Sometimes it is just all the little things. Hundreds of them. Thousands of them. They build up in your day, in your week, in your life. And maybe a good definition of whether you are a disabled person or not is whether you understand what I am talking about.
On the 29th of April I spent a very long hospital day, trying to negotiate the medical side of my — later in life — mobility disability. A day like this involves an excruciating series of repetition of medical history, but worse, an excruciating series of statements of sympathy without empathy — ”oh, I can’t imagine how you must feel” — no indeed you cannot, joined with a very low tolerance for any expressed frustration — ”I’m just doing my job, sir” — well, and here are a few papers for you to sign, papers that — because of that lifelong “print disability” — you can not read even if you wanted to, especially right now under total stress, and “just go down this hall and look for that sign…”
Angry paragraph. Angry day.
Ending in such absolute frustration that I ran, like the eight-year-old I’d become, except now I can’t run, so I clumsily crutched my way, fast as I can pathetically go, across the shiny wet asphalt in a soaking rain, just to be outside and alone. I got pretty far, all things considered, with people yelling my name in the dark… though, yes, even that is infantilizing.
Rain heads over the Blue Ridge, from the third floor of Augusta Health.
All the little things.
You can’t feel good about putting braille on your permanent directional signs unless, when you put up temporary signs, those have braille as well. Because… sh**
You can’t feel good about having braille and picture menus in your restaurant if a person who is blind or a dyslexic teenager can’t find out you have those without begging for help.
You can’t tell me that you, as a teacher or librarian, are open and fair to dyslexic and dysgraphic kids while you post a stream of articles about why printed books and handwriting are superior.
You can’t say you embrace universal design if every ramp, and every automatic door isn’t truly ‘right’ for a wheelchair user.
Alone with the ultrasound machine. “We need to look again because we didn’t mark your leg the last time.”
Out in the rain Friday night, hidden by the darkness, the sound of the rain muffling the sound of the crutches, I get to achieve autonomy. I need not come in out of the rain if I do not want to. I need not be found if I do not want to. I do not need to ask anyone for help…
via tomclark.blogspot.com Rain
You probably don’t know what it feels like to get left alone in an airport wheelchair, or without a wheelchair because, “we need it for another passenger,” and you sit among strangers, completely helpless.
You probably don’t know what it’s like to be asked to read out loud when you can’t make the symbols on the page make sense at all.
You probably don’t know what it’s like to be handed a pad of paper and be told to “leave her a note” when you know she will disregard that note — even if she could read it — because your handwriting will tell her that you’re a ‘retard’ (even though she’d never say that word outloud).
I wait for ice while nurses commiserate about auto insurance rates and discuss how catheter sizes might hurt annoying male patients.
Disability is a social construct, no matter how physical it is. In a certain world a scooter could be by the hospital doors — just like the supermarket — and I could be fleeing at 5 mph without tearing the sh** out of my shoulders. In a certain world you could see into supermarket freezer bins from a wheelchair or open freezer cabinet doors and reach inside. In a certain world every computer in every school would read text to every child who needed that. In a certain world the University of Virginia Hospital (among a million other places) wouldn’t use handicapped ramps to store plowed snow in the winter. In a certain world the independent action of the disabled would take precedence over the convenience of the typically abled.
What’s wrong with these beautiful Stryker wheelchairs now appearing in hospitals? The person in the chair is a prisoner.
I eventually do come back in from the rain, but I do it my way, lifting myself over and over, I can feel my good leg begging for mercy, my hips falling out of line, but I refuse to enter the vehicle riding beside me. They don’t understand why I’m out in the rain, and so they don’t get to rescue me. I’m soaked, and beyond exhausted, but f*** it. For this, it can’t even be close to half an hour, but for this time, it’s all mine.
And listen, sympathy without empathy sucks. I once, as a college undergrad, had a lovely sociology professor — she drank tea from a bowl-size cup all through class and dressed like a hippie from long ago — and she would ask the class to do some quick writing assignment and then, completely publicly, walk over to me and say, “oh Ira, you don’t have to do that.” I, just Thursday night, had a nurse tell me, “oh that must really hurt,” and then disappear for more than an hour — forgetting to bring the things that might help alleviate that pain. Sympathy is words… take a picture of a Hallmark sympathy card and text it to me if you must, but don’t waste my time. Empathy begins with enough understanding that allows you to treat me like a human.
At this point in my life all the little things have added up. From the paper towels in restrooms that are either non-existent or unreachable — leaving me with wet hands on crutches or wheelchair wheels, to the general assumption that everyone reads well enough — writes well enough — to fill out that form, to the professorial or teachers belief that assistive technology is ‘cheating,’ to the wheelchair doors with such steep thresholds that you can go flying out of that wheelchair or trip with crutches. All the little things are things of disregard for the disabled as humans. They are endless evidence that words are cheap, and consistent action is rare.
So on this Blogging Against Disablism Day, I’m angry. And I’m not really sorry about that either.
- Ira Socol