Carrie Ann Lucas Dedicated Her Amazing Skills To Save Lives

This article was published by Not Dead Yet on Feb 25, 2019.

Diane Coleman

By Diane Coleman
Not Dead Yet President & CEO

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 Colorado members 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

Jerika Bolen

O

Jerika Bolen

f 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.

Disability bias killed UK teen

By Taylor Hyatt

Policy Analyst & Outreach Coordinator, Toujours Vivant-Not Dead Yet.

Taylor Hyatt

Last week, the death of 19-year-old Tommy Swales made headlines in the UK. He had been diagnosed with Friedrich’s ataxia – a rare genetic disorder that causes heart disease and a gradual loss of mobility – four years ago. The teen fell easily and walked with a slouch, using a backpack to hide it. Those close to him were asked not to acknowledge his condition. The sudden change in his abilities caused him to become withdrawn, depressed, and isolated. He reportedly researched the assisted suicide organization Dignitas. While the family was out for the afternoon, he took his own life.

My first reaction to this story is grief. A young man who should be excited about everything life has to offer does not get to partake in it. His family and friends are left to mourn and wonder what could have been. Stronger than the sadness, though, is my frustration at the combination of factors that pushed him over the edge.
 
He told his mother, Michelle, about his greatest fear: having to use a wheelchair for the rest of his life. Before his death, he traveled to the United States, attended concerts, and cheered on his favourite soccer team – all activities he feared missing once he relied on a mobility device. After living without a disability for so long, learning to navigate the world all over again might seem overwhelming…but it is possible. Why didn’t anyone tell him that wheelchair users of all ages can still travel, work, and have active social lives? No mention was made of referrals to disability supports after his diagnosis. He also refused assistance from mental health professionals. Like many other youth with disabilities, he was isolated from a larger community that could have given him hope for the future.

The most concerning part of the story is his mother’s response. In statements given to media, Ms. Swales said, “Tommy tackled life with a quiet dignity and amazing strength and courage. We take comfort from all of this, alongside the knowledge that Tommy is where he wanted to be.” She noted that although people who have depression should reach out for support, her son was “different” and “didn’t want help” for his suffering.

I am floored that his death was accepted so casually. No one would express relief at a non-disabled person’s suicide. It seems everyone involved saw disability as a fate worse than death. Why did the family go along with this? If the average teen’s desire to die was treated the same way, outside authorities would intervene. As stories like Jerika Bolen’s demonstrate, disability is the only “acceptable” reason for a young person to end their life. Friedrich’s ataxia was the diagnosis he received. Ultimately, it was society’s bias against disability – and the fear of having to contend with this bias – that drove him to despair. He was not the first to respond this way; nor will he be the last. 

Life with a disability is nothing to fear or be ashamed of. How many more lives will be lost before this is understood?

NDY Statement On Mourning the Death of Jerika Bolen

This statement was published by the disability rights group Not Dead Yet on Sept 23, 2016.

Diane Coleman

By Diane Coleman, President - Not Dead Yet.

Today disability advocates mourn the death of Jerika Bolen, a 14-year-old black, gay teen with spinal muscular atrophy type II (SMA), who died in hospice after requesting help to end her life. Earlier this summer, a call for donations to support her dream of a “last dance” prom in her honor focused national media attention on her request to die, which was characterized in the media as “brave” and “inspirational.”

SMA Type II is not a condition that is typically fatal in children and teens. In fact, while some people with SMA die in younger adulthood due to respiratory complications, people with type SMA Type II often live into their 60s and beyond. Certainly, SMA would not result in the death of a fourteen-year-old who is receiving appropriate medical care. Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Jerika had as a teenager live long into adulthood.

While some media have attacked disability advocates who called for an investigation of the extremely questionable medical care provided to Jerika, it would appear that no authorities felt it necessary to obtain answers to the many questions the reported facts raise. In the midst of our shock, grief and despair at a system that would so callously throw away the life of a beautiful disabled girl, we have asked, and continue to ask, those questions.

Regarding physical pain . . .

Jerika Bolen

What was the cause of Jerika’s reported extreme physical pain? Contrary to media misinformation, pain is not characteristic of SMA Type II, so what caused her pain?

Did Jerika have any competent doctors who specialized in SMA Type II or neuromuscular disabilities?

What explains the reported 30-38 surgeries that Jerika experienced between ages 8 and 14? This number of surgeries is highly unusual for people with SMA Type II. Were these surgeries the source of her pain?

Were pain relief experts ever consulted to address Jerika’s pain? Why did she wait to take medication until her pain was at a level 8 or higher on a scale of 10, while pain management physicians advise taking medication much earlier, “nipping it in the bud” to prevent pain from reaching that level?

Regarding depression and emotional pain . . .
Given the well established ways that suicidal ideation in teens is addressed to prevent tragedy, what forms of counseling or support were enlisted to address Jerika’s desire to die?

Was any qualified professional trained in teen suicide prevention brought in to counsel Jerika? Were any professionals working with Jerika aware of studies finding that quality of life is not correlated with physical impairment or use of non-invasive breathing support?

From whom did Jerika get the idea that she could go into hospice and get assistance to end her life? She had reportedly spoken of this off and on for a few years. What were the motivations of any adult who gave such an idea to a child?

Was any qualified professional with a similar disability, someone familiar with the emotional issues facing a black, disabled, gay teen, brought in to counsel Jerika?

Regarding the systemic medical and legal issues . . .

Why do Wisconsin governmental authorities allow children with non-terminal disabilities to have their lives ended based on adult decisions to withhold medical care, while this is not permitted for non-disabled children?

What were the qualifications of the doctor who ordered hospice for Jerika? Was it the same doctor or facility that conducted the extreme number of surgeries?

Why would a hospice provider participate in ending the life of a child who is not terminally ill? Besides discontinuing Jerika’s nightly bipap breathing support, what additional steps resulted in her death after only 18 days from her scheduled entry into hospice?

Disability advocates who mourn Jerika’s untimely death would like these questions to be answered, but we’ve seen the media frenzy in almost exclusively one-sided applause for her suicide, no questions asked. Our grief at the tragedy of her loss is exponentially magnified by the certainty that the story told in the press will inspire others with disabilities and their parents to repeat this tragedy.

Those of us with disabilities dream of equality and justice. Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. We ask one last question: What might have happened if Jerika’s request for a “last dance” had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?

Jerika Bolen: Hard Questions Being Asked

This article was written by William Peace and published on his blog on Sept 7, 2016.

William Peace is a Syracuse University Professor and disability rights leader.

William Peace with students

Jerika Bolen is a 14 year old with SMA type two. She has explicitly stated she wants to die. Last month she had her "last dance" which received a great deal of press. Since her last dance, she has been completely out of the news. No follow up stories have been published in mainstream media outlets. I assume the mainstream press is waiting for Ms. Bolen to die. Her death has been scripted. This makes me shudder. The mainstream press loves this story. Plucky terminally ill child states she has had enough. She is in pain all the time. Her quality of life is unacceptable. She does not want machines to breathe for her. Oh the heart break. This rhetoric sells newspapers, generates high television ratings, and is the wildly effective click bait (paging the mighty.com).

Jerika Bolen

The problem with the above story is that it makes no sense. Many people with the exact same condition as Ms. Bolen lead rich and full lives. Most live well past their teens and many live into middle age. Most do not experience the type of pain Ms. Bolen describes nor do they have over 35 surgeries as has been reported by various news outlets. SMA type two is not necessarily a fatal or terminal condition. Could Ms. Bolen truly be terminal will? Yes, this is a possibility. It is also equally likely she could live many more years if not more decades. The only person that can answer these questions are her physicians and mother. They are not speaking to the press. In this void, some people are asking the hard questions the mainstream press has not thought of much less asked. Carrie Ann Lucas, executive director of Colorado based Disabled Parents Rights, is asking child protection services to investigate. Lucas is not alone. Other organizations have asked the same question: Not Dead Yet (I am on the board of directors), NMD United, and ASAN, Autistic Self Advocacy Network. Many people with SMA type two have discretely and privately sought to contact Ms. Bolen and her family. No wants to intervene in the case as one news outlet maintained. People such as Lucas and many others with a disability are asking a basic question: why has Ms. Bolen been lauded as brave and heroic? Why did 1,000 people from all over the nation show up at the "last dance"? Why do people with a disability that express a desire to die receive overwhelming support? Why do snuff films like Me Before You reinforce the notion that death is preferable to life with a disability?

As I see it, this was a misleading story from start to finish. No human dies in social isolation. Life and the manner in which we die has meaning. For decades, people with a disability that boldly and proudly proclaim a desire to die are lauded. The tracks to death are greased with over flowing support. At no point have I read a mainstream news article that addresses whether a 14 year old has the capacity to make life and death decisions. I have not read any story that asks why child protective services has not investigated the Bolen case. I have not read whether Ms. Bolen has received appropriate psychiatric care or even a psychiatric consultation. I have not read any story that discusses whether a minor has the legal right to die. What I do know is that if a morbidly sick non disabled child expressed a desire to die and had parental support an investigation would be launched instantly. Instead, we have a child with a disability that has expressed a desire to die and has received nothing but support from family, physicians, and the public. This troika of support might be lethal.

Carrie Ann Lucas wrote:

This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication.

There is so much we do not know about Bolen. In the stampede of support to end Bolen's life all nuance has been lost. She is terminally ill. She is in pain. She wants to die. Life is never that simple. Death is not that simple. Diane Coleman wrote:

as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.

I think it behooves all of us to ask these questions. I think it is the obligation of those directly involved in Bolen's care to answer the very basic questions multiple disability rights organizations are asking. Bolen and her mother chose to make the case very public. They requested financial support and a great deal of money was donated to their "cause". With this publicity comes responsibility. The stakes in this case could not be any higher. We are discussing the life of a minor. Minors have rights and deserve protection. Those protections extend to minors with disabilities like Ms. Bolen.

Disability Advocates Push for Better Healthcare rather than death for Jerika Bolen

Originally published by the disability rights group, Not Dead Yet, on September 7, 2016 

Diane Coleman

By Diane Coleman - President of Not Dead Yet.

Many have heard of 14-year-old Jerika Bolen’s plans to die, which received extensive news coverage over the summer. Disability advocates may have wondered why the story didn’t appear in the NDY blog sooner. The short answer is that, behind the scenes, we were trying to push for better health care, especially expert quality pain relief to address the primary reason Jerika stated for wanting to die. We were trying to respond to her comments about her life.

Jerika Bolen

On Sunday, Jerika was scheduled to go into hospice, even though her disability is no where near the “terminal” stages. For twelve hours a day, at night, she uses breathing support, a biPAP, similar to the more common CPAP, with a breathing mask. (I use one about 20 hours a day for a similar neuromuscular condition.) As Carrie Lucas of Disabled Parents Rights wrote in our letter to the Wisconsin Department of Children and Families:

This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication.

Many of those who joined in our letter are adults with Jerika’s specific diagnosis, SMA Type II, leaders in NMD United. Many of us remember middle school as a difficult time, combining the usual teenage issues with the experience of a highly stigmatized identity in our image conscious society.

And we have big questions about her reported 38 surgeries and high levels of pain, questions about the competence of her doctors. So we urged the state agency to intervene and secure better quality health care and pain relief for Jerika, as well as disability competent mental health counseling.

Based on news coverage of our August 4th letter, Disability groups seek to intervene in teen’s plan to die, the Wisconsin protection and advocacy organization reportedly made the same request.

But as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.