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Disability: My (Deaf) Connection

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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.

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Meriah
Meriah Nichols is a career counselor, teacher and blogger. Single mom to 3 (one with Down syndrome, one gifted 2E), she is also a Trekkie who likes her coffee hot and black.
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4 Comments

  1. Wow. Beautiful post, beautiful words, Meriah. Your perspective is unique, and it’s fascinating to learn how you eventually connected with the disability community.

  2. Fantastic post! I can completely understand your situation, being partially deaf (born with 80% loss, wear two hearing aids). I was raised in an entirely hearing environment, went to normal schools, have a college degree. Although I’m nearly 63 I feel much younger, most likely due to the fact that I refuse to allow the worse of life to get to me; I’m naturally optimistic. As it goes, nothing stopped me from marrying my French pen pal and living in France (38 years for both), in spite of others considering it all a big mistake (cultural problems, etc.). The biggest battle was the French perfectionist mentality (they are notorious for categorizing) and proving that it’s possible for a person like me to survive in “their” society without having to depend upon sign language (which I never learned). Everything I know about French culture and language I learned on my own. Of course with time things have become a lot easier for those with hearing disabilities than when I first came to France (1974). The latest technologies in computers, cell phones and all the rest are available for everyone. After 38 years of love, happiness, sadness, joys, children (four: two girls ages 33 and 29 and twins girl and boy aged 24) and grandchildren (a two year old grandson) and now retirement (no job, but a small retirement pension) I’ve never been happier in my life and never regretted leaving the US (Chicago). My oldest daughter lives in New Zealand with her partner and youngest daughter lives in Spain. Yes, the culture shock of life in France was strong, very strong, but it shows how little Americans really know or understand what life is like on this side of the Atlantic. Assumption of life in other places isn’t reality; it’s living a life of illusions. Once I became totally immersed in life in France it gradually developed into a profound love affair.
    Wishing you all the best,
    Joanne

  3. I’m really enjoying getting to know you Meriah! Love your spunk…. and your perspective.

  4. As always, LOVE! You offer e such wonderful perspective. I’d love to print this on my living room wall.

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