Portrait of the late disability rights advocate Carrie Ann Lucas.

Disabled Activists Should Not Have to Die to Have Our Voices Heard

Carrie Ann Lucas's recent insurance-related death has brought new eyes to her work as a prominent activist—and is yet another instance of disability rights only gaining mainstream attention after one of us dies.

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Mar 7 2019, 6:24pm

Portrait of the late disability rights advocate Carrie Ann Lucas.

The recent death of prominent disability rights activist Carrie Ann Lucas, who passed away due to health care rationing by her insurance company, highlighted the high stakes of health care reform in America. Lucas, a Colorado-based attorney, spent her career advocating for the rights of disabled parents and working with disability rights group ADAPT on issues like defending Medicaid and fighting to keep disabled people in “our homes, not nursing homes,” as a popular protest chant puts it. She was also an advocate with Not Dead Yet, a group that opposes physician-assisted suicide.

When a cold turned into a trach and lung infection in January 2018, Lucas, who was ventilator-dependent, needed antibiotics, but her insurer balked at the cost of the most effective medication available, setting off a cascade of events that left her in ill health for much of 2018. Her subsequent and much-publicized death drew attention to an issue that has long plagued the disability community: It often seems like non-disabled people only recognize the injustices levied on disabled people after one of us dies.

This delayed attention to disability rights movements has led to a cultural tradition among disabled people: turning their own deaths into blunt political instruments in a final act of activism. One of the most striking examples took place when disability activists echoed the Ashes Action of 1992, in which the cremated remains of deceased HIV/AIDS activists were dumped on the White House lawn: 2017’s “Mail Me to the GOP” campaign proposed mailing the cremated remains of people who died due to lack of health care access to GOP lawmakers who voted in favor of repealing the Affordable Care Act.

Another iteration of this tradition can be seen in the trend of devastating obituaries for people with substance use disorders that frankly confront the facts of their deaths, like that of Madelyn Ellen Linsenmeir, who struggled nearly half her life with the substance use disorder that killed her at age 30, leaving behind a four-year-old son. The cases of people like Alec Raeshawn Smith and Shane Patrick Boyle also illustrate the use of obituary as activist tool: Both died because they were rationing their insulin, taking less of a life-saving medication than they needed to manage their diabetes because, thanks to skyrocketing prices, they couldn’t afford a sufficient amount. (Insulin, a nearly 100-year-old medication, can cost more than a monthly mortgage payment for some patients.)

In the deaths of victims of disablist systems, commentators who never knew them or paid attention to their lived experiences weigh in on the injustices that killed them. Sometimes, people make regretful comments wondering where these amazing, vital, dynamic activists were hiding, why they didn’t reach out for help, and why people are just now discovering them. At Forbes, Sarah Kim addressed the widespread social media reaction to this effect in an obituary titled, “Carrie Ann Lucas Dies at Age 47. You Probably Haven't Heard Of Her, and That's a Problem.” She notes that Lucas and other disability activists like her weren’t hiding at all—plenty of people had heard of them. Mainstream society chose not to look at them.

Many non-disabled people seem only to think about disability if it directly affects them, or to share an “inspirational” meme on social media. Whether the latter sentiments take the shape of “the only disability is a bad attitude” or a story about a non-disabled person doing a nice thing for a disabled person, projecting heroism onto a disabled person contributes to disablist attitudes. As the deaf and disabled TV presenter Jessica Kellgren-Fozard wrote in Cosmopolitan: “It isn’t too far off from the dreaded comment, ‘If I were you, I’d kill myself.” Australian comedian Stella Young also loathed and repeatedly spoke out about the perniciousness of such memes prior to her death in 2014—and, sadly, is remembered primarily for popularizing the term “inspiration porn” rather than for her other work as a comedian and critical commentator.

The dismissal of living disability activists—and many of those fighting an unfair system to stay alive turn into activists, even if they didn’t start that way—is also rooted in others’ unease about how many of them are noisy and assertive, aggressive and confrontational whether they are cracking ribald jokes, like Young, or unapologetically demanding the right to parent, like Lucas, who made people “uncomfortable” with her “bare-knuckled activism.”

Disabled people are asking for too much when they request that businesses comply with the ADA. They get screamed at when they tell people to leave service animals alone. They are met with discomfort when they talk about sex. They upset people when they self-identify as “crip” and view disability as a sociocultural identity, not a failing. In 2017, they startled people by showing up in force to protest attacks on the ACA. These activists were doing the work to keep not just themselves and their communities alive, but to reshape society—Lucas, for example, was arrested multiple times in direct actions with ADAPT, a disability rights group that was heavily involved in the fight to save the Affordable Care Act. Lucas and others like her are a ferocious refutation of “I’d rather be dead than disabled,” a comment some non-disabled people feel obligated to share in response to conversations about disability.

In death, vocal, strong-willed disability activists cannot push back on being exceptionalized. Instead, they become passive recipients of whatever heartwarmingly tragic narrative people want to project onto their them. Each death of a prominent and beloved person in the disability community comes with an awareness that nondisabled people will suddenly discover them while likely ignoring the radical nature of their work in life—and the work of their surviving community members, whether they are disabled people defending the right to parent or involved in health care policy work to ensure that no one has to die from insulin rationing again.

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Euphemistic language like “lost a battle with” a given health condition in obituaries even more frustrating. Lucas really did die because she lost a battle—one with a pointless squabble over $2,000 that ended up costing her insurance company millions before it killed her. Lucas would have been among the first to say that the community should use her death for the cause, but she would no doubt have preferred to continue to live her rich, full life. Lucas certainly fought like hell to give that right to others—to battle for, not against, living with a disability.