Navigating identity

“That quote, ‘The only disability in life is a bad attitude,’ the reason that that’s bullshit is because it’s just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never.” — Stella Young, 2014.

I distinctly remember the day I returned to work after being in the hospital for a week. I was using a cane and re-learning how to walk. My official MS diagnosis was a few weeks away, so I had yet to start disease-modifying therapy.

There were stairs to get into my office building, between two sets of heavy doors. My options were to swallow my dignity and slowly hobble my way up the usual way, or use the back entrance and take the dirty freight elevator up to my office on the third floor.

Looking back at that moment now, I am vigorously nodding my head at Young’s take on the social model of disability. No amount of smiling changes a world that isn’t designed for you. I asked management what it would take to make entering the building a possibility for those who couldn’t use the stairs. I was met with shrugs and no guaranteeing of retrofitting because the building was on the register of historic places.

It was a long, bumpy road to come to terms with MS – one that I’m still on, because the game keeps changing. The world, I’ve found, doesn’t adjust so easily, so I adapt when I can.

photo at left - regular vision, photo at right, with optic neuritisBut I’m still rolling the idea of being the other in my head. Am I disabled or do I *just* have a disability? Is that a distinction without a difference?

Without hesitation, I can say that the concept of the identity of other as it relates to multi-modality (and rhetoric in general) ranks pretty high for me. Naturally, as a woman I’ve been an “other” but it wasn’t until a few years ago that I began to understand what being another type of “other” was like. That other felt more like being an outsider, left to navigate a world where the rules of the game were not in my favor.

That’s why Georgina Kleege’s essay on her firsthand account with blindness resonated so much with me. Too often, the world defines the other as the lesser, when in fact others find even more creative avenues, channels, senses, and talents to use. Our sense of self, and the world, is somehow heightened.

Disability scholar and writer Tobin Siebers, believes that disabled people “have to be ingenious to live in societies that are by their design inaccessible and by their inclination prejudiced against disability. It requires a great deal of artfulness and creativity to figure out how to make it through the day when you are disabled, given the condition of our society.”

He shares a quote by Neil Marcus that has echoes of Young’s TED Talk, especially the part about exceptionalism: “Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live.”

Living with a disability isn’t about adjusting to your condition as much as it is adapting to the world, which is, as Kleege points out the curse of the Hypothetical Blind Man. People with sight or the ability to walk can’t imagine a world without those things, constructing a world for the disabled person only in relation to themselves – they believe blindness to be a loss, a deficiency. But, as Kleege points out, to say that blindness is only the absence of sight is making a huge assumption.

Siebers, again, points out one of the most damaging fallacies, saying “we do not recognize degrees of disability. Disabled people are believed to be disabled all the way down. If you have trouble seeing, you must have trouble hearing and thinking, too.”

Rosemarie Garland-Thomson echoes this in her essay The Story of My Work: How I Became Disabled. “While the world demands that all people undertake dual body and social management,” she writes, “dealing with disability identity has distinctive aspects that center around the understanding of disability as having something wrong with you.”

“One is not born disabled, but rather becomes disabled.”

I realized very soon into my diagnosis that I need to claim my disability but not let it define me.

As Garland-Thomson asserts, people with disabilities must simultaneously navigate two interrelated territories – body management and social management.

Social management deals with how those with disabilities manage their bodies in environments not made for them. That happens in buildings, like in the case of the stairs at my old office, but also in digital environments.

 

 

 

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