Why Disability Rights Activists Put Their Lives on the Line to Protest Trumpcare

Image via Getty.
Image via Getty.

There are a lot of people to thank for last week’s failure to pass the Obamacare replacement and repeal bill in the Senate, including the three Republican senators who broke with party lines to vote against the bill. But the role that activists played—particularly women and advocates for disability rights—cannot be overstated. For weeks, members of disability rights organization ADAPT have been literally putting their lives on the line, risking arrest and being dragged from their wheelchairs, to protest the draconian measure that threatens their lives as they know them.

On this week’s episode of Big Time Dicks, Jezebel features editor Kelly Stout and I talked to ADAPT’s Carrie Anne Lucas about her efforts protesting Trumpcare and what’s at stake for the disabled community if it comes to pass.


One of the scariest aspects of the healthcare repeal and replacement bill is that it slashes funding for Medicaid, the largest public funder of long-term care for Americans. “Most middle-class people end up on Medicaid at the end of the life if they need long-term care,” Lucas explained. “And most disabled people who need day-to-day assistance end up on Medicaid because it’s the only payer that will fund attendant care that allows us to get out of bed, that allows us to cook our meals—I mean, for me, my attendant helps me get out of bed, take a shower, get dressed, helps me with grooming, helps me with breakfast. And then I go to work. Without Medicaid, I could not work.”

In addition to protesting the healthcare repeal and replacement bill, ADAPT has been fighting Republican budget cut proposals and block-granting Medicaid, which would cap federal contributions and turn the program over to states. “With the budget, there’s discussions of great cuts. Block-granting is a disaster, because even though we are a small number of the enrollees on Medicaid, people who use long-term care services—we cost the most for services, so when they start cutting funds, our services get cut, which means we can’t remain in our homes,” she said.

If Medicaid funding shrinks, more and more people with intellectual and physical disabilities will be forced into state-funded institutions, where they lose the ability to work and live independently. Describing horrific instance of sexual and physical abuse, Lucas explained too that “so many people experience abuse and neglect” when sent to nursing homes and other institutions.

“When you start moving tens of thousands of people into institutions because of Medicaid block-granting, the situation will be much worse,” she said. “Medicaid is a pathway to live in the community.”

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Prachi Gupta is a senior reporter at Jezebel.



These people are American heroes

I work with people who have developmental disabilities and need varying degrees of help for pretty much all aspects of daily living. Everything from tying shoes to showering to toileting to transportation to preparing meals to dressing to brushing teeth to pretty much anything else you can think of, I’ve worked with people who need help and training in that area. Many of the people I know have limited abilities to communicate and advocate for themselves, but they are all awesome folks with distinct personalities and friendships, loved ones, likes and dislikes. Just like the rest of us. Most of the wonderful individuals I have met need 24 hour care and supervision for a lifetime to not only ensure their safety and well being but to maximize their independence and ability to contribute to their communities (and the economy for you cold hearted capitalists out there). They receive it from dedicated, underpaid and overworked staff, managers and administrators and virtually all of the funding for that, small as it is in the grand scheme, comes from Medicaid.

While Republicans have attempted to muddy the waters around the Medicaid cuts and their effect on the population I work with, virtually every single advocacy organization, medical expert, family group and service provider was in agreement that in the long term it was a threat to people with developmental disabilities.

Make no mistake, without robust Medicaid benefits to help manage their daily lives, incredible people I know would end up on the street, clog our psychiatric hospitals which aren’t equipped to deal with them and/or had vast negative impacts on the ability of family members trying to take care of them to be productive functioning members of society. Which is not intended as a dig at the unimaginably strong and dedicated people who support developmentally disabled family members so much as an acknowledgement that it can often be an all consuming 24/7 endeavor. Many of the families I work with have adult members who simply cannot work, even with the in home supports currently provided by Medicaid.

The advocates and activists in the article above were doing a lot more than fighting for their own right to healthcare and necessary life supports. They were fighting for thousands of people whose ability to advocate for themselves and I feel personally indebted to them. They helped protect people I consider friends. and loved ones. Really, they are heroes to me.

I know the experiences of the developmentally disabled won’t sway the part of the conservative spectrum who somehow believe disability to be a moral failing, but I think for the rest of us are actually pretty united in our belief that we want our society to be one that helps those who can’t help themselves and tries to give everyone a real shot to meet their potential for a happy, productive and independent life. For that, we need Medicaid, period.