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Disability rights activists fight for change – but who are they?

A star in the new generation of disability rights activists, Erin Gilmer, died in July at 38. She was a force in the movement who fought for medical privacy, lower drug prices and a more compassionate healthcare system.

Gilmer, a lawyer, had rheumatoid arthritis, Type 1 diabetes, borderline personality disorder, and occipital neuralgia, which causes intensely painful headaches, according to The New York Times. Her illnesses left her unable to work or even get out of bed for long periods. Yet “she was a frequent consultant to hospitals, universities and pharmaceutical companies, bringing an extensive knowledge of health care policy and even more extensive firsthand experience as a patient,” the Times said in her obituary.

Every day, hundreds of disability activists fight for the civil rights of children and adults with sight, vision, learning, mental health and mobility disabilities. Do you know who they are in your community?

To find them, check with the local Independent Living Center, agencies such the Epilepsy Foundation, ARC, United Cerebral Palsy and the American Foundation for the Blind, and advocacy groups like Disabled American Veterans. You may just find your own Erin Gilmer.

More information:

New York Times: https://www.nytimes.com/2021/07/17/health/erin-gilmer-dead.html

Healthcare I.T. Today: https://www.healthcareittoday.com/2021/07/09/lessons-learned-from-a-fierce-patient-advocate-erin-gilmer/

By Susan LoTempio​, board member, National Center on Disability and Journalism

Contact @susanlotempio or via email at slotempio@gmail.com