By Diane Coleman: For More Info, Go Here…
ngd-More about Carrie Ann’s work and the events leading up to her death…
Across the country, people who knew and worked with Carrie Ann Lucas are mourning her untimely death at the young age of 47. 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. We’re grieving, and we’re angry.
We’re also honoring her amazing life. Carrie began serving on NDY’s national Board in January 2013. She made so many unique and abiding contributions to the disability movement that it would be impossible to capture them all. But here are some of the ways that Carrie worked to save lives through her incredible efforts on behalf of Not Dead Yet.
World Federation Protest
In September 2014, Carrie traveled from her home in Colorado to Chicago to participate in the NDY protest of the World Federation of Right To Die Societies’ biannual conference. She was a very skilled photographer who visually documented three days of protest activities which can be viewed via a link on our website page about the protest. One of these photos is the banner on our home page.
Resisting Assisted Suicide in Colorado
Carrie took the lead in organizing a group of disability activists to fight assisted suicide bills and initiatives in Colorado. Not Dead Yet Coloradomembers testified beginning in February 2015, as shown in a press release: Disability Activists from Not Dead Yet and Other Colorado Organizations to Testify in Opposition to Colorado Assisted Suicide Bill. The bill died in committee, as reported by the Denver Post.
But that wasn’t the end of the issue. Several months later, NDY Colorado Issued a “Media Advisory Opposing Proposed CO Constitutional Amendment on Assisted Suicide.” The amendment didn’t go anywhere.
The bill came back in 2016, and Carrie testified before the Colorado Senate State Senate, Veterans, and Military Affairs Committee on February 3rd that year:
“I am a person with multiple disabilities. I have a progressive neuromuscular disease that has caused me to lose muscle function throughout my entire body. I have weakness in every muscle in my body, including my facial and eye muscles. My organs are affected, I have low vision, and I am very hard of hearing. I have a gastrostomy tube, and I am dependent on a ventilator to breathe. Without my ventilator, I don’t have years to live. I don’t have 6 months, 6 weeks, or 6 days, I have hours. I have a terminal condition – very much like ALS, and I would be covered by this bill. I understand the sponsors have said this bill is not for the disabled, but respectfully the sponsors are incorrect. This bill directly affects me, my family and my community.
“If I were to become depressed, either situational depression, or major depression, and this bill passes, I could go to my doctor and ask for a lethal prescription. Because I have a disability, and because physicians are terrible at evaluating quality of life of people with disabilities, I would likely be given that lethal prescription, rather than be referred for mental health treatment. And if my doctor did not give me the lethal prescription, I could simply doctor shop until I found one who would. A woman in my situation but without my disabilities would not get a lethal prescription, and would most likely encounter a vigorous effort to ensure she did not take her life. That is disability discrimination.”
She also put on her lawyer hat and further explained what’s wrong with the bill from that perspective. To read her full testimony, go here. Both Carrie and Anita Cameron, who lived in Colorado at that time, also had op-eds published which are excerpted with links in an NDY blog. Again, the bill did not make it through the committee.
So next, assisted suicide proponents went for a ballot measure, which Carrie, the Colorado NDY group and ADAPT protested by holding a funeral march: Disability Activists from Not Dead Yet and ADAPT Engage in Funeral March to Protest Assisted Suicide Ballot Measure. Unfortunately, the ballot measure passed.
Still, it is never too late to educate people about the dangers of making assisted suicide another “medical treatment” in our insensitive and profit conscious healthcare system. This past November, we blogged about how Carrie did just that on a Facebook program called “Imperfect Union”, which produced a Video of Carrie explaining some of the dangers of assisted suicide laws to a proponent.
Me Before You
When the ridiculous assisted suicide movie “Me Before You” came out, Carrie rolled up her sleeves and applied her graphics skills to pull together material from our sister organization, Not Dead Yet UK, and develop a banner and flyers that disability activists around the country used to hold protests of the movie. Many people sent photos from their protests to her, so she put them together in a video, accompanied by Johnny Crescendo’s brilliant song “Not Dead Yet.”
VIDEO: The Disability Community Responds to Me Before You movie
Of all Carrie’s contributions to NDY’s work, the one I think about most often is her leadership in the effort to save the life of 14-year-old Jerika Bolen. Like Jerika, Carrie along with several of us in NDY experienced teenage years as a person with serious, progressive neuromuscular disabilities. Jerika said she wanted to die, but she was not treated like a suicidal nondisabled 14-year-old would be. We were horrified as her story unfolded. We received hate mail from nondisabled people in response to our efforts.
After Jerika’s death, Carrie did a very moving public radio interview explaining the disability discrimination that ultimately led to her death. John Kelly handled the creation of a captioned video of media photos of Jerika along with the interview to ensure that Carrie’s message would be heard and seen as widely as possible. Here’s a little of what she said:
“If we’re going to let children make these decisions, then we should be able to let children make these decisions regardless of disability. So we have to then be willing to say that the depressed fourteen year old who broke up with her boyfriend who wants to die should get to die as well. Otherwise this is disability discrimination, because some children get intensive suicide prevention and other children don’t. And it’s based only on disability, and that’s discrimination.
”Either it’s okay for everybody or it’s not okay. It’s either one or the other. But we should not be saying it’s okay for a disabled teenager to die, because people who don’t have disabilities have an imagination of what quality of life should be like for a disabled person, and that is poor.
“Because they can’t imagine in their own heads what it would be like to live with a disability, when in fact those of us living with a disability, with the same disability are telling you, no, it’s really not bad. There’s something else going on here because we have that lived experience. We know that. We are the experts in this.”
More about the struggle to save Jerika’s life is available in the NDY blog here.
Carrie’s work earned her center seat in the annual award given by New Mobility magazine which named those who fought to save Jerika as its People of the Year – The Resisters. In a drawing, the magazine depicted Carrie as the superhero she was.