The Disability Gulag

The Disability Gulag

This one tugged on my heartstrings a bit.

It’s a piece written by a woman with neuromuscular disease discussing the way the American healthcare system strips disabled people of autonomy and the right to make decisions over their lives and their bodies. A woman’s struggle throughout her life to avoid ‘disability gulag’, ended up in a state-funded nursing home, where her nurses are chosen by others, treat her according to a nursing plan written by others, and basically render you trapped with no control over your daily life or your body (Eg, your hair will be cut short for their convenience. You’ll be seen naked by people you didn’t choose every time you have to use the bathroom. And on, and on.) It’s a never ending battle, trying to get the assistance you need out of private funds because Medicaid finds it easiest just to put people like her in those same nursing homes, but if her health deteriorates, or she can’t manage the resources necessary to pay for the help she has to have to live, that’s where she’ll end up. Every day of her life, from childhood onward.

I had a moment of visceral fear, when reading about her going to consult with administrators at a state-run institution, and then having lunch with some friends she knew as a child in school who ended up there at the facility…where a staff member mistakes her for a new patient, and she flatly panics, a panic reaction urge to scream, but knowing if she throws a fit things will get so much worse, and so she just freezes, until one of her friends, a gentleman with cerebral palsy, comes to her aid, and convinces the nurse that she can’t be a patient, look, she has long hair, she’s wearing jewelry.

Harriet McBryde Johnson was an American author, attorney, and disability rights activist.

Johnson died at home on June 4, 2008.



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