Friday, March 17, 2006

Being an Ally as Well as a Self-Advocate

I'm writing a book titled Normal Person's Burden, about disability rights. In one chapter, Disabilities and Parenting, I was describing parent allies and quoted a list of "what makes a good ally" that was originally posted by a Domestic Assault Prevention group regarding men, and then modified by Phil Schwarz and used in his conference presentation Indentifying, Educating and Empowering Allies.
As I was quoting this list, I realized that, as a "high functioning" autistic (although the line is blurry, since I'm in between Asperger Syndrome and BAP* I'm definately high functioning) I used those same principles in terms of advocating for "low functioning" autistics (those who are treated by society significantly worse than people like me are because they're more prominently autistic).
Which got me pondering. Generally, the difference between an ally and a self-advocate is that a self-advocate is the target of the kinds of discrimination they are fighting against, whereas an ally isn't. In my case, I've been the target of some of the discrimination I fight, but some aspects of the discrimination I fight are expressly stated not to apply to people like me. I've never been institutionalized, and probably won't ever be, although my flashbacks mean I may be seen as needing institutionalization if it's really bad. If need be, I can pass for normal in most situations, though in group conversations I have to pick between "shy" and "overtalkative". I've never been viewed as unable to speak for myself, except in the same ways NT** kids are. My self-care skills are only mildly impaired, so that with maybe a beeping watch or some more ingrained rituals I should be able to live "independently" with no support staff or government funding (other than maybe student loans and other stuff NTs also get) at some point in my 20s.
All of that means that my experience of disability discrimination is significantly different from that of people such as Amanda Baggs and Cal Montgomery, in the same sort of way that the experience of racism is different between a light-skinned black person who can pass for white and a dark-skinned black person who can't. Which means that in advocating for autistics in general, I am both a self-advocate and an ally/pseudoally.
Laura Tisoncik and Amanda Baggs discussed how never-institutionalized autistics don't understand institutions in their article Conversation on Institutions. From my perspective, reading that, it was similar to how I imagine an NT ally would feel reading about many aspects of discimination against autistics. Basically, I had to recognize that this was an experience I didn't understand, and be willing to listen. All that ally-type stuff. My printout of that article has a note jotted down about whether someone with PTSD*** due to some trauma other than institutionalization would get it if they were staff in an institution. I realize the answer is probably not, though they may grasp some things like hypervigilence if they are open-minded.
Anyway, what I'm trying to say is that I think it's possible to be both a self-advocate and an ally in the same movement, and presumably also possible to be both a self-advocate and a pseudoally. For example, people like Temple Grandin are held up as speaking for all autistics, yet Temple Grandin, for the same reasons as myself, doesn't understand what it's like for "low functioning" autistics.
Anyway, food for thought. I'd like more discussion of this concept.
* BAP - broader autistic phenotype, meaning they have autistic traits but not enough to be considered disabled.
** NT - neurotypical, meaning a person who has brain function close enough to average that society accomodates their kind of mind fairly well.
*** PTSD - post-traumatic stress disorder, a psychiatric diagnosis applied to people who, after a traumatic event, have symptoms such as being easily startled and irritable, re-experiencing emotions or sensations from the trauma, feeling emotionally numb, etc, to a point where it is seriously upsetting and/or interferes with their ability to function.
PS: I'm using "low functioning" mostly as a sociological category, to refer to the autistic people who are targets of certain types of discrimination I (and Temple Grandin, and others) am not a target of.

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Blogger elmindreda said...

In that case, as a community, we're all pseudo-allies. I've never been institutionalised either, but I've had other relevant experiences that at least AB hasn't (from what I've read, correct me if I'm wrong). Examples include autism-related discrimination and accomodation in a technically oriented workplace.

I'm not trying to minimise the mindfuck that institutions are, but rather to make the point that no one can have had all the different kinds of experiences that are relevant to the community as a whole. To remedy that, as you said, we read what those who have had those experiences say about them and talk to people who have been there.

8:27 AM  
Blogger Estee Klar-Wolfond said...

I found you!!

I'm glad I did. Thanks for commenting on my site so I could. Great blog and glad your here.

12:08 PM  
Blogger Estee Klar-Wolfond said...

I found you!!

I'm glad I did. Thanks for commenting on my site so I could. Great blog and glad your here.

12:08 PM  
Blogger Jockey said...

I like the idea that people with AS are to the autism rights movement as light skinned people are to the civil rights movement.

10:25 AM  
Blogger No Hassle Loans said...

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3:17 AM  

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