The Power of a Story: "My Medicaid, My Life" by Alice Wong

Last summer, people of compassion across the country were fighting to prevent the United States Congress from repealing the ACA and slashing Medicaid funding by billions of dollars. And we won. 

An important part of the strategy that gave us that victory was sharing the stories of people on Medicaid with the media and with Members of Congress. 

Below you can go to an excerpt from the beginning of a piece that appeared in the New York Times on May 3, 2017. Alice Wong tells her story of how Medicaid has changed her life.  Please read the full piece by Alice and send copies to others.

There is no question that Alice is a powerful advocate for people with disabilities.

But anyone who shares their story can share that power and make a difference.

Go to Share Your Story and we will contact you.  You control your story - we will talk to you about if and how you might want to share your story and help protect Medicaid.

Below is an excerpt from the beginning of a piece that appeared in the New York Times on May 3, 2017. Alice Wong tells her story of how Medicaid has changed her life.  Please read the full piece by Alice and send copies to others

"I am a Medicaid welfare queen. When Republicans talk about safety net programs like Medicaid, Social Security and food stamps, they evoke images of people like me gabbing on their smartphones, eating steak and watching TV from the comfort of home. Political rhetoric and media coverage paints us as unmotivated and undeserving individuals, passive consumers of taxpayer dollars who are out to “game the system,” taking resources away from hard-working people.

"The reality of being a disabled person on Medicaid is far more complex and nuanced. Many people do not even know the difference between Medicaid and Medicare and simply consider them “entitlement programs,” as if tax breaks and corporate subsidies aren’t entitlements by another name. Medicaid is more than a health care program. It is a life-giving program.

"Like the thousands of people sharing their stories at town halls about how the Affordable Care Act saved their lives, I am sharing my Medicaid story to illustrate its value and the potential consequences of “reform.”

"I am an Asian-American woman with a disability and a daughter of immigrants. When I turned 18, my dad told me that I needed to make an appointment at the county office and apply for Medicaid. Living in an affluent suburb of Indianapolis, I was indignant. Medicaid was for “those people,” the “indigent.” I learned that my parents paid exorbitant monthly premiums for my health care. Only one company in our state would cover me because of my pre-existing condition (spinal muscular atrophy, a congenital motor neuron disease). I had no idea of the financial pressure placed on our family for basic health insurance because of my disability.

"I graduated from high school in 1992, two years after the Americans With Disabilities Act was passed. Learning about disability history and realizing I was a member of a protected class encouraged me to imagine and create the life that I want. Once I got over myself and realized I had a right to Medicaid, it made a difference immediately.

"I began to receive several hours a week of services to help me with personal care. When I went away to college I was able to hire attendants and live independently for the first time. It was an exhilarating taste of freedom that showed me a glimpse of what was possible. Before Medicaid, my family members, including my siblings, provided all of my care, including bathing, dressing and toileting. Now I had choices and the basic human right of self-determination.

"Unfortunately, Indiana made cuts to Medicaid the following year that resulted in fewer hours of services. Our family couldn’t manage both tuition and private pay for personal care, so I made the heartbreaking decision to leave the school I loved and move back home...."

West Virginians Together for Medicaid