Disabled rights advocate Carrie Ann Lucas had a progressive neuromuscular disease. Her personal care assistant Cherish Ross stands in the background.

(John Daley/CPR News)

Julie Reisken has only positive things to say about her longtime friend and fellow disability rights advocate Carrie Ann Lucas.

Reisken, the executive director of Colorado Cross-Disability Coalition, also knows Lucas wouldn't stand to hear any of it.

"She would be anywhere between rolling her eyes or ready to kick my butt," Reisken said.
 
Lucas died Sunday, Feb. 24 at the age of 47. For decades, the fierce activist and lawyer fought for parents and children with disabilities and against repeal of Obamacare, among other causes.
 
It was her passion as a mother of adopted children that first entered her into the fray.
 
Lucas was in the process of adopting her second child when she came face-to-face with the discrimination parents with disabilities face. The family that had adopted out the child decided they didn't want them living in a home with people with disabilities, and took the child back.
 
"Most people would just get depressed and give up, because that was an awful, horrifying experience," Reisken said. "Carrie went to law school. She wanted to practice family law and she wanted to disrupt the pervasive bias that said people who have disabilities can’t be parents."
 
Lucas went on to shepherd a bill through the state legislature that removed disability as a cause to remove children from a home.
 
In the last few years of her life, Lucas was even recruited by the state to train judges and other officials.
 
Lucas was a tireless activist when she wasn't arguing cases. She advocated against the "End of Life Options Act," approved by voters in 2016, which allows terminally ill people to get medical aid if  they choose to end their own lives. Lucas said she feared that doctors would too easily allow people with disabilities to end their lives.
 
"I have seen how my life has been devalued by the medical system. I’ve been discouraged from seeking medical treatments before in the past, medical treatments that have extended my life by more than a decade," Lucas told Colorado Matters in a 2016 interview.
 
In 2017, Lucas participated in a sit-in at Republican Sen. Cory Gardner's office protesting the proposed repeal of Obamacare. She led fellow protestors in a chant as they were carried out of the building by police and arrested: "Rather go to jail than to die without Medicaid."
 
Kalyn Heffernan, a disability rights activist and now Denver mayoral candidate, was in Gardner's office alongside Lucas.
 
“Carrie Ann Lucas fought really hard everyday. I know that she would want us to continue fighting and continue sharing what we know with the rest of our community, because everything we do is complicated," Heffernan said.
 
Lucas, who was a quadriplegic and used a ventilator full-time, caught a cold in January 2018. The common virus is dangerous for people who use ventilators, and it led to an infection in her lung and trachea. Reiskin said Lucas and her doctors advocated for a specific kind of antibiotic, but Lucas' insurance refused to pay. She was started on a less effective antibiotic, and a cascade of problems ensued.
 
Reisken and others believe the insurance company, United Healthcare, bears responsibility for Lucas' death. Her obituary states that Lucas "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."
 
United Healthcare pushed back in a statement:
 
"We are saddened to hear of Ms. Lucas’s passing. While we cannot provide any comment on her specific case because of privacy rules, we work extensively with members suffering from chronic conditions to help them get access to care covered under their plans."
 
Even as Reisken remembers Lucas' life, she warns others not to fall into "inspiration porn," the trap of thinking that people with disabilities should be viewed only as an inspiration to others. Lucas' advocacy leaves much to be celebrated, and a hole for the community to fill.
 
"A huge, unfillable gap, particularly on the issue of parenting with a disability," Reisken said. "She was the person," many in the community called on for help.