Steps - Blogging Against Disablism 2013
My prior Blogging Against Disablism Day posts are (2006 - locked), (2007 - locked) (2008 - locked) , (2009), (2010), (2011), and (2012)
Last month I climbed a step. A curb, actually. I put one foot up on it, tightened muscles to straighten the knee and swung up the other leg to join it. I wasn’t leaning on my car, and I was holding my cane but it wasn’t touching the ground.
It was the first time I had climbed a step without cane, car or handrail in nearly a decade.
The reasons why I stopped involve an implausible combination of factors including cerebral palsy, chronic hip pain and autism. The autism is the implausible part. But I really toe-walk more from autism than I do from cerebral palsy. The toe-walking led to the hip pain, which led me to curtail my stair-climbing which led to deconditioning so that I had trouble getting up the steps without support even when my hip didn’t hurt. It also led to my falling more when startled, and being afraid of falling on stairs after I fell over a row of seats in the lecture hall, so I started avoiding stairs even with a handrail. Because of my startle reflex, due to cerebral palsy. Or autism. I told you it was implausible.
But I had some physical therapy, and I had some NSAIDs and I had some time. I started using a cane to recondition, and the past 18 months I’ve been dancing nearly every week and my muscles have gotten stronger. Of course, the dancing better than walking is implausible, too, but there it is. And now I can get up a curb again which I couldn’t do even two years ago.
And for a moment I thought that was better. A positive step.
And in the next moment I wasn’t so sure.
So forget about my hands for a minute, which are always going to have a creative mix of weakness and dystonia, and which got me into the disability community and disability rights long before my hips got attacked by my toes. Let’s just say that I grew up climbing stairs, which is true, and then stopped being able to climb them, and then, after a decade, was able to climb them again. Let’s say I no longer had a mobility impairment of any kind.
Well I wouldn’t have a disability, then, would I? After 10 years, which for a woman in my thirties, is a pretty significant percentage of my lived experience. And then one could argue that a curable or resolvable impairment wasn’t a disability in the first place, even if it felt like one at the time. Even if I needed accommodations for it at the time.
We talk about disability being a minority group anyone can join at any time, due to accident or illness. But is it also a group one can leave at any time? It’s as unfathomable as losing any of my other group identities. It doesn’t feel like a positive step.
But there’s a bigger problem. Because my initial thinking was a step backwards, so to speak.
I didn’t get “better.” Climbing steps, or curbs, is not “better” than any other way from the parking lot to my apartment. My muscles may have gotten stronger. My balance may be less impaired. My anxiety level may even be lower. But none of those things are really “better.”
Being able to climb a curb is not better than taking the curb cut. It’s more convenient, but it isn’t inherently better. Climbing stairs is more convenient too, but that’s because stairs tend to be everywhere, while ramps and elevators tend to be around back, or behind a doorbell, or at the very least, behind stares.
You know what would be better? Having curb cuts and ramps and elevators everywhere there are steps, and having people able to give directions to the accessible routes that aren’t around back, or behind doorbells or stares. Better would be having waitstaff in restaurants ask “Braille or inkprint” the way they asked “smoking or non?” a decade ago. Better would be medical offices, retail establishments and other places that provide services be equally contactable by phone, e-mail, text, relay operator or by dropping by in person with an AAC device.
Better would be the ADA being followed in the US, and comparable (or better) laws being enacted and followed elsewhere. Better still would be not needing legislation for accommodations in the first place. Better would be recognizing that accommodations are not special treatment, and that there is a difference between treating people equally, and treating people with equal respect.
Better would be media representation of disability that is neither pitying, horrified nor awestruck. Better would be articles and shows about people with disabilities that centers the perspectives and voices of people with disabilities, rather than non-disabled relatives and professionals.
Better would be a world where the family of a child diagnosed with a developmental disability could be immediately put in touch with adults living with similar disabilities and hear stories of positive experiences as well as negative ones. Better would be a world where the diagnosis and ensuing discussion are not synonymous with “bad news.” Better would be a world where all professionals working in disability-related fields could see and respect the positive and neutral aspects of disability.
Better would be a world where I didn’t have to worry about the effects of disclosure on my career. And a world where I didn’t have to worry about the implausibility of some of my impairments.
Better would be a world without ablism. Better would be a world where my spellcheck had learned that “ablism” is a word. Best would be a world where my spellcheck didn’t have to.
In that world, it wouldn’t matter if I climbed up a curb or not. My legs may have gotten stronger, but the disability community is taking the steps to make the world better.