My Thoughts on Interaction Among People With Disabilities
“I walk! I walk!” my buddy said angrily as he got out of his chair and walked up and down between the desks that formed a square U with a hook on the one end that was his desk.
I sat just feet from him on the other end of the U looking straight at him. I knew it was coming. Our teacher was giving him static for not doing something independently that I could do — I honestly forget what — and I knew he was ready to blow. She just kept it up a little too long, and he decided to point out something he could do that I could not.
I actually remember not getting angry at that moment. I recall being amused at the utter fear on the face of our teacher as she thought that I would be devastated. At least that’s how I read her expression. But I must confess that I remember the debate over who could do what lasting at least through lunch when I gave “Dan” (not his real name) one of my cookies and dared him to feed it to himself. We both needed help eating lunch, but I could eat cookies independently. When the cookie crumbled in his hand, I’m pretty sure I was told to go do some unnatural things to myself.
And that is absolutely one of my favorite memories from my time in a school for kids with disabilities. I can assure readers that Dan and I laughed about this and many similar stories plenty of times in later years. My only regret at the moment is that I don’t have his e-mail address to re-share the memory with him. Dan has been in and out of my life since kindergarten. He’s a couple years older than me, so throughout our time at the school he would move to the next class and a year or two later we’d be classmates again. It went like that all the way through us being mainstreamed until Dan graduated high school. As adults, when one of us is struggling, or perhaps when both of us are struggling at the same time, with whatever a life with cerebral palsy brings us, we have parted ways.
My guess is that most people, at least most able-bodied people, might not get the “I walk” story. I imagine many would be taken back by two kids with disabilities treating each other, in their estimation, so “horribly.” In fact, though I think they will understand the humor in the above story, my mom and a good friend of mine — who is also a mom to an adult with a disability — have often told me that they believe people with disabilities are harder on each other than any other group treats members of the same group.
I’ve always resisted the notion that people with disabilities are too hard on each other. Able-bodied people just didn’t get it, I thought. My friends and I could talk about our disabilities and even respond to each other’s disabilities in ways others really could not, simply because we understood the shared experience. To Dan and me, debating things like who could walk or feed themselves better was the same as two kids arguing over who could run faster or hit a baseball further.
Yet, my resolve in that opinion is shaken by the online interaction I’ve often seen among people with disabilities, myself included. Like anyone who has written articles for online publications, I’ve had to get used to commenters telling the world they think I’m wrong because they disagree with something I’ve written. Living a fairly quiet life, not really by choice but by circumstance, it has definitely taken some effort to learn to “let it roll off my back” at times.
I’ve kind of adjusted to the condescending comments from people who are clearly able-bodied. One came when the introduction to my book, “I’m Not Here to Inspire You,” ran on various websites. The woman admitted to arguing with her sister for most of their lives over the idea of people with disabilities always being viewed as inspirational. The sister, who presumably lives with a disability, had even directed the woman to the introduction, which she proceeded to call ridiculous before offering a trite analogy about how we’re all rowing the boat of life together. Apparently, being inspirational trinkets was how people with disabilities helped row.
But the hardest comments for me to understand are often the ones coming from other people with disabilities. One comment that really stayed with me for a while came when I wrote an article for a site for readers with disabilities. I was told — by a commenter — that I didn’t understand my responsibilities on the site simply because I wrote about my experience at a vacation spot known for its accessibility for people with disabilities. I found it less than the stellar experience others have claimed it to be, and I offered my opinion in an article that was approved and published by editors of the site. Yet, because she had a better experience as a person with a disability, I was wrong — as in incorrect — in detailing my experiences. Accommodations that my family needed and weren’t provided were deemed unreasonable requests simply because she didn’t think they were important.
I didn’t handle my responsibilities to engage commenters very well in that instance, and that’s on me. I was once asked by a columnist at a major paper in my area what I was even doing reading the comments section when I questioned what seemed like some particularly rude remarks on one of his pieces in which I was quoted. Apparently, seasoned writers learn to tune out the commenters, and, as I get the opportunity to write for websites with more readers and active comment sections, I’ve learned to do the same.
Yet, the interaction between writers with disabilities and commenters with disabilities that I have witnessed feels like more than a demonstration of the typical “beer muscles” that the anonymity of commenting online can give readers.When Annae Jones dared to confess that she had never considered marrying a man with a disability despite (or, perhaps more accurately, because of) her own disability, she was ripped by commenters. (It appears that some of the more disturbing comments were deleted.) Emily Ladau wrote about the harsh comments she had received with a post that questioned “why people within a population that already faces marginalization would speak so harshly to another person within that population.” Yet another writer, Anita Cameron, noted similar behavior, imploring us to come together in a post in which she wrote, “I find it disheartening and disturbing when I see people and groups who have been oppressed by the dominant culture in turn, oppress other marginalized groups and people. It’s particularly disturbing when I see this among groups of people with disabilities.”
I believe nothing enrages a person with a disability more than having an able-bodied person correct them for having an opinion. We are rightly more than irritated at the patronizing attitude that allows a stranger to step into a situation in which we are fully competent and offering instructions that they have no business giving. However, we seem perfectly comfortable doing it to each other.
Like the other writers, I’m not suggesting that people within the disability community all get together and sing “Kumbaya” around a camp fire. In fact, being rude and ignorant to each other in the comments section of articles published online might be one of the things that proves we really are just like our able-bodied counterparts. CNN and other major websites recently began limiting or banning comments on certain types of stories due to the unruly behavior of commenters.
I’ve often wondered if the word “community” should even be used in regards to people with disabilities. We are so diverse both in relation to our disabilities and in terms of who we are regardless of our disabilities, it probably doesn’t even make sense to see us as a community.
However, I’ve witnessed and been a part of this type of interaction among people with similar disabilities. I could offer my own pop psychology and suggest that we feel empowered to offer our opinions more forcefully within groups of people with disabilities because we’re free from trying to be accepted in a conversation with people who are mostly able-bodied. That sense of freedom might cause us to be overzealous in engaging each other simply because we don’t always get to have our voices heard in debates that we’d like to join. So, when we do get the opportunity to express ourselves, we don’t hold back. Perhaps that same freedom is the reason that as kids my friends and I would seemingly be harder on each other than we would be with others.
Of course, we need much more than pop psychology to find real answers to questions about the ways in which people with disabilities interact. Seeking those answers, however, would seem to be a vital step in moving forward either as a larger community or a series of smaller communities.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.