Monday, July 15, 2013

Dear Parent Advocates: It's Not About You

Dear parent advocates, parents of kids like me and so many more,

It's not about you.

Come to think of it, it's not about us either.

It's about society.  It's about reinforcing the status quo.  It's about which voices get amplified, and which voices get silenced.  It's about contributing to a world that is already hateful and inaccessible to people like us.

The world listens to you, did you know that?  "Special needs" parents (ironically, though this particular order of words seems to imply that the parents themselves have special needs, actual disabled parents, parents who have disabilities themselves, are often threatened with having their children taken away, because it is presumed that no one with a disability can possibly take care of a child) are often treated as saints for "putting up with" us.  "Special needs children" are regarded as "special gifts from God", which makes those who raise us some sort of Messiahs, humble servants of God.  It makes parents of children with disabilities larger than life figures, and just like our society's fervent fascination with the exploits of celebrities, we always love to hang on the coattails of those who are larger than life, cling to their every word.  Though disabled people themselves are often assumed to have triumphed over tragedy, sadly incompetence is presumed far more often than competence.  We then turn to the people who love these inanimate pieces of tragic inspiration, the people who are good and pure enough to raise them, their parents.  And who doesn't love a feel-good inspiration story?

So when you turn to the public airwaves and say that children like us are broken, are unlucky, that we have monsters in our brains, people listen.  And they internalize those narratives.  It's words like those that paint us as burdens, as lesser than nondisabled, "normal" children our age.  It's words like those that convince people that it's okay to subject their children to dangerous, untested treatment methods in a futile attempt for a cure. It's words like these that indoctrinate people into having sympathy for parents who murdered their children.  Because these words all give the impression that life with a disability is not really living at all.  Whether or not that was your intention when you thought those words, when you spoke them, when you put them out there for all to see, that's the impact your words have.  Intent is not magic, and your choice of words means everything.

There is blood on your hands.  You might want to clean that up.  Now that you know you have a permanent place on the stage of life and disability, it is up to you what you want to do with it.  You can either use your words to fuel intolerance, or to fuel acceptance.

Your choice.


Margot said...

Another good post Cara. I saw an episode of "Real Housewives of NJ" last night where the character Jacqueline was crying and going on and on,and on about how hard it is for her to raise her son with autism and my mom and I thought "Oh come on. You're dramatizing this for the freakin' cameras" Her son is obviously not suffering so she shouldn't suffer over his disability and burst into tears every time she brings him up. Reminded me of what you said in your post.

Also great point about disabled parents getting threatened. They never think disabled people can handle a child. That NEEDS to change!!