Simplifying--and Complicating--Autism Advocacy

by Dora Raymaker · 2009-07-17 09:53:00 UTC
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silhouette of a state with a rising or setting sun behind it. the statue is of a man standing on a pedestal with the top of a question mark shape over his head. this makes the dot of the question mark and the head the same shape, so the viewer's perception of the statue is constantly flipping between recognizing the human form and recognizing the question markSelf Advocates as Leaders ran their "Self Advocacy 101" training at the Oregon Disability Megaconference last month. Two of the items addressed in the training are 1) what does "advocacy" mean, and 2) what is the difference between an "advocate" and "self-advocate?"

At the very start of this blog, Kristina wrote about what "advocate" means to her. I've covered manuals for self-advocates, and more manuals for self-advocates, and yet more manuals for self-advocates. The term "autism advocacy" is steeped in the divide between individuals with competing motives and agendas, which plays out in the daily comment dramas all across the blogsphere.

But I'm not sure the term "autism advocacy" is the issue. From the "Self Advocacy 101" training:

A self-advocate is someone who expresses and enforces ("speaks for") their own needs.

An advocate is someone who expresses and enforces ("speaks for") the needs of others.

A person can be both a self-advocate and an advocate. Or just one of the two. Or neither.

Issues may lie not with the term, but with the with the deeper question "Who can express and enforce needs for--who can 'speak for'--whom?"

Is an individual on the spectrum allowed to speak for them self? To self-advocate? (This is not as obvious an answer as it may appear on the surface--how many ways are there to disempower someone who is trying to stand up for their own rights?)

What happens when people in a community ask an individual on the spectrum to speak on the community's behalf? To be an advocate?

What happens when people outside a community fail to understand that an individual was only intending to speak for their own community or for themselves, and never intended to speak for those outside the community?

What happens in the inverse when people claim to speak for others who expressly do not want to be spoken for? When there is an essential conflict whereby standing up for one's self literally means refusing to let others speak on one's behalf?

Who advocates for whom?

Dora Raymaker
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