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?


  1. I don't get why people are saying that the comments were so vicious to parents. I really don't. Were there maybe a handful of comments that fit this mold? Yes, probably, but to my mind they comprised a very small proportion of overall autistic comments. It's really disheartening for me to see that ANY forum in which autistic people are vocal and speak plainly about privilege and oppression gets read as "autistic people are being mean and unwelcoming towards the poor parents."

    In short, ITA with you.

  2. also, like, I know I am becoming a broken record, but parents/other people telling a disabled person what their abilities are is a situation I just cannot handle. I think it's completely nuts that anyone would think that's an okay thing to do to someone you don't agree with, especially when it gets to the point where someone does it, other people point it out, and the first person doesn't apologize. I consider that kind of statement a personal attack not only on one disabled person but on all disabled people.

    I think we all remember when this happened during the dialogue and the person who did it NEVER apologized or even acknowledged what had happened. that is such an unwelcoming thing for disabled people! so why is there this attitude that unwelcoming stuff only happened to parents?

  3. I thought it was pretty uniformly awful, with parents bending over backwards to show how "nice" they are without actually attempting to understand disabled people's perspectives. And then some not so nice parents. I REALLY disliked that stuff about how we need to reach out to parents or something. Most of them are only interested in us insofar as we're useful to them.

    Actually I was reading about the history of labor organizing recently and how white people have basically repeatedly (from the 1600's to the 1900's, the book ends around 1970) recruited black people to get better working conditions, wages etc, but then turned against black people immediately after getting what they wanted, literally doing things like driving black people out of their jobs etc. So when white people can get something they're all for "racial unity" but when it means helping black people they actually start organizing AGAINST black people. And this literally happened over and over to an extent that was shocking to me even though I was already waaayy more critical of "white society" than most people.

    I know this is kind of a risky thing to say and I'm not trying to say that race and disability are the same thing (or compare how bad anything is), but the whole power dynamic here reminds me of that. I have no anger at the autistic people who are trying to communicate this stuff, I just question how useful it actually is and reject that it's an obligation for us. Autistic people are ALREADY working to do things that benefit developmentally disabled children. We certainly don't owe parents anything for that. Nor do I see any reason to "reach out" to them more than any other group of people.

    Basically I see the "oh they're so hostile to parents" stuff (and all the misreading, etc) as straight ahead, albeit often subconscious, prejudice.

    [There were a handful of parent commenters I thought "got it." Although I expect even this statement would be misinterpreted by most of them as unrealistic expectations or something. No I don't expect anyone to act perfectly.]

    I also didn't see ANY disabled people who were actually hostile. I could have missed someone, but it clearly wasn't the majority.

  4. I feel a lot like you about all of this you wrote, the dialogue, the comments and the twitter comments, I was happy with the reaction and didn't see anything terrible being said to parents, I thought about this a lot, I wrote a post about it too, I think many parents went there without any context or knowledge, many parents didn't know the terms being used like privilege, argument from tone and things like that, they just got their views challenged in a strong way and that was agressive for them without knowing what we were talking about and why we were talking like that, I also met great parents who didn't know any of what we were saying but learned and listen, that was great.

    Maybe in a dialogue more politeness and kindness are necessary so it doesn't look like a protest but more like a negotiation, I think it's strange but maybe this should be like a diplomatic talk in moments like the TPGA Dialogue so we could make others think without an initial shock that makes them go away.

    It makes me sad that nobody talked about how some things that parents said were extremely hurtful, when that happened there are always excuses, even the ones I'm giving above, but when disabled people talk there are many who said that we are too angry and agressive, some things I read make autistic adults look like an angry mob.

    It was really painful some things I read from parents like 'advocacy wars' or 'everything a parent says is wrong', 'they are not really disabled and struggling', 'raising an autistic child is too difficult' and the thinking of disabled vs. nondisabled fights, nobody apologizes for that.

    Many things I read from some parents were wonderful too, and some felt sorry for saying things that were hurtful, one parent even wrote a nice email too me, I never get emails, so that was nice and we disagreed in the comments before, so I'm not saying all nondisabled people are bad, far from it, I'm saying that there was a double standard when judging.

    I did apologize for hurting anyone and tried my best to see others perspective, because I don't believe that just because some in another group acts badly it doesn't mean I should do the same, but that I need to learn better. I don't like hurting others feelings, even if my feelings don't matter so much.

    In general I am disappointed with what I read now, it wasn't really my place to comment there since I'm an outsider in all of this, I'm just an (invisible) autistic and disabled person, but not part of any community or anything, I think I will crawl back to my little corner of the internet now. :)

    This comment may be confusing and badly written, sorry about that.

  5. Aww Alicia don't do that! You were so great in the comments.

  6. I feel like I was the one the parents were complaining about? So I stopped commenting. Didn't stop anyone from talking about how ~angry~ everyone was.

    The comments section got better towards the end. I still think that the feelings of nondisabled parents were centered in every conversation, and that harmful things being said about autistic people were left unaddressed.

  7. I know people don't comment here because they want to talk to me but...

    Alicia Lile: I'm pretty sure if people who felt like you didn't get to count then more than half of disabled people wouldn't get to count either.

    Julia: People say you're mean because you're direct and don't sugar coat things. But I've never seen you do the online equivalent of shouting someone down and sometimes people who are direct are really, really necessary. So I hope you never feel like you're making autistic people look bad or something because it's the opposite (although people like Zoe are equally necessary).

    In this case, everyone was seen as mean. Why? Because people weren't willing to kowtow to the parents.

    At least someone of them admitted to being confused and not understanding where disabled people were coming from or what they were trying to say. That's a start.

    internet waarrrzzz

    (I'll stop now, you all know what I think now)

  8. I like you Pancho. Will you start a blog for my birthday?

  9. that depends...

    when is your birthday?

    is this an attempt to stop me from slowly taking over your blog?

    are you sure you could handle me being semi open about what I think?

    is it worth becoming deeply marred by having any association to me whatsoever?

    (I hope you enjoy your birthday)

  10. my birthday is 1 1 1 1, you have 40 days.

  11. and like I think so, do you secretly hate me and that's what the blog's going to be about?

  12. I guess we'll find out in 40 days then! That is a great birthday by the way.

    I do not secretly hate you, actually I think you're really cool. But I am probably the most critical person you have ever met of some things you (and people who like you) probably/definitely identify with.

    I generally try, often unsuccessfully, to make this unnoticeable to other people but if I had a blog I wouldn't be able to. I think you'd probably be mostly okay with it but I've been wrong before.

  13. Do it, I'm interested to see.

  14. Just found this round-up of commentary on the Dialogues. Warning: a lot of this is incredibly frustrating to read. But I had to share it once I found it.


    Sigh. I honestly just don't understand why some people felt "hostility" towards non-disabled parents. It just makes no sense to me....except in as much as people from a privileged class resent being in a situation where maybe their own concerns and feelings aren't centered 100% of the time. (Though I'd say that the backlash to the dialogue has done a fine job of re-centering them!)

    And as for the issue that many parents have DSM diagnoses/other disabilities...okay. I get that, and I personally try not to use "neurotypical" to mean "non-autistic." When I say NT, I mean someone without any mental/neurological conditions. When I say non-autistic, I mean just that. But how can you expect us to know that you're (possibly) disabled unless you say so explicitly? If you want to be treated as a PWD in this conversation, you need to identify as such.

    Sorry about hijacking your comments with a long rant. I just needed to get some things out.

  15. Some of the comments were really lovely. Some made me want to spork my brain out through my ear.

    Like, on the day I posted, that mother being all WHY DON'T YOU HAVE TO HEAR MEEEEEEEEEEE? Well, Madame, I hear your voice and voices like yours all the time. Voices like yours are the reason I had all that crap to write about (and it was easily the most emotionally exhausting thing I have ever written).

    The parent centering irritated me. And the people getting all bent out of shape bc they got called on argument-from-tone (which I keep meaning to write about, because it's basically "you sound like an autistic person so I don't have to listen to you", but anyway), they totally missed the clueship. No, dear delicate flowers, we are not trying to 'shut you down', we are pointing out the way in which you are trying to shut US down.

    Julia, I didn't think you were mean. I didn't actually see anyone autistic being mean-granted, I'm kind of a dick sometimes, but it seemed to be like everyone was trying to keep their civility hats on.

    Some people were, in fact, really lovely. Some people will, in fact, probably NEVER get it.

  16. I thought it was really intense.

    When I went back to skim through all the comments with 10 days retrospect, I thought there really wasn't as much dismissiveness from parents as I originally felt there was--it was just that the few really cutting, blatant examples of it were so overwhelming to the conversation.

    I did think it was useful at the end of the day.

    I was hugely encouraged by the one frequent-commenting parent (and I'm sure I don't have to name names here) who began the comments with one of the most mean and clueless comments I've ever seen, but seemed to truly come around to being able to listen to where we were coming from and be willing to learn something and consider some things she wouldn't have before about what her own son was going through. That somebody could go through what she did in a week, makes me hopeful.

    Alicia, I thought you were great all the way through. It makes me sad that you feel like you're invisible and you don't count--you do count and I think you articulated many things very well. I spent much of the dialogues trying to push back against the various ways that *I* get made to feel like I shouldn't count because of what my life experience is...and whatever your own experience is, if it's different or better or worse or whatever from most people's, it still counts.

  17. I would like to join the "Alicia made amazing comments" fanclub as well.

  18. I was wondering how those parents would feel with some of the arguments I read about privilege in places like tumblr were people are not trying to be nice.

    Thank you all for the comments. :)