Recommended Reading for December 7

Disability & Poverty

People with disabilities, the report says, account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents.

The extra costs associated with living with a disability such as purchasing expensive equipment like wheelchairs and catheters or obtaining specialized medical attention keep many disabled people and their families in poverty, the report notes.

Autism Speaks Hits A New Low

Before I explain what they’ve done to make me say that, I have to provide a bit of background information. You see, back in early August, Autism Speaks sent out this press release encouraging people to submit videos of autistic individuals for use in an upcoming film project. This project had huge names behind it— most notably, award-winning movie director Alfonso Cuarón, the man behind both Children of Men and the third Harry Potter movie— and was to be titled “I Am Autism.” According to Autism Speaks co-founder Suzanne Wright, this project was intended to “shine a bright spotlight on autism,” and was to be unveiled at the United Nations World focus on Autism on September 22.

Seems pretty harmless, right? “I Am Autism.” Sounds like it might be some sort of “We Are The World”-type production, about how we’re all affected by autism in some way. And “shining a bright spotlight”? I actually had a small gleam of hope that Autism Speaks was finally shedding their doom-and-gloom message for something more positive.

Well…

Diagnosis of a Faun

Determined outsider triumphs over mainstream medical, using a disabled artist as her protege/experiment. If not dance as therapy, the therapeutic effects of dance. Those are the storylines here; not Mr. Mozgala or even the piece itself — which, btw, I hope to see in June if not in December. So, here, we go.

Mozgala does not gain much space in the article except as a medical project with a weird gait: his CP has “caused him to walk for most of his life like ‘a human velociraptor,’ as he put it: up on his toes, lower extremities turned in, seesawing from side to side to maintain balance.” In fact, we don’t hear much about his acting career; he’s more of a specimen. Once, we’ve got the details of an enslaving CP out the way; the whole thing starts out with an outside: a choreographer who has done with with nontraditional dancers (my phrase) — the article’s author, Neil Genzlinger says “outside normal dance parameters. She sees Mozgala and is “inspired.” Yeah. That thing.

My Experiences with Vulvodynia

On the other hand, I found the medicalisation of my sex life difficult to deal with – in the end, I was dreading trying to have sex, and tried to only do so the weekend before an appointment because I knew that a doctor was about to ask how it was. I dread to think what the reaction would have been if I had admitted to seeking treatment for this condition while single; there was no opening for the possibility of non-straightness or non-monogamy. It wasn’t until I saw the final doctor, a sex counsellor, that anyone asked whether my relationship was good; even then, the focus was on returning me to a fit state to have penetrative sex and babies. (When I finally took a deep breath and said, “I don’t think I want to go on with this, I have no motivation to cause myself pain every day,” the counsellor replied that other women often went through with it because they were trying to have children. Fair play to them, but she didn’t ask whether I wanted children.)

In the news:
Ambulance Unable to find place for suicidal girl

A mentally ill, suicidal teenager was ferried around for hours by an ambulance crew because no NHS unit would accept her, the BBC has learnt .

The girl eventually had to be taken to a police cell, documents revealed under the Freedom of Information Act show.

11 Comments

  1. Thanks for the link! I still can’t believe that Autism Speaks video several months later.

  2. Has anyone taken that Autism Speaks video and remixed it with new narration? I Googled briefly but haven’t found that specifically yet (although I did find this video that works as a pretty good rebuttal from RethinkingAutism: http://vodpod.com/watch/2232709-rethinking-autism-autistics-speak — not sure if anyone in it is *not* NT though, but the message is on point). It would be an interesting project to creatively reclaim the footage. Any vidders in the house?

  3. @Jadey: Yeah, there’s at least one that I know of: I Am Autism Speaks. There are several other responses, too, but that’s the only one I can think of that actually uses the original footage.

  4. And as for the Rethinking Autism video… the voice clips used in the video are of actual autistics (including one who uses a communication device), but none of the people shown in the video are as far as I know. So it’s sort of half-and-half.

  5. Ah, okay, I watched it CCed with the sound off because I’m at work, so I missed that aspect. Thanks for the other link.

  6. @Jadey: That’s another great thing about us neurodiversity types. Unlike Autism Speaks, we actually bother to caption some of our videos. 😀

  7. Regarding the mentally ill girl in Suffolk: just to clarify, the police station was, at that time, the default “place of safety” for juveniles with a critical mental health situation. That changed a few days later, when a new unit opened. Of course, that doesn’t say much for the state of mental health services for young people in that part of the UK. I wonder how many other places still have that policy.

  8. Hay. Thanks for linking.
    Omg you even added a vulvodynia tag. I hope that helps someone.

  9. I’m sorry if this has been posted elsewhere on your wonderful blog but I find this a great antidote whenever I have to debrief from some awful autism-antagonistic perspective: http://www.youtube.com/watch?v=Y_dPZDcX_ck&feature=player_embedded.

    I went to a carer support group meeting today and when I left the mothers were all speculating as to whether their guest speaker, a psychologist who takes an interest in marriage guidance counselling for those with autism, was himself on the spectrum. This is the reason I stopped attending these meetings. It is not the speculation itself but that it is always attended by an unspoken assumption that information from a neurotypical source is of higher value. 🙁

  10. @Su: Oh, yes, I wish they had added the closed captioning file that I submitted to them for that one. But here’s a captioned version for those who need it:

    http://www.overstream.net/view.php?oid=udtvrbt0rlao

    And I interpreted that last paragraph you wrote the completely opposite way— until that last sentence, I made the assumption that they might expect it to be more valid because he’s non-NT! Clearly my mind still does not work along NT lines at all. 🙂

  11. The Rethinking Autism: Autistics Speaks video is mine. I made it myself with my own money. I have limited resources and could not afford to fly my autistic friends in to be in the video, so I used voiceovers. I tried to reach out to local autistic people, but rightfully so, they did not really trust the use of autistic adults in videos (whether or not I would make them look like victims or empowered). I plan to do more videos using autistic adults and try to advance general publics perception of autism.