Although I grew up with multiple disabilities (the primary, however, being deaf), I had absolutely no connection with disability. For my family, people with “real” disabilities were invariably people who use wheelchairs. People like me – who can “pass” but are very different – were just misfits that needed to try a little harder.
The main impediment in my life was my whiteness, my skin colour. As I am a third culture kid (a person raised in a culture other than their parent’s own), I was always in countries in which I was the minority. No one else around me was as white as me, not even my naturally-tanning brother. My whiteness was what was noticed first, commented on first, teased the most. I’d have fantasies of being re-born with brown skin almost every day. Brown skin, black hair and lovely brown eyes (like a female Mikey, maybe).
My relation with disability hit me when I would return to the United States, as well as before I left for Fiji. 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 still didn’t feel all that connected though. I knew I had disabilities, but I didn’t feel connected. It was more a sense of clearly seeing the things that were “wrong” with me and struggling to change them, trying with everything I had to “fit in” be like everyone else. Mainstream, USA. Gloss, sparkle, uber-blonde hair. Tanned. Thin.
Bottled up the pain, frustration, hurt and yes, even anger.
Painted the hurt, in my journal.
The world with it’s eyes.
The freedom that I wanted.
Through sheer dint of having a hard time myself finding a job, I ended up in the “disability industry”, managing a program for students and graduates of UC Berkeley with disabilities. 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 too, professional with disabilities. Highly capable, intelligent people who – like me – had something “wrong” with them.
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 connected with my heart and soul, early in my term at UC Berkeley. I connected with everything that I have.
Disability is a part of me – my life as my person. It’s a part of my life – as represented in my daughter (who has Down syndrome), my mother (who has fibromylagia). Like a prism reflecting rainbows by the light captured within, disability means nothing anymore about what is “wrong” with me or us or anyone who is a part of this minority group that anyone can join at any time. Rather, it is a way of seeing the world and experiencing it from a unique vantage point – one that has taught me well and early the value and strength of the spirit. The transient nature of the flesh. The scale of what is important, truly important in life.
It’s not blonde hair, being thin and the perfect tan, that’s for sure.