Autistic Hedgehog
Month
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren’t actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
Despite being a long-term intermittant lurker on Skepchick, I never made an account to comment because, honestly, commenting on blogs I’m not 100% comfortable on freaks me out. And Skepchick, sadly, is one that I’m not 100% comfortable on exactly because of their history of massive fails on disability issues, particularly DD issues.
It looks like Skepchick is now being added to my ‘unsafe blogs to visit’ list. After reading through the comments thread, I’m honestly sick to my stomach at the blatant neuro-ableism, gaslighting, disrespect, unchecked privilege, willful ignorance, and dismissivenes displayed by Skepchick bloggers and commenters (particularly Sarah and Will) towards autistic people.
To those of you with the spoons to keep trying to get through to these people, I wish you all the best and will be silently cheering you on. Sadly, given what I’ve seen displayed in that comments thread and Skepchick’s previous history, I can’t say that I’m confident about your chances (but I’m still your silent cheer squad!)
And in closing: neurotypical privilege is being allowed and encouraged to speak over neuroatypical people despite a policy of ‘outsiders’ not being allowed to speak for minorities that they’re not part of.
No kidding. I don’t blame you for not wanting to get involved. The Almighty herself has shown up to tell me how “awful” and “ignorant” I am, for “assuming” they would treat developmentally disabled people poorly. Except that’s exactly what they were and are doing, so there you have it.
Like people are straight up telling me they have a history of this behavior and I’ve seen nothing to indicate that isn’t true, and have been in fact treated horribly, and then I get treated even more horribly.
Rebecca Watson, ladies and gentlemen. The fucking anti-developmental disabilities Richard Dawkins. The universe loves her irony a bit too much, methinks.
Oh hey so I was the person who initially called out their ableism. Which was really really bad, as was their able tears all over the place reaction. It wasn’t a “kerfuffle”. It was SKEPCHICK DONE FUCKED UP.
I wrote a thing about it, but it’s fairly vague bc I am still so triggered.
http://timetolisten.blogspot.com/2014/02/skepticisms-ableism-problem-again.html
But yeah, they’re looking for their Token Disabled Friend. And they’re being just horrendous and any self respecting disabled person would not want anything to do with it, it’d be being a token.
I just…my jaw is on the floor right now. Are you seriously telling me that it was an autistic person who called them out in the first place and that their “solution” to the problem…involved ignoring and gaslighting another autistic person? For reals? I mean, clearly it did, but holy shit, the cognitive dissonance is staggering right now.
I am so sorry you went through that. So, so sorry. I know from my own experience just how vicious and abusive they are, and it is awful, and I’m not surprised you’re still triggered. I’ve cried to the point of dehydration today.
People, you should read sherlocksflatafflect’s post there, definitely. Because holy shit, holy shit.
Meanwhile, Rebecca Watson is being a bully who refuses to allow any comments that don’t agree with her.
Is this the same Skepchick who was part of the whole Elevatorgate kerfuffle? I really felt for her when people were taking her simple statement out of context and making her out to be some raving banshee! The fact that this lady turns out to be a neurotypicalistic asstwit is very disheartening, indeed!
That would be her, yes. She and everyone working for her site are apparently neurotypicalistic asstwits, since they chased their one openly autistic writer off the site for standing up for our community over this.
I don’t, I’m sorry.
K (sherlocksflataffect) probably knows more.
I don’t, I’m sorry.
K (sherlocksflataffect) probably knows more.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This…
OH BREAKING NEWS.
The ONE openly Autistic contributor to any of the Skepchick sites, the ONE person who had any connections to actual disability activists?
They just booted him for “undermining” (read as: stating concerns FROM THE COMMUNITY) this project. And apparently for sharing private conversations, though they have a weird definition of private.
This is not ok. Just so we know.
Gosh, this sounds so familiar. It’s almost like that time Richard Dawkins got Rebecca Watson tossed out of speaking at the Reason Rally because he’s a giant privileged bully who refuses to admit he was wrong.
I woke up dizzy this morning and it’s not going away, so this is all I really have the spoons to say on the moment. But I’m not done. I won’t be silenced.
I mean really. I’m ”beyond the pale” for suggesting they don’t care about ableism? Ha! I’m not the one censoring and booting actual disabled people trying to speak for themselves.
Double dare you to email this or similar comparison to her. *hi I am so over them can you tell?*
Pssh, email, nothing. I’m planning an open letter. It’ll take some doing to put together and it will be seriously triggering, but my husband has promised to support me through it. She might be able to silence me on her blog, but she can’t silence me on mine.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This…
OH BREAKING NEWS.
The ONE openly Autistic contributor to any of the Skepchick sites, the ONE person who had any connections to actual disability activists?
They just booted him for “undermining” (read as: stating concerns FROM THE COMMUNITY) this project. And apparently for sharing private conversations, though they have a weird definition of private.
This is not ok. Just so we know.
Gosh, this sounds so familiar. It’s almost like that time Richard Dawkins got Rebecca Watson tossed out of speaking at the Reason Rally because he’s a giant privileged bully who refuses to admit he was wrong.
I woke up dizzy this morning and it’s not going away, so this is all I really have the spoons to say on the moment. But I’m not done. I won’t be silenced.
I mean really. I’m "beyond the pale" for suggesting they don’t care about ableism? Ha! I’m not the one censoring and booting actual disabled people trying to speak for themselves.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site…
On the upside, Will finally came out with some cognitively-accessible language answers: No, parent bloggers will not be a thing. I had to resist the urge to write “Was that so fucking hard?!” I did write “this is how you do cognitively-accessible language for me”
I’m not keen on how Will is lumping autistichedgehog and her husband together as a single entity in posts, though, and I might’ve monologed a bit on why the posts were not cognitively accessible to me. Posting while atopy flare and sick and headachy = monolog filter not operational. Whatever, I think they needed a rundown of why, no, our concerns had not been answered until someone came out with an explicit answer.
Also: snarling at autistic people for having trouble with subtext and implication? Not on. Don’t tell me to “re-read” ad infinitum, clarify.
Also, yes, I am PO’d. So PO’d I made a tumblr while migraine auraing and asthma flaring and assorted other histamine fun times-ing. When adrenaline leaves, I will crash hard and probably need a pillow fort day. My posts in the thread are very academic b/c that’s kind of my defense mechanism when I feel threatened/anxious/angry. More nervous/threatened/angry I feel in an unsafe space, more distant/obtuse my language gets. Frankly, I’m surprised I didn’t start breaking out the hexa- and heptasyllabic words in my vocabulary.
Ye-ah, way, way too little, and way too fucking late.
Chemgeek, this was not you having a cognitive problem. You didn’t read anything wrong at all. The specific question that was asked was literally if parents of disabled/autistic children could apply. And the answer given was literally that they could and would be taken under consideration.
Sarah tried to make up some bull about “what if a sixteen-year-old who can’t write well wants to apply”, but that was bull. She was not talking about any form of assisted communication, even if that’s what she’s trying to claim now. At no point did she or any other Skepchick staff member say “Parents can help their children apply but cannot apply themselves.” Again, the question the answered was not “Can parents of disabled/autistic children help their children apply?” it was “Can parents of disabled/autistic children apply?”
They said yes to that. And when people protested and explained why they had a problem with this, they made no attempt to engage. There was not anything to remotely demonstrate that it was a misunderstanding that needed to be cleared up. In fact, it was largely ignored, until they decided to attack me.
Then suddenly I was being told I was “repeatedly demanding an answer” when in fact at that point I had posted what, once? With a polite suggestion to look at the Autistics Speaking Day blog to see why their stance on this matter was problematic. Rebecca Watson herself showed up to call me awful and ignorant and reactionary and a few other things, too, before straight up censoring me and my husband.
In a sense, Will’s clarification now is just more of the same gaslighting that was already occurring. He’s trying to make it look like that’s what they were saying all along, but it most emphatically was not, because they never once said it. And in point of fact, he and more than one person claimed they weren’t responding because of some bullshit about “not wanting to disagree with marginalized people because it might marginalize them further.” But if they didn’t think it was okay to allow parents to blog on behalf of their children, why the word disagree? I said “Parents should not be allowed to apply.” They said “We’re not responding because blah blah blah disagreeing with marginalized people."
They said they disagree with me about parents not being allowed to apply. Never did they say parents wouldn’t be allowed to blog on their children’s behalf. And any child applying with their parent’s assistance would be applying for themselves. Thus the parent would not be applying. So if Sarah had said "Parents can help their children apply but not apply for themselves” that would be one thing. But that’s not what she said, that’s not what any of them said, and no matter how they try to claim it, that’s not what their subtext and implications said, either.
I write for a living. I am damn good at subtext and implications, especially when it comes to allistic people, because it’s the only way to protect myself from them. Chemgeek, do not let them convince you that you were the one who misunderstood, because you understood just fine. Right now they’re trying to cover their asses. Just like they’re claiming it was all a “little kerfuffle” over the word st*pid when the evidence shows it wasn’t, they’re trying to minimize what happened here. They’re trying to make it look like they weren’t horribly abusive and viciously ableist to disabled people.
But they were.They are 100% in the wrong here and you misunderstood nothing. It’s all there in black and white, and they’ve damned themselves with what they’ve said as much as with that they didn’t. They think that now they’ve bothered to answer, after all the abuse they heaped on me, that they did the right thing and get to have ally cookies now. But they sure as fuck aren’t getting them from me.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren’t actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
Despite being a long-term intermittant lurker on Skepchick, I never made an account to comment because, honestly, commenting on blogs I’m not 100% comfortable on freaks me out. And Skepchick, sadly, is one that I’m not 100% comfortable on exactly because of their history of massive fails on disability issues, particularly DD issues.
It looks like Skepchick is now being added to my ‘unsafe blogs to visit’ list. After reading through the comments thread, I’m honestly sick to my stomach at the blatant neuro-ableism, gaslighting, disrespect, unchecked privilege, willful ignorance, and dismissivenes displayed by Skepchick bloggers and commenters (particularly Sarah and Will) towards autistic people.
To those of you with the spoons to keep trying to get through to these people, I wish you all the best and will be silently cheering you on. Sadly, given what I’ve seen displayed in that comments thread and Skepchick’s previous history, I can’t say that I’m confident about your chances (but I’m still your silent cheer squad!)
And in closing: neurotypical privilege is being allowed and encouraged to speak over neuroatypical people despite a policy of ‘outsiders’ not being allowed to speak for minorities that they’re not part of.
No kidding. I don’t blame you for not wanting to get involved. The Almighty herself has shown up to tell me how “awful” and “ignorant” I am, for “assuming” they would treat developmentally disabled people poorly. Except that’s exactly what they were and are doing, so there you have it.
Like people are straight up telling me they have a history of this behavior and I’ve seen nothing to indicate that isn’t true, and have been in fact treated horribly, and then I get treated even more horribly.
Rebecca Watson, ladies and gentlemen. The fucking anti-developmental disabilities Richard Dawkins. The universe loves her irony a bit too much, methinks.
Oh hey so I was the person who initially called out their ableism. Which was really really bad, as was their able tears all over the place reaction. It wasn’t a “kerfuffle”. It was SKEPCHICK DONE FUCKED UP.
I wrote a thing about it, but it’s fairly vague bc I am still so triggered.
http://timetolisten.blogspot.com/2014/02/skepticisms-ableism-problem-again.html
But yeah, they’re looking for their Token Disabled Friend. And they’re being just horrendous and any self respecting disabled person would not want anything to do with it, it’d be being a token.
I just…my jaw is on the floor right now. Are you seriously telling me that it was an autistic person who called them out in the first place and that their “solution” to the problem…involved ignoring and gaslighting another autistic person? For reals? I mean, clearly it did, but holy shit, the cognitive dissonance is staggering right now.
I am so sorry you went through that. So, so sorry. I know from my own experience just how vicious and abusive they are, and it is awful, and I’m not surprised you’re still triggered. I’ve cried to the point of dehydration today.
People, you should read sherlocksflatafflect’s post there, definitely. Because holy shit, holy shit.
Meanwhile, Rebecca Watson is being a bully who refuses to allow any comments that don’t agree with her.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren’t actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
Despite being a long-term intermittant lurker on Skepchick, I never made an account to comment because, honestly, commenting on blogs I’m not 100% comfortable on freaks me out. And Skepchick, sadly, is one that I’m not 100% comfortable on exactly because of their history of massive fails on disability issues, particularly DD issues.
It looks like Skepchick is now being added to my ‘unsafe blogs to visit’ list. After reading through the comments thread, I’m honestly sick to my stomach at the blatant neuro-ableism, gaslighting, disrespect, unchecked privilege, willful ignorance, and dismissivenes displayed by Skepchick bloggers and commenters (particularly Sarah and Will) towards autistic people.
To those of you with the spoons to keep trying to get through to these people, I wish you all the best and will be silently cheering you on. Sadly, given what I’ve seen displayed in that comments thread and Skepchick’s previous history, I can’t say that I’m confident about your chances (but I’m still your silent cheer squad!)
And in closing: neurotypical privilege is being allowed and encouraged to speak over neuroatypical people despite a policy of ‘outsiders’ not being allowed to speak for minorities that they’re not part of.
No kidding. I don’t blame you for not wanting to get involved. The Almighty herself has shown up to tell me how “awful” and “ignorant” I am, for “assuming” they would treat developmentally disabled people poorly. Except that’s exactly what they were and are doing, so there you have it.
Like people are straight up telling me they have a history of this behavior and I’ve seen nothing to indicate that isn’t true, and have been in fact treated horribly, and then I get treated even more horribly.
Rebecca Watson, ladies and gentlemen. The fucking anti-developmental disabilities Richard Dawkins. The universe loves her irony a bit too much, methinks.
I’m curious–as much as getting parents of autistic children to write in lieu of actually autistic people, they haven’t actually done anything wrong yet (they said to apply/think about it). I agree that disabled people need to get a voice in media, but wouldn’t it be good to ask people to apply to become a blogger, rather than just shut down the idea entirely? (sorry if I misunderstood your post)
————-
The blog is meant to be for and written by people with disabilities, and right in the FAQ they say that people without disabilities shouldn’t apply. Then the very first thing they do is turn around and agree to consider people without disabilities, in spite of myself (someone with the disability in question) and several others pointing out that we’re not comfortable with that.
I explained in my own response why I didn’t think parents should be considered, and linked to the blog for Autistics Speaking Day to show that we can and do speak for ourselves just fine. That was never acknowledged. Not at all. By anyone.
And if you read the comments, other people point out that this is not the first issue the site has had with regards to cognitive and developmental disabilities. I’ve seen mention that people speaking out against ableist language were simply dismissed as trolls, in fact. That’s not exactly a good track record, and the fact that no one will acknowledge concerns about this just makes it worse.
As well, they have a parenting blog already. If parents of autistics/disabled children have something to say, there is already a place for that. This was supposed to be a blog for disabled people, a place for us. To say people who aren’t disabled weren’t allowed, then immediately turn around and start considered exceptions, is not cool. Especially since it speaks of the sort of ignorance that people tend to have about autistics, that we can’t speak for ourselves. There are enough of us who can and do, who might be willing to apply, that there’s just no need for parents to even be a consideration at all.
Hedgehogs, I need your help. Or maybe it’s more accurate to say that we need our help.
A few days ago, my husband brought to my attention that the popular skeptic blog Skepchick was planning a sister site for disabled people. This was apparently due to a kerfuffle (and from what I can tell, not the first one) over ableist language being used on the site. Excited at the prospect, I applied. Only the find out that the very first conversation in the comments went like this, verbatim:
Nancy:
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Sarah: Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I’m sure I don’t have to explain to any one of you why this bothered me. But I spoke up, pointing out that autistics absolutely do not care to have parents speaking for us and even linking to the blog for Autistics Speaking Day.
That post sat in the moderation queue for three days. When it finally appeared, no one responded to it. Not even Sarah, who is supposed to be running this site. I wrote another post, pointing out further why this lack of response was so upsetting. Aside from being accused of things I have not done and still having my concerns completely ignored, still I have not been properly responded to by the person who is supposed to be running the damn blog. Nothing. Not a word. As if my feelings and the feelings of autistics just don’t matter. I have, as you might imagine, withdrawn my application, because who wants to work with someone who doesn’t care enough about your feelings to respond to you?
So this blog is two things. First, it’s a warning. If this blog ever goes live, I caution you all to stay away from it. They haven’t even begun yet and already they’re showing oodles of ignorance when it comes to people with developmental and cognitive abilities and an utter lack of caring for our concerns. It very likely will not be a remotely safe or welcoming place.
The other thing is a call for help. Despite doing things like linking to Autistics Speaking Day, I’m being accused of speaking for all autistics, as if there aren't actuallyhuge amounts of us who have very real issues with parents speaking for us. So I’m asking you, if you have the spoons, to please go there and tell them exactly how you feel about the idea:
http://skepchick.org/2014/02/disabled-write-for-us/
This warning and call for help is for every and any person with a cognitive or developmental disability, not just autistics. These people believe they have so much right to disagree with us that they can just ignore what we say.
Well, I’m tired of being ignored. I’m tired of being treated like I’m so little of a human being that my opinions don’t matter at all. Skepchick is a big enough site to do so much harm to our cause, and I refuse to sit here and let them do it.
I can’t tell you how much pain I’m in right now. I want to crawl in a hole and never stop crying. I want to sit on an island and watch the world burn. I can barely see for the tears. I’m scared, because I’m little and they’re big, and part of me knows I can’t win. But I can’t not fight, either. This blog has become too important to me. It’s helped me so much, and I know it’s helped other people. I can’t sit in silence while people who are not disabled like we are presume to make decisions for us.
Because that’s happening every day and it’s hurting so many people. Even when I’m silent, even when I can’t cope, I watch. I see the things all of you talk about, the way you’re treated, how you fight and fight and people won’t listen and this…this was a chance for the truth to be heard, from our own mouths and our own fingers, and they don’t care. So I have to speak. I have to speak for all of us who have been abused, who have been killed. I have to speak because if I don’t, there’s no way to stop this cycle.
Help me tell them to stop the cycle. Please, I’m begging you, help me tell them that solidarity is not just for neurotypical people. That we are done letting other people speak for us. Please.
You may have noticed that I’ve answered a few questions today. Something that I said I was going to do quite a while ago. Well, I certainly thought I was going to.
The first two months of 2014 had other ideas. Very shortly after I started feeling better in December, I got worse again. I started having a great deal of back pain, which brought along depression and sleep deprivation. It was a pretty vicious cycle. The back pain causes both more depression and more sleep deprivation, the sleep deprivation caused more back pain, etc. etc.
Last month the sleep deprivation got really bad. We got a new pillow for me and that aspect, at least, is mostly sorted. I’m almost feeling human, but I’m still dealing with a lot of pain in my back and neck. We’ve tried every trick in the book, just about, and it won’t go away. I’m hoping my visit with the chiropractor tomorrow helps.
I will be answering questions as I can, but I don’t think it’s fair to promise any sort of consistency right now. I just have no idea what the year is going to throw at me next. It might be I’ll be fine, but there’s just no way of knowing. But AH is not dead. I know a lot of blogs of this sort have gone away or gotten very inactive, and I know we need a place where it’s safe for us to be prickly, and I’ll make AH that place for as long as I can.
We vary in this a lot, I think. Some do exactly that. Some are more narrow and focused in their interests. Some, like me, are all over the place.
I tend to have longer term interests, and what I call “fixations.” Fixations are pretty much what they sound like: Things I get fixated on. Unlike with special interests, I don’t necessarily try to learn a lot about my current fixation (especially since it can be almost anything, including a color). I just get stuck on it for a while. Which is how I’ve acquired things like a panda plushie and an owl pendant.
Other people will obsess over something else until they learn everything there is to know about it, and then move on. There’s no one true autistic way with this kind of thing.
No. I was diagnosed at nine. There are other people here who were diagnosed in their teens, twenties, thirties, forties. It happens a lot, and is most common for girls and women.
Unfortunately, I was diagnosed in the mid-90s, and it sounds like things have changed a lot since then, so I personally can’t really help.
Any other Hedgies have some information on this?
I’m not sure it’s precisely the same from person to person, but I do think it may be somewhat similar, at least.
For me (since I can only speak for myself; if other Hedgies want to talk about their own experiences with it, please do) I know what I want to say. The words are in my head just fine, but they will not come out of my mouth. They just won’t. At my last blood test, I managed to croak out the word “crochet” (they were considering if they could take the blood from my fingers instead, so I pointed to my left hand, and eventually got that one word out, which my husband at least understood) and I’m almost never able to do that. Of course, what was actually going through my head was “Please use my left hand, since I need my right hand more for practicing my crochet” but that just would not come out.
It might not express itself in quite that way for you, though.
What I do find interesting is that you mention trouble regulating volume, which is a common issue for autistics. I actually have pretty good control with that sort of thing and yet there are still times when it happens.
If this diagnosis is important to you, don’t let your psychiatrist dismiss it. They are not you. It’s easy for them to say, from the outside, that you don’t have too much trouble, but that’s for you to say, not them. After all, they only see you once in a while. You live in your head all the time.
I don’t see why not. Stimming seems to vary greatly from autistic to autistic. Most autistics I know talk about happy flapping, for example, but I almost never flap when happy. Usually it comes with nerves (though I’ve recently discovered that abject horror will make me flap too. I never knew that until I watched Once Upon a Time).
That your stims are related to the intensity of your mood rather than which mood is just your variation of something we all experience.
If you really relate to a lot of things here, and you’re really wondering, there’s nothing wrong with that. It is a good thing to research as much as you can, especially if you want to bring it up with your parents and/or psychiatrist.
If you do have some hypochondria, then it’s good if you have a firm grasp on why you feel this way before you bring it up. Don’t be afraid to write down the things you relate to before you talk to anyone about it, so you don’t forget what you want to say if you get flustered. I imagine with hypochondria, you could easily face people being dismissive of you about this, so organization is important. Do your best to make sure they understand you did a lot more than just glance at a list of symptoms.
Unfortunately, no matter who you are, an autism diagnosis is a subject that it can be very hard to get into with a lot of parents and psychiatrists. There’s a lot of ignorance about what autism even is. If they point out that you’re already sixteen, let them know that a lot of people are still diagnosed quite late in life. If they think autistic people aren’t capable of speaking, point out that autism is a spectrum with many different symptoms, and mutism is only one of them that not all of us have. Your best shot is to know as much as you can.
Even if they won’t listen, if you feel strongly about this, that’s okay. We will listen. There’s always support to be found here and AH and in the community in general.