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I have something to get off my chest today. And, because I'm now stuck in bed with my head wrapped in ice, my grey matter compressed within a tight bit of fabric, to dodge the ordinary and still unusual pain of empty tooth sockets, I'm just going to say it. Consequences be damned. I have a wish today. This is it:
I want people to please stop posting inspiring photos of disabled kids or adults running in races or winning medals with captions that say things like "The only disability in life is a bad attitude."
Why, you ask. You are all lovely people. You mean well. You have sound ethics. You have no wish to offend. All this is certainly true. I know you inspirational-meme-posting people. These are not the bad folks. These, my friends, are the good ones. But. Please, anyhow, I am asking you don't post these images anymore with their accompanying inspirational quotes.
The only disability in life is not, in fact, a bad attitude. There are many other disabilities that one can have which will make it difficult to live life on terms negotiated in the Usual Life Contract. There are many people in many places, near and far, with disabilities more difficult to bear, physically or medically, mentally or emotionally than those in my inner circle, but I don’t want to speak for them today. I hope they can, as they are able, speak for themselves and for their loved ones. I will speak only for my own family. We are no perfect example. We are just all I know.
We do know something about disability. In my own house, many of the disabilities are relatively minor: for instance, learning problems such as ADHD and Auditory Processing Disorder. Minor, yes, but real enough to cause actual pain and difficulty to those who have to live with them. Real enough to require difficult decisions. Real enough to be recognized under the Americans with Disabilities Act. In my house, we also live with Dyslexia. We live with Chronic Pain -- severe enough that we are now find ourselves supporting our kids on one income.
We live, for the most part, with disabilities that no one can easily see. We all have the use of all our legs and arms. We have our full cognition -- squirrely as we are -- but we are all, to some extent, disabled. We have -- all of us adults -- also worked with disability in our professional lives. My mother worked twenty years in special education. I worked two as a one-on-one instructional aide, and my husband spent five years working in a group home for autistic adults. Our lives have been touched time and again by those that cannot do what “everybody” can do. I think, too, that in this we are not so unusual a family.
My husband and I know and teach our kids that attitude is critical. Attitude is what teaches you to advocate for yourself. Attitude is what teaches you to shoot for the stars. Attitude is also what teaches you, as often, to accept your limitations with a smile and be truly grateful for what you have. Attitude doesn't, though -- and this is important -- make you not disabled. It doesn't give you the impulse control or the attention span of a child unaffected with ADHD or the reading prowess of a non-dyslexic adult. It doesn't let me run for exercise, with the exhaustion and pain of my fibromyalgia, much as I might want to. Attitude has taught me to love life without everything the average Facebook meme poster might enjoy: the morning run, the camping trip, the energy to spend with friends. I love life with my disability, not in spite of it and not while I'm pretending it isn't there.
Is this semantics? I don't think so. If you think the only disability is attitude, you won't get around to giving me a call to see how I'm getting along. Once I can no longer run with you, I will simply drift out of your life. You see me as the author of my own experience and so your compassion -- the hard work of maintaining friendship -- isn't needed. If my kid has a can-do attitude, you will think, he too can succeed in what all kids are asked to do in school. Witness this anonymous little girl with the artificial legs. If she can do it, what's our excuse? Anyone who puts their mind to it can achieve, right? Like every other kind of banal prejudice, these Facebook memes are a window into something of our collective ignorance. They can, if we let them, reveal what we assume.
Wikipedia says: "The "ableist" societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm [witness the inspiring disabled athlete] or should keep their distance from able-bodied people." (Emphasis and insertion added by me.) Close your eyes and think of the most inspiring ill or disabled people you know. What is it that inspires you? Is it that they have found a measure of peace with their lives or that they have somehow overcome the challenge of their disability? Are they supposed to overcome? And does that overcoming necessarily mean looking or behaving more like you?
In this thoughtful article, by Cristina Hartmann, the author goes further in explaining why inspiring pictures of people with disabilities are generally offensive to disabled folks. The answer, of course, in short, is the same as why it is generally offensive that all African Americans should be inundated with images of highly successful black folks as “models,” and why all women should not be bludgeoned with stories and magazine spreads about "having it all." Most of us aren't going to "have it all." Most of us aren't going to want to train for the Olympics with two artificial legs. If people do that and it inspires them, then that is inspiring to me as well. I am inspired by people working for what they want for themselves, on their own terms. But these racing, medal moments are not the ideals for all of us.
The rest of us want to be seen for who we are as well.
Let me share some victories from inside my disabled life. The victory of my getting up and getting another day under my belt, even when my discomfort climbs over eight on the pain scale. My learning disabled son's victory in reading a passage out loud correctly without tears after skipping lines six times before in his attempts. My husband's reading enough material to take and pass a test for his IT certifications. My child with ADHD’s ending the day knowing the location of his wallet. All of these acts are heroic to me. We fight the fight each day. We smile and enjoy the journey. We admit our limitations, and we choose which battles we will wage. I often win when I remember that I cannot do it all, and I decide to go ahead and skip that potluck, as much as I wanted to see my friends. I win when I have had the strength to attend to my crying child because I first took the time to rest. My seven year-old wins biggest when he falls off his bike, stands up and says, “Mistakes, mistakes. That’s what it takes!” because we’ve taught him that it’s OK to screw things up.
To really see that victory you have to see the disability. You have to know how hard-won is that failure without tears, or the willingness to let go of something social in favor of taking rest. Don’t be afraid to look, to ask. And please don’t forget we are out here. One in five Americans lives with a physical or mental disability, one in ten of them considered severe. When you are posting your motivational memes and daily doses of runner’s glee, it is wise to remember that they are not always viewed by someone with a body that will ever run. And so I invite you not to political correctness -- because, honestly, who gives a crap -- but to an appreciation for your membership in a whole human family; gay, straight, black, white, immigrant and aboriginal, faithful and empirically-minded, able-bodied and disabled. Next to you is always somebody you wouldn’t want to hurt. It bears thinking about.
And maybe that’s the hardest thing of all, just adding that second step.
2. Stop. Think.
3. Repost. Or not.
Thanks for listening. Please share your thoughts. What does “disability” mean in your life and from where do you draw inspiration in tackling hard things?