bendy joints, fragile life, and how the denial of effective care can kill us

Disabled people often rely on an intricate but fragile network of supports, services, and medical care to survive. Sometimes the fabric of supports and lifesaving medical care bends like my joints, stretching far like the faulty collagen in my body. Sometimes it does not bend, but tears, severing the thread of life.

Carrie Ann Lucas, disabled attorney, parent, and pioneering activist, was 47 years old. She had a rare form of muscular dystrophy, but she died of complications from a treatable condition because UnitedHealthCare refused to authorize a medication that she needed. I never knew her, but I knew of and valued her work.

And it is not just Carrie Ann Lucas.  I am too tired to find all the names, all the capricious insurance denials, all the bias in medical professions. It is all kinds of people, disabled people of all stripes. I wish I knew more of their names and stories. If this was Leverage, there would be people tackling the holes Robin Hood style, case by case. This is not Leverage. We have direct action and policy still. We should use it:

There is an institutional bias in our system of supports and services. Sometimes that kills people. There is a long waitlist for SSDI appeals. The death toll is mounting. People get taken off their benefits without warning. Sometimes that kills people. Insurance companies often won’t pay for the most effective treatment. Sometimes that kills people, like Carrie Ann Lucas. 

I am disabled, low-income, and on state Medicaid. I am struggling to get benefits. Republicans keep trying to kill the Affordable Care Act. I am mere peoples’ generosity from being forced to give up my cat, move in with relatives, and suffer cascading mental health crises that could end badly. I will be 26 soon. Sometimes I wonder if or when my friends and I will die early, and within what scenario.

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