Growing up as a kid with a disability, I felt both the stigma society places on people with disabilities, and the importance of connecting with people to make change.
I had “friends,” which I later learned often meant kids the teacher asked to talk to me. Add society stigma and misunderstanding about disabilities, along with meanness of kids at that age, and you have a pretty lonely, isolated childhood. Adults who weren’t directly taking care of me were either afraid of me, or walking on eggshells trying to say the right thing. I remember people praising me lavishly about being brave, and an inspiration. Although flattered at the time, I look back at this and often ask why.
As for services, most did not exist, and those that did were impossible to find. This was long before the days of e-mail or the internet. We had the Yellow Pages. You had to know someone who knew something. Families like mine who had complex medical issues from birth were on their own figuring out how to pay for the gargantuan medical bills.
My parents served on the first Governor’s Council on Developmental Disabilities. The group analyzes state policy for people with disability, makes recommendations to the governor, and provides research grants to improve the lives of people with disabilities. This was a novel concept at the time, and provided a feeling of community to people who were going through similar struggles. I remember we worked with the United Way to make short movies about our story. It was my first early experience of turning what could be shameful into a force for good. We were telling our story, making people aware of what people with disabilities want, and what their families hope for them.
In my school days, I was very much a loner. I was made to feel I was different and inherently wrong because of my disability. Teachers, students, and “friends” all instilled in me that feeling of otherness. When people did talk to me, they pretended as if my disability didn’t exist. I was much older before I realized how shaming an experience it was to either be pitied, or contorted into something I wasn’t.
Times today have improved drastically for people with disabilities. Because of the Affordable Care Act (ACA) and Medicaid expansion, more people with disabilities are more able to determine their own fate. This isn’t because they are totally independent.
This is because more people today recognize that people with disabilities want the same things they do: they want a chance to contribute to society and live in joy.
Medicaid funding for states means that people with disabilities have more options for living in an apartment or another residence inside a community. The narrative of forcing people with disabilities to live within other peoples’ charity, such as institutions or with their family, has begun to change.
With the election of Donald Trump, and the rise in right-wing politics, the progress we’ve made is under attack. We are going backwards. Proposed cuts to Medicaid will have drastic repercussions for people with disabilities, and our lowest income neighbors. The conservative movement has long held the belief that if you cannot afford health care it’s because you didn’t work “hard enough” for it, and as such, your health isn’t a priority. Instead, it’s a burden that can only really be dealt with by charity.
Congress is making its best effort to repeal the Affordable Care Act and end Medicaid as we know it for a simple reason: the GOP has marching orders to cut taxes.
Their health care plans, which Representatives Emmer, Lewis, and Paulsen voted for, slash Medicaid in order to pay for tax cuts for the wealthy and corporations. In doing so, the GOP is scaling back the progress we’ve made toward dignity for people with disabilities. They are testing our values as Americans. As I watch the Senate continue its health care debate, I can only wonder: What kind of country are we? Is this who we want to be?
As progressives, we understand that we all do better when we work together. We don’t believe in the politics of division, and we don’t believe in throwing away the most vulnerable among us. Paul Ryan recently said individuals who cannot afford health care should rely on charity. Charity itself isn’t bad, but forcing people to see their basic health care as charity, to me, is an enhanced version of telling people they should talk to people with disabilities. You know and I know that we deserve better than to be someone’s charity case.
No matter where we live, what we look like, or who we are, we deserve to live fully. I want a Minnesota where people with and without disabilities can live in joy and dignity. Where no one is pitied for needing help. We are human beings, after all.
We are fighting the repeal of the Affordable Care Act every step of the way. It’s up to all of us to do the people’s work: to hold our elected officials accountable. Representatives Emmer, Lewis, and Paulsen are working on behalf of corporations, instead of carrying out the will of the people. You can help immediately. Contribute right now to support the hard-hitting political work we need, and the vision for the future we share.
For months, the Senate did not have enough support to pass the ACA repeal. This week, they resolved to move forward. Senators are currently debating “skinny repeal”—despite fierce public opposition. Once the Senate passes a version, they’ll send it to the House. With two different bills in front of them, the Senate and House will have to negotiate a final version. It will be sent back to the House and Senate, and sent to the President for his signature after it passes. Bottom line: we still have time to stop this.
Contribute to TakeAction Minnesota TODAY to help us protect health care and hold elected officials accountable. Time is running out before the Senate votes.
Let’s make it clear, we all need health care, and we all deserve better than to be treated as a charity case.