Opinion

What I learned | GUEST OPINION

As we start yet another new year filled with possibility and challenge, I find myself reflecting on the many lessons learned this past year from stories of diversity and inclusion.

More than anything, I learned a new way of seeing beyond the commonly used label “disability.”  Everyone I know uses this word, usually with the best of intentions. I use it myself. But labels are almost never useful; they diminish people and create hurtful if unintended boundaries.

Perhaps a better way of seeing each other — more accurate, more useful, and more compassionate than a label — is to think of ourselves and everyone around us as uniquely complex bundles of human characteristics, with some characteristics expressed more and others expressed less or not at all in gloriously infinite combination. Given that we are all so different, yet in our difference so very much alike, who can say where to draw the line between one label and another?

Take, for example, another key insight from this year. I learned how much people of all abilities need to be loved and wanted, and what their experiences in the thorny realm of romantic relationships can teach us. I was so moved by the recent newspaper account of Jack and Kirsten — one with Asperger syndrome, the other with a mild form of autism — as they work through the tribulations of young love.

“She was the only girl to have ever asked questions about his obsessive interests — chemistry, libertarian politics, the small drone aircraft he was building in his kitchen — as though she actually cared to hear his answer,” according to the article.  He was the first boy who didn’t try to improve her social skills or probe endlessly into her innermost feelings which, as they are for so many people on the autism spectrum, are all but completely inexpressible for her.  “It’s like the blue screen of death,” she tried to explain to a former boyfriend. “There are no words there.”

So Jack bites his lip, not being sure how to arrange his face to show his emotions.  And Kirsten cracks her knuckles in public, a substitute for the hand-flapping that comforts her when alone.  No problem at all. Kirsten “knew only that she felt as if she had found her soulmate” when she met Jack.  As Kirsten explained to a recent forum for special needs teenagers, “Parents always ask, ‘Who would like to marry my kid? They’re so weird.’ But, like, another weird person, that’s who.”

Or the story of Edwin and Noemi, who met as children in a hospital where they were both having surgery related to their cerebral palsy then ended up at the same school together. Two decades later they eloped in their wheelchairs against the wishes of both families. Noemi’s health deteriorated, and Edwin took care of her. “Any woman would like to have a man like Edwin,” according to the family’s social worker. “He always made sure her lips were wet, that her hands were clean, that she got a drink.”

Despite many challenges, they enjoyed life — racing against each other in their wheelchairs, going to the circus, watching wrestling matches on television. The doctor who cared for Noemi until she died last year noted that “Edwin is like a 10-year-old who tries to act like what he thinks a man should be. But he was doing it better than any man could.”

Where is the line here between normal and disabled, and why do we waste time working on what is clearly the wrong question?  We are all bundles of human potential, whether that potential be for learning, for work, or for love.  Jack and Kirsten face the same issues all couples face; only the details are different. Edwin and Noemi model what marriage can be in its purest form, a benchmark  of love despite the wheelchairs and adult diapers — or perhaps because of them.

Our very differences speak to what we all have in common, to our essence, and help every one of us understand what it means to be human. This is the power of diversity, that it throws the human condition into high relief, bringing a clarity we so urgently need as we face the complex challenges of the 21st Century.

Best wishes for a richly rewarding New Year.

Tom Everill is President & CEO of Northwest Center. Contact him at inside@nwcenter.org.

 

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