On Sunday, long-time disability rights activist and attorney Carrie Ann Lucas died from complications from an infection after she went into cardiac arrest, which resulted, according to her friends and family, from her insurance company’s denial of a necessary medication. She was 47.
Lucas, who had a rare form of muscular dystrophy and used a wheelchair as well as a ventilator, spent her life fighting for the rights of people with disabilities, from working to expand and protect the rights of parents with disabilities to advocating for increased health care access. She grew up in Windsor, Colorado and was a teacher and a pastor before becoming a lawyer. She founded the group Disabled Parents Rights, with the goal of assisting parents with disabilities, work that was informed by discrimination she experienced when she attempted to go through the adoption process. She also fought against passing physician-assisted suicide laws. In 2017, as a member of the disability rights group ADAPT, she was one of several people with disabilities who were arrested during a sit-in held in protest of Republicans’ planned cuts to Medicaid.
A February 24 post on her Facebook page states that 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.” More details from the post:
Because Carrie Ann worked for the state, she had use state insurance which was primary ahead of her Medicare and Medicaid. In January of 2018 she got a cold which turned into a trach and lung infection. Her insurance company UnitedHealthcare, refused to pay for the one specific inhaled antibiotic that she really needed. She had to take a less effective drug and had a bad reaction to that drug. This created a cascade of problems, loss of function (including her speech). United Healthcare’s attempt to save $2,000 cost over $1 million in health care costs over the past year. This includes numerous hospitalizations, always involving the Intensive Care Unit which is par for the course for ventilator users.
In her final blog post from January, Lucas wrote about the impact of spending a significant portion of the past year in the hospital:
In the last nine months, I’ve spent a total of eight weeks in the hospital. Some hospitalizations were shorter, 2 and 3 days, and over a weekend. Others have been longer 8-, 9- and 10-day long grinds like this one. In these nine months, I left one hospital against medical advice to transfer myself to another hospital because of inadequate care, acquired additional infections from the hospital, and suffered more medical mistakes than I can count.
When confronted with these realities time and time again during hospitalizations, the trauma builds. One can only be told you are incorrect, only to have someone come back later and confirm you were correct so many times. One can only correct medical mistakes so many times. One can only handle the disruption in any sort of routine so long. The loss of autonomy and uncertainty in the hospital is trauma inducing. Each hospitalization is worse because I have not had enough time between hospitalizations to allow my emotions to recover. This trauma is unacknowledged by physicians, and they fail to understand how their actions and patterns are creating trauma which simply exacerbates the situation. Instead we patients are left in a puddle of tears with few tools to help ourselves because we have no control, and face only uncertainty.
In a remembrance from the Civil Rights Education and Enforcement Center, which gave Lucas an award in 2016, the group wrote: “Carrie may have been the only wheelchair-using Latina with a bumper sticker reading ‘just another disabled lesbian for Christ,’ dressed in camo, driving her trak-chair into the wilderness in search of the perfect photo.” The group added: “We are very grateful for all Carrie has taught us about disability rights and intersectionality, and for being a brilliant and hilarious colleague and friend.”
Lucas is survived by her four adopted children and her partner Dr. Kimberley Jackson. “She was an amazing person who dedicated her whole life to helping other people and I just miss her so much and so will the disability community,” Jackson told the Coloradoan. “We have a similar disability and she understood me like no one has before.”