Disability: My Connection

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this post was originally published on May 30, 2012 – it has been re-written and re-published as a part of the “Challenge!” Summer Blogging Series – open to all.

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My Connection with Disability:

I was not born with a disability. I am one of the many of us that acquired my disabilities and joined the club of Disability after birth.

I went through the windshield of a car when I was 4 years old. This gave me Traumatic Brain Injury, an auditory processing disorder and most likely kick started my deafness (but we are not really sure). My PTSD was acquired later, as was the depression.

Even though I grew up with multiple disabilities, I had absolutely no connection with disability. For my family, people who were regarded as having “real” disabilities were invariably people who use wheelchairs. And since I didn’t use a wheelchair, I was just a misfit screw-up who needed to try harder, apologize more.

It’s worth mentioning here that my race was of paramount importance – you see, I was growing up in countries in which I was the minority. No one else around me was white. My whiteness was what was noticed first, commented on, teased, discriminated against. The fact that I am deaf or that I’d fall asleep in class if the fluorescent lights were used was a blip on the screen compared to my whiteness.

My disabilities hit me when I would return to the United States. I’d walk through customs and suddenly, my skin colour would fade and BAM! My deafness, my TBI and all the rest of it would return.

I wanted that about as much as I’d want to walk on a nail – and I did everything in my power to “fit in” and be like everyone else as I saw them in Mainstream, USA. I wanted the gloss, sparkle, I strived to be uber-thin, got the bleach blonde hair, worked on my tan. I took my anger, hurt, pain and frustration and bottled it all up.

Every. Single. Ounce.

I turned on myself – I was a cutter – I felt so much internal pain and anger, directed every bit of it on hurting myself in any way I could. I would cut myself with small knives, scrape my flesh off even with my fingernails. I was an anorexic/bulimic for years as well as an alcoholic, chain smoking Tokyo party animal who would take any drug offered. And I do mean any drug.

And I was so good at faking it. I remember in particular one night I had stayed up late, drinking and crying and scraping myself and struggling with the overwhelming desire to just die. I went to work the next day and a coworker of mine said, “Meriah, I just love your smile – you always seem to be so happy! You are the happiest person I know!”

Well.

It’s impossible to get help when everything is so carefully and tightly tucked away and compartmentalized.When you know you need help but since you think it’s all your fault, feel like you don’t deserve it and can’t ask and the little bits that seep through the seams of an alcohol/drug laced blackout on a street in Roppongi drown in the cacophony of a chaotic life.

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I went through a lot of careers. My brother and I have been working hard since we were 11 or 12, and nearly completely self-supporting since we were 15. I’ve worked just about every job imaginable, and worked hard, worked well and worked successfully, despite being deaf and konking out from TBI. I graduated from college at 19 – trained as an Elementary School teacher and I taught for a while. Then I went to graduate school when I was 24, was out and working again in curriculum developer, teacher training, school management. I shifted slighted from there to corporate training. I taught a lot of English in Asia.

When I returned to the United States at 29, I had a very difficult time finding a job. Part of that was the market at that time, but a huge part of that was my deafness which as always, became an issue upon re-entry. Through sheer dint of having a hard time myself finding a job, I ended up in the “disability industry”, starting and managing a program for students and graduates of UC Berkeley with disabilities.

It was UC Berkeley that changed my life.

Because you see, UC Berkeley is the home of the Disability Rights Movement. It’s where The Greats like Ed Roberts and Judy Heumann fought and won; it’s close to the San Francisco City Hall, where the historic 504 Sit In was held. “Disability” in Berkeley isn’t about pity, weakness, disenfranchisement, powerlessness: “disability” in Berkeley is about pride! It’s about claiming our identity, our culture, our tribe!

Bit by bit, day by day, I felt my resistance to connecting with ‘disability’ slipping. I met more and more people, representing every type of disability one can think of. Activists, other professionals like me with disabilities. Highly capable, intelligent people who have a disability.

The relief in connecting, in finally identifying with a group that made sense to me, that were among my own, was strong. My tears that came when I heard “Nothing About Us Without Us” for the first time were heavy, full of that pent up emotion of desperately trying to “fit”, realizing I couldn’t, and then angry at having felt the need to do so at all. Tears from the frustration at having people without anything “wrong” with them telling me what to do, what I needed. Or what other people with disabilities needed. Like a group of whites deciding what was best for blacks before the Civil Rights Movement.

I starting to “come out” as a person with a disability when I was there, but I fully and emphatically crossed over after I had Moxie.

And now…

Disability is a part of me – as a physical and cultural part of my life as a person. It defines me, it is who I am, it a point of pride with me – #deafpride ! This is my tribe, this is my culture, and this transcends all else.

Like a prism reflecting rainbows by the light captured within, disability is a way of seeing the world and experiencing it from a unique and particular vantage point.  – one that has taught me well and early the value and strength of the spirit and the transient nature of the flesh.

“You don’t have a soul. You are a soul. You have a body.”
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