The Dignity in Disability

by Vivian Wong, ’12

“I learned that good always invariably triumphs over evil; that having brains is often better than having brawn; and that underdogs in all situations of life need to have unlimited patience, resiliency, stubbornness and unshakable hope in order to triumph in the end.” – Mark Mathabane, Kaffir Boy

Unlimited patience.
Unshakable hope.

Each of these words alone holds no grand importance, but strung together in such a delicate order, they are the flags I proudly wave. This is the creed of Mark Mathabane, author of Kaffir Boy, a firsthand account of apartheid in South Africa. Understatedly, apartheid is a serious tragedy, and for me – a Rapunzel recently toppled from her ivory tower – to say I identify with the underdog … well, I mean no disrespect. I share my thoughts not to play oppression Olympics or to flash some badge of courage. I’m sharing, because the alternative is silence – and now is not the time for that.

I am a young, disabled woman. It’s taken years for me to sit comfortably with that identity (in fact, years of literally sitting uncomfortably prompted a back spasm sophomore year, oops). My disability translates to a forward-curving spine, a truncated torso, and limited neck rotation. I am a petite 4’2’’ and I have never hit my head entering a doorway. I’ve spent countless days with nameless doctors, poking at me and scanning my body as if it were an equation to solve, a problem to fix. It is easiest to regard disability as a medical condition, like a disease you contract and must learn to overcome. I don’t mean to vilify the medical community for prizing “the healthy body.” Indeed, health should be valued. But when you start viewing persons as patients, or walking problems to cure, you strip them of their dignity.

My disability is physical. And thank you, my mental capacities are quite fine today (and yesterday and hopefully tomorrow). But can a disability stay merely external? Inside, I feel no different, though it’s hard to gauge not having felt any other way. What I mean to say is that I normally don’t feel powerless, functionally inhibited, or ugly and deformed – the unfortunate stereotypes of disability today that are perpetuated by insensitive doctors, images of disability in media, and a lack of scholarly research on disability studies.  Despite the significant progress in the last 20 years, the stigma still exists. I have been made to feel that disability is bad, pitiful and unloveable – but to believe that is to simplify such a complicated issue and to surrender to an unjust norm.

I feel disabled, only when I catch my reflection on a passing car or when asses surround my nose in crowded frat parties and public transportation – or, you know, when someone utters the word ‘midget’ at me and an electric current runs through my entire curved spine, which then ignites the coiled fuse of my intestines, sending fumes to my brain while my heart just breaks.

The word ‘midget’ alone holds no grand importance, but flung with a force of ignorance, dismissal, and just such distaste for what my physicality stands for – it becomes a weapon in a civil war between human and human.

Perhaps this reaction indicates shame of being disabled, as if my own veil of ignorance was violently torn off and my self-perceived flaws were exposed. Like, shit, they found out! Or, rather, they pointed it out and now I have to face it. Sure, it’s a bit of that. I am certainly not immune to the nagging of societal norms. For years, I silently convinced myself that I could separate my body and whatever exists within (soul? mind? leftover lamb?). I kept disability out, only letting it in when it was convenient like for reflective entries such as this. As I grow older, I’m finding it more difficult and less advantageous to segregate these parts of my identity. I feel incomplete and indignant when I hide behind this idea of “having” a disability instead of “being” disabled. My disability isn’t a credit card I can take out at strategic times to swipe and rack up points for suffering, nor is it something I can leave at home with my other worries while I hit the bars. The jig is up – I am disabled and, really, that’s okay.

It’s a work in progress. I’m learning to speak about my disability more freely, to be more honest about what I can or cannot do, and how I feel about those boundaries. I’m learning to trust in my friends, in their capacity to love all of me and accept the wholeness of my identity. (And to those friends, I love, love, love you.) I’m calling it: dignified vulnerability, the fifth element that every underdog (hell, every one of us) needs. We often bury our own self-perceived flaws under alternating layers of pride and insecurity, forgetting that those “flaws” are as worthy of appreciation as our other traits that are maybe more socially accepted. I invite you to challenge your friends and, more importantly, yourself to not be afraid of what’s under all those layers – or what may be completely evident like a physical disability. Perhaps we’ll all be a little less lonely if we stop shirking and start sharing our whole selves.

Vivian belongs to the Class of 2012, i.e. “she doesn’t even go here” anymore. But when she did, she studied International Relations and French, and founded Power to ACT: Abilities Coming Together, a student organization dedicated to creating safe spaces for students with hidden and visible disabilities.

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5 thoughts on “The Dignity in Disability

  1. […] The Dignity in Disability by Vivian Wong, ‘12 […]

  2. You are awesome! So thankful I have you in my life and get to call you my friend. I love you! (and also love the italics at the bottom, “she doesn’t even go here!” haha)

  3. Misa says:

    Viv – you are honestly one of the most brilliant people I met while at Stanford. This was a really inspiring piece and I’m so glad you shared it with me. And I hope you know that I’m always there for you (figuratively if not literally atm).

  4. Katie Rosman says:

    Viv, you are a role model and inspiration to so many, disabled and non-disabled alike. I love you.

  5. Paul Wong says:

    I am glad that you have developed into a young disabled person with great wisdom, courage and commitment to educate people around you (and beyond) how they can look into this important issue of disability. Looks like you will have a long way to go. I am giving you my blessings that you will have the heart, soul, and energy to continue on with this journey and wishing you all the successes in this endeavor.
    I love you.

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