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Nothing About Us Without Us. Ever.

STORYCENTER Blog

We are pleased to present posts by StoryCenter staff, storytellers, colleagues from partnering organizations, and thought leaders in Storywork and related fields.

Nothing About Us Without Us. Ever.

Amy Hill

By Dawn Howard

Editor’s Note: Dawn participated in our digital storytelling workshop sponsored by Colorado’s Tri-County Health Department and the Colorado Trust, in the fall of 2015. We share this piece as part of our continuing Social Justice Blog Series, to underscore the need to retain Medicaid’s current level of funding for people with disabilities so they can live safely and independently.

I thought I knew my own story well. For 30 years or more, I’d shared with elementary school students what it was like to live with cerebral palsy. But as I worked on my story in the digital storytelling workshop, I traveled back in my mind to first grade and was flooded with fresh, and sometimes harsh, memories from those days. I remembered trying to prove my abilities to my teacher and to the other kids, time after time, only to find my perceived value made clear when I was christened the “silent angel” in the Christmas pageant.

Image from Dawn's digital story

Image from Dawn's digital story

This past January, I joined my friends from Colorado ADAPT in an attempt to discuss cuts in Medicaid with Republican Senator Cory Gardner. Before the day was over, I found myself under arrest. We’d refused to leave unless we were allowed to talk with the senator’s aides.

ADAPT (first used as an acronym for Americans Disabled for Accessible Public Transit) is a grassroots organization that started in Denver in 1978. ADAPT promotes the use of nonviolent civil disobedience to effect social justice for individuals with significant disabilities. The group originally worked to make public transportation accessible to people across the United States who used wheelchairs.

For over a decade, we have fought to end the institutional bias in Medicaid regulations. While it is considered a “right” for disabled people to live in nursing homes, it remains optional for states to pay attendants to work with people who want to live in community and stay in their own homes. Last month, I joined over one hundred individuals from ADAPT chapters across the country in Washington, D.C., as we attempted to draw attention to this issue. This time, over eighty of us were arrested.

Currently, my friends in Colorado are able to choose who helps them shower, dress, and get into their wheelchairs. Medicaid pays for my friends with intellectual disabilities or mental illness to live where they choose, with the support they need to shop, be with friends, dine out, go to parks, attend concerts, and visit museums.

Colorado’s Medicaid Buy-In provides healthcare to 6,000 working, tax-paying adults. If the American Health Care Act is passed, the state’s Medicaid program will lose $340 million in the first year, and my friends and neighbors may be forced to move away from the communities they’ve built and into nursing homes, in order to receive the support they need.

I won’t settle for being the “silent angel” anymore. I don’t have to prove my value. I know who I am, and I’ll do whatever it takes to make my voice heard in the fight for the rights of ALL people.

Get involved in efforts to advocate against the passage of the American Health Care Act, and watch Dawn's story here: