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!)
30 September, 2011
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?
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."
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.
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.
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.
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.
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.
21 September, 2011
this is a collection of tumblr posts so it may get longer
Maybe you know what's going on. If you don't that's okay. I don't want to use the person's name and maybe that's dumb but it just seems like such an archetypal situation that I don't see the point of causing drama. He seems unreachable. If you know who this is you already know. It's a non-disabled parent vs. disabled people internet drama thing. It is taking a lot out of me and I'm not even directly involved.
Zero
[I deleted this post immediately after making it]
has ted ever considered treating other people with 1% compassion? just do it! it'll be great!
One
also, before I go back to sleep, because I can’t yet thanks to this ridiculousness.
it happens to be a fact that at one point You Know Who wrote in an email to either Z or me (I don’t remember which, because it was a while ago and it was an incredibly horrible series of days in my life for reasons that had little to do with him but definitely exacerbated how much the situation upset me) something like this:
“when this started happening my friends started telling me that I shouldn’t try to talk to self-advocates because it wouldn’t end well and they wouldn’t listen but I tried to anyway and I’m really regretting this because everyone has been so mean to me and not listened!!”
okay dude, so let’s look at this.
basically he’s setting up the fact that he tried to engage with self-advocates (also known as disabled adults!) as, like, some kind of awesome favor. like, the baseline thing that you would expect would be that he wouldn’t do it. and his friends told him not to do it because self-advocates are not nice, or maybe just don’t understand these issues because they’re not smart enough. (but when it actually matters, we are smart and NLMC.) I mean, this is what I already don’t get, because if your work is about disability and making things better for disabled kids, how could you think listening to disabled people is anything other than vital? because one day your kid will be an adult who people are trying to decide if it’s worth it to listen to, or if engaging with them ~won’t be worth it~ or whatever.
but you’re trying to figure out if disabled adults are going to be nice/cool/~understanding enough to deserve your time. yeah okay. I hope you engage with your kid even if they wake up on the wrong side of the bed and aren’t reasonable or in a good mood. (disclaimer, my impression of You Know Who is he would do this because he seems like a really good dad, but I have NO IDEA why I am required to say this when I am disagreeing with him or why he thinks people are required to take his advocacy work into account when disagreeing with something he said especially because he clearly doesn’t give a fuck about what any of the ~disabled adults~ arguing with him experience or what our work has been like.)
anyway, this guy decides to be an epic saint and actually answer/talk to disabled people who disagree with him even though someone told him that the disabled people would just be dicks. and the disabled people in question…were dicks, in his opinion. so his conclusion is to like try to guilt-trip us because HE LISTENED TO US EVEN THOUGH HE WAS TOLD NOT TO BOTHER. because he’s the nicest guy in the world. and we weren’t nice back!!
but if you really care what disabled adults have to say then you just would listen and you wouldn’t think you deserve something for listening! AND if you think someone wasn’t nice to you (which I couldn’t disagree with more in this case) you would still want to engage because it’s important! you definitely wouldn’t be like “ooh this is starting to prove that I shouldn’t have engaged with you”
IN CONCLUSION, this is a really good way of making it sound like you want disabled adults to shut up and practically all you have done is say things like this!
Two
[obviously, this was also a direct comment on one of his posts]
Hi R, it’s Amanda. We talked a bit in comments and by email when this first happened, and (as I probably said) I can’t do this conversation well because it’s a big emotional/psychiatric trigger for me to hear people being told their disabilities aren’t significant. (I understand if you think I’m misinterpreting what you said or taking it too much to heart, but you said that Zoe lives independently and that isn’t true. That is a perfect illustration of why parents should not try to bring in personal information when having these conversations with self-advocates.)
So I apologize for messy/badly thought out parts of this comment. But I would like to point out that I’ve never seen Zoe try to represent the point of view of someone with a disability that’s different from hers or more severe than hers—just her own point of view. I feel that we start having this conversation where we argue the legitimacy of things that haven’t actually happened. I actually see you acknowledging/agreeing with a lot of things that Zoe said in her letter and I don’t really think there is a lot of disagreement when it comes to actual ideas. And obviously Zoe cares a lot about talking to you and engaging with you, because she is making an effort to do so and has initiated most of the conversations you’ve had.
The biggest difference of opinion that I see seems to be that you feel attacked but no one I know feels like they have attacked you. I didn’t think Zoe’s original post was that mean or aggressive, except for one word choice that she later apologized for. But you’re saying she turned you into a “bogeyman?” And that you wish you could have heard from her when you first made the post with suggestions of how to make it be more inclusive—but that’s exactly what her original post WAS. She linked it in the comments of your post because she intended for you to read it and think about it.
I think you’re a great parent who has done a lot of important work for AAC users. At one point in an email you said that my reaction really bothered you because I was a longtime reader of your blog and knew about your work. But I don’t see why or how someone is supposed to take your work into account when responding to something you said that they thought was offensive. A person can do good work and still say something that other people find worthy of addressing. Personally I’d be really happy if this conversation stuck to opinions and ideas and stopped being about anyone’s life or work.
(I have to say that when in posts and comments you have tried to talk about what any of us know or experience in our personal lives, you have often been wrong, as with the comment about living independently. Which is one reason I’d like you to stop.)
Anyway, I’m getting off track, but I have seen you say that you were turned into a bogeyman, take words out of context to turn them into examples of how you were insulted (like when someone wrote a post saying that you and Zoe had both made “dick moves” in the conversation, and you said that you’d been called a dick), Tweet about things that self-advocates have said to you in emails that you think were stupid or offensive, and tell people like Zoe who have been fairly polite that you would have happily listened if they’d been MORE polite. To me, it looks like you think you’re in this situation where people don’t like you and are trying to bully you. That is what is most confusing to me because I think you are wrong. If disabled people didn’t care about you we wouldn’t be trying to reach out to you and talk to you! Most of the things you’re calling attacks happened because A DISABLED PERSON WANTED TO ENGAGE WITH YOU. I can see why someone would say that this really makes it hard for disabled adults to talk, because no matter what we do, you react as if we’re punching you in the face. I really don’t get it, with the work you do for your daughter, that you make it seem like disabled adults have to meet an impossible standard for it to be “worth it” for you to listen. To me your work/parenting and your reaction to this situation seem like they belong to two completely different people.
Three
“People who are struggling just to live every day don’t have the luxury for discussions like this.”—one of Ted’s friends on twitter
HEAD MEET DESK
FOREVER
but….but….HE IS HAVING IT!!! so therefore he ALSO sucks
and you’re talking about it on twitter so you suck too!
everyone sucks! we all have luxurious not-really-disabled lives!
[Savannah reblogged this and pointed out it's kind of like "poor people can't have nice things if they're poor." it sort of reminds me of people taking pictures of homeless people who have cell phones and maybe that explains why it feels so hateful. the constant desire to assert that people in a situation that blows are actually having a great time.]
Four
you know, when ted and I talked by email he sort of (very unenthusiastically) apologized for doing the whole YOU’RE SO MILDLY DISABLED thing to Zoe, Julia, and me. I basically spilled my guts to him, I linked him to the page from the passing project where people talk about wanting to hurt themselves or become injured to opt out of “invisible disability.” (I have to make a new version of the passing project at some point because there is so much I left out, particularly in this area, because about three times more people talked about this kind of thing than I had room for.)
I tried to say, hey, I might be jealous of someone with limited speech because they get assumed to need support, while I’m presumed to either not need support or to be able to ask for it! But that is just a feeling coming out of my own shitty circumstances and it’s not VALID. And it’s really hurtful! So it’s not something I need to go around announcing, especially as a way to silence someone with limited speech.
so ted was like…okay. That makes sense. I was jealous too.
yeah, no. here ted was again yesterday, saying that people who can “live independently and self-advocate” (even though he’s talking to someone who doesn’t live independently, well never mind, SHE HAS A BLOG, obviously the most important ADL) have “privilege.”
now, the truth is I don’t really want to argue with this. I have privilege over, like, another lesbian who gets regularly perceived as a lesbian by strangers. for example I’m moving to Cincinnati which I’m told is kind of conservative/homophobic in some places, but for me, that doesn’t matter at all because no one on the street is going to assume that I’m gay. whereas someone who looks “more lesbian” has to think about this stuff when they think about where they’re going to live.
it’s complicated because passing can be tough, and especially in terms of disability, passing can lead to all these real problems of not getting support. being treated like I don’t have a disability, or seeing other people treated that way, actually sickens me, it’s just really horrible. so I’m not sure I’d use the word privilege when it comes to disability? but I’m not sure I wouldn’t either. what I do know is if I was talking to ted’s daughter about disability, I’d be aware that we have way different stigma experiences because she’s more “visibly” disabled, and that would probably be something I was thinking about just as much as I’d be thinking about how best to listen to/communicate with someone who has more limited speech and uses AAC.
but no one is talking to ted’s daughter! we’re talking to ted. so please someone explain how this is relevant.
different experience of stigma DOES matter, but I don’t think it means such a clear-cut, huge different in privilege that any non-disabled person needs to be telling disabled people about it over and over. or like going on his Twitter (seriously is he a high school girl??) and posting about how we’re “ignoring our privilege.” what does that even mean? what would not ignoring our privilege look like? do we have to start every post/comment we make with a little checklist of our privilege over ted’s daughter (as far as we can tell, since we’ve never met her, and like I said these things are far from clear-cut)?
now, here’s what I think. ted, despite being aware of what privilege means from a social justice standpoint, isn’t actually using it that way. ted just means that he thinks we have it easier than his daughter. which, as I said, is totally fine, people play those little games in their head and resent other people all the time for having what they think are easier lives. it’s when you decide that those feelings/games actually represent FACTS or are somehow political that…you become a huge fail.
imagine if I thought it was relevant whenever I argued with someone to be like, “You’re straight! You’re a man! You’re better-looking than I am! You’re from England, I wish I was from England, so you’re PRIVILEGED! Your parents sound like more fun than my parents are! STOP IGNORING YOUR PRIVILEGE.” now obviously in some ways this person is more privileged than me and in other, non-privilege-related ways they may also have a more fun life than I do, but like, this isn’t related to what we’re saying! also what if their parents aren’t more fun than mine are or they don’t feel like they are? aren’t I just making them feel upset and playing this weird game with them for no reason?
not only is ted saying all these kind of nasty and insensitive things about how great he thinks other disabled people have it, but he actually seems angry that we either choose not to respond or point out he is being ridiculous? like, he’s personally offended?
this really hurts because I am personally offended by being told I have it great and I very sincerely and unguardedly tried to explain this to him. and he was kind of like “I guess I don’t know as many diverse pwds as I should” or some other half-apology. but I would say it’s not just that he doesn’t know a lot of diverse pwds, but that his understanding of disability is really simple and flat.
his daughter is disabled and has a hard time, so therefore she has it the worst. even though she’s on the unified sports team for the most independent kids. even though she can walk and run. even though she can use AAC and can use some speech. even though she doesn’t look different like a lot of kids with brain formation conditions (like microcephaly and lissencephaly) do and therefore experiences less stigma in that area. keep in mind there’s no way I’d ever want to have this kind of contest with anyone, but there are plenty of ways that ANYONE has it better than someone else. his daughter is really disabled, he knows that because he knows her, so therefore he categorizes her disability as real/severe/significant and the rest of us who he disagrees with, or who have abilities he wishes his daughter had, are in the only other category he knows of, which basically amounts to “not real.”
what if we were all really disabled?
what if we all just looked different from each other, some people looked like conventionally cute kids and other people had different-shaped faces and heads or different facial features; what if some people could talk and some people could talk a little and some people could talk sometimes and some people could only say one word or no words; what if some of us could live on our own and some could but ended up hungry and unwashed and some people would die if they lived on their own; and what if some of us could stand up for ourselves in school and fight back if someone hurt us and some of us could write in a blog and some of us could give a speech and some of us were seen as fucking geniuses/miracles because we “made a full recovery,” but didn’t even have the “self-advocacy” to say no to unwanted sex because we were too scared or well-trained; and what if a lot of us had all these predictions made about us when we were kids, he will never type on a keyboard, she will never drive, she will never go to college, he will use a wheelchair, she will have seizures, he will never live on his own, and to some extent it doesn’t MATTER what we went on to do anyway because we still were kids who were talked about that way and when you make decisions about a kid you don’t know what they will do, if someone tells you that stuff about the kid, you accept it—so we live with that anyway. What if all of these people were disabled?
I worry, precisely because ted’s daughter, still very young, is gaining skills that were not predicted and is very conventionally normal-looking, that someday people will try and tell her she is not really disabled. and he has set himself up to be totally blindsided by that because he used to say that to other people, and he doesn’t understand why it is wrong.
Five
from my favorite story:
Lupin looked down at him with soft eyes. "He's hanging in there. Between the nightmares and the Dementors and the Death Eater attacks-- but Voldemort can't take Harry out. No matter how much he throws at him, Harry always pulls through."
"The Boy Who Lives and Lives," Neville echoed weakly, because that's what the Prophet was calling him now.
Lupin shook his head angrily. "The damn Prophet. Only a Qwik-Quotes Quill would call it living."
Zero
[I deleted this post immediately after making it]
has ted ever considered treating other people with 1% compassion? just do it! it'll be great!
One
also, before I go back to sleep, because I can’t yet thanks to this ridiculousness.
it happens to be a fact that at one point You Know Who wrote in an email to either Z or me (I don’t remember which, because it was a while ago and it was an incredibly horrible series of days in my life for reasons that had little to do with him but definitely exacerbated how much the situation upset me) something like this:
“when this started happening my friends started telling me that I shouldn’t try to talk to self-advocates because it wouldn’t end well and they wouldn’t listen but I tried to anyway and I’m really regretting this because everyone has been so mean to me and not listened!!”
okay dude, so let’s look at this.
basically he’s setting up the fact that he tried to engage with self-advocates (also known as disabled adults!) as, like, some kind of awesome favor. like, the baseline thing that you would expect would be that he wouldn’t do it. and his friends told him not to do it because self-advocates are not nice, or maybe just don’t understand these issues because they’re not smart enough. (but when it actually matters, we are smart and NLMC.) I mean, this is what I already don’t get, because if your work is about disability and making things better for disabled kids, how could you think listening to disabled people is anything other than vital? because one day your kid will be an adult who people are trying to decide if it’s worth it to listen to, or if engaging with them ~won’t be worth it~ or whatever.
but you’re trying to figure out if disabled adults are going to be nice/cool/~understanding enough to deserve your time. yeah okay. I hope you engage with your kid even if they wake up on the wrong side of the bed and aren’t reasonable or in a good mood. (disclaimer, my impression of You Know Who is he would do this because he seems like a really good dad, but I have NO IDEA why I am required to say this when I am disagreeing with him or why he thinks people are required to take his advocacy work into account when disagreeing with something he said especially because he clearly doesn’t give a fuck about what any of the ~disabled adults~ arguing with him experience or what our work has been like.)
anyway, this guy decides to be an epic saint and actually answer/talk to disabled people who disagree with him even though someone told him that the disabled people would just be dicks. and the disabled people in question…were dicks, in his opinion. so his conclusion is to like try to guilt-trip us because HE LISTENED TO US EVEN THOUGH HE WAS TOLD NOT TO BOTHER. because he’s the nicest guy in the world. and we weren’t nice back!!
but if you really care what disabled adults have to say then you just would listen and you wouldn’t think you deserve something for listening! AND if you think someone wasn’t nice to you (which I couldn’t disagree with more in this case) you would still want to engage because it’s important! you definitely wouldn’t be like “ooh this is starting to prove that I shouldn’t have engaged with you”
IN CONCLUSION, this is a really good way of making it sound like you want disabled adults to shut up and practically all you have done is say things like this!
Two
[obviously, this was also a direct comment on one of his posts]
Hi R, it’s Amanda. We talked a bit in comments and by email when this first happened, and (as I probably said) I can’t do this conversation well because it’s a big emotional/psychiatric trigger for me to hear people being told their disabilities aren’t significant. (I understand if you think I’m misinterpreting what you said or taking it too much to heart, but you said that Zoe lives independently and that isn’t true. That is a perfect illustration of why parents should not try to bring in personal information when having these conversations with self-advocates.)
So I apologize for messy/badly thought out parts of this comment. But I would like to point out that I’ve never seen Zoe try to represent the point of view of someone with a disability that’s different from hers or more severe than hers—just her own point of view. I feel that we start having this conversation where we argue the legitimacy of things that haven’t actually happened. I actually see you acknowledging/agreeing with a lot of things that Zoe said in her letter and I don’t really think there is a lot of disagreement when it comes to actual ideas. And obviously Zoe cares a lot about talking to you and engaging with you, because she is making an effort to do so and has initiated most of the conversations you’ve had.
The biggest difference of opinion that I see seems to be that you feel attacked but no one I know feels like they have attacked you. I didn’t think Zoe’s original post was that mean or aggressive, except for one word choice that she later apologized for. But you’re saying she turned you into a “bogeyman?” And that you wish you could have heard from her when you first made the post with suggestions of how to make it be more inclusive—but that’s exactly what her original post WAS. She linked it in the comments of your post because she intended for you to read it and think about it.
I think you’re a great parent who has done a lot of important work for AAC users. At one point in an email you said that my reaction really bothered you because I was a longtime reader of your blog and knew about your work. But I don’t see why or how someone is supposed to take your work into account when responding to something you said that they thought was offensive. A person can do good work and still say something that other people find worthy of addressing. Personally I’d be really happy if this conversation stuck to opinions and ideas and stopped being about anyone’s life or work.
(I have to say that when in posts and comments you have tried to talk about what any of us know or experience in our personal lives, you have often been wrong, as with the comment about living independently. Which is one reason I’d like you to stop.)
Anyway, I’m getting off track, but I have seen you say that you were turned into a bogeyman, take words out of context to turn them into examples of how you were insulted (like when someone wrote a post saying that you and Zoe had both made “dick moves” in the conversation, and you said that you’d been called a dick), Tweet about things that self-advocates have said to you in emails that you think were stupid or offensive, and tell people like Zoe who have been fairly polite that you would have happily listened if they’d been MORE polite. To me, it looks like you think you’re in this situation where people don’t like you and are trying to bully you. That is what is most confusing to me because I think you are wrong. If disabled people didn’t care about you we wouldn’t be trying to reach out to you and talk to you! Most of the things you’re calling attacks happened because A DISABLED PERSON WANTED TO ENGAGE WITH YOU. I can see why someone would say that this really makes it hard for disabled adults to talk, because no matter what we do, you react as if we’re punching you in the face. I really don’t get it, with the work you do for your daughter, that you make it seem like disabled adults have to meet an impossible standard for it to be “worth it” for you to listen. To me your work/parenting and your reaction to this situation seem like they belong to two completely different people.
Three
“People who are struggling just to live every day don’t have the luxury for discussions like this.”—one of Ted’s friends on twitter
HEAD MEET DESK
FOREVER
but….but….HE IS HAVING IT!!! so therefore he ALSO sucks
and you’re talking about it on twitter so you suck too!
everyone sucks! we all have luxurious not-really-disabled lives!
[Savannah reblogged this and pointed out it's kind of like "poor people can't have nice things if they're poor." it sort of reminds me of people taking pictures of homeless people who have cell phones and maybe that explains why it feels so hateful. the constant desire to assert that people in a situation that blows are actually having a great time.]
Four
you know, when ted and I talked by email he sort of (very unenthusiastically) apologized for doing the whole YOU’RE SO MILDLY DISABLED thing to Zoe, Julia, and me. I basically spilled my guts to him, I linked him to the page from the passing project where people talk about wanting to hurt themselves or become injured to opt out of “invisible disability.” (I have to make a new version of the passing project at some point because there is so much I left out, particularly in this area, because about three times more people talked about this kind of thing than I had room for.)
I tried to say, hey, I might be jealous of someone with limited speech because they get assumed to need support, while I’m presumed to either not need support or to be able to ask for it! But that is just a feeling coming out of my own shitty circumstances and it’s not VALID. And it’s really hurtful! So it’s not something I need to go around announcing, especially as a way to silence someone with limited speech.
so ted was like…okay. That makes sense. I was jealous too.
yeah, no. here ted was again yesterday, saying that people who can “live independently and self-advocate” (even though he’s talking to someone who doesn’t live independently, well never mind, SHE HAS A BLOG, obviously the most important ADL) have “privilege.”
now, the truth is I don’t really want to argue with this. I have privilege over, like, another lesbian who gets regularly perceived as a lesbian by strangers. for example I’m moving to Cincinnati which I’m told is kind of conservative/homophobic in some places, but for me, that doesn’t matter at all because no one on the street is going to assume that I’m gay. whereas someone who looks “more lesbian” has to think about this stuff when they think about where they’re going to live.
it’s complicated because passing can be tough, and especially in terms of disability, passing can lead to all these real problems of not getting support. being treated like I don’t have a disability, or seeing other people treated that way, actually sickens me, it’s just really horrible. so I’m not sure I’d use the word privilege when it comes to disability? but I’m not sure I wouldn’t either. what I do know is if I was talking to ted’s daughter about disability, I’d be aware that we have way different stigma experiences because she’s more “visibly” disabled, and that would probably be something I was thinking about just as much as I’d be thinking about how best to listen to/communicate with someone who has more limited speech and uses AAC.
but no one is talking to ted’s daughter! we’re talking to ted. so please someone explain how this is relevant.
different experience of stigma DOES matter, but I don’t think it means such a clear-cut, huge different in privilege that any non-disabled person needs to be telling disabled people about it over and over. or like going on his Twitter (seriously is he a high school girl??) and posting about how we’re “ignoring our privilege.” what does that even mean? what would not ignoring our privilege look like? do we have to start every post/comment we make with a little checklist of our privilege over ted’s daughter (as far as we can tell, since we’ve never met her, and like I said these things are far from clear-cut)?
now, here’s what I think. ted, despite being aware of what privilege means from a social justice standpoint, isn’t actually using it that way. ted just means that he thinks we have it easier than his daughter. which, as I said, is totally fine, people play those little games in their head and resent other people all the time for having what they think are easier lives. it’s when you decide that those feelings/games actually represent FACTS or are somehow political that…you become a huge fail.
imagine if I thought it was relevant whenever I argued with someone to be like, “You’re straight! You’re a man! You’re better-looking than I am! You’re from England, I wish I was from England, so you’re PRIVILEGED! Your parents sound like more fun than my parents are! STOP IGNORING YOUR PRIVILEGE.” now obviously in some ways this person is more privileged than me and in other, non-privilege-related ways they may also have a more fun life than I do, but like, this isn’t related to what we’re saying! also what if their parents aren’t more fun than mine are or they don’t feel like they are? aren’t I just making them feel upset and playing this weird game with them for no reason?
not only is ted saying all these kind of nasty and insensitive things about how great he thinks other disabled people have it, but he actually seems angry that we either choose not to respond or point out he is being ridiculous? like, he’s personally offended?
this really hurts because I am personally offended by being told I have it great and I very sincerely and unguardedly tried to explain this to him. and he was kind of like “I guess I don’t know as many diverse pwds as I should” or some other half-apology. but I would say it’s not just that he doesn’t know a lot of diverse pwds, but that his understanding of disability is really simple and flat.
his daughter is disabled and has a hard time, so therefore she has it the worst. even though she’s on the unified sports team for the most independent kids. even though she can walk and run. even though she can use AAC and can use some speech. even though she doesn’t look different like a lot of kids with brain formation conditions (like microcephaly and lissencephaly) do and therefore experiences less stigma in that area. keep in mind there’s no way I’d ever want to have this kind of contest with anyone, but there are plenty of ways that ANYONE has it better than someone else. his daughter is really disabled, he knows that because he knows her, so therefore he categorizes her disability as real/severe/significant and the rest of us who he disagrees with, or who have abilities he wishes his daughter had, are in the only other category he knows of, which basically amounts to “not real.”
what if we were all really disabled?
what if we all just looked different from each other, some people looked like conventionally cute kids and other people had different-shaped faces and heads or different facial features; what if some people could talk and some people could talk a little and some people could talk sometimes and some people could only say one word or no words; what if some of us could live on our own and some could but ended up hungry and unwashed and some people would die if they lived on their own; and what if some of us could stand up for ourselves in school and fight back if someone hurt us and some of us could write in a blog and some of us could give a speech and some of us were seen as fucking geniuses/miracles because we “made a full recovery,” but didn’t even have the “self-advocacy” to say no to unwanted sex because we were too scared or well-trained; and what if a lot of us had all these predictions made about us when we were kids, he will never type on a keyboard, she will never drive, she will never go to college, he will use a wheelchair, she will have seizures, he will never live on his own, and to some extent it doesn’t MATTER what we went on to do anyway because we still were kids who were talked about that way and when you make decisions about a kid you don’t know what they will do, if someone tells you that stuff about the kid, you accept it—so we live with that anyway. What if all of these people were disabled?
I worry, precisely because ted’s daughter, still very young, is gaining skills that were not predicted and is very conventionally normal-looking, that someday people will try and tell her she is not really disabled. and he has set himself up to be totally blindsided by that because he used to say that to other people, and he doesn’t understand why it is wrong.
Five
from my favorite story:
Lupin looked down at him with soft eyes. "He's hanging in there. Between the nightmares and the Dementors and the Death Eater attacks-- but Voldemort can't take Harry out. No matter how much he throws at him, Harry always pulls through."
"The Boy Who Lives and Lives," Neville echoed weakly, because that's what the Prophet was calling him now.
Lupin shook his head angrily. "The damn Prophet. Only a Qwik-Quotes Quill would call it living."
15 September, 2011
3. How you learn how things are done
My dad told me that most parents wouldn't understand my "visceral reaction" when I see indistinguishability held up as an ideal, or even as something that would be nice. As if we were talking about religion, which he dislikes, he said, "Maybe it's not important and it's not what they should want, but most people want to be normal, so they want their kids to be normal. You can't tell them their choice is wrong."
"I don't really think it's parents who make that choice," I said.
"Oh, so it's just the evil professionals making parents do what they want?"
"Well, yes." Not that I think professionals are evil--this is really about staff infection, not individuals. Lots of the infected are probably great to play Dungeons & Dragons with (more on that later) but they have a particular way of thinking about people with autism.
Parents often don't. I know how I feel about disability in general and autism in specific, because disability is a permanent part of my life. For the average person that isn't the case. Now they have a kid who who has this--what do you call it? Disease? Mental illness? Neurodevelopmental condition?--well, they have this scary autism word that you see on TV. What the fuck. This is terrible. What do they do? What are they supposed to think?
It's perfectly normal, when something happens which is challenging and with which you have no experience, to look to the people around you for examples of how to respond. If your kid has autism, the people around you are often telling you that "recovery" for someone with autism is about looking non-disabled, and that this recovery is urgent, so you go along with it because you're not a fucking autism expert. You don't know how things are done.
Unfortunately, it's exactly the powerful momentum of how things are done which keeps people from thinking much about the things they are doing. Sooner or later the parents know how things are done too.
"I don't really think it's parents who make that choice," I said.
"Oh, so it's just the evil professionals making parents do what they want?"
"Well, yes." Not that I think professionals are evil--this is really about staff infection, not individuals. Lots of the infected are probably great to play Dungeons & Dragons with (more on that later) but they have a particular way of thinking about people with autism.
Parents often don't. I know how I feel about disability in general and autism in specific, because disability is a permanent part of my life. For the average person that isn't the case. Now they have a kid who who has this--what do you call it? Disease? Mental illness? Neurodevelopmental condition?--well, they have this scary autism word that you see on TV. What the fuck. This is terrible. What do they do? What are they supposed to think?
It's perfectly normal, when something happens which is challenging and with which you have no experience, to look to the people around you for examples of how to respond. If your kid has autism, the people around you are often telling you that "recovery" for someone with autism is about looking non-disabled, and that this recovery is urgent, so you go along with it because you're not a fucking autism expert. You don't know how things are done.
Unfortunately, it's exactly the powerful momentum of how things are done which keeps people from thinking much about the things they are doing. Sooner or later the parents know how things are done too.
2. How Indistinguishability Keeps Its Groove
I'm sorry to mix metaphors because I often compare zombies to people like me (unusual gait, does the same things a lot, often judged to be better off dead) but let's focus on some different aspects of the zombie and swivel that image over to another group of people: staff.
How did you get your groove back? Well, indistinguishability, you never really lost it, and that's what scares me. Maybe this is a failure of mine because how can I be more scared by a difference of opinion than I am by more obviously bad things, like violence? I'm not sure. I know I find vampires pretty unterrifying when they're sadistic, but zombies are unbearable because they don't even know or choose the crimes they commit. There's nothing to explain.
So what I'm trying to do is explain. Not why I'm against indistinguishability, cause I have, but why it seems so stupid when I say that, like I'm against electricity. People respond with the most ill-thought-out support, and it doesn't matter at all. "But flapping your hands is against social norms and kids need to learn to follow social norms!" Across the country, kindergarteners are told to be yourself and do the right thing even if it makes you stand out--except when it comes to this one group of little kids. "But other kids will notice that they're different and exclude them!" Okay, just like when kids are bullied for race or religion their teachers start training them to look like white Protestants. Maybe you're thinking people can't pretend to be white, but some people can--and besides, good luck convincing his peers that a kid who can't talk isn't disabled, even if he keeps his hands by his sides.
This is a completely meaningless argument though because anyone who defends a point so weakly has already won. Even if someone says "Yeah, I guess you're right," it's like some interesting philosophical discussion about unicorns. Intelligent input darling, now let's go back to our day job where we kick horses in the face for having horns when they shouldn't.
"Hey hold on," you may be saying, "I'm not kicking anyone in the face! I'm just writing a behavior plan where if Erica talks about unicorns too much she doesn't get dessert."
That's cool but a lot of disabled people have had to live with this stuff longer than you have, and it kind of feels like being kicked in the face.
"Aw, but it doesn't feel that way to me."
That's because it's your job. Everyone's job feels normal to them. Our government likes to pretend that Abu Ghraib happened because Lynndie England is a bad person, but she just had a work environment where she thought it was normal to act a certain way. I know this is an aggressive comparison, but there isn't a point of wrongness where the things that you're doing suddenly feel wrong. I feel that if people were more aware of the broad spectrum of things that can feel normal when it's your job, it would possible to engage them in real conversation about what they do.
How did you get your groove back? Well, indistinguishability, you never really lost it, and that's what scares me. Maybe this is a failure of mine because how can I be more scared by a difference of opinion than I am by more obviously bad things, like violence? I'm not sure. I know I find vampires pretty unterrifying when they're sadistic, but zombies are unbearable because they don't even know or choose the crimes they commit. There's nothing to explain.
So what I'm trying to do is explain. Not why I'm against indistinguishability, cause I have, but why it seems so stupid when I say that, like I'm against electricity. People respond with the most ill-thought-out support, and it doesn't matter at all. "But flapping your hands is against social norms and kids need to learn to follow social norms!" Across the country, kindergarteners are told to be yourself and do the right thing even if it makes you stand out--except when it comes to this one group of little kids. "But other kids will notice that they're different and exclude them!" Okay, just like when kids are bullied for race or religion their teachers start training them to look like white Protestants. Maybe you're thinking people can't pretend to be white, but some people can--and besides, good luck convincing his peers that a kid who can't talk isn't disabled, even if he keeps his hands by his sides.
This is a completely meaningless argument though because anyone who defends a point so weakly has already won. Even if someone says "Yeah, I guess you're right," it's like some interesting philosophical discussion about unicorns. Intelligent input darling, now let's go back to our day job where we kick horses in the face for having horns when they shouldn't.
"Hey hold on," you may be saying, "I'm not kicking anyone in the face! I'm just writing a behavior plan where if Erica talks about unicorns too much she doesn't get dessert."
That's cool but a lot of disabled people have had to live with this stuff longer than you have, and it kind of feels like being kicked in the face.
"Aw, but it doesn't feel that way to me."
That's because it's your job. Everyone's job feels normal to them. Our government likes to pretend that Abu Ghraib happened because Lynndie England is a bad person, but she just had a work environment where she thought it was normal to act a certain way. I know this is an aggressive comparison, but there isn't a point of wrongness where the things that you're doing suddenly feel wrong. I feel that if people were more aware of the broad spectrum of things that can feel normal when it's your job, it would possible to engage them in real conversation about what they do.
09 September, 2011
Your feelings are the feelings of a dick
Mourning people who are alive is fucked up. Fact! Members of the international brethren of people who are not dicks have been talking about this for fucking ever. Most of us are disabled though, especially when it comes to mourning people with autism. So try to understand how AMAZING Tom Fields-Meyer's post on Motherlode, the New York Times parenting blog, is.
Poor Fields-Meyer had the nerve to write a book about raising a son with autism, in which he outright says that he didn't grieve for his imaginary non-disabled child. After being encouraged to grieve by a counselor:
I had no instinct to mourn. I had carried no conscious notion of what my children would be like — boys or girls, tall or short, conventional or a bit odd. I planned only to love them.
Fields-Meyer was obviously dealing with some difficult stuff and doesn't make an effort to hide it, but nonetheless, after Lisa Belkin quoted him in Motherlode she got a comment from someone "bristling over the whole assertion that [Fields-Meyer] never needed to mourn...as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme." Yeah, fuck you, Tom Fields-Meyer! How dare you feel different from how someone else thinks everyone feels?
Fields-Meyer wrote a pretty sweet guest post on Motherlode where he basically defends his lack of mourning. He doesn't tell anyone what they should be doing or feeling, but he doesn't really make it sound like not mourning is just an emotional reaction. It's a principle.
I had always believed that the biggest mistakes parents make happen because a mother or (more often) a father is disappointed by the way a child is turning out. Over the years, I’d seen acquaintances whose parents wanted them to be doctors, or wanted them to go into the family business, or didn’t want their child to be gay. These parents saw their children as damaged goods because the child wasn’t what they’d had in mind. I just never wanted to be that parent.
The international brethren of people who aren't dicks rejoiced. But what did everyone else do?
I'm sorry to tell you that sometimes I read the Twitter of someone whose Twitter I shouldn't read. It makes life awful. Sometimes it puts me in a bad mood for the rest of the day. Anyway, I was moseying along reading this person's Twitter, when my bad mood arrived!
The person and their friends were talking about how "skeptical" they were that Tom Fields-Meyer wasn't lying about his emotional reaction to having a disabled child, and insisting that they "weren't bad parents for saying it's hard." Did anyone say they were bad parents? Did anyone say it wasn't hard? (But you know that.) Basically Fields-Meyer gets turned into this GUILT MONSTER who's yelling at parents who grieve--parents who, I have to say, started this whole thing by accusing him of lying about his own feelings. Eventually the parents settled down a little--like, "Well, I guess it's okay for him to feel that way as long as no one is saying or implying anything negative about parents who grieve, or being judgmental about other parents' reactions."
Oh thank God. Those poor parents who grieve can't even step out the door without the vast throngs of judgmental parents who don't grieve just railroading over them and accusing them of being bad parents who don't understand how 100% footloose and fancy free it is to raise a kid with a disability. I am so sorry guys. Life is TOUGH.
This scenario doesn't really sound like anything I've ever seen in my life--like I said, the international brethren of people who aren't dicks is not a big group of people, especially when it comes to parent membership. But you know what, even if it was? No one has the right to have everyone agree with and support everything they do. Having a disabled kid doesn't give you that right and neither does anything else. People are allowed to disagree with you--both in a fairly gentle way where they just say that they prefer to do things differently, and by telling you that you're a major dick for doing things the way you do.
I personally feel that grieving for a person who is alive is fucked up, just like lots of other feelings that people have. I believe that there are feelings that are WRONG. Now, I am Christian, so I may talk about these things in a different way from people who aren't Christian, but what I mean is that we all are bad inside and have bad feelings, and sometimes we have to recognize a bad feeling and treat it like one. Some examples off the top of my head:
I hate waiting in line. Sometimes I want to scream or break something because I'm frustrated in line. Even when I'm not that worn out, I still can feel kind of angry at the other people in line, even though they're not doing anything bad to me. These are bad feelings and I shouldn't tell everyone in line that I'm mad at them.
Some people who don't know anyone who is trans might feel nervous and self-conscious upon meeting a trans person for the first time, or be consumed with nitpicky questions about how to treat the person "correctly." When you're in this situation, you wouldn't tell the person how uncomfortable you feel that they're trans, nor I hope would you go around telling a bunch of other people how uncomfortable you are. It's pretty rude and is going to make the awkwardness much worse.
A teenager sometimes feels jealous of her brother with a terminal illness, because he gets so much attention. She can't help how she feels, but is it reasonable? Would it be fair for her to talk about it constantly and insist that everyone around her validate her feeling?
And to return to an example that Fields-Meyer briefly touched on--some parents mourn when they find out their kid is gay. It's not necessarily as dramatic as disowning the kid. They just feel really sad because they thought they were going to have a straight kid who would do certain things, and now they have a gay kid who is going to do things differently.
How do people who don't consider themselves anti-gay think about these feelings?
People admit to having them. People admit to being sad and having to adjust, but ultimately these feelings are something to get past, and they are fucked up. They are feelings that come from living in an anti-gay society, and they are anti-gay feelings--the feelings of a world that wants everyone to be straight. Those feelings don't make you evil, but they are something awkward, something that can cause distance and a failure to connect with the real child--something to surmount. These feelings definitely aren't elevated as something parents have to have to have a valid experience. You wouldn't, I hope, accuse someone of being dishonest because they said they didn't mourn for their gay child.
I don't condemn anyone for having particular feelings but there is an obvious distinction between having feelings that are ableist--that come from a world that wants everyone to be non-disabled--and blaring those feelings in public with a self-righteousness that almost looks like pride. There's a difference between saying, "Wow, this blows, I'm having these awful feelings," and saying, "I have these feelings, and so does everyone, and don't ever judge me for having them or even make me think that you might be judging me." Because once you're doing things the second way, you're not just having the feelings, you're treating them like they're sacred. Like your right not to feel guilty for having picked up some ableism in your life trumps everyone else's right to be anti-ableist, or have opinions about parenting, or have opinions about anything that might involve you being wrong.
But okay guys, I have to talk about the guilt thing now. You can't even handle feeling guilty for a second on the Internet because some other guy might be "more self-actualized" than you are. You can't handle someone telling you that your feelings, although real, do not make sense. You can't handle someone like me coming out and saying, hey! Your feelings are bad!
If you can't handle that much guilt and judgment, how do you think you would deal with the guilt of being a disabled kid whose parents publicly talk about the fact that they expected a non-disabled kid and were heartbroken not to get one? Whose parents constantly defend their right to feel that way even when other people point out the dangers of nursing and normalizing those reactions?
I admit that most of this post has been making fun of you, because I've lived with guilt for too long to have patience for people who can't handle it. But I sincerely urge you to think about it, if you are one of those people and you somehow ended up here.
Poor Fields-Meyer had the nerve to write a book about raising a son with autism, in which he outright says that he didn't grieve for his imaginary non-disabled child. After being encouraged to grieve by a counselor:
I had no instinct to mourn. I had carried no conscious notion of what my children would be like — boys or girls, tall or short, conventional or a bit odd. I planned only to love them.
Fields-Meyer was obviously dealing with some difficult stuff and doesn't make an effort to hide it, but nonetheless, after Lisa Belkin quoted him in Motherlode she got a comment from someone "bristling over the whole assertion that [Fields-Meyer] never needed to mourn...as a fellow autism parent, I can’t help feeling that a piece of this story was brushed aside because it didn’t fit the feel-good theme." Yeah, fuck you, Tom Fields-Meyer! How dare you feel different from how someone else thinks everyone feels?
Fields-Meyer wrote a pretty sweet guest post on Motherlode where he basically defends his lack of mourning. He doesn't tell anyone what they should be doing or feeling, but he doesn't really make it sound like not mourning is just an emotional reaction. It's a principle.
I had always believed that the biggest mistakes parents make happen because a mother or (more often) a father is disappointed by the way a child is turning out. Over the years, I’d seen acquaintances whose parents wanted them to be doctors, or wanted them to go into the family business, or didn’t want their child to be gay. These parents saw their children as damaged goods because the child wasn’t what they’d had in mind. I just never wanted to be that parent.
The international brethren of people who aren't dicks rejoiced. But what did everyone else do?
I'm sorry to tell you that sometimes I read the Twitter of someone whose Twitter I shouldn't read. It makes life awful. Sometimes it puts me in a bad mood for the rest of the day. Anyway, I was moseying along reading this person's Twitter, when my bad mood arrived!
The person and their friends were talking about how "skeptical" they were that Tom Fields-Meyer wasn't lying about his emotional reaction to having a disabled child, and insisting that they "weren't bad parents for saying it's hard." Did anyone say they were bad parents? Did anyone say it wasn't hard? (But you know that.) Basically Fields-Meyer gets turned into this GUILT MONSTER who's yelling at parents who grieve--parents who, I have to say, started this whole thing by accusing him of lying about his own feelings. Eventually the parents settled down a little--like, "Well, I guess it's okay for him to feel that way as long as no one is saying or implying anything negative about parents who grieve, or being judgmental about other parents' reactions."
Oh thank God. Those poor parents who grieve can't even step out the door without the vast throngs of judgmental parents who don't grieve just railroading over them and accusing them of being bad parents who don't understand how 100% footloose and fancy free it is to raise a kid with a disability. I am so sorry guys. Life is TOUGH.
This scenario doesn't really sound like anything I've ever seen in my life--like I said, the international brethren of people who aren't dicks is not a big group of people, especially when it comes to parent membership. But you know what, even if it was? No one has the right to have everyone agree with and support everything they do. Having a disabled kid doesn't give you that right and neither does anything else. People are allowed to disagree with you--both in a fairly gentle way where they just say that they prefer to do things differently, and by telling you that you're a major dick for doing things the way you do.
I personally feel that grieving for a person who is alive is fucked up, just like lots of other feelings that people have. I believe that there are feelings that are WRONG. Now, I am Christian, so I may talk about these things in a different way from people who aren't Christian, but what I mean is that we all are bad inside and have bad feelings, and sometimes we have to recognize a bad feeling and treat it like one. Some examples off the top of my head:
I hate waiting in line. Sometimes I want to scream or break something because I'm frustrated in line. Even when I'm not that worn out, I still can feel kind of angry at the other people in line, even though they're not doing anything bad to me. These are bad feelings and I shouldn't tell everyone in line that I'm mad at them.
Some people who don't know anyone who is trans might feel nervous and self-conscious upon meeting a trans person for the first time, or be consumed with nitpicky questions about how to treat the person "correctly." When you're in this situation, you wouldn't tell the person how uncomfortable you feel that they're trans, nor I hope would you go around telling a bunch of other people how uncomfortable you are. It's pretty rude and is going to make the awkwardness much worse.
A teenager sometimes feels jealous of her brother with a terminal illness, because he gets so much attention. She can't help how she feels, but is it reasonable? Would it be fair for her to talk about it constantly and insist that everyone around her validate her feeling?
And to return to an example that Fields-Meyer briefly touched on--some parents mourn when they find out their kid is gay. It's not necessarily as dramatic as disowning the kid. They just feel really sad because they thought they were going to have a straight kid who would do certain things, and now they have a gay kid who is going to do things differently.
How do people who don't consider themselves anti-gay think about these feelings?
People admit to having them. People admit to being sad and having to adjust, but ultimately these feelings are something to get past, and they are fucked up. They are feelings that come from living in an anti-gay society, and they are anti-gay feelings--the feelings of a world that wants everyone to be straight. Those feelings don't make you evil, but they are something awkward, something that can cause distance and a failure to connect with the real child--something to surmount. These feelings definitely aren't elevated as something parents have to have to have a valid experience. You wouldn't, I hope, accuse someone of being dishonest because they said they didn't mourn for their gay child.
I don't condemn anyone for having particular feelings but there is an obvious distinction between having feelings that are ableist--that come from a world that wants everyone to be non-disabled--and blaring those feelings in public with a self-righteousness that almost looks like pride. There's a difference between saying, "Wow, this blows, I'm having these awful feelings," and saying, "I have these feelings, and so does everyone, and don't ever judge me for having them or even make me think that you might be judging me." Because once you're doing things the second way, you're not just having the feelings, you're treating them like they're sacred. Like your right not to feel guilty for having picked up some ableism in your life trumps everyone else's right to be anti-ableist, or have opinions about parenting, or have opinions about anything that might involve you being wrong.
But okay guys, I have to talk about the guilt thing now. You can't even handle feeling guilty for a second on the Internet because some other guy might be "more self-actualized" than you are. You can't handle someone telling you that your feelings, although real, do not make sense. You can't handle someone like me coming out and saying, hey! Your feelings are bad!
If you can't handle that much guilt and judgment, how do you think you would deal with the guilt of being a disabled kid whose parents publicly talk about the fact that they expected a non-disabled kid and were heartbroken not to get one? Whose parents constantly defend their right to feel that way even when other people point out the dangers of nursing and normalizing those reactions?
I admit that most of this post has been making fun of you, because I've lived with guilt for too long to have patience for people who can't handle it. But I sincerely urge you to think about it, if you are one of those people and you somehow ended up here.
07 September, 2011
I imagine this could be triggering
Also, one of the reasons that I find it so upsetting to be told that social skills do exist is that I think social skills are about as legit and dangerous as sexual skills--and by sexual skills, I mean the idea that being good/successful/able at sex is a flat line going from No to Yes.
Like lots of kids with autism I was put on antipsychotics and it screwed up my life. One of the things the psychiatrist used to explain why I should be on antipsychotics was the fact that when he asked me how high my sex drive was, I said it was "low," which indicated that I was depressed. I was 15 years old and felt terrible about myself and my body. I'm also queer and an s/m person among other things, so I haven't always felt like engaging with my sexuality because it's kind of alienating. Also, those things aside, some people just have low sex drives.
So we know that--just like not looking people in the eye is a way to have bad social skills--not wanting to have sex as much as other people do is a way to have bad sexual skills, to be bad (worthy of medicalization) in the area of sex.
I wonder what the other bad sexual skills would be. I imagine they'd be a lot like bad social skills.
Not liking the same things other people like.
Not reacting the way you should.
Crying when someone does something you're supposed to like.
Saying no to something that everyone's supposed to do.
Bringing up something weird just because it makes you happy.
Throwing a fit just because someone tried to make you do something you don't like.
Just not being interested at all.
Like lots of kids with autism I was put on antipsychotics and it screwed up my life. One of the things the psychiatrist used to explain why I should be on antipsychotics was the fact that when he asked me how high my sex drive was, I said it was "low," which indicated that I was depressed. I was 15 years old and felt terrible about myself and my body. I'm also queer and an s/m person among other things, so I haven't always felt like engaging with my sexuality because it's kind of alienating. Also, those things aside, some people just have low sex drives.
So we know that--just like not looking people in the eye is a way to have bad social skills--not wanting to have sex as much as other people do is a way to have bad sexual skills, to be bad (worthy of medicalization) in the area of sex.
I wonder what the other bad sexual skills would be. I imagine they'd be a lot like bad social skills.
Not liking the same things other people like.
Not reacting the way you should.
Crying when someone does something you're supposed to like.
Saying no to something that everyone's supposed to do.
Bringing up something weird just because it makes you happy.
Throwing a fit just because someone tried to make you do something you don't like.
Just not being interested at all.
06 September, 2011
what not existing means to me
Thinking of trying to post here more.
So I'll just say the social skills conversation makes me CRAZY*? It's become yet another of the things I can't even stand to talk about kind of like when someone tries to tell me I'm high-functioning and can self-advocate.
(*I don't EVER think it is a problem to talk about and examine language use but I'm not necessarily for having rules about it, so please don't comment and tell me why you don't think I should use the word crazy, I know why you think that and I think about it all the time.)
and today I flipped out at my friend just because he happened to say something about having social problems, in a kind of "well, you know, you and I are different this way" sort of tone. I think I said something like, "NO! I'm so fucking sick of people like you getting everything and being THE ONLY PEOPLE IN THE WORLD" which after I said that I was kind of like, shit, what am I talking about? what does that mean? why am I mad?
I am not really mad at my friend, or another Autistic friend at whom I blew up similarly about two weeks ago.
I'm mad because before I got to know other people with autism and DD, I thought I was some kind of Super Minority, in fact I did not consider myself to be on the autism spectrum at all, because I was told that "Asperger's" or "HFA" (the type of autism I was supposed to have, being a college student who could talk) was primarily about "lacking social skills" which apparently in a classic form meant not reading facial expressions (which I'd been tested on so I knew I could do it), insulting people by mistake, making people listen to speeches about your interests, not being polite, not knowing what people were feeling, and so on.
So I wasn't like this so I usually didn't consider myself to have ASD. In fact sometimes I knew things about people that other people didn't know.
At the same time, it was pretty clear I was kind of batshit* (in terms of how I processed life and how I felt sometimes) and I also had trouble with things related to friends that no one I knew had trouble with. For example when I was a first-year in college I got really attached to a friend named Clayton and wanted to spend time with him every day, so I would go sit outside his door. He would be happy to see me when he was there but he usually wasn't there so I'd just be sitting there reading and doing my homework and I HATED myself. I liked him so much that I wanted to see him all the time but I got so I hated everyone who lived on the same floor as him because I thought they were watching me and thinking how I wasn't normal and I was some kind of creepy stalker, and the next year when Clayton started living with the guy who had lived next door to him it took me a long time to stop hating him because I believed that he judged me.
The next year I had a friend named Noah who was a good writer but wanted to quit writing because it made him depressed. Noah spent a lot of time listening to me talk because he was a quiet person and it made me miserable because I felt that Noah and I didn't have an "equal" friendship, so I snuck onto Noah's computer and read pieces of his writing that he had forbidden me to ever read. It caused a huge problem in our friendship that I sometimes think has never gotten better, and it happened because I was trying to do what I thought was the right thing. (For some reason not one but two people who read my blog and who I attempted to be friends with have used this story to illuminate something about me they don't like. Thanks guys. I actually already feel terrible about it and find it hard to write about because it was an awful experience, AND I'm not the kind of person who would ever do something like that anymore, so it's not even a good example of whatever you don't like about me now.)
In the last year of high school and the first few years of college, I considered a girl named Lisa my best friend. I stopped considering her my best friend after a fight we had on the phone until four in the morning, my senior year, about ten months ago. A lot of our fight had to do with her feeling that I was mean and overly strident about anti-ableism, something she told me she "just [didn't] care about, I guess I should, because you're disabled, but I just don't." I could be wrong but I wonder if she thinks that identifying as disabled is some new thing I just invented/discovered and isn't who I really am. It's something that makes me feel oddly guilty and start questioning myself--because if Lisa doesn't remember me being disabled, then how is it even real? She's my oldest friend and should be the best judge of things that are phases or poses.
But it was a really long fight, and towards the end Lisa started talking about how when we were first becoming good friends (I was about 16 and she was about 15), whenever we had a conversation I would talk for a while and say, "I've been talking too much, now you talk." Lisa can be quiet with people early on, and it made her feel bad like I was constantly criticizing her for not talking in the way I thought was correct. She was saying that early on things from our friendship still affected the way she felt about me and it was hard to get out of resenting me for them.
Obviously, "I've been talking too much, now you talk," looks to me very much like sneaking on Noah's computer because I thought our friendship was too one-sided, and being upset that with Clayton I always sought him out. Whatever you call that problem, it was the biggest problem I've ever had in relating to other people.
Anyway, before I got to know other people with autism and DD, it was obvious to me that I had some disabled type problems like moving a bit differently and loving things too much and getting so frightened that I couldn't sleep or recognize words, AND I also considered myself to have "social problems" because this stuff with Noah, Clayton, and Lisa wasn't something that most people seemed to worry about. My social problems were not textbook autism problems, so I figured my autism must be very mild, but at the same time they seemed to wreck my life so much more than just being rude or not reading facial expressions. When I would interact with people who I imagined might be "autistic"--people who monologued a lot and weren't very sensitive--they seemed SO much happier and less distressed than I was and they seemed to pretty much have friends and not be killing themselves over whether they were calling their friend on the phone first or their friend was calling them. So how could I be more "high-functioning" than these people? My social life occasionally exploded into these awful periods where I was convinced everyone hated me and I felt sick. Also, it was nearly impossible to make new friends, because I figured that all of my friends' friends would never want to be friends with me because I was such a fucking freak.
Where am I going with this? Well, when I got to know some more people with autism and DD, and I began to think critically about this, I came to some conclusions:
1. A lot of people with autism aren't at all like the textbooks.
2. Autism is a lot more than social stuff, even for people who can talk. (This came out of a long period of thinking of myself as "more like a severely disabled person, except I can talk" because severely disabled people were allowed to have a lot of emotional troubles and problems with transition and stuff.)
3. Eventually: social skills don't exist.
4. I am a human.
I know I am disabled, and accepting that has really changed my life, but so has believing that I'm not socially impaired. In February I went into the first class of my last semester and made an awkward comment/joke to the girl sitting next to me. She looked at me blankly and I started to feel about as low as a Yeerk squashed under an Animorphed elephant's foot. It almost ruined my whole day--then I thought, we have different senses of humor! Maybe she doesn't have much of a sense of humor at all! She isn't a representative of humanity, and I haven't lost a war. We're just NOT THE SAME.
Or, God forbid, someone doesn't understand something I said. This used to be something that I would actually LIE about and argue about to anyone who I perceived as trying to tell me that I wasn't normal and couldn't do everything I thought I could. "Of course they understood me! You're just being overprotective! Maybe there's something wrong with YOU!"
Hey, guess what: my speech is hard to understand. AND sometimes I say things in a way that is jumbled and not connected. Oh no I'm going to drop out of school and delete myself from the universe. No, actually, I'm fine and I'm just going to say it again more accessibly. Life is good.
The problem is
I am very political about disability because politics has saved my life.
I have never been able to finish writing about going to a doctor this winter. I sought out learning testing because I was really confused by how slow I felt and how hard it was for me to do schoolwork, Activities of Daily Living, and other things. I seriously thought some kind of huge mass was missing in my brain because I just was not happening. I considered suicide because my friend gave me the relatively simple, but unexpected, task of taking his car to the gas station when I was driving it. I started crying and begging myself to drive into every truck I passed on the road, because I COULDN'T GO TO THE GAS STATION, it was too hard.
So, the doctor diagnosed me with some learning disabilities which aren't very severe and which I'd already been diagnosed with before. And he kept telling me I was really smart, something I'd also heard before. This increased an already very suicidal winter and early spring to fever pitch. I cried every time I met with him. I wanted a brain hole. Sometimes I still do. What is with the gas station? Why can't I just go there?
I don't know.
So, the worst thing about meeting with the doctor was that he didn't believe I had autism. In addition to getting my learning testing, I was also hoping to get a re-diagnosis of ASD because I hadn't had one in 8 years and I figured I might need more recent documentation at some point. Unfortunately, the doctor was very well versed in learning disabilities, and didn't know very much else about bad brains. Every time I talked to him, I would make the mistake of referring to myself as having autism, and there would be this little record-scritching sound.
"Autism! I thought we agreed to throw that out!" (in the same tone of voice he used when telling me I am smart)
Then he would explain to me that if anything he might be convinced I had Asperger's, not autism, because it is strongly associated with one of the learning disabilities I had (even though I had very good eye contact, he said). Every time he said this, I would explain that Asperger's, PDD-NOS, and Autistic Disorder are all on the autism spectrum, and when I referred to myself as having autism, I was just using the word that my disabled friends and I used about ourselves, which was in fact consistent with how the psychiatric community was coming to classify people, since the DSM 5 would have only the autism spectrum and not three separate diagnoses. He and I had this conversation probably six times, every time I met with him. The final time, I actually started yelling. "THERE ARE THREE DIAGNOSES THAT ARE CONSIDERED AUTISM SPECTRUM DISABILITIES. WHEN I SAY I HAVE AUTISM, I JUST MEAN THAT I HAVE BEEN DIAGNOSED WITH TWO OF THOSE DIAGNOSES IN THE PAST, AND I BELIEVE THOSE WERE CORRECT DIAGNOSES. I AM NOT THE ONLY PERSON TO REFER TO THESE THREE DIAGNOSES AS 'AUTISM.'"
"So that's the new thinking?" he said.
I began crying (again).
Now I know what you're thinking. Why didn't I just say Asperger's because that was a label he obviously would have been more likely to accept, understand, and associate with someone as "smart" as he thought I was? Why did I need to have this fight every time I talked to him?
I don't really know. I can't send letters if I think even one word is arrogant, shifty, dishonest, or undeserved (you can imagine this makes it difficult to apply for jobs, as I usually become really unhappy and take on some less urgent project to distract myself). I can't stop saying I have autism if that's what I think I have, and if having it has helped me define myself in a way that has radically changed for the better how I live my life.
I was not diagnosed by him IIRC, and I am not seeking rediagnosis now. Diagnosis of autism would require social impairment. Here's some stuff I could say:
I don't have a lot of friends.
I don't lose friends in fights more than anyone else, but I seem to grow apart from them really easily.
I have no romantic or sexual history to speak of.
I often don't fit in very well in the workplace.
I was bullied a lot when I was growing up.
I had few friends or no friends most of the time, from the time I was about twelve to when I started college.
These are actually true facts, but I don't consider myself socially impaired.
Here are two things that piss me off when other Autistic people argue with me and tell me that social skills DO exist:
1. when they tell me (admittedly, because I'm very confrontational and force them to say it) that they think I do have social impairment. I guess that this is really just a huge trigger/mental block thing where to me it means something much worse than what they mean, but to me, when someone says this, it's like they're saying that I have a false view of the world, and that makes me very upset.
2. when they tell me that I need to acknowledge that some other Autistic people are very different from me and have really different impairments from mine, and that even though my impairments aren't related to socialization, some people's are.
Number 2 makes me start thinking, what the fuck is autism then? Can autism actually be THAT different? But I will bite. Let's say that a few different disabilities look similar enough to have all been categorized as autism, and let's say that while all of my isolation and conflict with people blah blah DOESN'T come from social impairment, but just comes from other parts of my disability and/or me as an individual, other people with autism who have similar experiences with people actually DO have those experiences because of social impairment. The books don't describe me, but they do describe them. In fact, the DSM definition of autism describes them, and it doesn't describe me. So, the DSM and mainstream professional thought about autism at least starts to describe one group of people with autism, but doesn't describe me at all, and if I went to a psychologist and started telling them about what I consider to be my disability--i.e. cognitive and emotional problems and the relationship between those two things--it would take a miracle for them to diagnose me with autism. Because I have the kind of autism that's less real than the other kind.
So, to me, when someone starts saying, okay, well YOU need to understand that other people do have REAL SOCIAL PROBLEMS and REAL SOCIAL SKILLS DEFICITS, even if YOU DON'T, I feel like they are saying I'm fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably. I feel like I'm being kicked out of my own disability. No wonder I tend to prefer to call myself bad brains and insane in the membrane and Magikarp zombie waste of space. It seems obvious I belong in the Autistic community, and I even have that treasured thing: a fairly early diagnosis (from 1998, when I was nine), but I know that I would be said to have "grown out of it" or been misdiagnosed, by any reasonable medical professional--I know it can be taken away any time, and sometimes I feel that by being inseparable from the theory and values that prove to me I have a right to exist, I am making it easier for people to erase me.
I am saying this because I want to apologize to you, and probably other people I've forgotten doing this to before. It isn't you, and it's probably not logical. I panic and start hitting out.
So I'll just say the social skills conversation makes me CRAZY*? It's become yet another of the things I can't even stand to talk about kind of like when someone tries to tell me I'm high-functioning and can self-advocate.
(*I don't EVER think it is a problem to talk about and examine language use but I'm not necessarily for having rules about it, so please don't comment and tell me why you don't think I should use the word crazy, I know why you think that and I think about it all the time.)
and today I flipped out at my friend just because he happened to say something about having social problems, in a kind of "well, you know, you and I are different this way" sort of tone. I think I said something like, "NO! I'm so fucking sick of people like you getting everything and being THE ONLY PEOPLE IN THE WORLD" which after I said that I was kind of like, shit, what am I talking about? what does that mean? why am I mad?
I am not really mad at my friend, or another Autistic friend at whom I blew up similarly about two weeks ago.
I'm mad because before I got to know other people with autism and DD, I thought I was some kind of Super Minority, in fact I did not consider myself to be on the autism spectrum at all, because I was told that "Asperger's" or "HFA" (the type of autism I was supposed to have, being a college student who could talk) was primarily about "lacking social skills" which apparently in a classic form meant not reading facial expressions (which I'd been tested on so I knew I could do it), insulting people by mistake, making people listen to speeches about your interests, not being polite, not knowing what people were feeling, and so on.
So I wasn't like this so I usually didn't consider myself to have ASD. In fact sometimes I knew things about people that other people didn't know.
At the same time, it was pretty clear I was kind of batshit* (in terms of how I processed life and how I felt sometimes) and I also had trouble with things related to friends that no one I knew had trouble with. For example when I was a first-year in college I got really attached to a friend named Clayton and wanted to spend time with him every day, so I would go sit outside his door. He would be happy to see me when he was there but he usually wasn't there so I'd just be sitting there reading and doing my homework and I HATED myself. I liked him so much that I wanted to see him all the time but I got so I hated everyone who lived on the same floor as him because I thought they were watching me and thinking how I wasn't normal and I was some kind of creepy stalker, and the next year when Clayton started living with the guy who had lived next door to him it took me a long time to stop hating him because I believed that he judged me.
The next year I had a friend named Noah who was a good writer but wanted to quit writing because it made him depressed. Noah spent a lot of time listening to me talk because he was a quiet person and it made me miserable because I felt that Noah and I didn't have an "equal" friendship, so I snuck onto Noah's computer and read pieces of his writing that he had forbidden me to ever read. It caused a huge problem in our friendship that I sometimes think has never gotten better, and it happened because I was trying to do what I thought was the right thing. (For some reason not one but two people who read my blog and who I attempted to be friends with have used this story to illuminate something about me they don't like. Thanks guys. I actually already feel terrible about it and find it hard to write about because it was an awful experience, AND I'm not the kind of person who would ever do something like that anymore, so it's not even a good example of whatever you don't like about me now.)
In the last year of high school and the first few years of college, I considered a girl named Lisa my best friend. I stopped considering her my best friend after a fight we had on the phone until four in the morning, my senior year, about ten months ago. A lot of our fight had to do with her feeling that I was mean and overly strident about anti-ableism, something she told me she "just [didn't] care about, I guess I should, because you're disabled, but I just don't." I could be wrong but I wonder if she thinks that identifying as disabled is some new thing I just invented/discovered and isn't who I really am. It's something that makes me feel oddly guilty and start questioning myself--because if Lisa doesn't remember me being disabled, then how is it even real? She's my oldest friend and should be the best judge of things that are phases or poses.
But it was a really long fight, and towards the end Lisa started talking about how when we were first becoming good friends (I was about 16 and she was about 15), whenever we had a conversation I would talk for a while and say, "I've been talking too much, now you talk." Lisa can be quiet with people early on, and it made her feel bad like I was constantly criticizing her for not talking in the way I thought was correct. She was saying that early on things from our friendship still affected the way she felt about me and it was hard to get out of resenting me for them.
Obviously, "I've been talking too much, now you talk," looks to me very much like sneaking on Noah's computer because I thought our friendship was too one-sided, and being upset that with Clayton I always sought him out. Whatever you call that problem, it was the biggest problem I've ever had in relating to other people.
Anyway, before I got to know other people with autism and DD, it was obvious to me that I had some disabled type problems like moving a bit differently and loving things too much and getting so frightened that I couldn't sleep or recognize words, AND I also considered myself to have "social problems" because this stuff with Noah, Clayton, and Lisa wasn't something that most people seemed to worry about. My social problems were not textbook autism problems, so I figured my autism must be very mild, but at the same time they seemed to wreck my life so much more than just being rude or not reading facial expressions. When I would interact with people who I imagined might be "autistic"--people who monologued a lot and weren't very sensitive--they seemed SO much happier and less distressed than I was and they seemed to pretty much have friends and not be killing themselves over whether they were calling their friend on the phone first or their friend was calling them. So how could I be more "high-functioning" than these people? My social life occasionally exploded into these awful periods where I was convinced everyone hated me and I felt sick. Also, it was nearly impossible to make new friends, because I figured that all of my friends' friends would never want to be friends with me because I was such a fucking freak.
Where am I going with this? Well, when I got to know some more people with autism and DD, and I began to think critically about this, I came to some conclusions:
1. A lot of people with autism aren't at all like the textbooks.
2. Autism is a lot more than social stuff, even for people who can talk. (This came out of a long period of thinking of myself as "more like a severely disabled person, except I can talk" because severely disabled people were allowed to have a lot of emotional troubles and problems with transition and stuff.)
3. Eventually: social skills don't exist.
4. I am a human.
I know I am disabled, and accepting that has really changed my life, but so has believing that I'm not socially impaired. In February I went into the first class of my last semester and made an awkward comment/joke to the girl sitting next to me. She looked at me blankly and I started to feel about as low as a Yeerk squashed under an Animorphed elephant's foot. It almost ruined my whole day--then I thought, we have different senses of humor! Maybe she doesn't have much of a sense of humor at all! She isn't a representative of humanity, and I haven't lost a war. We're just NOT THE SAME.
Or, God forbid, someone doesn't understand something I said. This used to be something that I would actually LIE about and argue about to anyone who I perceived as trying to tell me that I wasn't normal and couldn't do everything I thought I could. "Of course they understood me! You're just being overprotective! Maybe there's something wrong with YOU!"
Hey, guess what: my speech is hard to understand. AND sometimes I say things in a way that is jumbled and not connected. Oh no I'm going to drop out of school and delete myself from the universe. No, actually, I'm fine and I'm just going to say it again more accessibly. Life is good.
The problem is
I am very political about disability because politics has saved my life.
I have never been able to finish writing about going to a doctor this winter. I sought out learning testing because I was really confused by how slow I felt and how hard it was for me to do schoolwork, Activities of Daily Living, and other things. I seriously thought some kind of huge mass was missing in my brain because I just was not happening. I considered suicide because my friend gave me the relatively simple, but unexpected, task of taking his car to the gas station when I was driving it. I started crying and begging myself to drive into every truck I passed on the road, because I COULDN'T GO TO THE GAS STATION, it was too hard.
So, the doctor diagnosed me with some learning disabilities which aren't very severe and which I'd already been diagnosed with before. And he kept telling me I was really smart, something I'd also heard before. This increased an already very suicidal winter and early spring to fever pitch. I cried every time I met with him. I wanted a brain hole. Sometimes I still do. What is with the gas station? Why can't I just go there?
I don't know.
So, the worst thing about meeting with the doctor was that he didn't believe I had autism. In addition to getting my learning testing, I was also hoping to get a re-diagnosis of ASD because I hadn't had one in 8 years and I figured I might need more recent documentation at some point. Unfortunately, the doctor was very well versed in learning disabilities, and didn't know very much else about bad brains. Every time I talked to him, I would make the mistake of referring to myself as having autism, and there would be this little record-scritching sound.
"Autism! I thought we agreed to throw that out!" (in the same tone of voice he used when telling me I am smart)
Then he would explain to me that if anything he might be convinced I had Asperger's, not autism, because it is strongly associated with one of the learning disabilities I had (even though I had very good eye contact, he said). Every time he said this, I would explain that Asperger's, PDD-NOS, and Autistic Disorder are all on the autism spectrum, and when I referred to myself as having autism, I was just using the word that my disabled friends and I used about ourselves, which was in fact consistent with how the psychiatric community was coming to classify people, since the DSM 5 would have only the autism spectrum and not three separate diagnoses. He and I had this conversation probably six times, every time I met with him. The final time, I actually started yelling. "THERE ARE THREE DIAGNOSES THAT ARE CONSIDERED AUTISM SPECTRUM DISABILITIES. WHEN I SAY I HAVE AUTISM, I JUST MEAN THAT I HAVE BEEN DIAGNOSED WITH TWO OF THOSE DIAGNOSES IN THE PAST, AND I BELIEVE THOSE WERE CORRECT DIAGNOSES. I AM NOT THE ONLY PERSON TO REFER TO THESE THREE DIAGNOSES AS 'AUTISM.'"
"So that's the new thinking?" he said.
I began crying (again).
Now I know what you're thinking. Why didn't I just say Asperger's because that was a label he obviously would have been more likely to accept, understand, and associate with someone as "smart" as he thought I was? Why did I need to have this fight every time I talked to him?
I don't really know. I can't send letters if I think even one word is arrogant, shifty, dishonest, or undeserved (you can imagine this makes it difficult to apply for jobs, as I usually become really unhappy and take on some less urgent project to distract myself). I can't stop saying I have autism if that's what I think I have, and if having it has helped me define myself in a way that has radically changed for the better how I live my life.
I was not diagnosed by him IIRC, and I am not seeking rediagnosis now. Diagnosis of autism would require social impairment. Here's some stuff I could say:
I don't have a lot of friends.
I don't lose friends in fights more than anyone else, but I seem to grow apart from them really easily.
I have no romantic or sexual history to speak of.
I often don't fit in very well in the workplace.
I was bullied a lot when I was growing up.
I had few friends or no friends most of the time, from the time I was about twelve to when I started college.
These are actually true facts, but I don't consider myself socially impaired.
Here are two things that piss me off when other Autistic people argue with me and tell me that social skills DO exist:
1. when they tell me (admittedly, because I'm very confrontational and force them to say it) that they think I do have social impairment. I guess that this is really just a huge trigger/mental block thing where to me it means something much worse than what they mean, but to me, when someone says this, it's like they're saying that I have a false view of the world, and that makes me very upset.
2. when they tell me that I need to acknowledge that some other Autistic people are very different from me and have really different impairments from mine, and that even though my impairments aren't related to socialization, some people's are.
Number 2 makes me start thinking, what the fuck is autism then? Can autism actually be THAT different? But I will bite. Let's say that a few different disabilities look similar enough to have all been categorized as autism, and let's say that while all of my isolation and conflict with people blah blah DOESN'T come from social impairment, but just comes from other parts of my disability and/or me as an individual, other people with autism who have similar experiences with people actually DO have those experiences because of social impairment. The books don't describe me, but they do describe them. In fact, the DSM definition of autism describes them, and it doesn't describe me. So, the DSM and mainstream professional thought about autism at least starts to describe one group of people with autism, but doesn't describe me at all, and if I went to a psychologist and started telling them about what I consider to be my disability--i.e. cognitive and emotional problems and the relationship between those two things--it would take a miracle for them to diagnose me with autism. Because I have the kind of autism that's less real than the other kind.
So, to me, when someone starts saying, okay, well YOU need to understand that other people do have REAL SOCIAL PROBLEMS and REAL SOCIAL SKILLS DEFICITS, even if YOU DON'T, I feel like they are saying I'm fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably. I feel like I'm being kicked out of my own disability. No wonder I tend to prefer to call myself bad brains and insane in the membrane and Magikarp zombie waste of space. It seems obvious I belong in the Autistic community, and I even have that treasured thing: a fairly early diagnosis (from 1998, when I was nine), but I know that I would be said to have "grown out of it" or been misdiagnosed, by any reasonable medical professional--I know it can be taken away any time, and sometimes I feel that by being inseparable from the theory and values that prove to me I have a right to exist, I am making it easier for people to erase me.
I am saying this because I want to apologize to you, and probably other people I've forgotten doing this to before. It isn't you, and it's probably not logical. I panic and start hitting out.
04 September, 2011
Crazy House Announcement
Crazy House is going to be a website that houses some art, or pictures and videos of art depending on the form of the art. (Art is something you make, such as sculpture, music, stories, film, television/video series, zines, food, a building, an installation, graffiti, a play, a musical, or a magic trick.)
Crazy House is the name of a book by Henry Darger, an outsider artist. Outsider art is a hard-to-define category, but many people labeled as outsider artists have psychiatric or developmental disabilities.
Crazy House the website is an imaginary house where you can have your own room. Which is to say that you could apply to be hosted on the domain which I have yet to buy, and then you could make a site for your art. All of these sites would be linked to from the main page, and would make up the Crazy House.
It’s perfectly worth asking why this is necessary when there are so many places on the Internet where you can upload and share art. I’m not really sure why I want to make the Crazy House, except that I like the idea of sharing an imaginary house with other people instead of just having a lot of usernames on different huge websites. I also like the idea of an art space that is somewhat centered on disabled identity.
I would like to buy the Crazy House domain with other people for two reasons. First, it would be cheaper, and second, I would like the Crazy House to be something that isn't dependent on one person, but on several people. If anyone is interested in buying the Crazy House domain with me please email me at [] (I'm hoping to figure this out by November or December).
If anyone can't or doesn't want to be part of buying the Crazy House, but would like to room in the Crazy House, sit tight. Hopefully I will be back in November or December telling you how to do so. And please signal boost.
Amanda
Crazy House is the name of a book by Henry Darger, an outsider artist. Outsider art is a hard-to-define category, but many people labeled as outsider artists have psychiatric or developmental disabilities.
Crazy House the website is an imaginary house where you can have your own room. Which is to say that you could apply to be hosted on the domain which I have yet to buy, and then you could make a site for your art. All of these sites would be linked to from the main page, and would make up the Crazy House.
It’s perfectly worth asking why this is necessary when there are so many places on the Internet where you can upload and share art. I’m not really sure why I want to make the Crazy House, except that I like the idea of sharing an imaginary house with other people instead of just having a lot of usernames on different huge websites. I also like the idea of an art space that is somewhat centered on disabled identity.
I would like to buy the Crazy House domain with other people for two reasons. First, it would be cheaper, and second, I would like the Crazy House to be something that isn't dependent on one person, but on several people. If anyone is interested in buying the Crazy House domain with me please email me at [] (I'm hoping to figure this out by November or December).
If anyone can't or doesn't want to be part of buying the Crazy House, but would like to room in the Crazy House, sit tight. Hopefully I will be back in November or December telling you how to do so. And please signal boost.
Amanda
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