Champion of the disabledCarrie Ann Lucas

Diagnosed with central core myopathy, a form of muscular dystrophy that is a progressive neuromuscular disease, Lucas slowly lost most of her sight and hearing — but she didn’t lose her intelligence, or her determination to fight. After college, she obtained her Master’s of Divinity from the Iliff School of Theology in Denver, Colo., and worked as an ordained minister — and a law clerk for the Colorado Cross-Disability Coalition. “She was a fierce advocate for what was right,” said her mother, Lee Lucas. “She was a fierce woman.” Angered by discrimination against the disabled, she was a plaintiff in a lawsuit against the Kmart store chain. Speaking to the manager didn’t help, she said. “I would get so frustrated I would put my stuff down and go somewhere else. It was like they didn’t want my money.” In 2006, after 7 years of litigation, Sears (which had purchased the chain in 2005) settled: $8 million in cash, $5 million in gift cards, and $3.25 million in attorneys’ fees — the largest award to date in a disability-access lawsuit. More importantly, Kmart promised to improve access in its stores and comply with the Americans With Disabilities Act. In that 7 years, Lucas went from having to use crutches to walk, to a wheelchair — and a ventilator. “We respected and admired Lucas,” said the Denver Post Editorial Board, “and were in awe of what she accomplished in a world that is too often resistant to change” — even as the newspaper sometimes pushed back at her tactics. They conceded her “bare-knuckled activism was effective because it was uncomfortable.”

Carrie Ann Lucas

While adopting a child, Lucas found she and her daughter were the target of particularly harsh discrimination: according to Colorado state law, disability was a legal reason to disallow the disabled to adopt, or even to remove a child from a parental home — the threat of which was used as leverage against the disabled. Outraged, Lucas went back to school: the University of Denver School of Law. She got her law degree in 2005 to specialize in family law. Lucas pushed through Colorado House Bill 18-1104, which changed state law to remove that legal discrimination against disability. “She was about getting stuff done, about getting changes,” said Julie Reiskin, the executive director of the Colorado Cross-Disability Coalition. “She was very driven.” Lucas went on to adopt three more children. In January 2018 she caught a cold, which can be a nightmare for someone who needs a ventilator. It progressed into a lung infection, but the antibiotic her doctors wanted to use — one that worked on her before for a previous lung infection — cost $2,000, and her insurance denied coverage, her family says. She was given a cheaper, less effective drug, and Lucas had a bad reaction to it: over the course of the year, she was hospitalized seven to eight times for septic shock, a common result of out-of-control infections. Those complications and stays in intensive care, her family says, cost more than a million dollars. One complication: Lucas could no longer speak, but she could write, and continued to post in her blog. Her body could not handle the last bout of septic shock: Lucas died from it on February 24, at 47.

From This is True for 3 March 2019