myceliorum:

(TL;DR summary at end.)  I’ve said this before but I want to be very clear:

In My Language was a statement of solidarity with a young girl with a developmental disability.  It was based on the principles of the developmental disability self-advocacy movement, and informed by both other people with developmental disabilities and people who have written about developmental disability from an outside perspective.

The girl is known only as Ashley X.  She had severe cerebral palsy and no formal communication system.  Her parents chose to have a series of radical surgeries and medical procedures performed on her, many of which were specifically designed to keep her child-sized for life.  This included hormones to stop her growth, removal of her breast buds and uterus, and an appendectomy.  They called her their ‘pillow angel’ and treated her like she was gonna be a child forever anyway.  And it only got worse.

I was reading things by feminists who said that it was okay what was happening to Ashley.  Some said that because she had a (presumed) severe intellectual disability, arguing for her rights would be like arguing for the rights of a fetus, and therefore could interfere with abortion rights.  I wish I was exaggerating.  Other feminists said that because she ‘had no language’, it was totally fine that her parents decided to do whatever they wanted with her.  A girl had been sterilized against her will and feminists were saying it was okay!!!!

I remembered Dave Hingsburger describing people with profound intellectual disabilities as ‘a linguistic minority of one’ in his book First Contact: Charting Inner Space.

I remembered the fact that I have only been taken seriously as a full human being when I type or speak, and sometimes not even then.  But that I have an entire language of my own, always have, that’s my first language, and when I speak that and can’t speak anything else, people treat me like there is no language, is no communication, is no personhood.

I have had a number of developmental disability labels over my lifetime – I’d say three or four depending on how you slice it up.  I have spent my entire adult life in the developmental disability system.  I am part of the developmental disability self-advocacy movement.  One principle of that movement is our shared experience of the way DD people are treated, and our shared humanity, is more important than our specific diagnostic categories.  

I drew on those values and on Dave Hingsburger’s ideas (and credited him) in making a video called In My Language.  Which I explicitly dedicated to Ashley X.  I showed myself going about many things that I would normally do, that unless I also use English in some form, are treated as totally meaningless when they have absolute meaning to me.  It was meant to be applicable.  In the Tolkien sense.  Meaning – it may be about my specific life, but the experiences and principles apply widely to a variety of situations.

Also – to be clear – nothing in my video was specific to being nonspeaking.  I am nonspeaking at this point in my life and that affects my life and how I am treated.  But I have been speaking at other points in my life (not usually communicatively), and extremely rarely (like 5 times in 20 years and not under my control) have at least some useful speech, and at any rate nothing in the video was meant to be any different based on speech status. Like if I’d spoken the video out loud the message would’ve been identical.

Anyway, my video went viral.  I didn’t know what a viral video was.  I was terrified.

Media people started calling for interviews.  I was even more terrified.  I didn’t want to do it.

Someone explained to me that there’s two bad responses you can have to publicity.  One is to love it so much it gives you a big ego and you do stuff just to get in the news.  The other is to hate it so much that you run away from it even when it could be getting an important message out there.  She told me I was doing the second, and that it was just as bad as the first.  I agreed to an interview with CNN, among others that came later.

CNN interviewed me.

I didn’t know they were trying to do a human interest piece on autism.

At any rate, they asked me why I made the video.

I explained that Ashley X was a little girl with cerebral palsy whose parents had mutilated her and people said it was okay because she ‘had no language’ so I made the video.

They cut my entire answer.  To the question about the video that was the only reason I was being interviewed in the first place.

They replaced it with a voiceover.

It was something like that I’d made it “to bring people into my world of autism”.

That is suspiciously similar to the words of Sue Rubin about why she made her movie Autism Is A World.  A movie well worth seeing in its own right.  Anyway, CNN had interviewed her in the past and I wondered if they got those words from her intentionally or unconsciously.

Later other places I got publicity ended up spinning the video and my self-advocacy work into the idea that “autistic people don’t really have intellectual disabilities”.  That also is not and has never been a message I am interested in conveying to the world.

Unfortunately for the sacrifices I made for publicity, very little of the messages of any self-advocacy movement of any kind made it out into the media coverage of In My Language.  Spreading those messages, and the message that there were entire large communities involved in self-advocacy of various kinds, was the only reason I ever agreed to a single interview with anyone. 

But just to be really fucking clear:

In My Language is not and never was about autism.

In My Language is not and never was about autism.

In My Language is not and never was about autism.

In My Language is not and never was about autism.

In My Language is not and never was about autism.

Yeah, autism is one of many labels I have.  It was not the focus of In My Language.  And the video was explicitly dedicated to a nonautistic child with developmental disabilities.  It was an act of solidarity with her.  It was not about a particular diagnosis.  And I have had multiple developmental disability labels when it comes to that.  (Autism, childhood temporal lobe epilepsy, developmental disability NOS, and various long descriptions of a ‘severe and complex’ developmental disability.)

If you’re interested in the response of someone with a similar disability to Ashley X who actually experienced (unintentional) growth attenuation, read Anne McDonald’s excellent article in the Seattle Post-Intelligencer, The Other Story from a ‘Pillow Angel’:  Been There, Done That, Preferred To Grow.  She grew up in an institution presumed to have no capacity for language or communication, and had restricted growth because of the severe deprivation she experienced.  She was allowed out after she won a court case proving that she was able to type (and that she was able to type messages not heard by the person helping her type).  She began growing at age sixteen, after experiencing normal living conditions.

My favorite responses to In My Language when it went viral:

1.  A stroke survivor with aphasia who described to me the way his rehab treated people who would not or could not communicate using words but had other means of communicating.  And the effect this had on them.

2.  A group of feminists of color who talked about how the things I described could be applied to growing up a Spanish-speaking child in the American school system.

Because they understood I was talking about something that could be applied broadly to a large number of people.  They understood I wasn’t talking about me and my specific situation to call attention to me and one particular label I’d had.  THEY GOT THE IDEA.

My other favorite responses were from musicians and artists, some with disabilities and some without, who could relate to the way I naturally interacted with the world.  I loved that they got it so readily about there being other languages, other ways of communicating.  When linguists would be sitting there arguing semantics over the precise definition of ‘language’ and why what I was talking about didn’t apply.   (sigh)  The musicians and artists were a breath of fresh air after that particular variety of bullshit.  Especially since I’m also a musician and artist.

Anyway.

I don’t know how I could’ve been clearer in interviews what the video was actually about.

I don’t think the media liked my answer very much, because nobody used it.

TL;DR: In My Language was made for and dedicated to Ashley X, a young girl with cerebral palsy or ‘static encepalopathy’ (which just means ‘brain damage that doesn’t go away’) whose parents mutilated her without her consent and then publicized it.  It was made based on the principles of the developmental disability self-advocacy movement and informed by the perspectives of Dave Hingsburger.  It would have meant the same exact thing if I’d been able to speak as if I hadn’t.  And it was never about one specific diagnosis.  Ever.  The media didn’t like it when I said this, apparently, because they never aired my answer to “Why did you make this?” and instead substituted their own answers, which were always about autism.  It was never about autism.  If it was, it wouldn’t have been explicitly dedicated to a young girl with completely different developmental disabilities.  If you ever liked that video, learn about Ashley X and why so many disability rights activists think what happened to her was horrible and indefensible.  Because that’s why I made it:  People were saying she ‘had no language’ and therefore apparently should have no human rights.  She was fucking sterilized, as a child, without her consent, and people thought this was okay!