Tuesday, October 21, 2008

We're Not Silencers, We're Silenced Too

Traditionally, the people talking about childhood-onset disability and expressing their views of it have been professionals of various sorts. If you read stuff about childhood disabilities from older time periods, before the 1950s or so, it's hard to find anything written by nondisabled parents of disabled kids - it's virtually all doctors, teachers, psychologists, etc. It's less so now, but many parents still get what Peggy Lou Morgan calls the 'dumb parent treatment'.
As a result, it seems like some parents become very vigilant about making sure their voices are heard, rather than 'experts' who know nothing about their lives dictating what's going on. This is a good thing. It's an adaptive response to being silenced. It means you are advocating for yourself and your child, and both of you stand to benefit from it.
But when these parents meet disabled self-advocates (especially, it seems, when parents of autistics meet autistic self-advocates), too often they don't turn this off. They don't see us as different from professionals in the field of autism. And when we start to say that we need to be heard, rather than just having parents of kids like us talk, and we say things about parents not understanding their children and making mistakes, the parents see it as 'yet another expert come to shut us up and tell us what we're doing wrong'.
And the reaction that is a good and productive thing against the know-it-all professionals who aren't listening to parents gets directed at people trying to speak up about their own lives, and the lives of others like them. People who are even more silenced than parents of disabled kids, whose voices are less often heard. And these advocate parents end up reinforcing and perpetuating oppression against their own children.
What parents need to remember is that just because you are the one being silenced and treated unfairly when talking to professionals, doesn't mean that's true in other circumstances. You can be the perpetrator of oppression in one setting, even though you're the victim of it in another setting. Parents need to remember that fighting back against oppression can seem to the priviledged ones like oppressing them, and that you can be more priviledged than another group even though you're part of an oppressed group too.
And most importantly, parents need to remember who and what they are fighting for. They are fighting for their children. And we, (in the group sense) are their children. Parents should imagine their child, grown up and able to speak or type their self-advocacy, talking to other parents about what they want for children like them. Would you want those parents to reply the way you have?

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Blogger Lindsay said...

Great post!

This conflict (between parent/advocates and self-advocates) bugs me, too.

'yet another expert come to shut us up and tell us what we're doing wrong'

I think this is a big part of it, and maybe also they feel like we are blaming them personally for doing/not doing (whatever) for their child. I think most parents are hugely insecure about the choices they've made raising their kids, and worry that they might have messed up horribly somewhere along the line. I think developmental disabilities in the kids exacerbate this sense, because there's no road map of our development. They don't know what a good outcome is for us, because for so long it's been the received wisdom that good outcomes aren't even possible for us.

Heck, it's still received wisdom that good outcomes aren't possible for us without some intensive early behavioral training or whatever.

It's really too bad, because I think the people parents have the best shot at getting a "road map" from are us, the adults who have these disabilities.

4:51 PM  

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