Sunday, June 2, 2013

Being Denied of Personal-Pride Stinks

For crying out loud

One of the hazards of writing this column in the middle of the night is that even when virtually the entire city is asleep, seismic events can occur that derail my intensely focused thought process. In this instance, my 14-month-old daughter was to blame, bless her wailing heart. She was helpless and in trouble. Mommy was sleeping; daddy was not, so the decision was simple: get in there, quick.
Her high pitched distress call was legitimate. It wasn’t a nightmare, just a diaper full of poop. Well, no nightmare for her at any rate. Not for me either, as it turns out. See, I have a condition that impairs one of my five senses. I can’t smell a dang thing. Been this way for 15 years or more. Do I consider myself disabled? Good question. I’ve been pondering that a while now. Not because I wondered if I’d qualify for some kind of support but for a more important reason.
The answer is no, I don’t consider myself disabled. Why? Initially because I feel like my disability, not being able to smell, is a minor thing compared to other conditions more commonly associated with the term – like being blind. Or deaf. Or paraplegic, Or affected by some other physical or mental condition I consider more serious. By comparison, mine borders on insignificant. There’s a problem with that way of thinking I fear, but let’s set it aside for a moment.
Pop quiz
After undergoing some education and enlightening self-work on issues related to persons with disabilities, I’ve come to consider myself an ally. They may not think so since my awareness and knowledge only scratches the surface of an issue that runs deep as it is complex. Still, I advocate for them publicly when I can but more importantly I continue to do my own inner work to broaden my personal understanding of what it means to be disabled in a largely non-disabled world.
Do I still say or do the wrong thing sometimes? Guilty as charged. I continue to have my share of misfires, particularly around language and what the preferred terms are for folks with various conditions. In fact, there may even be hell to pay for some of the words and phrases I’m using here. That’s okay. By ‘okay’ I mean if I get corrected, I’ll consider it a gift. It’s one I’ll readily accept because the correction I receive helps me learn more concerning disability issues. For instance, the concept known as Disability Pride.
I first heard the phrase a few months ago. It was artfully defined and referenced by an Allies for Change facilitator named Melinda Haus-Johnson during a group session centered on disability issues. Afterword, I uncovered a more formal definition, one espoused by disability rights activist, writer, and speaker Sarah Triano for the Encyclopedia of Disability (Sage Publications):
Popular vocations disabled persons excel at
“Disability Pride represents a rejection of the notion that our physical, sensory, mental, and cognitive differences from the non-disabled standard are wrong or bad in any way, and is a statement of our self-acceptance, dignity and pride.” There’s far more to the definition. Part of it goes on to state, “…that our disabilities are a natural part of human diversity, a celebration of our heritage and culture, and a validation of our experience.”
If all this feels a little militant and counter to your way of thinking, it’s probably because you’re non-disabled. Despite the light-heartedness that started this conversation, disability rights are a serious matter. So is honoring and giving those with disabilities nothing less than the complete respect they deserve as human beings.
Oh and regarding baby? She's sleeping again and I'm smelling sweet with the scent of peace and quiet.

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