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Changing the World for People With Disabilities

I learned a long time ago to plan for the best but also to be a realist and prepare for the worst. The health challenges I’ve had since early in my life have shown me that since we cannot control everything, it is all the more important to live as much as possible when you can. When help and care have come from unexpected places, it has illuminated the goodness in other people.

Living Life Quickly

Susan Mazrui_Sharon Mazrui
My sister Sharon and me, 1965

My life took a serious turn when I was diagnosed with Multiple Sclerosis as a teen.  Gradually, I lost my vision and had difficulty walking.  Overhearing a conversation among staff, I heard that I could expect to live two to twenty years.  At that time, I took it very literally and thought I had, at best, two more years to live. It made me want to live as much as possible with whatever time I had.

Prior to the Americans with Disabilities Act, there were few laws protecting the rights of people with disabilities. My parents advocated for me but were limited in what they could do. There were classes I couldn’t get to because I couldn’t walk up the stairs, so I just didn’t go. Eventually, I dropped out of high school because I’d missed a lot of school.

When I spoke to my father about my situation, he’d say “at least nobody is shooting at you!” My parents weren’t un-sympathetic but were more focused on problem-solving. They had been through challenges in their lives and wanted their children to be survivors.

My daughter Sarah and me, 1987

Life took on a great sense of urgency because I thought I didn’t have much of it left ahead of me.   Earning a GED, I started college at 16, married way too early, and had a daughter at a young age. As a result, now I have a wonderful grown daughter and a wonderful grandson.  Eventually, I remarried and have a 14-year-old daughter, Nicole.

It was difficult to have a serious illness as a teenager: high school friends couldn’t really understand me. At college, people were older: I didn’t make a lot of friends, but it gave me the transition time to learn skills that I needed as a person who couldn’t see.  Graduating early, I became a teacher but could not get a job because blind people weren’t a protected class yet. I eventually taught Special Education and Computer Training programs at San Francisco State University.

A Career Born of Challenges

I had been asked to participate in an advisory committee addressing how to make products and services more accessible for people with disabilities.  My unique experiences, and participation on the advisory board, let to being recruited by Pacific Telesis. While I missed working with students, this was a great move; it took me out of the classroom where exposure to child-related illnesses wasn’t good for an immune system compromised by MS. 

Survivor Sake Dragon Boat Team, at Colorado Springs, International Dragon Boat

My work was very meaningful; I realized if technology weren’t made accessible from the start, people with disabilities would always fall behind and be at risk to lose their jobs. I’m not a great technology person, and one of the professors said, “I love working with you because you don’t know anything.” But what I did know was some of the challenges people would have so engineers could address them in product design. While the focus of my work was to make technology more accessible for people with disabilities, it was also a nice tie-in with my passion for equity.

The work has paid off and the laws have changed: information communication technology must be accessible from the design phase. Things aren’t perfect but there’s more accessibility embedded in products. My Smartphone has a built-in screen reader, a flashlight, and a mode where the phone vibrates instead of ringing.

All these features were designed for people with disabilities but are now used by everyone. People at a bar watch TV with captions. We wanted every phone to be accessible, not just one model. People were saying, “well you don’t need the Mickey Mouse phone to be hearing aid compatible?” but yes, we do, because a kid or a young adult might say “yes I have hearing aids but it’s important to me to be able to do what my peers are doing, I don’t want to be the only kid who has an ugly black office phone when everyone else has these cool phones.”

Tomiyo Palmer, 1958

Currently, at AT&T, I work on public policy issues related mainly to disabilities, but I’ve also had opportunities to work on other social justice issues. Again, my personal experience enhances my work. I’ve had the good fortune to have been raised in a multi-cultural family; my mother is Japanese, and my father is Irish. I look white for the most part but was raised by someone from another country who learned English as a second language and came from a completely different culture. My family includes people who have been adopted, have different colors, and come from different cultures. This has provided me with a wide range of experiences and exposed me to many different perspectives.

Because I look white, I hear things people wouldn’t have said to a non-white person. Being of mixed race, I’ve been able to experience what it’s like to be an outsider. I have a foot in one world and one in another but never fully in either. My husband is also biracial, half Kenyan and half English. So, when I hear about someone who is falsely convicted or faced brutality because he is Black, it is personal. It tears me apart — and it fuels my desire to work on Social Justice issues.

I was dealt a challenging hand in terms of health but my experiences have also helped me develop a passion to change the world — not just for people with disabilities but for everyone.

You may also like:

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The Bergdorf Goodman Guide to Animal Welfare

Turning Obstacles into Opportunities!

Born a Village Girl — Became a Global Social Entrepreneur

 

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2 Responses

  1. Susan! I would never have pried into your life story, but how grateful I am that you have shared it. The hardships and challenges we face shape us in so many ways. I’ve known your optimism, determination, joie de vivre, and empathy for many years and now I have a bit of insight into how those qualities were forged. May your story inspire others to set their sights high and never give up.

  2. Thank you Susan. As you know I work with people with disabilities. I try to advocate for them as much as I can in the atmosphere I work in. It is not a big policy sphere but in a world they live in. There are something that I have observed and experienced with regards to structural racism and racism as a whole that hurts me to the core! Thank you for your insights and l look forward to reading more.

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