Pioneering disability rights attorney Carrie Ann Lucas dies

Editor’s note: Carrie Ann Lucas, a nationally known disability rights attorney and mother of four, died today, Sunday, Feb. 24, 2019. She was 47. Lucas’s death was announced on her Facebook page by family and friends, who said she “died after an arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities and eventually leading to her premature death.” This profile of Lucas was originally published in The Independent on Oct. 28, 2016. 

The most vocal critic of a proposed ballot measure that would let dying people take prescribed life-ending drugs is a 44-year-old lawyer and disability rights activist named Carrie Ann Lucas.

It is Lucas who joins – or leads – public protests, who talks to reporters, who takes on the issue at debate after debate. Inevitably someone will suggest her arguments are selfish or callous, or that she is a fear-monger. Her critics’ understanding of the measure is as flawed as the measure itself, she will say, not without empathy. She knows people behaving in the name of love and mercy can’t always hear beyond the cry of their own hearts.

“I don’t want anyone to die in pain, either, and have a miserable death,” Lucas says. “But I also want to make sure that we are legislating laws that protect the most vulnerable people. And this doesn’t do that.”

In her newspaper op-eds, she describes what those who have not seen her may not know: She has a degenerative neuromuscular disease. She uses a wheelchair. She breathes through a ventilator. She has a gastrostomy tube. Lucas presents the details of her disease in the same straightforward way that she says she lives in Windsor as a single mom with four children — all adopted, all with disabilities. Her manner suggests it would be wise to stifle any hint of pity. For that matter, do not veer into some version of “I could never do what you do,” because, really, you don’t know what you are talking about. Human beings have no idea what they are capable of.

Lucas testified against death-with-dignity bills in the last two state legislative sessions. The hearings were full of emotion and dramatic testimony on both sides, and the bills were defeated. So, supporters sidestepped the legislature and gathered more than enough signatures to put the question on this year’s ballot.

Voters now will decide whether Colorado will join five other states that allow mentally competent adults with less than six months to live to receive a prescription for life-ending drugs. Two doctors must agree on a terminal diagnosis and prognosis. The patient can take the drug when and where he or she wishes, as long as it is self-administered.

Prop. 106 is widely supported in Colorado, which has a strong independent streak. Supporters, largely affiliated with Compassion & Choices, a Denver-based national organization, had raised $5.6 million as of Oct. 20, nearly twice that raised by opponents, the most powerful of which is the Catholic Church.

Lucas attributes the lopsided support for the measure to misinformation, naivete, and the gauzy handiwork of euphemism. “It’s not ‘medical aid-in-dying,’” she says. “It’s assisted suicide.”

The issue resonates deeply with those who know the helplessness of watching someone they love slowly die in pain or terror. (And I am among this universe of people. My mom. Cancer.) Or of knowing someone terminally ill and so desperate to die, they take their own lives. It is personal. On that level, the support for Prop. 106 is easy to understand.  

It is also easy to understand those opposed for religious reasons. Their faith tells them that it is not for us to decide when we should leave this world any more than it was for us to decide when to enter it.

Lucas’ arguments are more complex. This is, in part, because she is given to saying such things as the proposed law discriminates against people who are not terminally ill. “If we really believe that people should have the right to have total control over every aspect of their lives, even to death, then why not let a depressed 19-year-old who broke up with his girlfriend and is in very real pain access these drugs?”

(Yes, this is hyperbolic. No, Lucas does not seem to care. She is in the habit of carrying an argument to its furthest logical extension.)

But, in large part, her position can be hard to understand because it is rooted in her life as a disabled person. It requires the able-bodied to enter a realm where each day can bring a reminder that you, disabled person, are an afterthought to some, the subject of idealized inspiration to others, and an object of pity or repulsion to others still. All of these reactions achieve the same result: to strip from people with disabilities their  humanity, to deny them mutual acknowledgement of the glorious and messy and sacred thing that it is to be alive.

This is a realm unknown to most able-bodied people. And Lucas has spent half of her life here.

***

She was a high school freshman when she began to lose muscle strength. She attributed this, at first, to laziness. Lucas was an athlete. Maybe she just wasn’t training as hard as she should be, she thought.

By 17, she was walking with braces and had begun a years-long odyssey from specialist to specialist, from crutches to a manual wheelchair to an electric wheelchair, from a part-time ventilator to a tracheotomy and a 24-7 ventilator. Lucas now occupies “the land of folks who have a neuromuscular disease for which we don’t have a definitive label.”

As her disease progressed, Lucas graduated from college, worked as a teacher, volunteered as a youth pastor, received her Master’s degree in divinity, and went to law school, graduating near the top of her class. She won a prestigious Equal Justice Works fellowship, launching what became the Disabled Parents Rights nonprofit she now runs.

Along the way, she adopted four elementary-school-aged children from foster care. All have disabilities of one sort or the other. Two need a wheelchair to get around. They range in age now from 15 to 26.

Over time, she came to view doctors as fallible and biased against the disabled, whose quality of life, she says, they deem poor.

She learned that bureaucracies – be they the insurance industry, the school or child welfare systems – were quick to second-guess the needs and abilities of disabled parents and of disabled children. She had to fight to adopt her first child, her niece, because the child is disabled and Lucas is disabled and the social service agency could not reconcile the two.

Lucas, who practices juvenile law, represents parents who have been accused of abusing or neglecting their children. About 80 percent of her clients are parents with disabilities, who are overrepresented in the child welfare system.

“We hear things all the time like, ‘How can you be a parent if you can’t throw a football for your son?’” she says. “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.”

She underwent a slow, steady shifting of landscape, her worldview expanding from that of her able-bodied youth to that of someone facing yet another too-narrow doorway, too-cluttered aisle, or too-tiny restaurant because no one was thinking about how a wheelchair might fit.

The redirecting of perspective was so incremental that she did not experience it as an epiphany, but more like once she was on one side of a threshold and then she was on the other and she could not tell you how or when she crossed.

“It just was,” she says.

***

Prop. 106 defines terminally ill as “an incurable and irreversible illness that will, within reasonable medical judgment, result in death.” The proposed law also says the mentally competent terminally ill adult who wishes to access the drug – a sleeping medication known as secobarbital – must have a prognosis of death within six months.

By this definition, Lucas argues, she would qualify as terminally ill. Anyone who would die without medical intervention or treatment would qualify, including the insulin-dependent diabetic, she says.

Nonsense, counter supporters. The proposed law says the right to request life-ending drugs “does not exist because of age or disability.”

“Our doctors know the difference between someone who is disabled and someone who is terminally ill and has no option for life-saving medicine, no opportunity for medical intervention. They are in the active stages of dying,” says attorney Julie Selsberg.

If Lucas is the face of the opposition, Seslberg is that of the proponents. Her father suffered from ALS and wrote a letter to The Denver Post in February 2014 begging lawmakers to pass a death-with-dignity bill. In the absence of such a law, he said, he had chosen to starve himself to death.

“I have to give my testimony to you now, because by next week I hope to be dead,” he said. “You see, I made a terrible mistake. I chose to live when I should have chosen to die, at my own hands, many months ago. Because now I can’t swallow the foods that made my mouth water or the sweets that added a few pounds to my middle. I can’t talk to my friends and family who surround me; my voice is barely audible, and every whispered word takes monumental effort. I can’t walk; my muscles have atrophied. I can’t breath; I’m on a machine that inhales and exhales for me.”

It took Charles Selsberg 13 days to die.

“Doctors are not looking to interpret this is in broad manner,” says Selsberg, who has debated Lucas four times. “I was a prosecutor and I would not support something that I felt would prove a danger to a certain population. I have devoted my life to seeking justice for people and this is seeking justice for victims of terminal illness. I would not support it if I thought it would cause harm.”

Colorado isn’t pioneering anything here, Selsberg says, pointing out that Prop. 106 is modeled on Oregon’s law, which was passed in 1997. Since then, according to state statistics, 1,545 people have had prescriptions written under the Death With Dignity Act, and 991 patients have died from ingesting the medications.

But, Lucas argues, Prop. 106 does not explicitly say “active stages of dying.” From that lack of specificity flows the rest of her main argument. It follows the logic of a larger society that insists that with your wheelchair and ventilator and feeding tube, with your incontinence and inability to bathe yourself, you cannot possibly have an acceptable quality of life.

It does not escape her that some of the very same conditions that prompted Charles Selsberg’s plea to die with dignity are those with which she lives: a ventilator, a feeding tube, muscles that have atrophied.

“That’s my life,” she says. The profound insult of Prop. 106, she says, is the suggestion that she and others who are disabled lack dignity.

Lucas’ experience suggests to her that someone who is dependent on medical intervention to live, who is isolated and vulnerable and depressed, could easily find two doctors willing to sign off on a lethal prescription because, again, who would want to live this way?

That same experience suggests to her that a caretaker, weary of caretaking, could wage a campaign of persuasion – or coercion – against such a disabled person, sowing a seed of doubt that blossoms into certainty that life is no longer bearable and this prescription thing is the way to go. And, because no witnesses are required to be present, that caretaker could force feed the drugs and claim it was self-administered, Lucas argues.

That would be a felony under the law, said Selsberg, adding that safeguards are in place to protect against precisely such abuses as those Lucas describes.

Lucas calls the safeguards weak and unenforceable. “Look at what happened with medical marijuana,” she says. “The number of 18-, 19-, 20-year-olds with debilitating back pain working at ski resorts is remarkable.”

“It’s not the people who are supporting the measure, the proponents’ families, that I am worried about,” she says. “Those folks, clearly they have loving family members around them. It’s the people who don’t and I represent a lot of people who have no one … This a clear social justice issue. Once a person is dead, you can’t go back and say, ‘Oops, she was really abused. She was really depressed’ — and people at the end of life are depressed, to say they are not is a lie. It’s done. We can’t go back and fix that.”

***

Lucas fights because she does not know how not to fight. She has never been an “Oh, it will all work itself out in the end” kind of person. This is the girl who in high school ended up in the principal’s office because she argued that the band director should let her friend’s disabled sister march in band.

“It was just, ‘What do you mean she can’t go? Of course she can. You make that happen. You figure it out.’ That was my attitude. You fix things.”

The girl got to march.

This is the woman who decided to get her Master’s degree in divinity at Iliff school of Theology (she wanted to be a community organizer) and then went on a 33-day hunger strike with a handful of other Iliff students to protest what they saw as institutional racism. How could the library there not carry work by major African theologians, she demanded. She went on to sue the college because it did not have a handicap-accessible bathroom.

“I once said, when introducing Carrie for an award, that I know no one as able to bend reality to her will,” says Amy Robertson, a longtime friend of Lucas’. “She has a number of disabilities, her kids have disabilities, she fights for parents with disabilities. She can go into a situation and say, ‘This is how I see it,’ and get people to finally see it that way.”

Lucas has lost count of how many lawsuits she has filed as a plaintiff; many were part of her earlier work at the Colorado Cross-Disability Coalition. Nearly all involved violations of the Americans with Disabilities Act. The most well-known was probably the Kmart case, a class action suit in which she was the lead plaintiff and Robertson her lawyer. Filed in 1999, it took seven years to resolve and resulted in Kmart making its stores accessible, as well as a landmark $13 million settlement of which Lucas received $10,000. (“I took my kids to Disney World.”)

She fights because she still can.

When I first called Lucas, she thought I wanted to talk to her about Jerika Bolen. Bolen was the 14-year-old Wisconsin girl who was diagnosed with Spinal Muscular Atrophy Type 2, an incurable, progressive disease. She could move only her head and hands. She was in constant pain.

Jerika decided she wanted to stop treatment and enter hospice, choosing to die. She told the local paper she had thought about it a long time and that she knew her decision would hurt her family, but she was going to a better place. Her mother told reporters she had to respect her daughter’s decision, saying her daughter lived in constant pain and “no one in their right mind would let someone suffer like she was.”

Jerika asked for a special prom before she entered hospice. The story made national headlines. Hundreds of people attended. She died on Sept. 22.

“We just watched them starve a 14-year-old to death because she had a disability,” Lucas says. “She was 14. She was not dying. She was not anywhere close to death. We should be watching that girl go to high school and go to her actual prom and go to college and get a job because that’s what people with her neuromuscular disease do. People with her exact condition are therapists and doctors and lawyers and filmmakers and actresses and models. That is what she should have been doing.”

Lucas asked local child protective services in Wisconsin to intervene in Jerika’s case. For that, she says, her office received death threats.

“Everything from ‘I hope you die,’ ‘You are going to be the next to die.’ to ‘Butt out. This is none of your business.’”

Many comments came from people she assumes were “white liberals” because they came on the heels of a public radio interview. Those comments were more along the lines of: “’Well, of course she wants to die. Her life is horrible. She has this disability.’”

Which, to Lucas, is just another way of saying, “Better off dead than disabled.”

Lucas knows some people think she is misleading voters about the potential consequences of Prop. 106. She knows some think the scenarios she paints are far-fetched.

But Lucas also knows this: Just a few months ago people accepted a 14-year-girl’s decision to die rather than live with her disabilities. They not only allowed her to enter hospice and remove her ventilator. They also threw her a prom.

Large photo by Megan Verlee, Colorado Public Radio. Carrie Ann Lucas, right, a lawyer with significant disabilities, was among those testifying against the “Death With Dignity” bill on Feb. 7, 2015.

Small photo courtesy of Carrie Ann Lucas.