The Influence of Disability Within My World

Although I’ve had a disability since I was 4 years old (that we know of anyway), I was mainstreamed at all times. In my family, “disability” was something reserved for people who used wheelchairs. The answer to any disability-related issue I may have had growing up was invariably:

  • try a little harder
  • God only gives you what you can handle
  • suffering is good! “with fire we test the gold!”

Saying I tried to “pass” and fit in among the non-deaf, non-disabled is like saying the Pope is Catholic. Yeah, well, duh. I bent over backwards and twisted myself into loops to try and pass! I happily applied  hairspray into a firm helmet of lacquer to keep my hair from flying back and revealing my dastardly, huge medically-unsexy-looking hearing aids. HEARING AIDS! Who wears the suckers when they are FIFTEEN YEARS OLD?! Who has their perfectly-hearing grandparents cutting out coupons for hearing-ware for them?!

The only people who were lower than me on the totem of uncool were people with developmental disabilities. I wouldn’t come within 10 feet of  someone with a developmental disability. It’s the curse of those of us that desperately want to be “normal” in that sometimes we can be the most cruel. Or sometimes we want so badly to fit in that we shun anyone that might might expose us to be who we actually are: different.

****

After I started working at UC Berkeley and met fierce people within the community who had a disability, I started to realize that my fear of being labeled “deaf” or “disabled” had a lot to do with this perception that I had of “disability” and “deaf” equating helplessness, incapability – and perhaps even stupidity. Uncool, for sure, uncool.

Meeting people that I found inexpressibly hip, savvy, adept – who had a disability – was huge for me. I met tens, hundreds of people at UC Berkeley and in the San Francisco Bay Area that I oozed respect for. Capable, smart, funny people. People who did something with their lives, people who were often good looking, well dressed. Disabled.

Liane Yasumoto’s Superfest pushed me farther by exposing me to people with disabilities high on the artistry level. Producing movies and art that I deeply appreciated.

Sue Schweik’s Disability Studies course, my mentor Sarah Dunham and her book recommendations – the reading that I did – the Oral History Project – all of these pieces swirled for me before laying into a new and complete picture of disability that looked nothing like what I once thought it to be. This new look – the new picture – was full of opportunity. It had pride. Beauty. Humour and grace.

Was not, is not about sorry, sad and tired cliches.

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But then. I was told my daughter would be coming with Down syndrome – a developmental disability!

My world crumbled, yes, and all the self-acceptance, pride, and love for disability was stripped clean off me, reverting me to my terribly insecure 15 year old self. Every injustice, every hurt, every wrong I’d ever suffered in my life came back and reverberated in my soul, in my marrow for the remaining 6 months of my pregnancy.

I was that kid they hit because she was scar faced and deaf; my daughter would know that pain. I was that girl scorned because she was different; my daughter would know that feeling. I was the girl who hurt so bad she’d get nosebleeds from crying because she didn’t, couldn’t fit in; my daughter would know that feeling.

People talk a lot about ‘right to life’ in the Down syndrome community. It’s not that I don’t believe in a right to life; it’s that I have walked the walk of disability, you see. I know first hand how hard it can be. To choose to keep my daughter, while knowing full well how difficult her life might be was without question the most agonizing decision of my life. Like all parents, I wanted to know that I was doing everything that I could to give my child a life better than what I had, and I wasn’t sure I was doing that by letting her live.

Ultimately, what saved us all was coming to an understanding that her life is hers. It is not mine. As Gibran says:

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow…

Moxie has a disability; how her life unfolds will be different from mine. Different by virtue of the fact that we are different people, different because I have walked this path and am more aware than my mother could ever have been with me. Different because she’s Moxie – and she has it, too.

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For the post on my experience with Down syndrome before Moxie came: Down syndrome Angels?! HELL’S Angels!

Full text from Kahlil Gibran’s ‘On Children’

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

 

Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
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@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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10 Comments

  • You are making me cry. Not totally sure why. I think, in part, because I knew you best when you were trying to pass and somehow I feel complicit in that. And I cannot shake, no matter how much I read about what you have been through because of your disabilities, that you are Meriah to me. Not different. Not less than. Just that amazing Meriah in my life. And it’s like i missed out on this whole enormous part of you somehow. That makes me sad but at least I can see her, hear her grow virtually.

    Also the Gibran quote, goodness. That kicked me the gut.

  • This post is so honest, so real. It makes me think about how I interact with and understand my daughter. Thank you for sharing. *heart touch*

  • loved this Meriah. I know this was a hard one for you, but your honesty gave this topic life. Loved that poem as well, never heard it before

  • I think I was saved (a bit) from the hierarchies of disability because I went to a disabled kids summer camp started by a disabled man who was also a special education administrator. So all kinds of kids came to the camp. I was there with polio but I also met kids with Down Syndrome, cerebral palsy, deaf kids, blind kids, etc.

    So even though I was mainstreamed (well really thrown into the deep end of the pool with no help), and I learned that having polio was better than being mentally disabled, my experiences at camp really put a face on those hierarchies so I didn’t believe them too much.

    As for parenting a disabled child, the challenge for me is not only that my daughter has a physical disability, like me, but that she is also very dyslexic. The combination of the two disabilities makes her much more severely disabled than I was. And in our culture, that means significantly fewer options.

    That’s been the hardest part for me. Not that she will face discrimination, but that throughout her life she will have to deal with many more obstacles than I ever had to face. And often I feel very unprepared to help her with that. LIke I am going through life at the “easy” setting in the discrimination game and she is forced to play at the “hardest” setting.

  • Oh Meriah – what a heart wrenching, honest post, I am really proud of you and how positive you have remained.

    My best wishes for you and your beautiful family.

  • I have found your beautiful blog via Love that Max… I sit here today almost in tears as I read your post… Please know they are not tears of sorrow or pity for you and your beautiful daughter but tears of empathy. My own daughter, Alexis who is now 16 has lived a life with special needs as well. Her pain and sorrows have touched me to my core… when Alexis was 6 weeks old, she basically died 3 times and was brought back… diagnosed with a rare genetic syndrome later, we would know that she would be intellectually disabled from the syndrome and from lack of O2… many of your feelings have been mine… knowing that my duaghter would suffer from the cruelty of society.
    Another ‘God sent’ gift from finding your blog will be knowing that your are hearing impaired… Alexis has just been fitted and will receive her hearing aids in 2 weeks… this has been a very trying time for all of us as she is devistated over this new finding… she does not want them, she does not want to hear that they will help her, all she can think of and is consumed by is that she is yet again ‘different’ from the others in another visible way!
    I will be following your blog now via G+ and FB!
    Thanks for sharing your hearfelt thoughts and feelings with our family!
    Thanks so much for your insights…

    • Thank you, thank you, thank you for your kind words! Thank you.

      Oh boy… I so well remember getting fitted for hearing aids – the HUGE ones – when I was around your daughter’s age. I fought them long and hard for around 10 years. I feel for her… does she sign?

      xo meriah

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