Disability-rights advocate Carrie Ann Lucas, 1971-2019, a “bad-ass” to the end

Friends, family honor her full-throttle life, sound alarms about a death they say could have been prevented

Photo of disability rights advocate Carrie Ann Lucas taken in April 2017, when she was participating in the Emerge Colorado program, which recruits and trains Democratic women for office. (Photo courtesy of Lucas family via Facebook)

In the wake of disability-rights advocate Carrie Ann Lucas’s death on Sunday, state lawmakers offer a moment of silence in her honor. Those who knew her summon the memory of Lucas powering through Capitol corridors and committee hearings with her wheelchair and her ventilator and a stare that could raze you to the ground if circumstances warranted. A House member chokes back tears, recalling Lucas’s words as she fought to block legalization of physician-assisted suicide: “My life has value, and I will fight to prolong it and the lives of others.”

In the wake of Carrie’s death, social media swells with an outpouring of grief, a torrent of praise, some of which she would have welcomed: “fierce,” “fearless,” “formidable,” “a fighter when a fighter was needed.” Other superlatives she would have taken time to dismantle because she rebuffed attempts, particularly from the abled, to cast her as exceptional among the community of people with disabilities. Veneration, she understood, all too often masks low expectations, and a pedestal makes it hard to see someone eye-to-eye. That she was exceptional among the community of human beings is simply a fact.

Carrie taught, protested, litigated, wrote, and advocated for a broad understanding of civil rights and human dignity,” wrote her close friend, Amy Robertson, the founder and co-executive director of the Civil Rights Education and Enforcement Center. “[She] 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.”

In the wake of Carrie’s death, her mother, Lee, and her younger sister, Courtney, sit in the sunny living room of Carrie’s Windsor home in a daze, what with the New York Times obituary writer calling and Facebook alerts pinging and Carrie’s four children to comfort and flowers for the memorial service to be ordered. The pair wonder, only half-jokingly, how they might get away with a floral arrangement for the church that read something along the lines of: “Bad-ass bitch.” Now that, Carrie would like.

They knew what she meant to people. They knew she was widely respected as an attorney and advocate fighting for the rights of disabled people —  and, in particular, for parents with disabilities. Carrie adopted four children, all of them with multiple disabilities. It was the custody battle for the first, the assumption that she could not possibly be a capable parent, that led her to law school.

“We hear things all the time, like, ‘How can you be a parent if you can’t throw a football for your son?’” Carrie told me in 2016. “As disabled people, we are always addressing the issue of how society devalues our lives and experiences. We are always confronting attitudes about our abilities to work, to be parents. We are confronted day in and day out with the way society views our capability and our quality of life.”

Many people knew Carrie the hell-raiser. She was the woman who led sit-ins that drew national attention, who wielded her intellect and her voice as weapons to push passage of a state law to ensure that a parent’s disabilities could not be used to justify denial of custody or guardianship, and who fought Colorado’s aid-in-dying law — a phrase she hated and demanded be called assisted suicide. Some even knew of the younger Carrie, the girl she was before her disability manifested itself, the abled child who demanded equity for her disabled classmates, the student who went on a hunger strike in college. But mother and sister say they are overwhelmed by the number of stories they have heard of her quiet guidance to families, the work she did in the shadow of the spotlight. They are shaken by the magnitude of the loss and by their own disbelief of her absence.

“She was Carrie,” her mother says, “and Carrie was a force of nature.”

How, Courtney wonders, can she be gone?

***

Carrie had congenital myopathy — a type of muscular dystrophy, as she described it. It affected her entire body. The first symptoms appeared when she was still a teen. Eventually, she could not walk. She was dependent upon a ventilator to breathe. She used hearing aids, a feeding pump. She had severe allergies and asthma. She was an insulin-dependent diabetic. She’d been dealing with doctors and health insurance companies for decades.

“Certainly not all patients are as knowledgeable about their care as I am, but for those of us living with complex conditions, we know our shit inside and out,” she wrote in her blog this past January. “If we don’t, we die quick.”

She caught a cold in January 2018. The cold turned into an infection. Her family and friends say that she needed a specific type of inhalable antibiotic to treat that infection. Carrie knew what worked for her because she needed to know. Her systems required an ongoing, diligent balancing act. The insurance company, United Healthcare, denied coverage for that antibiotic, she wrote. It was not on its preferred drug list. So, she took an antibiotic it would cover and suffered a severe reaction. She went on high-dose steroids to treat the reaction, but that also suppressed her immune system. Her underlying condition, its progressive nature, gained momentum. In April of last year, she lost the ability to speak.

She was frustrated by her reliance on the “talk” device upon which she had to type what she wanted to say so that a mechanical voice could speak for her. She wrote that it made her feel invisible. People hung up on her when she called. They walked away while she was still typing.

Carrie had used her voice to advocate, to activate, to debate, to cajole, to intimidate, to soothe, to connect. “I have controlled the world with my voice,” she wrote.

Over nine months in 2018, she spent a total of eight weeks in the hospital. Pneumonia, sepsis, surgery. She found the going in and out of intensive care traumatic in the glare of the lights, the incessant activity, the lack of control over her own care, the insult of people ignoring her to talk to her attendant. She found herself in situations she’d warned about for years: Without vigilance, without perseverance, without advocacy, larger society would, bit by bit, exclude those with disabilities and erase their individuality.

In 2017, she warned of a healthcare system that made decisions with patients as afterthoughts. She wrote of the high price to be paid if people do not fight a system that has “commodified and monetized every aspect of healthcare.”

“Do justice,” she wrote then. “Love Mercy. Do not let this happen to our country.”

Ask her mother about Carrie’s last year of life and Lee responds: “Hell would be an apt description.”

Still, Lee says, Carrie was Carrie. “If there was a challenge, she accepted it. She conquered it. She moved on.” And so, between the hospital visits, Carrie tried to win a seat on the Windsor Town Board. She testified before state legislative committees with her talker. She argued a case before the Colorado Court of Appeals and won.

She’d had surgery to replace a feeding tube about a month ago. Last week, she was home, still recovering, when she became unresponsive and her heart stopped. Paramedics were able to resuscitate her, but she did not regain consciousness. She died Sunday of complications related to sepsis. She was 47.

Carrie never pretended her condition was not progressive. She knew that one day it would kill her. But she fought any effort to accelerate that eventuality. And, so, in the wake of her death, there is also fury among her friends and family who say a decision made by a bureaucracy took away her agency and stole from her what time she had.

“People in our community get murdered by the health care system every day,” says Carrie’s longtime friend Julie Reiskin, the executive director of the Colorado Cross-Disability Coalition. “Carrie was not the first. She will not be the last.”

Reiskin says there “is no absolutely no question” that Carrie’s death was “preventable and deliberate.”

“Getting a cold, that’s luck of the draw. Getting an infection from that, that’s luck of the draw. But if the infection had been treated the way she needed, Carrie would be alive today.”

Carrie would not want these circumstances to go unchallenged, Reiskin says, and in that way she would see her death as a continuation of her life’s work, as a call to action. To start, Reiskin says, United Healthcare needs to change its policies and publicly announce how it is doing so.

In response to my questions about the antibiotics and their comparative costs, the reason for denial and response to the charges that Carrie’s death was accelerated by the decision to deny her coverage, United Healthcare’s communication directors said in a statement only that the company is “saddened to hear of Ms. Lucas’s passing.”

“Our care advocates and clinical teams,” the statement continued, “work extensively with members suffering from chronic conditions and their families to help these individuals get access to care covered under their plans.”

****

Disability rights advocate Carrie Ann Lucas with her four children on an outing in September 2018. (Photo courtesy of Lucas family via Facebook)

In the wake of Carrie’s death, her sister, Courtney, begins moving into her house to raise her nieces and nephews as did her own children. Yes, many people lost their champion, Courtney says, but she lost her big sister, and, yes, they fought, especially when they were young. But what brought them together, she says, was a shared sense of what is right and what is wrong and an abiding belief in equality and the power of the human spirit. Their parents — Dad is a Marine veteran, Mom worked in retail sales for many years — get credit for that, Courtney says.

“I don’t want to see her legacy die,” Lee says when asked what she would like to say to those mourning Carrie. “Please continue Carrie’s work. Treat each other with kindness. Try to be empathetic to everyone.”

Carrie left her instructions for her service. They were, of course, precise. She wrote that she wanted a disability-positive and inclusive celebration.

“There shall be no discussion of dancing with the angels, being healed, cured or other such ableist language. I will come back to haunt anyone who allows that to happen,” she wrote.

Carrie kept a map of the U.S. on her bedroom wall. On it, she marked every state she visited, every national park. Alaska was waiting for her. She had a power wheelchair outfitted with wheels like a tank and she took this out when she went camping and fishing. It had a mount to allow to her to target shoot. There are pictures of her and her children, Heather, Adrianne, Asiza and Anthony, out on excursions.  There are pictures of her and her partner, Kimberley Jackson, a powerhouse activist in her own right, making candy. There are pictures of her testifying in the state legislature, showing off her latest hairstyle, rocking her lipstick and newest pair of glasses.

The pictures are evidence of a life lived full-throttle. They are reminders of what Carrie never stopped saying: It is not in the eyes of the state, in the power of doctors or insurance companies, in the judgment of the casual observer to determine what does and does not make a meaningful life. Human dignity, she argued, is not earned because legs work or ears hear, because lungs or stomachs or minds function unimpaired. Human dignity is inherent. It is intrinsic. It is sacred.

Funeral services for Carrie Ann Lucas will be at 10:30 a.m., Friday, March 1, at Faith United Church of Christ, 1020 Walnut St., in Windsor. The family requests no indoor photography and asks that all attending wear bright colors.

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