Remembering some of the artists, innovators, and thinkers we lost in the past year.
By Ruth Padawer
Carrie Ann Lucas was in divinity school when she learned that her severely disabled niece — not quite 10 — had been placed in foster care because Lucas’s half brother could no longer care for her. Lucas knew that disabled children were rarely adopted from foster care, especially children like her niece, who had significant physical and cognitive challenges.
Lucas, a single woman in her late 20s, told her sister, Courtney, that she was seeking custody. Courtney was incredulous. “I had two young kids. I said to her: ‘Are you crazy? You have freedom now! Why would you do this to yourself?’ She said, ‘There’s no way in hell any niece of mine is going to spend the rest of her life in foster care.’”
Lucas had been a middle-school teacher for two years and was studying to become a minister. But her custody application was blocked because she used a wheelchair, a result of a rare neuromuscular disease. The social worker was adamant: A disabled person couldn’t possibly parent a disabled child.
How, Lucas countered, could a child-welfare agency think the girl would be better off institutionalized or bouncing among foster homes? Why not keep her in the family, in a loving home with an engaged, hardworking mother, who was unashamed of her own disabilities and connected to resources? After 16 months of battle, the agency relented.
In the years that followed, Lucas’s neuromuscular disease progressed, leaving her reliant on a motorized wheelchair and, eventually, a ventilator and a feeding tube. Yet none of those things — or her impaired hearing and sight due to medical complications — deterred her. What got in her way was how people and institutions treated her and others with disabilities.
Working with a Colorado disability rights group, she became a plaintiff in many successful disability rights cases, including a class-action suit against Kmart for its wheelchair-inaccessibility, a violation of federal law. Kmart agreed to make its stores accessible and paid the largest settlement in a disability-access case at the time. But it was Lucas’s fight for her daughter that propelled her to enroll in law school and devote her career to combating disability discrimination in child protection, custody, adoption and fostering cases. She became one of the few attorneys in the country specializing in that field. She also helped lead the effort to change Colorado law so that disability alone could no longer disqualify someone for parenthood or guardianship. “When she saw something wrong that needed righting, she didn’t think: ‘What if I fail?’” says her close friend, Amy Robertson, a civil rights attorney. “She just did it.”
Along the way, Lucas adopted three more children, all of whom had significant physical and cognitive disabilities. Two of her four children are nonverbal and use wheelchairs. Medicaid paid for Lucas’s aide and two aides for the children, a much cheaper and more humane choice than institutionalization. The aides helped with house chores and driving, administered medication, managed Lucas’s ventilator and operated feeding tubes for her and two of her children. But it was Lucas who decided which programs the children should attend, what services they needed, which doctors they’d see. She was the one who cooked their dinner, sewed their Halloween costumes, redirected them when they misbehaved, calmed them when they got upset and snuggled with them in bed. “If Carrie had any lack of confidence about mothering, she never expressed it to me,” says her mother, Lee Lucas. “I’m sure she must have had her moments, but she was a very, very confident person, and she always said, ‘I can handle it.’ And she did.”
Lucas also didn’t view her disabilities as a barrier to her favorite hobbies: road trips and camping. Most summers, she and all the kids, the three wheelchairs, the big tents, and the aides, packed into her very large van, would all head off. One year, they drove to the South for a civil rights tour. But mostly, they’d head to national parks, relying on wheelchair-accessible paths through the woods to camp or go fishing, so her kids could do what she did as a kid. In August 2018, her friend Kim Jackson, whose disabilities were similar to Lucas’s, joined a trip to Yellowstone. She and Lucas fell in love and remained partners for the last six months of Lucas’s life.
Lucas had long worried about what would happen to her children, now all adults, once she was gone. She knew they’d all need lifelong caregivers. She worried they’d be separated and lose touch with one another. She needn’t have worried. As Lucas lay in the hospital, dying from complications of a trachea infection that led to septic shock, Courtney reassured her again that she would take over her children’s care. Courtney and her family moved into Carrie’s home — a tight fit, but it provided Lucas’s children with stability amid the upheaval.
Ruth Padawer is a contributing writer for the magazine.