Remembering The Strength Coach, Greg Smith
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.