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Tuesday, July 26, 2016

Rob’s Rants on Disability: The Cure Question; Daydreamin’ of an Online Publication; A Few Good Blogs; Competition

I’ve had a few things about disability on my mind recently. Summer is a slow time for other topics I plan to write about a lot, so I thought I’d try a disability-centered Rob’s Rants. Except for sports, I don’t expect to use the format for one particular topic. Disability will certainly be in the mix quite frequently, I’m sure, but it will be thrown in with everything else. This post isn’t necessarily timely, instead, focusing on a few general or fairly recent subjects.

Here’s my rants on some disability topics I’ve mulled over lately:

  • “Would you take a magic pill to cure your disability?” In varying forms, the question occasionally arises in disability circles on social media. Years ago, I posed the question on a site I produced called PhillyACCESS. I intended the site as a local informational resource and a place to connect for people with disabilities in the Philadelphia area. I also tried generating some interaction among readers (and myself) at times. When I posed the cure question, I added the caveat that taking the pill caused you to forget everyone you ever met specifically because of your disability—for instance, friends you made while participating in an adaptive program of some kind. Simply put, I didn’t think there would be much debate without it.
I used to think the question was a good way to get into a discussion of how we feel about our disabilities—how much weight we give them in our lives. Yet, I’ve heard and read enough people claim they would not take the hypothetical cure (caveat free) in an attempt to slap the label of disability advocate across their chest that I’ve done an about face on the question. It doesn’t work. I’m calling BS. Obviously, you’d take the pill. Do you take medicine when you’re sick? Do you use assistive technology to be more independent? Would you get a broken bone set? Of course. If there was a cure for your disability, it would become the same type of thing. Besides, it’s easy to turn down a cure that doesn’t exist.

For the record, hell yes, I’d take the pill. I’d hesitate on the caveat I proposed, but, ultimately, I would still take it. Why wouldn’t I want to be able to play a game of hoops in the driveway or go golfing with my brothers? Why wouldn’t I want every move I make, every word I speak, to be easier? (Sorry for lapsing into Police-like lyrics.)

I understand disability is more than a broken bone or a cold. I also understand the real message being sent by the “I wouldn’t take a cure crowd”—there is no cure and society needs to deal with disability better. People with disabilities aren’t waiting around for a cure. We’re proudly living our lives. Agreed. But when the no-cure crowd speaks, people hear an extreme argument that is counter-intuitive. More importantly, it undermines the basic tenant of the “disability movement” (at least as I understand it) that we are equal to able-bodied people, we just happen to have limitations beyond our control. The minute the idea that we wouldn’t want to remove our limitations is introduced, none of that makes sense. You want accessibility—often read, tax dollars—for something you’re choosing to live with? Good luck with that. And that’s the tip of the iceberg. Carry the hypothetical out far enough and the no-cure respondents look silly. It’s a well-intended message being delivered terribly.

  • Sometimes I allow my mind to wander into the idea of attempting to create an online publication with other disabled writers. Despite feeling a disconnect with some of the disability discourse that I read on social media, I’ve been intrigued probably as far back as PhillyACCESS by the idea of a well organized publication with strong writers who happen to have a disability. The publication I daydream about now isn’t centered on disability. Of course, the question would become, what’s the hook? I’ve written for a couple other sites that were/are disability-centered. Both seem like just one article after the other on disability, dominated by articles about autism, mostly by parents of autistic children, or “invisible” disabilities. (The hierarchy of disability rides again.) This isn’t sour grapes—I enjoyed the exposure, and would submit again—just my observations. Like most daydreams, my thought of an online publication is far from complete and wrought with holes. It’s still fun to have once in a while.

  • I stumbled across an article by Joanne Grana, a woman living with a disability, who describes having to move into a home after an anonymous person called social services about her. While some details may be missing, the thought of being forced to move out of my home after my mom passed away based on an anonymous call and the opinion of a social worker scares the hell out of me. Grana’s also written numerous compelling posts on her own blog about life in a long-term care facility. While I’m pointing out good writing on disability, I’m never disappointed when I read Rebecca Levenberg’s A Thousand Miles or Andrew Pulrang’s Disability Thinking.

  • I recently checked out the 2016 Powerhockey Cup, held at the Pennsylvania Convention Center hosted by the Philadelphia PowerPlay, a power wheelchair hockey club. (For full disclosure, I briefly played on the team a few years ago.) I didn’t quite get to a game—couldn’t find parking when we drove down—but I watched PowerPlay via live streaming in the semifinals and finals. The local team came up just short against Minnesota. The teams play to win, which is great to see. I wonder a bit about faster wheelchairs having a clear advantage, since everyone uses power chairs, and the lack of substitutions. I’m sure it’s a tough balance for organizations looking to offer recreational opportunities for people with disabilities and providing true competition. Overall, though, I love seeing an event like this that brings people with disabilities together. 

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