Voices from the Disability Community: Alice Wong

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Getting to Know You

1. Your name: Alice Wong

2. What’s your connection with disability?

I was born with spinal muscular atrophy, a neuromuscular disease that results in muscles weakening over time—each person’s progression is different.

3. Star Trek or Star Wars? 

While I have a strong affinity for Yoda and Boba Fett, I will say Star Trek.

4. If you could live in any other country for 2 years, where would you go?

I’ve been fascinated by Scandinavian countries ever since watching tv dramas such as ‘Forbrydelsen’ (The Killing), Borgen (The Castle) or Wallander so I would have to say Denmark or Sweden.  Not only are these countries socially progressive, I love the design aesthetic.

5. What dish would your bring to our community picnic potluck?

I make a decent sour cream coffee cake and frittata. I’ll bring both!

Now That We’ve Been Introduced…

1. What do you do:

I have two part-time jobs: Staff Research Associate at the UCSF Center for Personal Assistance Services and I serve as a Council member of the National Council on Disability. The Center for PAS is focuses on research in personal assistance programs such as Medicaid HCBS waivers and other personal care programs.  NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.

*2016 update: Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving.

Currently, she is the Founder and Project Coordinator for the Disability Visibility Project (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture.

2. How did you come to doing what you do? How has your career trajectory flowed?

As a kid, I loved writing and reading. I attended a small liberal arts college (EarlhamCollege) for as a first-year student and loved it. Unfortunately, I became ill and had to take a leave of absence. By the time I was ready to return next year, Medicaid cut my hours of home health care (in Indiana) that didn’t make it feasible for me to go to a private school (parents paying for tuition) and pay for my own personal care.

I decided to be pragmatic and went to a commuter school and lived at home while plotting my next big move.  I double majored in English and sociology and really learned a lot.  English was a means to improve my writing skills and a wonderful excuse to buy lots of novels.  Sociology appealed to me because as a young disabled person I had a lot of rage and frustration at the discrimination I experienced.

I learned about the sociology of disability and the social model of disability—sociology really opened my understanding of my everyday experiences by placing it within a larger social context.  Long story short, I went to UCSF for grad school because of their program in medical sociology and fell into research which I love. I’ve been really lucky to work at UCSF as a grad student and continue as a staff member after school.

3. Where would you like to see yourself in 5 years?

I want to see myself still relatively healthy with enough energy to do all the things I want to do!  I felt a real shift in my energy five years ago that caused me to slow down and make some tough choices.  I say no to a lot of things and that’s cool with me now. I’m also more cautious but I think that’s just me being smart with what I’ve got.

4. Not to be morbid, but what do you want people to remember about you when you’ve gone?

Hmmm, I guess to remember that it’s cool to be picky and geeky about stuff.  My parents and sisters like to call me a picky cat which wear like a badge of honor.  To remember I was a good friend and enjoyed every moment of life.

5. Who or what inspires you?

In addition to family and friends, I’d say nature inspires me.

About Disability

1. If you could say something to yourself in the past – that is, the you that was really struggling with something related to disability – what would you say?

This is an excerpt from an essay I wrote in a special issue on disability in Amerasia Journal titled, “First-Person Political:  Musings from an Angry Asian American Disabled Girl”:

I know you’re tired and there are times when life sucks a lot.  You may not believe it, but when you grow up you’re going to have so much fun and do many exciting things.  The world is going to open up for you.

Laws like the Americans with Disabilities Act and programs such as Medicaid personal care services are going to help you live your life the way you want.  Most importantly, you will be in control and will have numerous choices.

You are going to live the greatest city in the world, San Francisco, and become a coffee fiend.  You are going to become a notorious night owl.  Just hang in there, keep reading and stay angry.

3. What do you like about your particular disability?

It sounds cheesy, but my disability gives me a great perspective on social behavior from a ‘outsider’ or marginalized position.  For example, being left out of activities at school, hearing stupid comments from adults, interacting with doctors at an early age, all of these experiences taught me a lot about how social meanings change from group to group and over time—that good and bad things can happen to anyone.

4. Any one thing that you wish people would *get* about disability?

Disability is just a natural part of human variation—people shouldn’t be afraid of it even though it might represent frailty or death to some.  Disability should be embraced as something that makes our society more diverse and rich.

5. What single piece of technology makes your life easier?

I live because of a Bi-Pap machine that helps me breathe. I live because of an electric wheelchair that gives me independence.  Other than those 2 devices, without a doubt my MacBook Pro and high-speed Internet make my life infinitely easier and better.

You can follow Alice on twitter: @SFdirewolf

and: The Disability Visibility Project

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Originally published in 2013

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