disabled, or would they just change their definition of what disability is?


  1. That's all crappy. I'm sorry you're going through all of that. *comfort*

  2. Oh yeah, I have more stuff to say.

    I wanted to say that I do really relate to feeling like I have all this difficulties that nobody understands and nobody understands just how difficult those difficulties really are. Like if I were to even try to describe them, people would say "oh but everyone has that", but everyone doesn't have it the way I do. I could give examples but then I know I'd just run off on a tangent.

    On the upside, I managed to do some drawing tonight. Go me!

  3. Thanks. It was okay. I might scan it in at some point.

  4. I agree with you. My idea is that you should reward yourself when you succeed in doing something that you have difficulties with. Maybe not in a chocolate kinda way, but more in a mental one. We as humans are different from each other, but we can always find people we relate to. These people will of course never be able to fully understand even the people they relate to, therefore you must be able to reward yourself, because in the end, no one will truly understand how you feel.

  5. And pretending to do so is wrong. It's pathetic, to be frank. We do not need people patrionising us. We get nothing from it, and if we do, aren't we equally pathetic? Insted: deliver us facts and true honesty. I do not wish for someone to tell me I'm doing a good job when I'm socializing if they say it because they think that's what I want to hear. If they are saying it because they really are impressed by me trying - and perhaps failing - then I can accept the compliment.

    But I would rather have someone silent than someone telling me stuff they think I want to hear. It won't make me feel better, it will just remove any previous respect from me towords that person.

  6. I'm sorry things are so bad right now. I wish I could say something that I thought would offer real comfort, something other than the standard responses I've learned from my childhood.

    But you are really amazing. Your blog has really changed the way I look at things, especially functioning levels. I hate that someone can just say a few words and instantly cut down all the effort you put into this and all of the pain you've had to endure at once. I know how helpless it feels because I feel that way too--I'm feeling that way right now, reading what you said, because it's so true and it hurts so much. It feels like the attitude is so prevalent that it can't be gotten rid of. The only thing I know to do that can make it go away is to keep talking so that people will hear me, because I used to buy into all the ableist ideas too and listening is what changed me.

  7. Aw, I'm actually not thinking about killing myself right this minute. But thank you.

  8. i wish there was a way to be unaffected by what other people think of us. It defines the way we are treated, there is no escaping it, but educating them must be so draining...
    i have a cure for autism though, if you want ?
    it's called "a pyjama, a blanket, a movie and a glass of wine".
    works like magic.
    i suggest you throw your apron to their face and let them educate themselves for a while.

  9. I don't know, I've been utilizing that cure for a long time and I think it might be worse than the disease.

  10. What bugs me most is when the achivements of disabled people are used as sticks to beat other disabled people with.. and believe me when I hear this I can relate to the sort of anguish and frustration you're conveying

    Person-without-disablity- "oh well I know this guy with disablity-x and he smiles, never complains, supports himself, earns a six figure salary and has climbed Everest with his teeth, so why can't you? Stop your whining!"

    I hope you stop feeling so sad soon (or at least get a holiday from sadness) I admire and respect you and without your blogs and youtubing my life would be statistically ever so slightly blacker.

    (ps this is HangOnToYourEgo from youtube with another awful song title inspired username I choose forever ago)

  11. So I went and read the shorter version of this on tumblr and I think it's inspired and assertive and amazing, and should be required reading for anyone who thinks it's ok to throw that bullshit at self-advocates.