Wednesday, May 30, 2012

Guest Post: Why We Fear for Your Kids

This is another guest post from the always insightful & delightful Gen Eric:
Okay, so those of you who have read my previous guest post know my “don't hate parents for being parents” credentials. I want you to keep that in mind for the rest of this post, because I'm going to say things some of you don't want to hear. And it will be all too tempting for some of you to play the “just hate parents” card.

No, I don't hate you for being parents. I don't believe that having an Autistic child makes someone automatically abusive, but there's sure one hell of a correlation. Far too many parents of Autistics develop a damn strong sense of entitlement. They feel robbed of the child they were entitled to, and so they feel entitled to wallow in self pity, treat their child like a burden (and encourage the child to feel like one), talk about their child in front of them like one would a piece of furniture, abuse them emotionally and/or abuse them physically and/or abuse them in other ways. For all that, they then feel entitled to a crown of sainthood. For some parents out there, here is why we fear for your kids.

Whenever an Autistic person is murdered by a parent or caregiver (and seriously is it possible to keep count? I doubt it!) the “autism parent” community comes together to express their sympathy and sorrow, for the murderer. You can see it in the comments section of any associated news story. You can see it in the official comments of any “respectable” (meaning no Autistics allowed) autism organization. A lack of services is blamed. The killer is regarded as a good person pushed over the edge. Some of you don't shy away from saying that “every parent of a child with autism feels that way sometimes.” Someone really needs to call social services on every “autism parent” who's ever said that. We need to start a registry on people like you, so your neighbors can be warned of what kind of scum they live near.

Yes the lack of services is atrocious, and the services typically fund the wrong things (behavioral interventions rather than communication and self advocacy), but having someone else harm us to draw attention to our needs is no better than needing to harm ourselves to draw attention to our needs.

Many of you openly talk about how you wish you had a “normal,” acceptable child. What you're really saying, as Jim Sinclair told you nearly 20 years ago, is that you wish the child you have didn't exist; you wish a “stranger you could love,” would “move in” behind your child's eyes. You also don't feel the least bit guilty about expressing this wish in front of your child, letting them know just how unwanted they are (and don't even try to mince words about this matter). I started feeling guilty for existing before I was eight years old; at thirty, maybe someday it'll go away. Have you checked our suicide rate lately? In case you were curious, it's through the roof, and this is where it begins.

Some of you go even further than that. You all know what this blog owner has experienced at the hands of “loving and devoted” parents; and no, it's far from uncommon for a parent to treat their Autistic child as a release valve for all their own anger and frustration. Some of you claim you'd never ever dream of harming your child, but the next moment you're running for the acid injections, chemical-castration drugs, and bleach enemas (yes all of these are used, yes they kill, and yes there are plenty more). Others swear they don't go in for that pseudoscience, and that they only use “scientifically proven” and “effective” treatments, like behaviorism. Here's a news flash for you: sitting a child down for forty hours a week and telling them to “touch nose” or “pick up red crayon” is abusive. Teaching an Autistic child to suppress their autism permanently is sadistic. Teaching a child that it's wrong to refuse a hug, or a touch, when an adult wants to initiate, leaves them permanently vulnerable to anyone who chooses to take advantage.

And you get especially high and mighty when called out on your “behavioral problem.” When Autistic adults, who have PTSD issues because of what was done to us, tell you about the harm you are doing, you again make yourselves the victims, and we all know victims can do no wrong. In your “self defense,” you become again downright abusive. You gleefully trigger people who have the same disability as your children, and who have survived things similar to what you're doing, and then you blame us for having a “tone.” Still, you insist that it's all in self defense.

You excuse the murders of people who have the same disability as your children, who are murdered for their disability, which raises obvious questions about your intentions. You publicly shame your children for being born. Some of you add physical abuse to the emotional, whether for your own gratification or in some “crusade” to “save” your children. You personally abuse adults who have the same disability as your children, making sure to set an example that it's okay for others to abuse your child when/if they grow up. For all these reasons, we fear for your kids.

Sunday, May 27, 2012

How to fail your autistic child without even trying: A guide.

Autism parents, here's the deal: Every shitty thing you do to me, you are giving the next generation a pass to do to your kid. So, here are some brand new techniques, in case your current ones were getting boring.

1. YOU AREN'T LIKE MY CHILD! Yes I am. Suck it up, buttercup. I am not exactly like your child, because I am pushing 30, but chances are good I'm more like your child than you are. Deal.

2. YOU'RE JUST ANGRY! Um. Yeah. I am, actually. See, I have shitstains like you tell ing me to shut up (and more!) when I tell them that, you know, doing X thing isn't helpful, it's actually harmful and may cross the line into abuse. You'd be angry too if the majority of the people you came into contact with alternated between using you as a decoder ring & verbally abusing you when they didn't want to hear what you decoded.

2a) GET SOME THERAPY FOR YOUR ANGER PROBLEM! Fuck you, buddy. You are my anger "problem." I am still on this earth out of plain spite some day, against all of my mother's best efforts.

 3. YOU'RE JUST SELF DIAGNOSED! a) No I'm not, actually. b) That's irrelevant. Lots and lots and lots of adult autistics are self diagnosed. That doesn't make them not autistic. There are a lot of barriers to diagnosis of adults. Financial barriers. Lack-of-experts barriers-did you know lots of so called experts are laboring under the idea that all autistics were caught in childhood? Even though a lot of autistic people would not have been classified as such until 1994? Even really blazingly obvious ones? That doesn't make them not autistic. It makes them overlooked. And of course People of Color & people with other diagnoses are even less likely to be accurately diagnosed because of medical prejudice.

4. YOU ARE BATSHIT LOONY LOL. Psychobigotry on line one! Mentally ill people, contrary to your oppressive beliefs, do in fact have rational thoughts! You are not required to be neurotypical in all ways to say things that are correct! Someone arguing with you is not indicative of their mental status-maybe you are just wrong! And even if they do have a mental illness, that doesn't mean you aren't wrong.

5. MY CHILD WOULD NEVER SAY WHAT YOU'RE SAYING! Your child is eight. Think it through.

6. YOU ARE TOO HIGH FUNCTIONING TO COUNT! People who say this should have their internet access revoked. They are clearly only capable of handling interactions face to face; they don't understand that someone's writing ability is the only thing you can see on the internet. Yeah, I can write. A lot of the time, I can even push words out of my mouth in an order that makes sense. I fail adulthood pretty hardcore, though, not like it's your business. I also have sensory issues that have to be seen to be believed, again not your business.

6. YOU HAVE A JOB AND FRIENDS! YOU'RE WRONG! Heh. You've never met my friends...

 7. YOU AREN'T AUTISTIC, YOU HAVE AUTISM. KATHIE SNOW SAYS SO! Kathie Snow can kiss my ass. It's disrespectful as hell to tell me what to call myself. I don't give a whiff of a shit what you think I should call myself, because you are not me.

7a) WELL MY KID HATES TO BE CALLED AUTISTIC! Gee. I wonder where they got that one, angry mom on the internet.

 8. I KNOW ALL ABOUT AUTISM MY KID HAS IT! One of my best friends has a pilot's license. Does that mean I can fly a plane? This is among the least rational things y'all tell me, yet you do it every day.

8a) NO I DON'T HAVE TO READ ANYTHING YOU POST TO EDUCATE ME. BUT YOU NEED TO READ EVERYTHING I SAY. Yeah no. You want me to empathize with you? It's a 2 way street. You're going to tell me that parents are always saints and angels and want what is best? Then you best get your ass on explaining my mother, & explaining the hate mail I get. I'm waiting.

9. YOU NEED TO BE NICE AND LISTEN TO PARENTS AND NOT SAY THINGS THAT WAY! Did I say fuck off yet? No? If you think this is a legitimate argument, fuck off. Being nice has been proven to not work. You don't get rights by saying "please, could you consider acknowledging that I'm human and maybe treating me somewhat as such?" You get rights by demanding them.

9a) MARTIN LUTHER KING AND GANDHI WERE NICE! No they weren't. White people think they were nice because history class said so. They were every bit as demanding as I am, perhaps more so.

10. INSERT DEATH THREAT OR WISH OF DEATH HERE! *yawn* You don't scare me. You annoy me. At least be creative. And know that my local police get copies of all this shit. Before you get all abusive at me, think about someone doing that to your kid. They will. They will.

11. I'M NOT LIKE THAT! STOP SAYING YOU HATE PARENTS! Well, then show me you aren't Like That. Most people who insist they aren't, are.

11a) I'M COMING TO YOU IN PRIVATE TO TELL YOU THAT I HATE THAT THEY'RE LIKE THAT! Not helpful, no matter how well meaning you are. You need to tell them to not be Like That. They don't give 2 fucks if I think they are, but they do care what you think.

edited to add a couple that I forgot

Tuesday, May 1, 2012

BADD 2012-Update on the fights we fight from last year. It's long. Read it anyway.

; The rest of the BADD posts can be found here

Last year I wrote a bit about a couple of flagrant ADA violations I've been dealing with. People seem to have it in their heads that since the ADA is a thing, ableism is alldone & that all you have to do is ask nicely for access needs that aren't met and people will fall over themselves to fit it & suing for ADA violations is unfair and blowing things out of proportion and mean and unnecessary and easy and something only assholes do. I can think of about 10,000 things this past year that I'd prefer to have done with the time & energy spent on an ADA suit. Too bad that no one got the memo that ableism is alldone, huh?

 So we'll start with school. My spirit of confidentiality and assumptions of good faith are fresh out, so I'm going to be naming names here. My goodwill & willingness to believe people who say they're trying to do the right thing as been abused to the breaking point; if they want it handled internally that ship has sailed & they don't get what they want.

Spring term of 2011 a friend & I signed up for an Intro to Rock Climbing class at Portland Community College. As regular readers/facebook friends/etc know, I am a former high level gymnast and current gymnastics coach. Climbing plays on my strengths-high strength to weight ratio, flexibility, love of heights. My disability cooties are pretty much irrelevant in such an activity-nothing is flashing at me, flying at me, or yelling at me.

I always, always contact my instructors before the term starts to discuss my accommodations form. I have a sheet with pictures of my brain that explains epilepsy in addition to the school-provided approved accommodation form. Since people know exactly nothing factual about epilepsy, I prefer to discuss this face to face before the term starts and disclose that part of my neurological excitingess to head off egregious misunderstandings.

 On 14 March 2011, I emailed Brad Martin of PCC Rock Creek, offering a meeting. He declined & requested an explanation over email. So I told him, in these words, "I have a few neurological quirks, the most relevant of which is epilepsy". Radio silence for a week, until I emailed him back and asked if he had any questions (my exact words were something along the lines of "given how people react to the e-word, your silence is ominous"), at which point he wrote back and said he was sure he could handle that in class. So, keep that in mind as you read on. I gave the man a chance to freak out, a chance to express fears and have them assuaged, or not. It would suck a bit, it'd be questionable (well, illegal, but I've internalized enough ableism to know damn well how people react), but I could at least understand it. Being concerned about the possibility, even remote, of a student losing consciousness at the top of a rock wall, that's something I can understand.

The first day of class was held in a classroom rather than at a climbing facility, since it was a day of paperwork. Mr Martin took a copy of my Disability Service form, snapped at me for using a word he didn't know ( around concepts. Sometimes I sound like I'm vomiting a thesaurus. Language and I have a tenuous relationship), we learned to tie a couple knots, and home we went.

The next week was the beginning of Autism Fearmongering Month, & oh how fitting that was. We met at a local rock climbing facility, ClubSport, where we were fitted for loaner shoes & harnesses. Mr Martin was very late (a pattern that never resolved), & when he finally arrived he tried to review the knots-I say tried because I know damn well that at least half the class learned from Anyone-who-isn't-Brad-and then we were set to learning to belay.

Belaying is how you keep your climbing partner from falling to their doom, & by extension how you lower them to the ground, rather than doom, when they are done with their ascent. At Clubsport they already have a rope set over a point at the top of the route. The climber ties one end into their harness with a certain set of knots. At the other end is a device called a gris-gris, which massively reduces the strength needed to catch someone because if a climber falls suddenly, the device catches and stops the rope going through. So what a gris-gris means, basically, is that it is nigh impossible to drop someone unless you hang out with it open or forget to take up any slack or, um, intentionally drop them. This is relevant, I swear.

My friend & I were getting the hang of belaying & tying in at about the same pace as everyone else. I had to figure out how to flipflop some instructions, since I am athletically left handed & apparently Brad had never heard of such devilry before. That takes some time, but we're settling in, climbing some rocks, whatever, and a wild asshat appears!

My friend is about 3/4 the way up a rock and I'm dealing with the rope being a bit...well, it's a rope. Ropes get kinked and stuff. I flap my hand a moment. OH. NOES. KITTENS. KILLED. Not the hand that is supposed to be on the ropes at all times-the OTHER hand.

 As I said, a wild asshat appeared. Unclip, he says. Um, no. I am fastened to the rope holding my friend from crashing to the ground, and also clipped to the ground because ground anchors make up for an 80 pound weight difference. Brad stood over me and yelled at me to unclip again. I'm 12 inches shorter and a good 100 pounds or more lighter than this guy, and he's standing over me in his giant abled white man way hollering at me. Funny thing! Yelling at people right in their faces does not do wonderful things for their coping skills! Even if they're NT!

So I'm all flappy hyperventilatey (which is a common reaction to having a giant man yell in one's face) & I get my friend down from the wall & Brad is yelling about bad vibes. Absolutely. Seriously. Talking about bad energy. Believe what you will, I don't really care, but don't tell me that my differences, like, disturb the flow of chi through your meridians. I don't give a shit about your meridians, especially if you're yelling at me for
a) flapping
b) being left handed.
So, with the yelling and the look at me, what words fall out of my mouth? "I'm autistic". And then the shitstorm began.

Brad demanded a meeting right then and there. Suddenly he couldn't deal with anything. He wanted me to look at him. No, fuck off. He wanted me to use my words. No, fuck off, you don't understand my words anyway. He wanted me to take a time-out. You do not tell an adult to take a time-out, may your innards be infested with all the nematodes in and around the Willamette!

I wasn't profane though. I was quiet. Very quiet. Worrisomely quiet, if you know me. My friend & climbing partner & cognitive interpreter was running some interference for me, but this guy was hellbent on yelling at me some more.

The next week I got an email from Brad demanding a phone conversation, and thus the unwinnable situation started. I don't do phone, because my auditory processing is utter shit. This becomes abundantly clear very quickly if I try to talk on the phone. But saying I have shit auditory processing-if I cannot see you & have no real context I catch like 50%-is also something that can be used against me.

I declined a phone call & so he demanded another meeting, in which he was condescending & I was very very quiet. Gems from this meeting include "you can't tell me what to say!" (because telling non autistic students to use their words is smiled upon?) and "I need you to be the best student you can be for me", as though I were going to be obstinate just because, and that it was unreasonable to ask him to not stand directly in front of me with his back to me while demonstrating knots (wait what? Am I supposed to see through him? Apparently). The real winner of that day, though, was "I don't think you can understand the risks inherent in rock climbing. Perhaps yoga would be more your speed".

Aside from being extremely condescending, this betrays a complete lack of understanding of what I do. I assess physical risk. For money. Without time to think about it. But Autism Speaks says that autistic people are dangerous perpetual children, so we must be!

 Brad was pretty pissed off that day anyway. My friend & I had gotten to ClubSport early to do our belay certification tests with the staff of the climbing facility. We were the first 2 people in our class safety certified. I asked the power that was in the climbing center, Bob, what to do with the belay device, since apparently being left handed was a big effing deal. "Put it on backwards" he said "and say 'lefty' if anyone says anything, which they probably won't".

This day was the last day that Brad made any effort whatsoever to hide his desire to bully me out of the class. He alternated being in my personal space & pretending my friend and I didn't exist. I went home that day and emailed Harry Zweben, my Disability Services counselor at PCC, & told him that Brad was trying to bully me out of the class. Harry didn't believe me. If he has been paying any attention at all over the past year, he does now.

We only went to one more class. At this one, Brad came over to where we were climbing, an area called the "chimney", which had faces on 2-3 sides the whole way up, pretended to check out the face of the wall, & then quietly gathered the rest of our class while I was halfway up the wall in order to start.

Let me say that again. PCC sure doesn't acknowledge that it's remotely unacceptable:

Brad quietly gathered the rest of our class while I was halfway up the wall in order to start without us.

 That day we talked to Bob & the other kid, Ryan I think, who worked in the climbing center at ClubSport. Bob-who knows what he is talking about-said that we were progressing as fast as or faster than the rest of our class, and that we were perfectly safe. When I asked if Brad had asked any weird questions about disabled people climbing, the kid who I think is named Ryan accidentally answered in the affirmative with "no, nothing about physical disabilities...", & Bob said that he had told him to keep an eye on me because I am 'quirky'.

So there's a HIPPA violation all over the place. Or the school equivalent of HIPPA. I know there is one.

 So, another email to Harry, who encouraged me to talk it out with the instructor. Because that was going sooooo well. I also placed a call to Claire Oliveros, the Affirmative Action Officer of PCC.

 At a very late hour on the next Wed, so late it was nearly Thursday, I got an email from Narce Rodriguez, a dean from PCC, telling me that I needed to meet with a dean before returning to class-which was scheduled for Friday. Ok, fine. You have Friday morning. That's your choice, Ms Rodriguez, no other options.

That Friday morning, my climbing partner/cognitive interpreter/friend & I met with Heather Lang, who is a dean at PCC Sylvania, and Angelina Davis, a Disability Services person at PCC Sylvania. It's a good thing my friend came with me, since the dean and the DS person seemed to basically be there to tell me that my existence was unacceptable. Only they were doing so with content-free speech, the way that allistic people say words that mean nothing but somehow you're supposed to infer meaning anyway. It's all buzzwords. All of it!

Neither of them would admit that discrimination is illegal. They denied that ableism defies the school's antidiscrimination policy. It does.

Here's the thing: I have copies of emails sent through the Portland Community College internal system, from all of these people. By this time Brad had said that he "will not accommodate autism", that he did not feel he should have to, and saying that since he hadn't gotten a letter for the autism stuff he didn't have to not be a tool.

It does not work that way. I don't have to tell instructors a damn thing about why I get services, just that I get services.

 At this point, no one has been able to tell me what Brad's problem is, and I haven't yet had access to the emails (getting there. That was a fun pile of shit to wade through...). Apparently he has a "safety concern". "Safety concern" is a broad-ass category. You need to be more specific than that.

Over a year later, I still don't know what this so called safety concern is-because it's fictional. But allow me to continue.

Heather Lang and Angelina Davis-who I will never work with again, ever-decided that I should next meet with Brad. He works for PCC, he isn't a bully!

Except he is. The next week was a whole lot of Narce emailing me demanding a meeting at the time that rock climbing was supposed to start and me saying no, because Brad had said he cannot be there on time for class, so obviously he isn't going to be there for a meeting. This went on and on and on and on and on.

During that week I talked to a lawyer who specializes in disability law, IDEA & ADA. He told me to file with DoJ, that it was definitely not ok even though they were careful in the emails to not be egregiously blatant with their bigotry, & that the school was required to provide a copy of my records if I asked for them, and they only had 60 days to do it.

First thing I did with that information: Email Rebecca Mathern from the records people at PCC for my record. This was late April. I did not see my records until late July.

Back to the meeting BS. Narce was very late. She sent 2 people whose names I still am not sure of...Ruth McKenna, Alejandra something, then there was her & there was Brad, miraculously only 20 minutes late. They were pissed off that my friend & my trusty tape recorder were there. They also proceeded to ignore him for another half hour, in an attempt to get me to go up the stairs to where they were.

It's a little thing, but we were going to have this meeting on the ground floor, sitting on the floor, where I was more comfortable. I insisted on it. I did not want to be there. I find all these people utterly detestable. They and their nice clothes are going to have to sit on the floor.

 They, again, were mad that my friend was there. What they really wanted was a 4 on 1 bully and bash fest. They were mad about the tape recorder and declined to have a picture taken. Four on one. That's excellent. (this is hard to write about, what with it being exactly a year ago. BADD 2011: I was going through this shit the first time).

Apparently Brad had a list of bullet points about why he didn't want me in his class. They included "Safety issue NOS", using a cognitive interpreter when being yelled at by a man twice my size, not being an expert belayer, and he doesn't believe I understand things because I don't look at him. That was mentioned in his emails to everyone as well, including Disability Services people who should know better. Eye contact and comprehension: not really correlated at all. It just went downhill from there.

Brad took being called an ableist as a compliment. Narce called me verbally abusive every time I tried to speak up, and she yelled at Brad to "not answer that" when I asked who they'd told I'm autistic. No actual answers, lots of tone argument. Ruth McKenna seemed to think it was appropriate to tell me that I "seem to do very well". Yes, I am autistic and therefore tying my shoes is fucking magical, I know.

My demands, which I made quite clear, are that I got a drop, my friend got a drop, that we got our money back, and that they bring in an autistic person to do autism training since clearly no one at PCC knows anything about autism that they've not been told by Autism Speaks.

Let's recap for a moment here: an ableist man, afraid of autism because of awareness, bullied a former high level athlete out of his class because he didn't want to be around her cooties. That's seriously the only thing I can think of, because there's nothing solid to stand on there. The flight to "I am not comfortable with this" left about the time I got the "I can deal with epilepsy" email.

My friend and I spent the summer at PCC an average of once a week, meeting with everyone we could about this. We got sent to several dozen people, all who said it wasn't their problem. The Disability Services people obviously aren't there for disabled students. The deans were all not helpful, or were even actively part of the problem. The counselorperson called me political like it's a bad thing (oh, honey, you should read my blog! You have NO. IDEA).

And still I waited for Claire Oliveros to do the investigation she was mandated to do in April when I called. And still I waited for my records from Rebecca Mathern.

The records came first. They were infuriating. They're still infuriating. Yes, I am uncooperative--when you are telling me lies. When you are telling me that my very existence is dangerous because it weirds out a dude, when you are trying to tell me I have to meet with this dude at a time he said he is unavailable, I am not going to do what you want. I've earned a bit of stubbornness. When you are saying that you don't want to make very simple adjustments-treating students like adults is radical!-because you are afraid of their brain configuration, and hide behind a nebulous "safety concern", you and your associates have more than earned my contempt.

Shortly after I got my record-several weeks overdue-a new friend/acquaintence helped me with the official DoJ filing. ASAN members had been telling me to file for weeks, my friend had been saying to for weeks, but newfriendperson lent me the executive function to get shit done (ok, she did most of the work. I just told the story).

I met with a lawyer from the Department of Justice on a rainy, chilly day. DoJ has copies of the records. DoJ said they have to allow PCC to rectify the situation, but given that they have a known bigot, one Brad Martin, teaching courses still, I am not hopeful.

In November, 7 months after I initially talked to Claire Oliveros, we finally met so she could finally start her investigation. Conveniently, this is just before all the gluttony holidays, so she had an excuse to, like everyone at PCC, be late on it. There is not a single thing I asked of them that they did in less than twice the legally allotted time.

Again, I told the story. New friendperson came with, as did my climbing partner friend. We demonstrated what I meant by yelling in my face. She talked in lots of content free speech. I don't do content free speech.

At the end of the meeting she said she'd need to conduct an investigation-half a year apparently wasn't enough time-and that until that time, she wanted maintained a "spirit of confidentiality", for me to "let it go, it's in the right hands now". Patronizing bullshit. And, my spirit of confidentiality died a while ago.

This April, later than the 60 days allotted, a year after this shit started, I finally got the results of their investigation. "PCC finds no wrongdoing because the instructor cited a safety issue". Still no elaboration on what the safety issue is. They've had a whole year to make shit up. They have not come up with, in twelve months, a plausible lie. Because the safety issue is FICTION. It does not exist. The only safety issue involved is that involved with allowing ableists to make decisions that actually effect people.

I am still working with Department of Justice. I am appealing PCC's internal decision, since apparently they need to review their nondiscrimination policy again. And I am making sure that anyone and everyone knows exactly what sort of shit they put people through.  

Writing this was extremely difficult. I will probably insert missing details as they jump to my head. I did this in one sitting because it needed to be done