Carrie Ann Lucas, a well-known and beloved national disability rights icon from Denver, Colorado, has died at age 47.

A fierce and passionate disability rights advocate and attorney, Lucas is perhaps best known for pioneering legal representation for disabled parents in danger of losing custody of their children. Lucas had a rare form of muscular dystrophy and was the adoptive mother of four children with disabilities. She  experienced discrimination first-hand while adopting her daughter, Heather, in the late 1990s, and this experience inspired her to attend law school at the University of Denver.

“Throughout her life, Carrie taught, protested, litigated, wrote, and advocated for a broad understanding of civil rights and human dignity,” says Amy Robertson, co-director of the Denver-based Civil Rights Education and Enforcement Center. She and Lucas met when Lucas sought legal counsel to secure disability-related accommodations while Lucas was in divinity school, and the two had worked together closely since then. “Carrie consistently brought an intersectional approach to her work, bringing the parental perspective to disability rights, and vice versa — she insisted on disability rights in civil rights spaces, and the importance of voices of color and LGBTQI people in disability-rights spaces.”

Following her graduation from law school in 2005 Lucas was awarded a prestigious Equal Justice Works fellowship to create a program to protect the rights of parents with disabilities. That program grew into the Windsor, Colorado-based nonprofit, Disabled Parents Rights, which Lucas directed.

One of the only lawyers in America who specialized in tackling discrimination against parents with disabilities, Lucas became a sought-after expert and legal trainer in her field. She won many legal decisions upholding and reaffirming the rights of parents with disabilities in Colorado. Most notably, her leadership and advocacy led to the passing of Colorado House Bill 18-1104 in 2018, which prevented a parent’s disability from being a reason a child could be removed from their home. “We will likely run a bill to rename HB 18-1104 the Carrie Ann Lucas Act,” says a Facebook post from the Colorado Cross-Disability Coalition. “This was the bill that stopped child protective services from making disability a negative in assessing capacity to be a parent, an issue that was Carrie’s passion for decades and reason for becoming a lawyer. When that is introduced, heard and debated, there will be opportunity for people to show up and testify about Carrie.”

Tireless Advocate

Lucas also fought tirelessly against assisted suicide and the often-perpetuated notion that a life with a disability or illness is not a life worth living. In 2016, hers was one of several disability rights organizations requesting an investigation into the assisted suicide of Jerika Bolen, a 14-year-old from Wisconsin with spinal muscular atrophy who asked to die following a blowout prom she threw herself.

“Wisconsin law is clear that unless a child is in a persistent vegetative state, parents do not have the ability to withdraw care and neither do children have the legal capacity to make those decisions for themselves. Therefore, we believe the plans she’s discussed in the media are a violation of Wisconsin law and we believe that children, regardless of the severity of their disability, are entitled to equal protection under the law,” Lucas told New Mobility at the time.

Lucas was often quoted in New Mobility on a variety of issues and in 2016, she was named New Mobility‘s Person of the Year along with four other activists with disabilities recognized for fighting against the trope that they were better off dead than disabled. She was actively involved in disability rights groups like ADAPT and Not Dead Yet, dedicated to affirming the value of the lives of people with disabilities and upholding their civil rights through direct action, including civil disobedience.

Lucas participated in the ADAPT actions in the summer of 2017 that were widely credited for helping to save Medicaid and was part of a 58-hour sit-in at Colorado Sen. Gardner’s office. That demonstration ended with her and other advocates being arrested, and she earned an additional citation for politely, but firmly, refusing to show a police officer how to work her power chair. “While I would not resist arrest, I was not willing to help the police officers learn to operate my wheelchair,” wrote Lucas in a lengthy Facebook post at the time. “Due to my disability, I have adaptive controls for my chair, and I do not use a traditional joystick. The adapted control is either Velcroed to my tray or held in my hand. It is easily broken and impossible for someone else to use.”

Catastrophic Insurance Denial

In 2019, Lucas had planned to continue to use her advocacy experience and legal know-how to help fix the continuing issues with the American healthcare system, issues that many believe contributed to her premature death at the age of 47.

In January 2018, her insurance company refused to pay for a specific inhaled antibiotic she had used successfully in the past to treat a lung and trach infection. Instead, she had to take a less effective drug, which sparked a cascade of complications that included a loss of speech and numerous trips to the I.C.U. Before her eventual death, she detailed many of her struggles with the health care system in her last blog entry dated January 4, 2019.

“Carrie was always generous with her time and knowledge, whether in sharing how to help a reader keep custody of her child, comment on a hot advocacy issue, or share where to find family-sized wheelchair accessible tents,” says New Mobility executive editor Josie Byzek. “I can’t believe she is gone and am angry at our broken for-profit health care system that unapologetically weighs our lives against its spreadsheets.”

“Over the last year, we watched as insurers denied what she needed and doctors couldn’t take the time to listen to one of the sharpest minds in our movement explain how to integrate their treatments with her body’s needs,” wrote Not Dead Yet in a tribute to Lucas, a board member of the organization since 2013. “We’re grieving, and we’re angry.”

Carrie Ann Lucas is survived by her children Heather, Adrianne, Azisa and Anthony; parents Phil and Lee Lucas; sister Courtney Lucas, Eric Gover, and nieces and nephews. She is predeceased by a sister, Kelli Mann, and survived by her partner Dr. Kimberley Jackson, a CCDC Board member and activist in the disability community.

Lucas’ service will be held on Friday, March 1, 2019 at 10:30 a.m. at Faith United Church of Christ, 1020 Walnut Street, Windsor, Colorado. The family has requested that people wear bright colors.