By Deb Taylor
Editor’s note: Carrie Ann Lucas was a pioneering disability rights activist and attorney from Colorado. Her work led to law changes in her home state to allow people with disabilities to be parents. She advised families across the United States. Lucas, 47, died from complications from septic shock. She had a rare form of muscular dystrophy and used a ventilator and power wheelchair for many years. Cost containment by her insurance company meant that Lucas was unable to get needed medication. A cold became a serious infection, and she died after more than a year of cascading health programs. Her insurer’s refusal to pay for a $2,000 drug led to more than $1 million in medical bills.
This is excerpted from www.disabilityvisbibilityproject.com
By Corbett Joan OToole
You may have seen the tributes for Carrie Ann Lucas. They talk about her commitment to parents with disabilities and her political activism.
They inevitably veer into her family life: her adoption of four children with significant disabilities, how she battled personal health issues. Other tributes might mention the decision by United HealthCare that directly resulted in her death – along the way losing the ability to speak or type.
These tributes nearly always miss the essential facts of Carrie’s life: how she turned her home into a disability-enriched sanctuary for her family; how she provided free advice to all who asked; how she lived firmly by her principles no matter the cost; how she learned Morse Code in a few days as a new way to type into her computer after the medical denial caused the loss of use of her hands.
One of Carrie Ann’s greatest gifts is that she shared her journey, and her resources. Whenever I had a question, she researched to find the best answer. I, like thousands of other disabled parents, knew that Carrie Ann could figure out solutions to any problem. I knew that no matter what I faced, she had my back. When things got hard, we’d commiserate over social media and the next day go back to fighting for our rights.
Knowing I was on Team Carrie made me feel invincible. She could muster national support in a few hours if needed. Her ethical compass and fearlessness made her an unstoppable force for all disabled people. She deeply believed, and fought for, the rights of disabled people who are usually deemed too severe to be included in society.
Guided by a deep spiritual belief in the value of disabled bodyminds, she rejected concepts of incompetence. She always presumed, and advocated for, an assumption of competence for all people, especially those most at risk of institutionalization.
She recognized that the world has no interest in supporting people with disabilities unless there is a direct financial payoff for nondisabled people. Early in her career, she created the only legal service center for parents with disabilities, Disabled Parents Rights.
According to the 2012 report from the National Council on Disability, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” there are 4.1 million parents with disabilities in the United States. The number has only increased since this report. The need is unquestioningly huge and the resources almost nonexistent. Carrie worked on the report and its strategies for change.
From her home, Carrie answered requests from disabled people who faced discrimination in all areas of parenting – becoming pregnant, becoming a foster parent, being forced to relinquish a child, discrimination by adoption agencies, custody challenges during divorce, and the ever-present threat of having a child taken away.
The cause of the problems was nearly always based on the presumption, often codified in law, that a person with a disability is automatically unfit to parent. Disentangling the prejudice within all these different social service systems was a Herculean task that Carrie mastered with ease. One minute she’s walking someone through understanding foster care policies and the next providing suggestions on the easiest way to carry a baby when the parent uses a wheelchair.
She fought passionately against medical systems that too often devalue disabled people’s lives. She took the front lines with ADAPT to stop the Republican administration from cutting Medicaid. She knew even small cuts in an already bare-bones safety net would have huge impact. She watched with horror as people across the country died from lack of necessary medications or exorbitant copays as a result of the cuts. It is no small irony that she died as a direct result of the greed-driven insurance industry.
The public part of Carrie’s life is a very small part of why her death is breaking hearts across the world. When the announcement of her death was posted, hundreds of people wrote on her Facebook page: “I never met you, but you helped me. You changed my life.” I am one of the thousands of people whose life changed because of her help.
Carrie deeply believed that knowledge should be shared, that community creates essential safety nets, and that people always bring complex identities with them. So, she committed to learning about resources for all the issues she worked on. She understood how marginalizations intersect to create entangled problems …
Perhaps her most important achievement was conveying that life is worth living, that adaptive equipment or needed medications, were just as value-neutral as using a car or a shopping cart. Both she and her children had disabilities that often track people into institutions. She full-on rejected any definition of “living” that involved being denied the choices given to non-disabled people.
If you want to honor Carrie, fight for the lives of disabled people. We are endangered. If they can kill Carrie, who is next? Here are 4 steps you can take right now:
Get involved. Vote. Run for political office. Ask politicians, especially those running for President to support Medicare for All proposals that explicitly include Long Term Supports and Services. Pick one policy that is harming disabled people and fight to change it.
Make a public commitment to increasing accessibility for disabled people in your organizations. Donate to disability-led (especially disabled people of color-led) organizations and projects in Carrie Ann’s name.