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.

Autistics Speaking Day post

The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:

One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."

"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.

This kind of attitude from parents and professionals makes me want to scream.

I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.

A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.

People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:

1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."

2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.

3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.

4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.

5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.

6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.

Reality testing

Last spring, depersonalization was kind of a political act. I'll go more into detail another time. Stuff is a lot better now for various reasons. And I know disability-as-metaphor is dangerous, but it is my disability and my metaphor.

If I'm disabled, and I know I am, and people don't know that and people don't see that, then what I think I know is not real.

If people with disabilities are real and vibrant people, and I know them, and people think of us something other, something sad and tragic, then what I think I know is not real.

If writing here and meeting people through this is a really important, special thing that's changed my life, but no one can see it when they look at me and people think the Internet isn't real life, then what I think I know is not real.

If I need help but I don't look like I need help and I half the time think I'm lying and exaggerating about needing help, and I don't have current documentation to prove I need help, then what I think I know is not real.

If people who say they are my friends, family members who say they love me, can explain without feeling concerned why they wouldn't (or didn't) want a disabled child, why it's okay to talk about disabled people in negative sweeping terms, and these people love me, and I'm still me, then I'm not me, and what I think I know is not real.

So then why is it wrong to sometimes feel like there is no difference between me and characters on TV? Or like my friends are not really my friends, but just a bunch of fake memories imprinted on my brain, leaving me nervous to talk to them because I feel like it's the first time, the first real time, like I'm a clone that has slipped into Amanda's life and is trying to proceed as normal?

I mean, if all this is true, I could be a Cylon.

(I'm making a pun, reality testing remains intact--at least as far as I know.)

Autism is a world and you're not invited

(This was going to be my Autistics Speaking Day post but then I accidentally wrote something else. So this is like my pre-game.)

Now, I have a tendency to say things about other disabled people, like, "Well he can't see, but it's not such a big deal to him, he knows how to get around" or, "Well she can't walk anymore--so she's using a wheelchair now." I end up interjecting this tone of forced mellow when I hear other people saying things like, "Oh it's so sad she can't walk..." or, "Oh and he's *blind*...."

Sometimes people say that I am being insensitive and implying that just because someone has a way of getting by, they don't have a hard time because they're disabled. The reason I end up saying forced mellow things, though, is because I feel like saying, "Oh it's so sad..." or, "Oh I'm so sorry..." is really invasive. It's their thing to feel sad about, not yours. Glossing over the hard parts of disability, if that's what I'm doing, is not really any more biased than emitting massive rays of sadness in the direction of someone else's experience.

Especially if you have a lifelong disability, like I do, massive rays of sadness can really creep you out. When explaining I am disabled I find myself wanting to say something like, "I have autism, it's pretty boring. It's not a big deal." However, if I said that I guess it would have to be followed by a qualifier: "I mean, it's a big deal for me, but not for you."

I really don't like when people make a big deal out of the way I move, react, and speak (form and content). I used to think that I should be working harder to act and communicate in a way that people wouldn't have anything to say about. The thing is though that I already try to be polite and pay attention, and I feel like that should be enough--I don't know how many years it would take to blend in completely, if it even happens at all, and I don't know what the emotional effect on me would be. So I prefer to be like, "Hey, can you just chill out about the way I talk, I have autism. Thanks."

The problem is that my disability comes in two parts: the part that most people can see, and the part that I actually have to live with. I don't really think the way I talk is a big deal. However, I'm pretty affected by central coherence/transition problems and anxiety, and those things are a huge deal and often kind of a scary thing.

It is my choice not to try to get school or work accommodations, even though all my issues could be fairly easily accommodated. Because these kinds of brain problems are hard to quantify, I'm extremely leery of explaining them to people who might think I'm being dishonest. At school, the kind of tasks you're required to perform in order to get accommodations are things I'm often not mentally or emotionally capable of doing; so the process of getting accommodations would be harder than doing without them. I would never ask for accommodations at a job out of fear of being seen as incompetent (given the chance, I try to avoid them knowing I even have a disability diagnosis).

Actually now that I said all that I'm not sure "choice" is the right word to use, but I guess the point is that, for me at this juncture, the bad/internal parts of my disability are things that I very much keep to myself as much as possible. "Myself" is not just me though, it is also some of my friends who either have disabilities or just are awesome, who I'm able to talk to and get help from regarding the brain stuff. They are people who can come inside my disability with me, and it's nice to have their company.

But you can stay out there, please. I'm fine. I mean, I'm actually not fine as in "looks different but is able to do the same things as anyone else." I can't do some things and sometimes I feel super bad about it. But no matter how bad it gets it is never an occasion for some other person to feel bad about my disability in some existential, abstract way. I would really rather someone just be cheery about it--"okay you have autism, that's cool, just like some people have blue eyes"--than try to insert themselves into my disability with me when I didn't invite them.

brain problems

There's a limit to the amount of moving/forcing my brain around I can do, especially if I'm in a situation where I am cooking and cleaning for myself, dressing myself, and making some of my own schedule (you can call these transition problems, inertia, executive function problems, weak central coherence, and many other overlapping things). And there's a limit to the amount of anxiety I can endure (I experience anxiety about many many things, including changes in routine, noise, lots of social situations although not the kind you think, and about the brain problems in general).

I'm a person. Sometimes I get tired. Sometimes I have to feel safe. Sometimes I have to do things that feel really good. But due to anxiety and transition problems, it is hard to know if I will ever get out of doing something that feels good, once I start.

I'm very afraid that it won't ever be safe for me to live on my own, and also that I'll never be able to be a parent and that the kinds of jobs I'll be able to do are somewhat limited. Even a year and a half ago, I didn't understand all this about myself--how much stuff I can't do consistently. (I almost think it would be easier if it was things I straight-up couldn't ever do, but that's not it. It makes it harder to explain, and it makes it harder to forgive myself when I fail because I know I've done it before for very brief periods.)

When people say I'm high-functioning I want to cry and then punch their lights out.

The end.

so I just rewatched Gattaca (after seeing it and really loving it four years ago) and I seriously almost cried it's so awesome...the problem is it's actually sort of super ableist in its own way. Like, people with invisible disabilities should just follow their dreams, but people with visible disabilities, not so much.

I can think of a loophole out of this so I can still love the movie and not feel bad. But I feel like I'm cheating. Can anyone help?

new project, please help

I made this tumblr called What is "high-functioning?" which is an attempt to define the term once and for all, using the Lemony Snicket "a word which here means" paradigm.

You're supposed to be able to submit to it, which might only work if you have a tumblr, but maybe you have a tumblr. If you don't, you can just tell me what to write. I just want to anthologize every single possible use of the term. So please submit stuff that people have said about you, people you've worked with, your family members, famous people, etc.--what did they mean when they said "high-functioning" or "low-functioning?"