I was working on a writing project when the phone rang.
“Hey, Pop. What’s up?”
“I have a question since I want to be more sensitive to people with disabilities.”
I chuckled. Let me just say that disability etiquette has never been at the tippy top of my 75-year-old father’s list of priorities. Instead, when I was growing up, he laughed about disability often. Comedienne Lily Tomlin did a televised sketch once in the 1970’s. The character she was playing was a cynical old woman who didn’t have much patience for other people. When the woman passed someone using a wheelchair on the sidewalk, her comment was “Why don’t THOSE people just stay home.” My dad repeated the line hundreds of times over the next few decades. And it took him a long time to understand that the word “gimp” could really bother me, even though he was teasing when he said it. So, when he called to ask me a question about sensitivity, I had to hand it to him. That was something I don’t think he would have done a few years ago.
He had been listening to a radio show, and the DJ’s were talking about a documentary that follows three people who are blind in New York City and their efforts to navigate the dating scene. The name of the documentary is Blind Date. My dad was curious if I thought the title was insensitive.
“That depends,” I said. “If the people who are being profiled in the documentary were asked if that was an acceptable title and they were okay with it, then I think that is fine. If, on the other hand, that is the title that the creators of the documentary came up with and their motivation was to be clever in order to boost rating somehow, without asking the subjects of the film, that might be a problem.”
A few years ago, at the height of my wheelchair ballroom dancing days, I was invited to be part of a documentary on TLC, called “The Dancer with Tiny Legs.” The documentary was about a friend of mine, JoAnne Fluke, who has a disability called caudal regression. It means that the lower half of JoAnne’s body did not develop correctly in utero, and as a result, she has very small legs that sit beneath her when she is in her wheelchair. She dances anyway, and the documentary is about her and Brandon, our dance instructor, preparing for and participating in a dance competition.
JoAnne and I used to go to our dance lessons together, so there is a scene in the documentary when I am being helped into the car by one of my caregivers. It’s all pretty innocent and I am keenly aware that I would not be able to live the life that I want to without the support that my caregivers provide me. In the finished documentary, the voiceover when I was being helped into the car said something like, “Even with the severity of her disability, JoAnne has never needed caregivers.” When I first saw it, to me that line came across with a drop of disapproval. It might seem like a small thing, but it bugged me a bit. I got the vibe when I heard that sentence, that having the need for caregivers in my life made me less independent than JoAnne is. Maybe in some ways that might be true, but I do not think that is a universal fact across the board. And I totally respect that many people with disabilities would not have interpreted the scene that showed me getting helped into JoAnne’s car in the same way that I did. My point is that we are all sensitive to different types of issues.
My first book is coming out soon and I could not be more excited. As I have given it to some people to read, I got some interesting feedback. Even though I say several times that the book is only my opinion based on my experiences as a woman with several disabilities, people thought I was sending the message that my way was the only way to do things. And that is not what I want to convey in the least.
So, after some thought, I changed the subtitle. The title of my book is now “More the Same than Different: What I Wish People Knew About Respecting and Including People with Disabilities.”
Because people have questions about disability issues. And those questions don’t usually have a black or white answer. It depends on the perspective of the person with a disability in any given situation. But the questions will continue to come up. Sometimes in the most unlikely ways, by the most unlikely people.
Just ask my dad.