Editor’s note: This is one of two essays by disabled parents about the life and work of Carrie Ann Lucas, a disabled parent, activist, lawyer and all-around life force in the disability community who died on February 24, 2019. You can read another essay remembering Carrie Ann by Rebecca Cokley. Rest in power, Carrie Ann.
Creating a Disabled Family: The Life of Carrie Ann Lucas
Corbett Joan OToole
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.
I met Carrie Ann in Denver through my queer disability activist friends Laura Hershey and Robin Stephens. We immediately knew that we’d be friends for life. At that time she was focusing on getting religious places of worship to become more accessible to disabled people.
One of Carrie Ann’s greatest gifts is that she shared her journey, and her resources. When we met I had a young disabled daughter. Soon after Carrie Ann became a mother to her disabled niece. We were two poor queer disabled women navigating systems designed for nondisabled parents with money. Undaunted, she turned her considerable intelligence to issues for disabled parents.
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.
Her paid work limited her to serving parents in two Colorado counties. She was one of only two attorneys in the U.S. who represented disabled parents. 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.
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 were 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.
Carrie understood that having information is critical. She worked with the National Council on Disability to write the groundbreaking report, “Rocking the Cradle,” which was the first attempt to name the problems facing disabled parents and provide data and strategies for making changes.
Carrie Ann realized that having public policies that required social workers to consider disability as a negative in family evaluations needed to change. She could not tackle all 20 states that had discriminatory policies toward disabled parents but she could work to change law in Colorado. On April 25, 2018, the Family Preservation for Parents with Disability Act passed the Colorado legislature. No longer would having a disability be penalized in family law decisions. Her team designed this law to be a model for advocates in other states to use.
Yet she knew that paid work and legal changes were only a partial approach to these embedded problems. The lives of people with disabilities are entangled with numerous systems that create havoc and sometimes endanger people’s lives.
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 co-pays 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.
When a transman emailed to say that the foster care system was rejecting his application stating “transgender is a psychiatric condition” she showed him how to fight back against disability discrimination. She was equally adept at helping the conservative Baptist family negotiate with their church so their disabled child could participate in Sunday School.
She never made assumptions about people, instead inviting them to tell her the problem and their desired solution. She would then patiently show them the options. She would write up the steps and even give them a sample letter to give to the discriminating organization.
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 nondisabled people.
She also demanded that communities take responsibility for people with disabilities. When Hurricane Sandy shut down electricity for many in New York City starting October 29, 2012, within a few hours she organized a bucket-brigade of recharging batteries for a disabled man who would die without power to his ventilator. She did this from her bed in Colorado along with many other people in the disability community.
When you are the first, like Carrie, you carry an entire library of knowledge within you. Carrie’s needless death burned that library to the ground. She was a once-in-a-generation leader who never believed that she was important – only the work was important.
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. Some ideas: health care access, disabled parents rights, education, weakening of accessibility laws, etc.
- Make a public commitment to increasing accessibility for disabled people in your organizations. Create specific actions and deadlines. Post the access information on all your social media and outreach.
- Donate to disability-led (especially disabled people of color-led) organizations and projects in Carrie Ann’s name.
Corbett Joan OToole is a disability community elder, author of Fading Scars: My Queer Disability History, quilter, mentor, and organizer.
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