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 Corbett Joan OToole. Rest in power, Carrie Ann.
Carrie Ann Lucas Was a BAMF*
I’m writing this in my living room watching my kids play with their toys, winding down after a long weekend. I got an email from a friend, letting me know that our mutual friend, pioneering attorney Carrie Ann Lucas, had passed away. We knew it was coming, but that knowledge did little to give me peace, because you see, our friend died because of an abusive relationship. I saw her manipulated, gaslit, threatened, neglected, and abused repeatedly. Every time she seemed to find a way out or escape the situation, the abuser would return, vengeful and vindictive, and ready to go another round with her and her family. The perpetrator left them battered and bruised, but still unbroken. There’d be a brief intermission sometimes before it would slink back into her life. And then the battle would progress again, and the cycle would perpetuate. Carrie Ann would fight again, using her knowledge of the law which she trained in, explicitly to gain the ability to fight abusers such as this one. And finally, after so many years, so many battles, so many manipulations, the abuser killed her. It wasn’t an ex-lover. It wasn’t a long battle with addiction. It wasn’t the type of situation where you could just tell her to leave the jerk. No, the abuser who took the life of my friend Carrie Ann Lucas, was a health insurance company.
How is a health insurance company an abuser? Well if you’re a person with a disability or a significant chronic illness, this is all too easy. For nondisabled folks unfamiliar with this, health insurance is the largest non-negotiable in our lives and it has the power to dictate decisions that extend beyond the perimeter of an exam room. It can regulate where you live, who you live with, if you have a job, how much money you are allowed to save up, how much money you can earn.
Carrie Ann fought the ableist structure of the medical industrial complex daily. And not just in the four walls of a hospital, but in the courtroom. She literally helped to create a new field of law to protect and defend the rights of people with disabilities to be parents where there was no legal precedent. She vigorously defended people with cognitive disabilities, people with mental health disabilities, people with physical disabilities, who desired to have what most people want, a family. She participated in die-in’s to protest cuts to Medicaid that would have forced people with disabilities into nursing homes. She was also acutely aware of the racism embedded in these same systems that disproportionately impacted disabled parents of color. In a 2018 interview Carrie Ann described her clientele:
In my practice, between 75 and 80 percent of parents in court-appointed cases had one or more disabilities. Most of those parents were parents of color. [Both] people of color and people with disabilities are vastly disproportionately represented in the child-welfare system.
In pursuing the desire to be parents, her clients were attacked by abusive systems, ableist policies, and structures grounded in the notion that there is a clear definition of what a family looks like and it doesn’t include Braille, ASL, wheelchair ramps, or text to speech. Carrie founded Disabled Parents Rights as a result of there being no qualified legal representation to support the rights of parents that the justice system often perceived as incapable. Why, do you ask that such a thing is necessary? Aren’t lawyers, especially those trained in family law, prepared to support and defend all types of clients? No, no they’re not. The proof of this is the over 20 states that still have laws on the books that allow removal of child custody solely on the basis of a parents disability.
It is this miscarriage of justice which is what brought Carrie Ann and I together. First in my work at the White House when I became pregnant with my oldest child and had to fight an overzealous geneticist in the NICU who treated my son like a freakshow that she could gain notoriety from in medical journals.
In the disability community we talk about the importance for young people to have connections to disabled adults so they can have real life examples of people like them who have navigated things like college, the workplace, relationships, family life. Because if you can see it, the thinking is, you can do it. For me, I was an anomaly. I grew up in a family with the same diagnosis I had, Achondroplastic dwarfism. But losing my father at 10, and my mother at 25, meant by the time I was ready to have kids, my parents were long gone.
I remember calling Carrie Ann as a lawyer and a mom, in tears to ask her what I needed to do to get my son home and she listened, comforted, and then gave me tools, resources, and language to get back in the right. Our friendship continued as I went to run the National Council on Disability which had recently published a groundbreaking 2012 report, “Rocking The Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” that Carrie Ann had been an advisor on.
Every parent with a disability could benefit from a friend like Carrie Ann. The fact that she is no longer in our world just enrages me more now. The fact that the systems that should be in place to maintain the care and wellbeing of people with disabilities and their families, killed her. The fact that her insurance company thought that the medication she needed to recover from a lung infection was too expensive and instead approved a drug that would lead to her loss of speech and her eventual death. Carrie Ann Lucas died to save $2000, even though it ended up costing the insurance company over $1 million to try and salvage their error.
The system isn’t working. Or maybe it is. Maybe the intention of the actual system is to kill us. For Carrie Ann and all the future world changers she left behind, we must continue to fight the abusers. We will continue to advocate for health care policies that center the needs of people with disabilities over the need of reducing a number inside of a a cell inside of a spreadsheet for some insurance company somewhere.
Many leaders in civil rights work, specifically women leaders, have felt the pressure to choose family or career. Carrie Ann defied that pressure. If there’s anything I hope my children learn from her life, it’s that the two can be the same thing. And there is power in not just advocating for laws that will improve your life, but, like a boulder being cannonballed into a pond (Carrie wasn’t subtle like a pebble), there will be huge waves and ramifications for those who come behind you. Carrie Ann was unapologetic as a fat, queer, disabled mama. And she came to each of those identities with a power and confidence that made some folks (particularly politicians advocating against the rights of disabled people) intimidated. And she never apologized for that.
*BAMF= Badass Motherfucker
Rebecca Cokley is the Director of the Disability Justice Initiative at the Center for American Progress and the proud mom of 3 kids.
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