I don't like the term "self advocate" as it's used right now. The "self" should be a given, it should be understood. I should be a disability rights advocate, an autism advocate, an accessibility advocate, a neurodivergence advocate. Stuff like that.
I'm not, though, in commonly used language. In commonly used language, those terms-especially autism advocate-are about parents and professionals. Most of these people are not autistic. It's fair to say the majority of them have no disability whatsoever. So why the hell is it my description that gets a qualifying appendage? Why am I not the default in the work I do?
That's really what it comes down to, isn't it? Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it's seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what "real" advocates have to say. I'm just talking about myself, you see. They're doing the really real work, for we need the great allistic savior! We're cast as sidekicks in our own movement.
That, obviously, is wrong.
It is my movement. The accurate term for people like me (and a lot of people whose work I admire, and who I can't list here without it running 2 pages and me forgetting someone and feeling like an asshat) shouldn't be self advocate. We should be called advocates. Those people who are co-opting my movement? You know, the ones calling themselves advocates while telling us that what we say is less than what we say for a whole number of reasons? They can be allies, if they wish to work with us. Or they can be parent-advocates.
But the term advocate in this context should belong to us. We shouldn't be peripheral to the movement. It is ours. Give it back to us.
15 comments:
I never thought about this before, you are right. Why not advocate for us and parent-advocate, ally-advocate or anything for allistic people?
100% spot-on. Sorry I don't have more to add.
In the world of advocates, there are self advocates and self-appointed advocates.
I totally agree. Except, we shouldn't wait for it to be given back to us, we should just take it back!
This never occurred to me before. Awesome.
Great post. I think it's a very interesting idea to just "take it back" as Corina says.
Thank you. This needed saying, and I am glad you have found the words to do so. I am sharing this.
I completely agree; I've always hated that term. It is not only mySELF that I advocate for in any event. I would venture to say that most autistic advocates are not merely advocating for themselves.
I need all the allies I can get. If someone wants to advocate for me, that means they think I can't do it for myself - which probably means they feel sorry for me. I don't need that.
It has always amazed me that the neurotypicals think they know better than we do about ourselves. They have in no way, shape or form, experienced how it is to be autistic. And they will never know. They only assume, as they always do, then conclude they know better.
The movement IS ours, and that's that. I'm not asking anyone to give me back anything. It isn't theirs. They're fraudulent. No one took anything we didn't give up, or at least act like we didn't own anymore. It's always been mine. Ours. I've always spoke out. And again, as the broken record I am, we need more people on the spectrum to be leaders in this. Not people off the spectrum, who have no idea what being on, is like. They have no right to speak as an authority... who'd listen to a virgin sex counselor, anyway? Duh. Experiential knowledge is what we need. But I suppose people on the spectrum that are doctors and such, are afraid of revealing the truth about themselves because there IS prejudice. It's almost an endless tail-chase. Fear based, but not impossible to overcome.
It has always amazed me that the neurotypicals think they know better than we do about ourselves. They have in no way, shape or form, experienced how it is to be autistic. And they will never know. They only assume, as they always do, then conclude they know better.
The movement IS ours, and that's that. I'm not asking anyone to give me back anything. It isn't theirs. They're fraudulent. No one took anything we didn't give up, or at least act like we didn't own anymore. It's always been mine. Ours. I've always spoke out. And again, as the broken record I am, we need more people on the spectrum to be leaders in this. Not people off the spectrum, who have no idea what being on, is like. They have no right to speak as an authority... who'd listen to a virgin sex counselor, anyway? Duh. Experiential knowledge is what we need. But I suppose people on the spectrum that are doctors and such, are afraid of revealing the truth about themselves because there IS prejudice. It's almost an endless tail-chase. Fear based, but not impossible to overcome.
How had I not seen this post before?? Personally, I prefer the term "ally", but it sounds silly to me for some reason. It sounds Star Wars or World Wars-y, so I think from now on I'll stick to parent-advocate. :)
Might I quote from this for a talk I am giving to my co-workers (mostly developmental pediatricians and psychologists) on "disability and advocacy"? I am trying to get at the difference between awareness, self-advocacy, disability/autism advocacy, activism and allydom, and you did it better. I would cite you in any way you like (real name, blog name, something else.)
Yes yes yes you may. Blog name is quite acceptable =)
Thank you!
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