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.
Showing posts with label ted. Show all posts
Showing posts with label ted. Show all posts
24 September, 2011
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."
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.
17 August, 2011
why is arguing with you the only self-advocacy that counts?
I still feel totally sad about the [location redacted] drama yesterday. The Internet can kill you with the way it lets you interact with people you like theoretically from a distance.
I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.
The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.
First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.
But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.
I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.
Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.
Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.
Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:
*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments
All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?
Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.
So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.
I used to read [] and [name redacted, let's call him Ted] was one of those people whose blog you read and imagine that they'd probably be your kind of person if you ever met or talked to them. Now we've had an exchange where he told me there's this big difference between Zoe, me, Julia, etc., and people who "can't self-advocate" and if that statement offends me it's my problem not his.
The more I talk, listen, read, and write about anti-ableism, the more certain arguments and statements become painful for me to even hear. Which is kind of a huge problem and makes me think I will have to bow out of here sooner or later. But for the time being, I'll just say that the belief in a concrete division between people who can and can't self-advocate is really frustrating to me.
First it's frustrating because labeling some people as unable to self-advocate takes away their voice. Ari Ne'eman once wrote something about the difference between action and behavior. Actions are things that people choose to do for a reason and, if a person's not able to use words describe their feelings and needs and desires, the things they do are a pretty good window into what their feelings and needs and desires might be, and therefore are a form of self-advocacy. When all of a disabled person's actions are categorized as "behavior" that needs to be changed to look a certain way--instead of as communication--this is the act of taking away someone's voice.
But Amanda Baggs addressed this much more clearly in The Meaning of Self-Advocacy, maybe because unlike Ari and me she is someone who has been labeled unable to self-advocate, and isn't looking at this from the outside.
I really want to address the other category, the one I'm supposed to belong to: people who can self-advocate. Zoe was told she belonged to this group due to writing a blog post. I was told I belonged to the group due to writing a comment on that blog post.
Now, I'm sorry if I'm underestimating the power of the Internet, but I don't think writing a comment on a blog post is especially impressive, and by some people's standards it would not be self-advocacy. Arguably, neither is having a blog. I wrote something for ASAN one time but otherwise I have never been involved with any self-advocacy or disability rights organizations; I've never been to a disability rights protest or a self-advocacy conference, summit, etc.; I've never spoken formally to a group about being disabled, or about anti-ableism; I've rarely even tried to talk to people, informally, about anti-ableism; I've never written a letter to a newspaper or made a phone call in support of disability rights.
Some of these things--like speaking formally about anti-ableism--are things I might be able to do, but just haven't gotten an opportunity or motivation to do. Other things, like writing letters to newspapers and going to protests, are things I very much can't do. In fact I remember a time when I got really upset and felt like a failure for wanting to support anti-ableism when I wasn't able to write a letter to the newspaper.
Don't worry guys, my impairments will never stop emerging! In addition to this more obviously political stuff, there are some more personal acts that are often described as "self-advocacy." For a lot of my life my parents (and the very occasional support staff I have grudgingly been allowed) have been trying to get me to do these things:
*Successfully use disability services when I was in college
*Ask for help from teachers/professors when I was in school
*Ask for help from boss/coworkers at a job
*Explain my disability, when it is relevant to help I need
*Ask people to write letters of reference for me, or be a phone reference
*Call places to follow up after I've applied for a job
*Make my own doctor's appointments
All of these things I either can't do at all, or find so hard to do that they almost never happen. Why yes, I am looking for a job right now and I'm scared as hell, and if I don't get one or end up getting the only job I was able to drag myself through the application process for and am stuck with it no matter what it is...like, I really won't feel better when I think about writing a two- or three-sentence comment on Zoe's blog?
Ultimately, I guess I will feel better when I think about writing this blog (the entire blog, not this particular post) because I know that it's helped some other disabled people think about disability and ableism. And ultimately I guess I do consider myself a self-advocate and this blog a form of self-advocacy, but I don't think it fits into conventional standards of either political or personal self-advocacy. I think it pretty much is in there with screaming and smashing, because it is a last resort, and because most non-disabled people seem to think it is a waste of time.
So I guess what I mean to say is, I don't really think I am a self-advocate in a way that someone else isn't. And it's probably clear why I find it painful to be told I am, when there is so much I can't say for myself.
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