Remembering Carrie Lucas

March 22, 2019

In late February, the Disability Community lost a pioneering advocate, outspoken activist, and beloved leader when Carrie Lucas passed away at the age of 47. Lucas, who had a neuromuscular disease that robbed her of most of her movement, was an unstoppable pioneer for the rights of parents with disabilities as well as for the creation of accessible environments. She was also an avid photographer and mother to four adopted children.

 

After being told she would not be able to parent “due to her disability,” it became her quest to raise her own family. She generated enough money to attend law school, became an attorney, and would eventually join a nonprofit that advocated for the rights of parents with disabilities. During the 2017 legislative fight over the ACA, she was arrested for protesting in Cory Gardner’s office, which was broadcast live to 12,000 viewers on Facebook. Law enforcement had no means of caring for a person who uses a ventilator and ended up having to bring her to a hospital. She has also testified twice against death-with-dignity bills.

 

Carrie was also an incredible friend and mentor to many, including myself. As one of the fiercest members of the Disability Rights movement, it was often comforting to receive a personal email or text from her, asking about something that I wrote about online, usually a quiet affirmation of support, and often, exactly the thing I needed to hear. Carrie made you feel important; she would not just send one email, she would consistently provide feedback, she’d remember something you’d said and send you a quick text to remind you about it. She was an absolute joy to have as a friend. I was especially lucky because we shared the same birthday, though she was two years older. Once, when we both realized we’d each seen the Indigo Girls several dozen times, we chalked it up to being a “Scorpio” thing.


Carrie deserved much better of her last year of life. She was the woman who could out-advocate anyone, but that couldn’t save her from a broken healthcare system. Insurance companies denied her a much needed $2,000 antibiotic to fight an infection, and her health spiraled out of control. That denial robbed Carrie of her verbal abilities and forced her to use Assistive Technology to communicate until her passing. Many believe this decision by the insurance companies to be responsible for her death. If you can, please take a moment to read Carrie’s brilliant obituary from the New York Times. The Disability Community will truly never forget Carrie and her efforts. I know I surely won't.

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