Priorities

19Nov13

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“As you grow older, you’ll see white men cheat black men every day of your life, but let me tell you something and don’t you forget it – whenever a white man does that to a black man, no matter who he is, how rich he is, or how fine a family he comes from, that white man is trash.” –Atticus Finch, To Kill A Mockingbird

Sometimes, I procrastinate posting something for so long that it becomes relevant again, or my thoughts on the matter actually change or mature. Today’s one of those days, so, huzzah, I suppose?

I sometimes have trouble getting worked up about things I should probably care about (positively or negatively). One that comes most immediately to mind is “inspiration porn” stories of people doing something nice for a kid with disabilities (This story of a boy with autism getting put in his school’s basketball game and scoring many points is a really good example; or any story of a high school senior with Down syndrome being made Homecoming Queen/King). Doing nice things for kids with challenges is just as much (if not more) about making us feel like we’re good people as it is for the benefit of the person. And, if you don’t interact with disabled people in your day-to-day and the only time they cross your path is when they’re bagging your groceries or when one of your friends posts a story like this on your Facebook wall, you may be led to the logical but perfectly erroneous impression that the best thing you can do for a person with special needs is give them one overwhelmingly awesome experience of awesomeness and make their day. I don’t have the patience for people who indulge in that kindhearted but misled attitude. I love the effort, I’m glad you want people with disabilities to have good experiences, and if you want to share them on Facebook that’s fine, but they just don’t generally touch the happy space in my heart.

On the other end, I had a really hard time getting worked up back in mid-August when a family was sent a shockingly horrendous letter about their son, a 13-year-old boy with autism.* Again, this should be right up my alley, right? Defending people with disabilities is right in my wheelhouse. If I was a superhero, I would haunt the places where adults with disabilities hang out and just wait for neurotypical teenagers to show up and start taunting them, and then I would go all Batman on their asses. But the letter really didn’t horrify me, for two contradictory reasons: one is that I think a lot of people are dismissive or hostile or annoyed by people with disabilities, though they’re obviously less caustic about it than whoever wrote this letter. To all the people who were shocked and appalled by the letter, the dark and cynical corner of my heart wonders, where have you been? Where were you in middle school when kids were calling each other retarded? Where were you when Ricky Gervais was pulling “mong faces” on Twitter, and then dismissing the opinions of everyone who was insulted by telling them they were oversensitive? Where were you when Ann Coulter called the President of the United States a retard? Where were you when Margaret Cho said that all the remaining eggs in her ovaries were “retard babies”? (And to all my queer, liberal, feminist, fat-positive friends: Do you understand why I cannot, will not, indulge in your Margaret Cho love?) Do you see how not caring about the language used to describe disabled people leads directly to bullshit like this? But on the other hand, and contradictorily, I also know that the letter writer’s feelings are atypical of the general population. I know that pretty much everyone, once they meet my sister, loves her and wants her in their lives. They want what’s best for her. They want to protect her. They want to keep her around. My sister is extraordinarily well-loved, and that love provides a buffer for me (and for her) when it comes to hostility from misinformed and maladapted strangers who don’t deserve to know her anyway. Haters gonna hate, as they say.

So yeah. Don’t really care about your hate, don’t really care about your feel-good human interest story. I’m tired of it, I’ve heard it before, I want us to have a new discussion. I have bigger worries on my plate than people thinking my sister is a one-dimensional happiness angel, or even people who think she’s a one-dimensional waste of oxygen.

All you people who post the above stories on Facebook, who want to make a difference in the lives of people with disabilities: Where were you when voters in my county defeated a ballot measure that would have eliminated the county wait list for services available for adults with disabilities, and improved their quality of life? Where were you while the rate of sexual assault of disabled adults got frighteningly, absurdly high? Where were you when my parents tried to figure out how to financially support my sister when they die, so she doesn’t end up homeless or in a state-run group home or dead? Where were you while Goodwill was paying prison wages or less to their disabled employees thanks to a law that apparently hasn’t been updated since 1939? When disabled adults started living in poverty and homelessness at several times the national average for neurotypical adults?

My sister needs people who love her and care for her, yes. She needs people who respect her and treat her like a person. And she has that. But that’s not all she needs. She doesn’t need people cooing and coddling over her. She needs people who will make sure that her safety and her financial stability are high on the list of priorities. Who know that her quality of life on a day-to-day basis matters. Who won’t let her fall through the cracks. And on that score, somehow, I don’t think I have a hope of getting a million Facebook likes. I don’t have a prayer of convincing anyone in Washington that any raise in the minimum wage should also close the loophole that allows disabled adults to get paid so little. I feel like there’s nobody in the world in between my sister and a life of poverty and danger except for me and my family. And that’s not a confidence-inspiring feeling. That feeling that Samwise Gamgee had, looking down into the pits of Mordor, knowing that all that stood between Sauron and the destruction of Middle Earth was two small hobbits? And moreover, knowing that the responsibility of keeping Frodo safe fell on him, and him alone, in that whole big bad world? Yeah. That’s the feeling.

*The response of the boy’s mother is worthwhile reading, more worthwhile than the original letter, anyway.

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