Originally posted October 16, 2012 for Ekso Bionics.
When you first acquire a disability, it’s just not possible to imagine adopting the identity of disability with pride. In the beginning, identifying with disability at all is deeply infused with stigma. In the beginning there is only loss. There is nothing to take pride in, only the deeply uncertain mire of coping with a primal sense of trauma, and a vision of the future that has gone dark. Of course people resist it — at first.
We also resist adopting disability identity as long as we feel we have the potential to recover — or are holding on to the hope for it. Warding off acceptance and identification with disability is, for some people, an important part of the early process, giving recovery every possible chance. And sometimes it happens.
Temporary disability is not necessarily a path to pride, though it’s often a path to a rich quality of empathy and understanding of the disability experience. However it turns out, there’s always some benefit to mine.
In the initial period following my paralysis, I experienced a nominal amount of recovery, regaining use of select muscles in my upper legs. But in time it became undeniably clear that I would not gain the muscle function and control it would take to walk. I realized that I should get on with my life, regardless of what degree of recovery I made. In fact, I already was out there doing it. I was primed to discover disability pride.
Time does heal, as it turns out. As a person moves forward — assuming they get access to good rehab, to optimal mobility equipment, and make a personal choice to move forward and find out what might be ahead beyond the darkness — their perspective on identification with disability evolves.
The process usually starts by discovering that living with a disability is substantially a matter of method. I spent seven weeks in rehab. I got trained how to live as a wheelchair user. I’ve achieved what I consider mastery of living with paralysis; what I do has become the natural way I function. Wheeling is normal for me, and I have a very refined sense of space, curb heights, and turning radius. (In fact, it’s helped me get really good at parallel parking!)
When you get an initial taste of that, you start to sense that there actually is a vision ahead that just has yet to take shape — and that you absolutely have a lot of influence over how that vision takes shape.
This recognition that I just had stuff to learn took some of the edge off the tragedy of becoming paralyzed at the age of 18 in 1973 (you do the math). Life as a wheelchair user was going to be more doable than I feared. I was seeing people living evidently full lives on wheels. I figured if they could do it, so could I.
I still had a way to go to get to “disability pride,” but disability as irredeemably tragic loss was gradually but surely falling by the wayside.
I returned to school, studying architecture in a building that was inaccessible, as it happened. Carried up and down steps to study architecture (note the irony here?), I got a real taste of my capacity to do what I had to do to work toward my goals.
I didn’t feel special. I felt witness to a capacity in myself that is universally human. My experience of paralysis was the catalyst for this discovery, and it was truly profound. There were aspects of the disability experience which were deepening me. Positive things.
It was also eminently clear that everyone else (“society”) had no idea how living with a disability worked. Early on I cared a lot about they thought. I needed them to know that I was active and independent and could open doors by myself. But since people around me typically got it wrong (and still do), in time I became less concerned about how others saw me. I was gaining a firmer grip on my own sense of self on my own terms. For an eighteen-year-old boy, this was no small thing. In fact, isn’t it the journey we’re all on?
I was succeeding at living with a disability. I was manifesting a deeply human drive to reach for what life was possible, and it turned out that a very great deal of life was possible. The fact that I didn’t have much choice in the matter (about being paralyzed, that is) didn’t dilute the fact that these adjustments and insights were profoundly meaningful. I was, in effect, forced to discover the miracle of my own innately human power.
As the years have advanced (42 and counting now), my point of reference to walking has drifted into the background. I outnumbered my days walking when I turned 37, having been eighteen and a half when I was injured. I had lived more than half my life with a disability, and my disability identity had become primary, my life walking a now smaller part of the whole. My orientation looking back on the life on wheels that I’ve lived — a long way from perfect, I assure you — is to contemplate what I’ve accomplished, not what I’d lost.
I had done way more than merely survive. I didn’t give up, I pushed beyond comfort zones, I’ve drawn on the miracle of my humanity, accumulating experiences I clearly wouldn’t have had on my feet. I had plenty of cause to be proud. Not as an egotistical conceit, but as a recognition of my value in the context of my disability.
And knowing the number of people with disabilities that I do, I can promise you that I’m no exception, that I’m not rare in this sense. Literally millions of people would repeat their version of this perspective for you.
People with disabilities have shown what they’ve got. Committed to living the visions they see for themselves, people with disabilities have designed the incredibly sophisticated wheelchairs we use, fostered a wide array of assistive technologies, blown open recreation and athletic possibilities, and fought for changes in policy and law.
People with disabilities have fought for accessibility and civil rights protections under the law, people have paraded in the streets, occupied buildings, and chained themselves to buses. There are people who worked and studied and gained the sophistication it takes to sit at tables as equals with legislators and executives.
They have changed our world. And you better believe they take pride in it.