as small as a world and as large as alone

9:02pm June 17, 2012

sherlocksflataffect:

kimpalms:

disabledtalk:

(Image text: Disability Problem #95: When you’re made to feel ashamed for asking for accommodations)

And when people get mad at you, or act like you’re making a big deal when you ask for accommodations because they insist you can “get by” without them.

Or when they say you need to take “personal responsibility” and not expect anyone else to accommodate anything.

Or they say you’re an “extreme minority” so they don’t have to “cater to you”.

When I tried to go to university, I went to this place that was so bad at disability, that the National Disabled Student Union was founded by a pissed off alumna.

My first day, I had to go to an orientation for disabled students. They had one for “physical disabilities” and one for “learning disabilities”. I was put in the second. It was a real hodge podge of people with anything at all not deemed physical. I remember a bewildered woman with schizophrenia raising her hand and saying, “None of this even applies to me. The only accommodation I need is someone to tell me if a voice I heard was real or not.”  I felt the exact same way. 

They made us watch a video about accommodations. The gist of it was, “We have note takers and extra time on tests. Need help with organizational skills or anything else?  You’re an adult and it’s your responsibility to have learned those things before applying to university.  If you can’t handle it, don’t go here. 

I only made it to class three times in the months I was there. I could not take care of myself except in the most minimal of ways, sometimes not even that.  I had trouble initiating anything at all let alone following through. I ended up either stuck in the apartment or occasionally wandering the more beautiful parts of the grounds, the trees on cliffs above the ocean, and wondering why I could do less and less. 

I was also in severe pain. I’m talking I have a high pain tolerance and I was writhing on the floor screaming or moaning. But I was also a crazy person who’d gone off my meds. Including lithium which for some weird reason had suppressed nerve pain to a degree.  People expect crazy people off their meds to act weird and fail at everything. 

My back pain was something that has come and gone many times since then. I have the same pain right now. It starts in the center of my back. Often, there is a "halo” of pain all around the one little spot it seems to start from. Sometimes it hurts from that spot on my spine upward. Sometimes downward. Often both. 

And it’s terrible pain. The kind that confines most people to bed. I was trying to walk around and do stuff.  It’s no wonder I kept collapsing on the floor. Or contorting my body into weird positions trying to find one that would give some relief. 

My doctor said because I was so very flexible, the pain could not be real. (My current doctor thinks my extreme flexibility might be part of the cause.)  So I got sent to a transpersonal therapist my dad dubbed the snake lady. The snake lady said my symptoms were due to a kundalini awakening – a snake at the bottom of my spine waking up and lashing around inside me, causing back pain and contortion into weird positions. Oh and to her I wasn’t autistic, I was just born with an active kundalini.  The joys of white upper middle class new age Americans trying and failing to be Hindu.

So with all this fluffy misdiagnosis nonsense going on. And everything else. I was just not functioning at all, and in other people’s eyes acting crazy. Because crazy people off their medsdon’t have real physical pain, so watching someone behave exactly as if they’re in pain doesn’t mean they’re in real pain. 

So with that all going on, I went to the university’s autism center asking for help. Really bizarre experiences there taught me that many world-renowned autism experts don’t know shit about autism.

So I had a keyboard with me and her first thing she said was that she could work on reducing anxiety so I wouldn’t need it. As if my language problems were anxiety. The day I went there I was stiff rather than stimmy. She told me this meant I needed no help with academic work. I couldn’t solve a single math problem they assigned me, but she could still tell I needed no academic help. They decided I needed help with my social skills. 

Mind you I, and my cognitive interpreter, were asking for help, explicitly, with self-care skills. We reasoned that an autism center ought to know how to teach me that stuff.  They ignored us. Didn’t even acknowledge we had said a single word on the topic. I also wanted help with sensory issues. But I was going hungry because I couldn’t make food at all, or eat it without cueing.  I was constantly freezing up, unable to initiate or complete stuff. And I was constantly overloaded, and losing the ability to understand my surroundings or language. But what really mattered, according to them, was my social skills. 

They assigned a couple grad students to help me learn social skills. I told them I was unable to meet under fluorescent lighting.  I told them I could only talk to one person at a time. They acted as if they had never heard of sensory or multitasking problems in autistic people before. 

I was getting more and more desperate.  We showed up at their office one day. I was badly overloaded and hungry. We tried to beg them to help us do something about these problens. They shut us down in every possible way. They refused to do anything about the fluorescent lighting or the two on one social situation.  I was crying and nonverbal and banging my head.  Suddenly they said they refused to speak to my interpreter, only me. I couldn’t talk, couldn’t type, could barely understand what was happening. And they insisted that only I was allowed to communicate with them.  I started loudly crying, wailing, and screaming. 

They behaved as if they had never seen a meltdown in their lives. Insisted on walking me and my interpreter down to the counseling department. Acted like it was an emergency and I had done something terribly wrong.  Got me in another fluorescent lit room. This time there were five or six people besides me. And they went around the circle and told me people with problems this severe don’t belong in university. 

Mind you I didn’t belong in university for a wide variety of reasons. But this was simply not their call. They were not even aware of the real reasons. It was just that people who rock and wail and scream and slap their heads don’t belong there. 

Years later I read a book by this “expert”.  (Her “expertise” is all in behavior mod, not in understanding us but forcing into submission.)  She said meltdowns are something autistic people do to manipulate parents and staff. And a lot of equally clueless stuff I don’t remember. She showed no awareness of even the slightest amount of how we really experience things.  To people who are all about control, all about manipulating autistic people, anything we do that they are unable to control or understand must be an attempt to manipulate them in turn.  Everything is behavior, there are no reasons for it ever except challenges to their power.  Literally the only good thing I got out of her was her request that my shrink change my diagnosis from PDDNOS to classic autism. 

Disability services were no better. They also told me I didn’t belong in university, that real adults can do all these things ourselves. 

And eventually I did have to leave. My health, physical and mental, was collapsing. I also, due to the movement disorder, fell out of a tree for the first time in my life and broke a toe. (My response to being upset or disoriented was to climb a tree as fast as possible. I felt safer up there.  I also scaled door frames for the same reason and sat at the top. People are amazing at not looking upwards.)

So yeah. I never got a single accommodation out of them and they behaved like total assholes in the process.  But the worst part, for me?  They turned me into an example. Later autistic students at the school reported hearing things on the order of, “We tried an autistic person before. She didn’t work out, in a big way.  So we are being more cautious about it now.”  Even years later, I knew a woman whose son went there and he had the same problems I did getting help. 

The only person who wanted me there was my advisor, who said my weird educational history and spotty comprehension meant I was exactly who his program was designed for. He said I understood the material better than the kids who could solve the problems. But he was the only person there who believed in me at all. And in the end that wasn’t enough to make it possible. 

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