Here’s What Sheryl Grossman Sent Every Maryland Senator Today

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[Sheryl’s personal story and compelling message applies to EVERY STATE with an assisted suicide bill.]

Sheryl Grossman, middle aged woman, thin with long dark hair

Dear Senator:

As a disabled MD resident, I implore you to vote no on this very harmful legislation.  What has been marketed as a bill increasing choice of those with terminal illness (who almost always meet the federal definition of disability) in actuality reinforces stereotypes and systemic ableism that will do irreparable harm to disabled constituents and Marylanders as a whole.

I understand that several changes were made to the bill that some legislators believe will help protect disabled people from the harms of this bill, but they will not.

1.  Raising the age that you can get the prescription from 18-21.  This will not protect the most vulnerable–our elders who most report a fear of being a physical and/or financial burden on others.  These folks are also most at risk of being pressured, or outright abused, by family members, or caregivers when they may not otherwise do so.  Those who have intellectual/developmental disabilities who can pass the psychiatric test of knowing what can kill them or not, can still be easily swayed by those whom they trust to make decisions with them to take their lives when they may not otherwise do so.  Nothing in this change will prevent these deaths.

2.  Removing the shield that would protect Dr’s from being sued for prescribing the lethal drugs.  Since the intended recipient of the lethal prescription dies after taking it, who will be there to sue the Dr?  Especially considering that the pressure to take one’s life will likely be coming from a family member, or caregiver.

3.  Adding a requirement for a mental health evaluation.  This does not mean the provision of crisis intervention services, nor long-term mental health treatment.  The kind of evaluation that is possible in the timeframe that this situation presents, is, as described in the original bill, enough time to determine that the person understands that taking this prescription will kill them.  Cognitively understanding the consequences of taking this action is very different from psychologically making an informed decision based on all the facts.  When someone acquires a life-changing diagnosis, it takes time to gather the available information and even more time to process this information and to connect with others and begin to cope with the new reality.  When coupled with the addition of treatments or medications or therapies, the time needed to adjust to a new reality of life is often lengthened.  This bill puts bookends on what services can be provided and in what timeframes while if someone in the general public says they want to kill themselves, we rush in crisis intervention services and usually follow-up mental health services.  When someone acquires a disability, there are professionals available to assist with the adjustment to the “new normal” no matter how long that is, from a day to a few weeks or months, to forty years or more.  As children, this function is often served by Child Life Specialists.  As adults, this service is often provided by Centers for Independent Living.  This bill undermines the efforts of these whole professions to assist disabled people to live our best lives.  It reinforces the stereotype that our quality of life is poor and that we are not worthy of life, without giving us the chance to use all of the resources there for us.

4.  Requiring that Dr’s give patients written information about treatment options available for their condition.  First, they should be doing this already and if not, then that should be addressed in a different piece of legislation, that is a Dr.’s job.  However, when someone receives a terminal diagnosis, treatment is no longer the major issue, adjusting to the new situation and living with the best possible quality of life should be the top priority.  This is not a Dr.’s job, nor specialty.  Nothing in this bill requires this piece, as I stated above.  There are whole professions dedicated to helping people adjust to life situations.  This bill makes the assumption that because of terminal diagnosis (presence of progressive disability), these services should not be required.  This is ableist and discriminatory and will turn back the clock on the progress disabled people have made in Maryland.

5.  Setting a stricter definition of who can qualify.  Despite the tweak in the language, it is an established fact that accurately diagnosing someone as having an irreversible condition and that will result in death within 6 months is near impossible.  I wasn’t expected to live past 2 and am 43 now.  I wasn’t expected to survive the first 12 hours after chemotherapy and I am here 6 years and 2 cancers later.  We have all heard of miraculous recoveries and I urge you to see that making a mistake is one thing, but allowing that mistake to lead to the prescribing of a lethal overdose is something completely different and should not be allowed.

I am including here my testimony from two years ago, most of which is still relevant to the bill before you now:  http://notdeadyet.org/2017/02/disability-advocate-sheryl-grossman-gives-moving-testimony-against-maryland-assisted-suicide-bill.html .

I urge you to vote NO on S311

Thank you:

Sheryl Grossman
Community Living Advocate, National Organizing Project
National Council on Independent Living
(202) 864-4249v
Sheryl@ncil.org

We Call It the “DRM” – And It’s Needed More Than Ever

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Diane Coleman: short haired woman with glasses and a breathing mask

I lived my first thirty years with no idea that the DRM existed. The Disability Rights Movement. It’s very existence turned my shame to pride. And the DRM has done that for millions of us, but millions more have no idea still.

“Better Dead Than Disabled” – that message permeates our culture, in the looks and the looks away.

But the DRM is here to stay. It’s tough as nails, and gentle as a whisper of love. And it’s needed like never before.

On so many fronts, the value of our lives is put into question. Threats to healthcare, to pre-existing condition coverage, “futility” policies, and forcing people of all ages into institutions, out of sight and out of mind. And offering doctor prescribed assisted suicide.

In an aging society, as Hemlock Society co-founder Derek Humphry wrote, “…economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.”*

Our voice is needed now, needed to fight for our lives and the lives of others before they are lost to assisted suicide mistakes, coercion and abuse. Powerful articles by disability advocates on these dangers have been published in mainstream press across the country in the last two months.

Legislators in Maryland and New Jersey are expected to vote in the next days. Other states with active bills include Rhode Island, Connecticut, Massachusetts, New York, Nevada, Maine, and more.

Please add your voice to our “resistance”, in whatever way you can.

* Derek Humphry & Mary Clement, “Freedom to Die: People, Politics and the Right to Die Movement” (2000).

Video of the Day of Mourning – A Quiet Call for Justice

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A month ago, we shared an announcement from the Autistic Self Advocacy Network asking people to participate in the annual Day of Mourning.

On Friday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers.

In the year since our last vigil, our community has lost over 70 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. . . .

In 2019, Day of Mourning events will be held in 33 U.S. cities as well as 9 international cities.

Last year, one such event held in Rochester, New York was recorded by filmmaker Peter Edmondson, who put together a short and very moving video we’d like to share:

Carrie Ann Lucas Dedicated Her Amazing Skills To Save Lives

Carrie Ann Lucas, Our News & Commentary Blog
Carrie Ann Lucas – A smiling woman with short curly hair, glasses, ventilator tubing and a black sleeveless blouse.

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

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.

Honoring Carrie Ann Lucas

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Not Dead Yet, and the whole disability rights movement, has lost a powerful champion. Below is an important statement from Carrie Ann Lucas’ Facebook page. I’ll share more on her incredible work related to NDY soon, but for now this:

Carrie Lucas

The disability community lost one of its fiercest advocates on 2/24/19. Carrie Ann Lucas, a disability rights attorney who pioneered representation for parents with disabilities, 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. She was 47 years old.

Carrie Ann Lucas is known around the state and the country for her strong advocacy.

Carrie Ann grew up in Windsor, Colorado and had several careers including being a teacher, ordained minister and legal assistant before becoming an attorney. Carrie graduated from Whitworth College in 1994, traveled and taught in Saipan, and then returned to the states to attend the Iliff School of Theology. She received a Master’s of Divinity with Justice and Peace Concentration from Iliff in 1999, but during her time there, became increasingly involved in disability advocacy. After she graduated, she started working as an advocate and later legal assistant for the Colorado Cross-Disability Coalition, investigating, preparing, and monitoring disability rights cases and providing informal advocacy on a wide range of topics. While there, she was granted a full scholarship as a Chancellor’s Scholar at the University of Denver School of Law.

Following her graduation from law school in 2005, she was awarded a prestigious Equal Justice Works fellowship to create a program to combat discrimination that impacts parenting for parents with disabilities. This program, initially started within the Colorado Cross-Disability Coalition, spun off to be Disabled Parents Rights, one of the only organizations in the country devoted to this issue. She also became a national expert and trainer on the rights of parents with disabilities and, through her legal advocacy, secured decisions upholding and promoting those rights here in Colorado. Most recently she was recruited by the Colorado Office of Respondent Parents Counsel to help set up a program to train other lawyers around the state to replicate the sort of impact she was making.

In addition to these professional activities, Ms. Lucas was an advocate with the disability rights groups ADAPT and Not Dead Yet, speaking, teaching, writing, testifying, and protesting on disability justice and the rights of people with disabilities to healthcare and respect. She was also a talented photographer and cook. Carrie Ann was an activist at heart. She graduated from EMERGE, ran for Windsor City Council in 2017, and was planning on additional political activity. She was chair of Colorado Democrats with Disabilities for the past several years. She was a member of the ADAPT group that protested in Cory Gardner’s office and got arrested to help save the Affordable Care Act in 2017, particularly Medicaid. She served on the Board of Directors of the American Civil Liberties Union of Colorado. She was active with Not Dead Yet and fought hard against physician assisted suicide and the notion that life with a disability is not worth living. She demonstrated every day how amazing life with a disability can be. She was given the Intersectionality Award from The Civil Rights Education and Enforcement Center in 2016. She was a leader in passing HB 18-1104 which changed Colorado law to make sure that disability was no longer a reason to remove a child from a parental home. There is much, much more.

Carrie became a lawyer to practice family law after lived experience of discrimination against parents with disabilities firsthand. In 1998 fostered and later adopted her oldest daughter, Heather Lucas. Heather has significant developmental disabilities and was languishing in another state. She fostered and was preparing to adopt a second child, but that was disrupted due to prejudice against parents with disabilities. Where most people might be upset and feel helpless, Carrie Ann was furious and went to law school to represent parents with disabilities.

Carrie adopted three more children over the years, Adrianne Lucas, Azisa Lucas and Anthony Lucas. All of her accomplishments centered on her dedication to her children and her role as a mother. All of her children have significant disabilities and Carrie Ann always made sure that they were not only educated and included in their communities, but that they were loved, respected, and supported in their individual hopes and dreams.

Carrie had a severe neuromuscular disease, a rare form of muscular dystrophy. She relied on a power wheelchair, and had used a ventilator for years. However, her death was premature and caused by inappropriate and brutal cost containment procedures of an insurance company. Because Carrie Ann worked for the state, she had use state insurance which was primary ahead of her Medicare and Medicaid. In January of 2018 she got a cold which turned into a trach and lung infection. Her insurance company UnitedHealthcare, refused to pay for the one specific inhaled antibiotic that she really needed. She had to take a less effective drug and had a bad reaction to that drug. This created a cascade of problems, loss of function (including her speech). United Healthcare’s attempt to save $2,000 cost over $1 million in health care costs over the past year. This includes numerous hospitalizations, always involving the Intensive Care Unit which is par for the course for ventilator users.

Carrie Ann had hoped to spend a lot of time in 2019 using her tragedy to work to fix our broken health care system. Her blog www.disabilitypride.com provides more details. For all intents and purposes a shero of our community was murdered in the name of cost containment. This is why we MUST fight these measures with all we have. Insurance companies and government programs must not be allowed to deny people what they need. Just last month she was having to ration her insulin for her type 1 diabetes because of the same insurance company and how impossible it is to work between private insurance and Medicare and Medicaid. This is a great example of why people with disabilities should not be forced into insurance or health plans and why we need Medicaid as the primary health delivery system for this country.

In addition to her four children, Carrie Ann is survived by her parents Phil and Lee Lucas, sister Courtney Lucas, brother Eric Gover, her niece Danielle Mann, nephews Cody Mann, Gavin and Colin Lucas, Danielle’s partner Aaron Boone and their sons Izaiah, Kyal and Eli, Gavin’s wife Kathleen and their daughter Emily and Colin’s son Dakota. She is predeceased by a sister, Kelli Mann and her grandparents. She is also survived by her partner Dr. Kimberley Jackson, a CCDC Board member and activist in the disability community. She will be missed by a wide circle of friends and colleagues throughout the country.