Tuesday, July 30, 2013

Dear God, If You Exist: Please Don't Cure Me

Dear God, If You Exist: Please Don't Cure Me - News - Bubblews

New post on Bubblews discussing the apparent phenomenon of the power of prayer "curing" a man with CP.  You can read more about it at http://www.parents.com/blogs/to-the-max/2013/07/30/autism/god-isnt-healing-my-child-with-cerebral-palsy/.

Feel free to like the Bubblews post and share it around!!!

Thursday, July 25, 2013

Don't Sanitize My Disability Justice

This may come as a surprise to some people, but disability justice doesn't mean "put ramps and elevators in", nor does it mean "hire the handicapped".

OK, so it means that a little bit.  Access is nice.  So are jobs.  But there are far more pressing and disturbing issues to deal with.  Just as the LGBTQ+ rights movement isn't exclusively about marriage, and the Black civil rights movement was not, and will never be, exclusively about voting, the disability rights movement is not exclusively about physical accessibility, or employment.

It's about people like us being murdered, and our murderers not only getting away with it, but garnering sympathy for finally putting us out of our misery.

It's about meetings where they try to explain to us that it's "not about [our] limitations".  Because they're so fucking uncomfortable with the idea of disability that they'll go to any lengths to avoid it, even avoiding the word.

It's about being accused of lying, of faking it, by a grown woman who is supposed to be teaching us how to teach kids like me.

It's about some disabled people being silenced, while others, the ones who are seen as bravely trying to overcome their disabilities, have their voices amplified.

It's about the deep-seated fears of people who don't want to be like us. It's about the consequences of those fears. It's about the mindset "better dead than disabled".  It's about equating death with disability, equally horrible outcomes. It's about newly disabled people wanting to die, and that being completely understandable, because in their minds disability is a living hell.

It's about denying ableism exists, when no one would ever dream of denying the existence of racism, or sexism.

It's about being the butt of everyone's jokes, and no one sees a problem with that.  It's about being seen as a problem, or a punchline, rather than a human being.

And therein lies the fundamental problem.  We've been working backwards all this time.  If we can't even be seen as human beings who deserve the same basic rights as everyone else, how in the world are we going to convince people that we need accessible buildings, or jobs?  I am a fucking person, do you see that?  Of course they don't want to give us jobs, or healthcare, or independent living, because we're not people.  It's our own form of slavery, wrapped up in pretty little bows that say "special needs", "differently abled", "handi-capable".  It's our own 3/5 Compromise couched in political and social bullshit.  Because as long as they can Other us, they can justify not treating us with basic human dignity.

You can't sanitize disability justice.  And you can't sanitize me, either.  Because I'm not a sanitized crip.  I'm spastic, fantastic, one of Those People taking the Big Bad Crazy Pills, anxious, depressed, mobility aid walking, rolling wonder.  I call myself a cripple and proud.  And I'm not even half as hardcore as some of my friends.

Ableism is insidious, as are all forms of discrimination. It gets inside your mind.  And to present a shiny, PC version of it is grossly ironic and unjust.  Discrimination isn't supposed to be neat and tidy - it's supposed to be messy, tangled, bringing to light issues that everyone would rather not be talked about.

So this is a plea - please don't sanitize my disability justice for your own comfort. Come back to me when you feel uncomfortable.  Because that probably means you're doing it right.

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.

Thursday, July 11, 2013

The Opposite of Jealousy is Love

Dear Mom,
Dear Dad,
Dear Mommy, and Daddy
Mama, and Papa
Dear all the parents, of all the kids like me,

I know.  You're jealous of those other parents.  You're scared, and confused, and possibly even a little angry, because your child isn't typical, because life threw you for a loop, and now you're hearing confusing words like "autism", "cerebral palsy", "developmental delay", "Down Syndrome".  You watch the way other parents go about their lives with such ease and you think "Why can't it be that easy for me?"

But do you realize what you do to me, when you say you're jealous?  When you reference those other children, whose muscles developed in the "right" way, and in the "right" order?  Does that make my body wrong?  And if it does, doesn't that make me wrong?

When you say you're lucky, what does that make all the parents of all the children who are, in your eyes, "worse off"?  Unlucky?  Some would call you the unlucky one, for having me at all.  If I were a "normal" child, would you consider yourself lucky, for avoiding the unfortunate reality of a disabled child?

You reference the drained bank accounts, the hours of therapy, as though I'm no more than another written check, a finance-sucking monster.  Have you really distilled my life into a monetary value?  Into a quantifiable number of hours, number of days?  You dehumanize me.

You bemoan that I have never heard you say I love you.  But I know you love me, because I can feel it.  Love isn't about words.  It's about the little things.  It's about staying up all night, waiting to hear the slam of the door as your child comes in.  It's about tucking your child in every night, even when you know she's way too old.  It's about the hugs that mean everything.  And it's about giving your child the best possible quality of life you can give - and knowing that quality of life doesn't mean being normal.  It means being happy.

You make me feel like a burden on your life as you enumerate my difficulties, the things that other children do that I did late or may never do.  Is that what you wanted?  Because congratulations, you've succeeded.  But you wanted to be my parent.  It doesn't matter if you wanted a normal child more, because you can't request that of the egg and sperm that come together to make a child.  You can't return me like a too-big dress, a shirt that looked good on the hanger, but awful when you brought me home.  I am your child - like it or not.

I'd be lying if I said I wasn't jealous sometimes, too.  Jealous of the fluid movements, of the endless energy, of the life without pain.  But the fact of the matter is, this is my life and I enjoy it to the fullest.  I do not feel the loss that you feel, because I never envisioned myself any other way.  I am not broken, or worthless, or unlucky, or wrong.  Please don't put those labels on me because of your unexpected journey into disability-land.  I am whole, just the way I am.  Do you see me that way?

You are entitled to your jealousy, and I am entitled to my sadness.  All I want is for you to love me - no restrictions, no qualifiers, just the way I exist, right at this very moment.  Is that too much to ask?

Your Child