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Shouting Over the Walls

castlewallsA weird thing has been happening lately. The disability community has been in the news. Like, in the actual news. Not just our news, not just within our little world bubble, but in the actual mainstream media. I think we probably have Donald Trump to thank for it, in a weird way. If he hadn’t so publicly and grotesquely made fun of New York Times reporter Serge Kovaleski, I’m not sure the DNC would have jumped with quite so much enthusiasm at the opportunity to feature so many people with disabilities and to rerun that Trump clip quite so many times.

But I like to think that it’s more than that. Disability rights are human rights, to paraphrase Hillary Clinton. I’ve been saying for a long time that the fight for justice and access and equality for people with disabilities may very well be the last great civil rights struggle in this country. I like to think disability rights was so front and center because its time has come. It’s long overdue, truthfully.

It hasn’t been perfect, of course. I’m still frankly appalled that the mass murder of nineteen people with disabilities in Japan hasn’t garnered very much attention in this country. Nineteen people killed in their sleep is a huge story. It mostly disappeared from the news here the day it happened. Crimes against people with disabilities are deeply troubling, and still go largely unrecognized by the general public.

As the father of a daughter who has an intellectual disability and who trusts and loves far, far too easily, let me remind you of a disturbing statistic. In 2015, a Senate inquiry into violence against people with disabilities heard testimony stating that more than seventy percent of women with disabilities are at some point victims of violent sexual encounters. More than ninety percent of women with an intellectual disability have been sexually abused, more than two thirds of them before they turn eighteen. That wasn’t a typo. NINETY PERCENT. Go back and read that again. And again. When I read it, I want to set things on fire. I kind of hope you do, too.

Sometimes the idea of raising awareness feels more urgent than others. This is one of those times. People with disabilities are concerned about the possibility becoming victims of violence, whether that means being raped or mistakenly shot by police or stabbed to death in their sleep specifically because they have a disability. They’re scared. They probably should be.

So it feels good to see the concerns of the disability community get some air time, even if it is at least in part election year shenanigans. Will that last past November? I’m hopeful, albeit skeptically so. The issues facing our community are critically important. They have been all along.

As a special needs parent, I must confess that it’s a little strange seeing our loved ones and their concerns getting attention in the general press. It feels a little like having beloved but unexpected company show up when you’ve been spending so many days alone, eating ramen and binge-watching Netflix in your pajamas.

I can’t speak for people with disabilities about the inner details of their experiences, nor would I ever try to. As the father of a young lady with an intellectual disability, I can only give my perspective as a parent. And that perspective is this: It is an extremely lonely experience. Yes, even with all the support online and with all the people who read and respond and share their own experiences, being the parent of someone with a disability, someone you will take care of for the rest of your life, it is rich and it is rewarding, but it’s hardly ever easy, and most of all, it’s a deeply isolating existence. We live behind castle walls, ones not of our making.

So many of the discussions and emails I’ve received lately have reminded me of how tall the castle walls can loom, and how deep the moat runs. I’ve been told that my opinions on politics and other topics are distorted by the experience of being a disability parent. There was the email telling me that yeah, sure, kids in special education classes need more resources, but so do kids in gifted and talented programs, and I should be advocating for both equally. I’ve been told that being a special education teacher or knowing people with kids with autism means understanding exactly what the lives of people with disabilities and their parents are like. I’ve seen, time and time again, parents of kids with disabilities told that their challenges aren’t any more daunting than those of any other parents. It’s the “we’ve all got troubles, bub” argument, first cousin once removed of “quit your bitching already”. I’m reminded again and again that for those of us attempting to build lives with disabled kids while trying to live normal ones ourselves (pretty much an impossibility, but you’ve got to try), it’s a sucker’s bet to try and explain that no, it’s not the same as any other family, and usually it’s not even close. Put it in a hashtag if you will, but remember that #NotJustDisabledKids sounds a lot like #AllLivesMatter to us.

So it’s hard to explain to you now how it feels, watching disability issues on the news, or at least seeing disabled lives and the lives of parents and family members and loved ones actually represented in the commercial media. Because it feels new, and it feels promising. We want it to mean something, we need it to be more than just “gosh, it’s swell, seeing our folks on the tv like that”. We’re hopeful, we are desperately hopeful that the rest of you will keep giving a damn.

But we’ve also watched horrible things go unacknowledged, and we’ve been told precisely how we should express our hopes and fears, told the dimensions and the limits of the space in which we should make our noise. We’ve happily seen our disabled loved ones get some time in front of the microphone. We’ve continued, sometimes forcefully, to insist on our space to discuss the world in which we as parents and loved ones find ourselves.

Recent awareness of disability issues is a great beginning, if it’s genuine and if it’s lasting and if it fuels actual progress. If not, our walls still stand. We don’t love them, and we didn’t build them. But we do demand that you acknowledge them, and that you show them the healthy respect and the terrible, terrible awe they deserve.

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One Comment
  1. Janet Shouse
    August 4, 2016 | Reply

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