30 September, 2011

I got in an argument with a friend, as one does, and said something I may not have actually come out and said on the Internet before, but it is the basis of a lot of things I think. I really respect her for being willing to have this conversation with me.

her: i don't want to have a child with a disability because i know that if i do i will have to, in fact, love that kid like crazy and put my everything towards its thriving. i mean, depends on the disability but i think that a lot of parents do struggle with that

me: okay well, I don't mean to be a dick, but just so you know people can accidentally have a child with a disability, my mom did, obviously. so, like, keep it in mind b/c I always hear people being like "I'm not going to have a kid with a disability because I can't handle, so I'm getting amnio" or whatever. and I'm like....ehh.

her: no, of course but amanda, i don't mean to downplay whatever your mom went through, but you obviously do not have as severe a disability as someone with downs. if my kid had aspergers it would be really different

me: oh my gosh, for real?

her: yeah of course

me: how many people do you know with down syndrome

her: well, only patients

me: I know a lot of people with down syndrome and when people say things like that I wish they could know all the people I know

her: but anything really, whether it was downs or something like marfans or fragile x. i know that they are and can be really, really awesome people to know. and i'm not saying i wish that they don't exist or anything like that at all, it's just obviously they aren't easy kids to raise.

me: you think marfan's is worse than autism?

her: i don't think marfans is worse than autism, but there is a spectrum with autism

me: okay like, I don't want to be a dick to you b/c I think you're really cool but...this is really silly

her: no it's cool, i want to know what you think

me: and I know you feel like "Amanda's not really disabled, she's my friend, but ~some people are really disabled and I feel different about them~" sorry if that's a harsh way to put it, but something I have noticed about the way people talking about parenting a disabled child: people can frame any disability however they want, like, oh it's really difficult, so difficult that the parent doesn't have to be judged for any decisions they make, ever.

I actually think something that has made this really clear for me is that autism is a really stigmatized disability in terms of kids with autism supposedly being really, I don't know, cold and smearing shit or something, and with down syndrome there's more a stereotype of kids being sweet--so actually you see parents being able to frame raising a kid with autism in a really negative way, much more negative than parents can usually get away with when it comes to ds, even if you compare two essays/blogs/interviews/whatever where the kid with autism is more independent or whatever than the kid with ds. and that is why I find the "your disability is milder" thing to be kind of a red herring.

I grew up disabled in a really stereotypical way, like I felt really guilty and like a huge burden. it doesn't really matter what disability I have, it's a cultural experience that people have across levels of independence, IQ, etc.

(additional note: I was predicted not to be able to live independently, or at least that was implied, and this hangs over like...every conversation I have with my parents. it's a huge factor in our relationship and in how I live--and actually, in my abilities as well. and sometimes it annoys me when whether someone actually CAN live independently is treated as the most important thing when they're talking about disability or ableism. because tons of stuff can happen to you just because of predictions that someone made about you when you were little, and that matters even if the predictions were wrong!)
I guess I'm curious what everyone thought about the TPGA dialogues? And by the dialogues, I mean the comments, because people more or less seemed required to be polite in the main posts so I started being a lot more interested in the comments. People were more straightforward there, and the comments started getting talked about elsewhere as being really unwelcoming and vicious toward parents and making parents scared to engage.

Which is weird for me because last week, the comment threads made me so happy, which was cool because I was really sad about RRH. I'm sure we all know why I would be sad about RRH. I used to be basically his blog's #1 fan so when I saw him refusing to engage with disabled people at all, really unconvincingly pretending to respect what people had to say and then running off to his Twitter to complain about them...it was kind of heartbreaking. I don't know if anyone here is a Justin Bieber fan, but if you are, you know how you felt when the Biebs rode a bicycle through Wal-mart and knocked over displays and supposedly got banned from the state of Vermont. It was that kind of feeling.

So I couldn't help looking at RRH's twitter every minute of every day, and every time I looked at it I'd get really depressed, but then I'd go to the dialogue comment threads and there were all these totally sweet parents there! I loved it. Some parents sometimes would feel like they were being attacked and say so, people would go back and forth, no one said anything really awful to anyone else, and most of those exchanges would conclude with someone saying, "That makes sense, thanks for explaining," or something like that.

Some parents are nice and want to listen to disabled people! Some parents don't respond to everything that happens by saying "I feel scared" (of a bunch of twentysomething disabled people on the Internet?) "and I feel like you're saying I'm a bad parent and like you're saying I shouldn't advocate for my kid!" I was so into it. It was the coolest.

But I keep seeing people saying that it was this really intimidating situation where no one felt like they could talk. I do think towards the end there was an unfortunate degree to which, like, 4 people would tell one person at once that they disagreed with them. But it was still done in a pretty polite way and I just don't see this big scary stampede where no one was allowed to express opinions?

28 September, 2011

Something worth mentioning

When I started college I made my first disabled friend. His name was Clayton.

I should probably mention Clayton wasn't actually my first friend with a disability. I'm my own first friend with a disability, of course, and aside from that I went to a high school with a high population of students with learning disabilities and mental health issues, and also knew a few kids with chronic illnesses. I didn't consider any of these people, or myself, to fit into the category of "disabled."

What made Clayton my first disabled friend, then? He was the first person I met who had a visible mobility disability, and at the time that's what the word disabled meant to me.

Having a disabled friend was a new experience, like having a friend from a country I had never been to. I asked him how he felt about the word lame. I worried about saying things that would be offensive to "a disabled person." During an intentionally shocking period of our first year, I earned the right to call him a gimp while he would greet me by saying, "Get away from me, you stupid dyke!"

From pretty early on, when Clayton talked about his CP, I would talk about my autism (or my ex-autism as I thought of it at the time. I used to think I had recovered from autism and was just really lazy and stupid, but I'm sure I've mentioned that before). It just seemed on-topic. By the end of our sophomore year I was sort of maybe knocking on the door of coming around to identify as disabled. Clayton told me by his estimation I belonged in the club.

Then we didn't see each other for more than a year.

When we saw each other again, I was Super Disabled and thought of everything in a political way that he didn't necessarily relate to. I always felt privately like my opinions were less legit because I didn't have a "real" disability. Actually if I started to feel like he was outranking me in terms of being disabled, I would start talking about all my mental health problems to make myself feel better. Clayton told me that whenever I left the room, his roommate would be really worried about me.

One time I referred to us as disabled and Clayton said he saw himself as having cerebral palsy rather than being disabled because being disabled seemed like a much more general, worse thing that implied he couldn't do some things he could actually do. This made me wonder about something I guess I hadn't thought through before. Basically I was thinking that if you have a disability that people don't think is legit, identifying as disabled is a relief, but if everyone sees you as disabled, it's kind of something you can be trapped in and not want to identify with.

Then we didn't see each other for like nine months.

After college I came to stay with Clayton and his mom so I would have a place to live while I figured out a job and apartment. Instead, we started drinking and watching all of Vampire Diaries. After a few weeks of this I felt lazy so I decided to start my project where I would interview people asking them if they identified as disabled, and why or why not. I thought it would be clever to interview Clayton since I had initially seen him as the only disabled person I knew, but in terms of identity, I was disabled and he was not. But Clayton said, "Actually I consider myself disabled now. I think I didn't before because people were always telling me I wasn't really disabled."

24 September, 2011

Apparently someone decided to call and harass RRH on the phone because of the tpga "dialogue." As everyone knows, it wasn't a dialogue, RRH didn't seem to care much about the issues being discussed, blah blah blah, but guess what, that's a totally irrelevant.

Part of being a member of a minority community is that you can't just do whatever you want all the time.

When a person with a disability expresses how they feel about something, especially if they are angry, other people regularly act as if the PWD has done something on the level of calling their house and harassing them. It can be kind of funny to look at this big divide between how someone's being characterized (scary and intimidating) and who they actually are (a disabled, usually young person typing comments on the Internet that are often more polite than the comments of the person who feels so "intimidated").

Well, guess what, there's no divide this time, because someone actually did what non-disabled people expect disabled people to do all the time. They actually did something scary. I'm sure this person was really mad and going through a lot, but, guess what, minority community! You fucked EVERYONE.

Now, I know this seems really unfair. Why aren't I writing a rant at parents who have threatened my own disabled friends? Because they're not in my community. Their decisions are their own, your decisions are ours. I totally understand that this sounds offensive--why can't disabled people just be individuals? I don't know guys, but we're just not, so please do not do things like this.

23 September, 2011

trigger warnings!

responding to a comment on this post

I'm sorry if I'm being defensive. This is a really long comment, I know it sounds really douchey at the beginning but bear with me if you can.

I haven't ever used trigger warnings on this blog, not because I have a problem with them (I use them sometimes on tumblr), but I guess because a blog is more like a home and it would feel like redecorating. I write about ableism and abuse, I write about stuff that makes me upset (I go back and forth on using the word "trigger" about myself because I still feel like I don't know exactly what it means and I don't want to appropriate it), I write about really bad brains and stuff I felt and said when I was in manic, suicidal, and/or violent states which often includes hatred of other disabled people. I guess from an aesthetic point of view I wouldn't like to adopt a policy of warning for this stuff because it would feel like oversimplifying and spoiling what the post is about. I've written fiction all my life and I studied creative writing in school which probably makes me more touchy about style and composition than makes sense for what the blog actually is. But I haven't really thought about this in depth, because no one has ever said anything about my posts being triggering (at least not in a direct way that implies I should do something about it) so I figured that people who were likely to be triggered by my blog were just choosing to read other blogs.

I mean maybe people just haven't wanted to speak up and ask for trigger warnings because I might react really defensively! Here you are commenting for THE FIRST TIME because this is important to you and I'm like...feeling (and sounding, to myself at least) really defensive.

Possible background!

I am kind of sensitive about this particular issue because of what happened when I made my tumblr post (which did have a trigger warning) in the spring. I was obviously feeling suicidal and dissociative and was having all these violent urges about myself and other people. However, only one of the people who reblogged the post on tumblr expressed that they were worried about me. Everyone else, including people I considered friends, just reblogged it to call me out for being ableist. At one point I started self-injuring and posting about it to try to prove that I wasn't less severely affected than the hypothetical people I was mad at. The person I was talking to continued to call me out for being ableist. People I didn't even know reblogged the post from her and wrote comments about how my post was "the dumbest thing ever" and I obviously didn't understand what psych-disabled people were going through. Anyway. It was a really bad experience, and while it was bad for everyone else and not just me, I still feel resentful about it because I felt like people only wanted to point out the flaws in my argument when like...my argument was obviously super flawed because I was MANIC.

Anyway, because of all this I felt like you were calling me out and telling me I was wrong for having those feelings or even mentioning having had them...when it's just as likely that you were just telling me that my blog wasn't accessible to you and I should make it more accessible. Thoughts? (If you want.)

I would also like to hear if anyone who reads this blog finds it really triggering in a way that makes them not want to read it or makes it really stressful to read, in a way that could be avoided with trigger warnings and/or another solution.

22 September, 2011

So about advocacy vs. self-advocacy. I don't really like the term self-advocacy. I think in one of my blogger profiles I have "not self-advocacy" listed among my interests. Why don't I like the term self-advocacy? Because I am not a self-advocate.

For example, when I was five I broke my leg. I was a talking person who had two parents and a caregiver, but it took a whole day before anyone realized my leg was broken. My personality hasn't changed much since then. I don't really know why I am not a self-advocate, but I'm just not.

A problem I have with the word self-advocacy used in a political context, which was pointed out by someone in comments at the Thinking Person's Guide to Autism, is that it implies the advocacy of disabled people is always very specifically about ourselves. It also strikes me as some kind of weird attempt to avoid saying disabled person, as per fucking usual. "Some parents of children with disabilities talk to SELF-ADVOCATES!" No, dude. Some parents of children with disabilities talk to people with disabilities. It's not some kind of obscure political group and/or cult.

I'm just someone who talks about ableism and happens to be a disabled person. I mean, it's not this totally disconnected "I write about ableism and if you must know I happen to have a disability." I think I notice and care about certain things because I am disabled, and that affects the way my writing is. But my disability doesn't equal my writing (or my advocacy if you want to call it that) and it always bothers me when someone seems to be interested in my writing because I have autism and not because of the content.

Also, as I've said, I just am not a self-advocate. It's a personal problem. People who can self-advocate but can't write a blog have a different set of abilities from me.

For months I have been intending to write about a guy I used to be staff for. Let's call him Ron. I don't know if any of my former coworkers read this blog, but anyone who worked with Ron will know who I'm talking about when I say that his writing is really hard to decipher and would not be served well by the blogging format. I also don't think he could have an abstract conversation about social justice.

But anyone who has worked with Ron has had this experience: you're on break, or you're walking by on your way to support someone else, or you're brushing your teeth in the morning and this really distinctive voice comes out of the stall: "Good morning Amanda. Would you like to wipe my butt and spray deodorant under my arms?"

I always found it hard not to reply: "Fuck yes!" Not because I have a big attachment to wiping people's butts but because someone like Ron is a real hero to me. So many people go through life not asking for what they need. I remember being awed when a blind hallmate walked into my dorm kitchen and said, "Are any of the burners free? Which one? Am I putting the pan on the right one? Okay, can someone give me the spatula?" Something I feel like I'd rather die than do--which, I'm sure, is part of the problem. So many people go through life not asking for what they need that I know the revolution, when it comes, will owe at least as much to brave people like Ron as to speechless but talkative people like me.
(trigger warning for description of me having violent feelings toward myself and other disabled people)

I couldn't sleep and wandered into Clayton's room and said:

when I was 13 my dog died and I felt really sorry for my parents because now they only had me. Whenever I thought about the fact that I was an only child I was filled with this guilt I tried to avoid thinking about, that they didn't have another kid to take their minds off me.

Last spring I was almost done with college. My parents had told me that I would be able to finish college in four years if I worked hard enough. All my friends who had disabilities like mine were either having a lot of trouble in school or had already had to leave and I was determined not to be like them. I kind of hated them. I got in a big fight on the Internet because I made an angry blog post about how I wanted to kill people who took medical leaves because I would kill myself rather than do that.

I would get really angry and scared about potentially not doing schoolwork and not being able to graduate. I would get suicidal. Sometimes just trying to come down from being really suicidal made it hard to do work but I couldn't tell my professors why my work wasn't good or on time. It made me feel upset to wonder what they thought of me but if I told anyone I was suicidal I could be removed from school and I wouldn't be able to finish in four years.

My parents do a lot for me and I'm very close to them. I consider them great people but a part of me is disappeared from them.