Educating the mainstream population about disability etiquette is so difficult. We want to tell non-disabled people what we think, but we don’t want to offend them or make them feel bad.
Those are the words of Greg Smith, a.k.a. The Strength Coach. He wrote them in a February post about an audio interview that I did. Last month, Greg passed away.
I didn’t know Greg well. But I had followed him since before “following” was a social media term. I was thrilled to write an article about his ADA Fan Cam initiative last summer.
Writing the article felt like completing something I started about 16 years earlier when I interviewed Greg about his radio program on disability. I was writing a short-lived newspaper column covering people with disabilities without the inspirational angle normally employed. Deemed not of local interest, the article about Greg never ran.
A lasting memory I have of Greg is his “soda” video. I recall a longer version than the one I’m linking to, but Greg tells the story of struggling to open a bottle of Pepsi. At times I struggle with the same task, though I’m usually opening a half-gallon of iced-T. It’s not that I don’t have the physical strength like Greg due to his Muscular Dystrophy. I have to work to avoid the spasm that sometimes comes when I finally break the seal, sending half the bottle of iced-T all over everything.
But I know that feeling of I’m going to drink this #@$&! soda if it kills me.
Greg was one of the first guys I ever heard talk about disability by describing every day experiences. It really hit home. I think shared experiences are what bond us as people with disabilities. They often allow us to take a deep breath, relieved someone else truly understands.
I didn’t hear about Greg’s death for a couple weeks. I was attempting to reduce my time on social media because the tone of the disability conversation that I was hearing was something I connected with less and less.
We seem to either use rose-colored glasses or slam everyone who says or does anything that doesn’t follow, as Greg put it, disability etiquette.
I can’t find the post for linking verification, but I remember John Kasich being taken to task for calling a group “developmentally disabled.” He was talking to people with physical disabilities after a rally; I think they were angered by being seated in the back. Let’s make him remember it at the polls was the message in one comment about his use of the incorrect term.
Cries of ableism abound on Twitter every time someone doesn’t like something that’s said about disability.
A Twitter chat with Sam Clafin was overrun by people with disabilities grilling him for his role as a disabled man in Me Before You. He was asked some legitimate questions that I wish he answered. But he was also asked questions like, “Did you learn about the real issues surrounding assisted suicide & disability community when preparing for this role?” “Do you recognize that terms like ‘wheelchair bound’ or ‘suffering from’ are frowned upon by the disabled?” No, I thought, he didn’t think about that. He’s just an actor who took a role. Not surprisingly, the chat ended early.
This spring I watched a live video by “Handicap This,” two guys who do a show on disability awareness. A deaf individual demanded closed captions or she’d unfollow the Facebook page. Mike Berkson, one of the “Handicap This” guys, has cerebral palsy that affects his speech and she couldn’t read his lips. A promise to look into it seemed to appease the commenter.
I experienced similar anger after posting a video I created that had captions, or really words flashing across the screen instead of a voice-over, due to my own speech disability. I was “building barriers,” I was told, because the video didn’t work for blind people. I added “video description,” largely to avoid a public flogging.
While I can appreciate the frustration of the commenters, people with speech disabilities have a right to shoot video. I don’t think it’s even possible to have closed captions on live Facebook videos. If it is, like YouTube’s automatic captioning, it wouldn’t work for me or, presumably, Mike, due to our speech. Yet, there was no room for debate. We either acquiesced or we were discriminating.
I’m not suggesting any of these issues are bogus. (Though ableism is being overused.) But our issues need discussion. Can we really make everything accessible to everyone? What happens when needs and abilities clash? Do we want to dismiss candidates for genuine missteps? Are we going rip every depiction of disability not in-line with our perspective?
I keep going back to Greg’s sentiment. The words he wrote came after he described an exchange in the interview in which I was asked if the novella I had written was a change from my first book. The title of that book, I’m Not Here to Inspire You, causes many people to assume it has a negative message. The question caught me off-guard—never a good thing for me with my cerebral palsy. Part of the book discusses how people with disabilities are too often depicted as overcoming their disabilities as opposed to living with them. I didn’t want people thinking my new character was written in that mold, or that I’d reversed my stance on other topics in the book. My spasm-induced, “No,” came out too loudly, before I took a breath and explained myself.
Greg liked the explanation enough to write about it. But his words and that question stayed with me.
It might sound strange coming from the guy who wrote I’m Not Here to Inspire You, but I do think we need a new approach to disability discourse.
Perhaps Greg’s message applies to us all—educating each other about disability is so difficult.
I’ll miss Greg Smith and his strength, but I won’t forget his message.