Yesterday, February 24th, the disability rights advocate community lost one of its mightiest members, Carrie Ann Lucas. Lucas was a nationally known disability rights attorney and a mother of four children, each of whom are adopted and living with disabilities. She was only 47 years old.
Her death was announced by family and friends on her Facebook page: “[Lucas] died after an arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities and eventually leading to her premature death.”
Lucas lived with a rare form of muscular dystrophy, which slowly progressed and she became reliant on a power wheelchair and a ventilator during the last few years of her life. She also lived with type 1 diabetes, as well as hearing and vision difficulties.
Lucas’ death was ultimately a result of her insurance company, UnitedHealthCare, refusing to pay for one specific inhaled antibiotic. She caught a bad case of the cold in January of 2018 but was denied access to proper treatment. As a result, she had to take a less effective drug, and she had a set of adverse reactions to this drug. This led to spiraling health issues, including the loss of speech, and she had numerous stays in the intensive care unit during the past year. The healthcare company refused to pay for the needed drug allegedly to save $2,000.
If you haven’t heard of Lucas and her work, then you are unfortunately not alone.
During this time of society when it has become acceptable to discuss topics that were once considered taboo, such as gay rights and reproductive rights, discussions surrounding disability rights issues are still kept in secrecy. Discussing disability issues often makes the mainstream population uncomfortable. It’s not as “sexy” as equal marriage rights or climate change.
When disability is represented in media, it is mostly through the lenses of pity or inspiration—never through a human rights perspective. Most of the featured stories are about someone overcoming the odds despite having a disability. There is a toxic tendency of the struggles and injustices of people with disabilities being eradicated from the mainstream social justice and civil rights movements.
Carrie Ann Lucas should be remembered and honored because of all the activism and changes she achieved despite societal and systematic discrimination that attempted to impede her every step of the way.
Lucas started her career as a teacher before earning her master’s in divinity to pursue a life as a pastor. Soon after, she faced unsound discrimination based on her disabilities when trying to adopt a child and this motivated her to become a lawyer. She founded Disabled Parents Rights, a nonprofit that’s “dedicated to combating discrimination that impacts parenting for parents with disabilities. [Disability Parents Rights] provides direct representation, advocacy, and technical assistance to disabled parents, as well as their advocates and attorneys.”
Lucas was politically active in her hometown of Windsor, Colorado, and helped pass legislation to protect the rights of parents with disabilities. She was also the lead plaintiff against death-with-dignity bills, claiming that such bills would disproportionately affect people with disabilities by prematurely ending their lives.
Among her running list of advocacy work is her outspoken support of Medicaid. In 2017, the disability organization ADAPT protested the Medicaid budget cuts that were purposed by GOP senators. Lucas was one of nine people with disabilities who was arrested after a 58-hour sit-in protest at the Denver office of Senator Cory Gardner.
The Facebook post that announced her passing also reads:
For all intents and purposes, a shero of our community was murdered in the name of cost containment. This is why we MUST fight these measures with all we have. Insurance companies and government programs must not be allowed to deny people what they need. Just last month she was having to ration her insulin for her type 1 diabetes because of the same insurance company and how impossible it is to work between private insurance and Medicare and Medicaid. This is a great example of why people with disabilities should not be forced into insurance or health plans and why we need Medicaid as the primary health delivery system for this country.
This article originally appeared on Forbes