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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).

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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:

Day of Mourning - CDR 2018 - YouTube

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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.

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Not Dead Yet by Diane Coleman - 1M ago

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.

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Horacio Esparza

En julio de 2008, Horacio Esparza asumió el cargo como director ejecutivo del Centro de Vida Independiente Progress en Forest Park, Illinois. (Durante 12 años, yo también desempeñé el mismo papel, durante el cual también fundé y fui presidente de Not Dead Yet).

Horacio es invidente desde la infancia. Nació en México, a la edad de once años, convenció a sus padres para que lo dejaran ir a una escuela para niños invidentes. Finalmente, emigró a los EE. UU., Se nacionalizó ciudadano de éste país y su trayectoria de trabajo lo calificó para desempeñar su labor en el Centro Progress.

Horacio empezó a trabajar en el Centro Progress como Coordinador de Vida Independiente, ayudando a las personas con todo tipo de discapacidad a adquirir la información y las habilidades que necesitan para lograr sus objetivos personales. Poco tiempo después, fue nombrado Director del Centro de la oficina Satélite en el Sur, que sirve a los suburbios del sur del Condado de Cook, donde una parte importante de la población es latina.

Con el tiempo, Horacio habló de sus sentimientos sobre el suicidio asistido y Not Dead Yet. “Hace diecinueve años, cuando mi hijo tuvo un desprendimiento de retina, si una ley de suicidio asistido nos hubiera permitido a mi esposa y a mí suicidarnos, tal vez hubiéramos tomado esa decisión … Afortunadamente, encontré el Centro Progress y Not Dead Yet … Y eso cambió nuestras vidas. Ahora somos felices y exitosos. Una cosa que mucha gente ignora es que necesitamos motivación para vivir y no motivación para morir. Las personas que desean morir no se debe a su dolor físico, se debe a una falta de motivación “.

Quienes defienden la política pública de suicidio asistido argumentan que la motivación para vivir puede ser relevante para las personas con discapacidad, no para las personas con una condición terminal. Pero Horacio ha experimentado este problema en su familia cercana:

“Hace cuatro años, mi hermana mayor ( de 74 años) falleció. Tenía mieloma múltiple y nunca mencionó la palabra “morir”. Su mieloma empeoraba cada día e incluso hasta el último minuto ella expresó su deseo de vivir. Ella estuvo recibiendo consejería y todos los paliativos médicos para aliviar el dolor físico.
Mi hermana estaba motivada porque todos estábamos alrededor de ella mostrando nuestro apoyo y mostrándole cuánto la necesitábamos “.

A su madre de 95 años también se le ha diagnosticado mieloma múltiple. “Mi madre ha sido muy independiente y cuando su enfermedad le impide hacer las cosas por su cuenta, es cuando se deprime”, dice. “Ella tiene su propio departamento y las 24-7 una de sus hijas o hijos están con ella. Aunque ella tiene 95 años, nunca la hemos puesto en un asilo de ancianos. Y a veces nos dice: “No sé por qué tu padre no me llama para estar con él”, pero eso es cuando ella siente que es una carga para nosotros. Pienso que las personas con enfermedades terminales no es que quieran morir debido a su dolor físico, más bien, es cuando se les toca su dignidad, cuando sienten que los miembros de su familia no están viviendo sus propias vidas. Luego, cuando le mostramos cómo la necesitamos y cuánto la queremos, cuando le decimos lo mucho que significa para nosotros, la depresión cambia por la motivación “.

Durante varios años, Horacio ha sido miembro activo de la mesa directiva nacional de Not Dead Yet. Entre otras contribuciones a nuestro trabajo, él ha traducido al español un resumen de las razones clave por las cuales las leyes de suicidio asistido deben ser rechazadas debido a los peligros que representan para las personas mayores, enfermas y con discapacidad. Comparta el regalo de esta traducción con su familia, amigos y colegas en la comunidad latina.

Puntos Resumidos contra la Legalización del Suicidio Asistido

  • Si el suicidio asistido es legal, la vida de algunas personas terminará sin su consentimiento, a través de errores y abusos. Nunca se han promulgado garantías o incluso se han propuesto, que puedan impedir este resultado, que nunca se puede deshacer.
  • El suicidio asistido es demasiado peligroso.

> El suicidio asistido es una receta para el abuso, incluyendo el abuso de ancianos. Cuando el suicidio asistido es legal, un heredero o un cuidador abusivo puede dirigir a alguien hacia el suicidio asistido, atestiguar la solicitud, recoger la dosis letal, e incluso dar la droga – no se requieren testigos de la muerte, así que ¿quién lo sabría? No hay ningún requisito de que los fármacos letales sean auto administrados, permitiendo esencialmente la eutanasia por cualquier tercero.

> Los diagnósticos de enfermedad terminal son muy a menudo erróneos, llevando a la gente a renunciar al tratamiento ya perder buenos años de su vida, poniendo en peligro a las personas con discapacidades, las personas con enfermedades crónicas y otras personas diagnosticadas con enfermedades terminales.

> Las personas con depresión tienen un riesgo significativo.

> Una vez llenada la receta, no hay garantías. ¿Por qué faltan las garantías en el punto más importante?

  • El suicidio asistido se convertirá en la única opción que las personas de bajos ingresos pueden permitirse.

> El costo de los medicamentos para el suicidio recetado por el médico es minúsculo comparado con el costo de proporcionar tratamiento para hacer que un paciente se sienta más cómodo. Esta fuerza económica de gravedad es obvia y ya ha sido experimentada bajo la ley de suicidio asistido más antigua de nuestra nación en Oregón.

> No todas las familias apoyan. Algunos pacientes sienten que deben solicitar suicidio prescrito por el médico para no ser una carga financiera o emocional para su familia.

> Muchas familias están bajo tremenda tensión. En un momento de aumento de los costos de los alimentos, las ejecuciones hipotecarias caseras y la incertidumbre económica general, sería imprudente ignorar el papel que las finanzas jugarían al tomar decisiones al final de la vida.

> Incluso en las familias donde hay apoyo para un paciente diagnosticado con una enfermedad terminal, los pacientes podrían sentir que están siendo egoístas por no ahorrar a su familia. Esto se ha documentado en Oregon (2016) como una razón para solicitar una receta letal. Según el último informe oficial de Oregon, el 40 por ciento de los pacientes que murieron usando la ley de suicidio asistido de ese estado lo hizo para evitar ser una carga para su familia, amigos o cuidadores.

  • Las leyes de suicidio asistido no cuentan prácticamente con ninguna supervisión, y la recopilación de datos es extremadamente insuficiente.

> No hay investigación de abuso, ni siquiera una forma de denunciarlo. Los estados donde el suicidio asistido es legal hoy en día, como la ley de DC, no denuncian abusos y problemas.

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Horacio Esparza – man in business suit and sunglasses holding microphone

In July 2008, Horacio Esparza stepped into his role as executive director of Progress Center for Independent Living in Forest Park, Illinois. (For 12 years, I had served in that same role, during which time I also founded and served as President of Not Dead Yet.)

Horacio has been blind since early childhood. Born in Mexico, by the age of eleven, he convinced his parents to let him go to a school for blind people. Eventually, he immigrated to the U.S., became a citizen, and built a work history that qualified him for his job at Progress Center.

Horacio had first worked for Progress Center as the Independent Living Coordinator, assisting people with all kinds of disabilities to acquire the information and skills they needed to achieve their personal goals. Later, he became the Director of the Center’s South Satellite, which served the suburbs of southern Cook County, where a significant portion of the population is Latino.

In time, Horacio explained something of his feelings about assisted suicide and Not Dead Yet. “Nineteen years ago when my son had a retinal detachment, if an assisted suicide law would have allowed me and my wife to commit suicide, maybe we would have made that choice… Fortunately, I found Progress Center and Not Dead Yet … and that changed our lives. Now we are happy and successful. One thing many people ignore is that we need motivation to live and not motivation to die. People wishing to die is not due to their body pain, it is due to a lack of motivation.”

Proponents of a public policy of assisted suicide argue that motivation to live may be relevant to people with disabilities, not to people with a terminal condition. But Horacio has experienced this issue in his close family.

“Four years ago, my oldest sister (age 74) passed away. She had multiple myeloma and she never mentioned the word ‘dying’. Her myeloma got worst each day and even to the last minute she expressed her desire to live. She was receiving all medical pain relief and counseling.

My sister was motivated because all of us were around her showing our support and showing her how much we needed her.”

His mother who is 95 has also been diagnosed with multiple myeloma. “My mother has been very independent and when her illness stops her from doing things on her own, that’s when she gets depressed,” he says. “She has her own apartment and 24-7 one of her daughters or sons are with her. Even though she is 95, we never put her in a nursing home. And sometimes she tells us, ‘I don’t know why your father doesn’t call me to be with him,’ but that’s when she feels she is giving us a hard time. I think people with terminal illnesses don’t want to die due to their body pain, but when their dignity is touched, when they feel their family members are not living their own lives. Then when we show her how we need her and how much we love her, when we tell her how much she means to us, the depression changes to motivation.”

For several years, Horacio has served on the national Board of Not Dead Yet. Among other contributions to our work, he’s translated into Spanish a summary of the key reasons that assisted suicide laws should be rejected because of the dangers they pose to old, ill and disabled people. Please share the gift of this translation with you family, friends and colleagues in the Latino Community.

Summary Points Against Bills to Legalize Assisted Suicide

  • If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed that can prevent this outcome, which can never be undone.
  • Assisted suicide is too dangerous.

>          Assisted suicide is a recipe for abuse, including elder abuse. Where assisted suicide is legal, an heir or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug—no witnesses are required at the death, so who would know?

>          Diagnoses of terminal illness are too often wrong, leading people to give up on treatment and lose good years of their lives, and endangering people with disabilities, people with chronic illness, and other people misdiagnosed as terminally ill.

>          People with depression are at significant risk.

>          Once the prescription is filled, there are no safeguards. Why are safeguards missing at the most important point?

  • Assisted suicide will become the only option low-income people can afford.

>          The cost of drugs for doctor-prescribed suicide is miniscule compared to the cost of providing treatment to make a patient more comfortable. This economic force of gravity is obvious and has already been experienced under our nation’s oldest assisted-suicide law in Oregon.

>          Not all families are supportive. Some patients will feel that they should request doctor-prescribed suicide so that they wouldn’t be a financial or emotional burden on their family.

>          Many families are under tremendous strain. At a time of rising food costs, home foreclosures and general economic uncertainty, it would be foolhardy to ignore the role that finances would play when making end-of-life decisions.

>          Even in families where there is support for a patient diagnosed with a terminal illness, patients could feel that they are being selfish for not sparing their family. This has been documented in Oregon as a reason for requesting a lethal prescription. According to Oregon’s latest (2016) official report, 40 percent of patients who died using that state’s assisted-suicide law did so to avoid being a burden on their family, friends or caregivers.

  • Assisted suicide laws feature virtually no oversight, and data collection is grossly insufficient.

>          There is no investigation of abuse, nor even a way to report it. The states where assisted suicide is legal today do not report abuses and problems.

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No coverage of the assisted suicide issue is fair and balanced without the perspective of disability organizations and individuals who oppose it. Today, the Maryland House Health and Government Operations and Judiciary Committees are holding a joint legislative hearing on proposed physician-assisted suicide legislation – House Bill 399.

The committees decided to allow all witnesses in favor of the bill to testify first, forcing opponents to wait . . . and wait. For disability advocates, who often face complicated health and transportation issues, the committee’s biased decision may effectively block some from testifying. At least one disability advocate, Sheryl Grossman, already had to leave.

“We live with a profit driven healthcare system facing tremendous cost-cutting pressures. Assisted suicide is the cheapest ‘treatment’,” said Anita Cameron, Director of Minority Outreach for Not Dead Yet. “These bills grant legal immunity to doctors and others who assist suicides of people who may have a terminal condition. They do not prevent mistakes, coercion or abuse and, therefore, endanger the lives of old, ill and disabled people.”

To speak with Maryland and national disability advocates who oppose assisted suicide bills, please contact:

Sheryl Grossman, Maryland resident, with the Nat’l Council on Independent Living
314-863-3211

Anita Cameron, Director of Minority Outreach, Not Dead Yet
585-259-8746

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Seven disability advocates representing national and New Jersey state organizations planned to testify at a state Senate Health, Human Services and Senior Citizens Committee on Thursday, February 7, beginning at 1:00 p.m., but only two were allowed to do so. Unlike NJ Committee hearings on the issue in previous years, the hearing was stopped at 2:30, cutting off many witnesses who had signed up to testify.

The two disability rights witnesses who testified were Dawn Parkot who founded the Climb Organization and Lindsay Tuman for the DAWN Center for Independent Living. For Ms. Parkot’s testimony, go here, and for Ms. Tuman’s, go here.

Dawn Parkot’s brilliant op-ed also appeared in a leading New Jersey newspaper, very well worth reading: Here’s why a person with disabilities doesn’t want N.J. to have a law that allows people to kill themselves. [The paper’s editor gave it a misleading title, since the bill allows people to assist suicide; it’s not illegal to kill oneself – these bills immunize other people for assisting.]

Disability advocates who did not get to speak for even as little as two minutes, some of whom traveled there to represent national disability organizations, were:

  • Kate Blisard, New Jersey Not Dead Yet (testimony here)
  • Anita Cameron, Not Dead Yet
  • Kathryn Carroll, Center for Disability Rights
  • Erick Jones, ADAPT
  • Alex Thompson, United Spinal Assn.

More of the excluded testimony to be posted soon.

The Committee proceeded to vote for the bill to proceed to the Senate floor.

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[From our friends at the Autistic Self Advocacy Network:]

In the past five years, over 650 people with disabilities have been murdered by their parents, relatives, or caregivers.

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. We read the victims’ names, see their photographs, and gather what information we can about their lives. The criminal justice system has continued to give lighter sentences to family and caregivers who murder disabled people, and the media continues to portray these murders in a sympathetic light.

We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities. This would not be possible without the vital work of our volunteer site coordinators.  Click here to learn about what site coordinators do, or to sign up to lead a vigil.

Since 2012, ASAN and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. We’ll be at our local vigils on Friday, March 1st – and we hope to see you there.

If you’re interested in leading a vigil in your area, please sign up to be a Day of Mourning vigil site coordinator. To learn more about Day of Mourning, see our Anti-Filicide Toolkit.

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NDY issued the Media Advisory below on the Monday morning, January 28, 2019.

No coverage of the assisted suicide issue is fair and balanced without the perspective of New York disability organizations and individuals who oppose it. (Proponents of bills to legalize assisted suicide will be holding a press conference at the state capital in Albany on Monday at 10:30 a.m.)

We live with a profit driven healthcare system facing tremendous cost-cutting pressures. Assisted suicide is the cheapest “treatment.” These bills grant legal immunity to doctors and others who assist suicides of people who may have a terminal condition. They do not prevent mistakes, coercion or abuse and, therefore, endanger the lives of old, ill and disabled people.

To speak with New York disability organizations and individuals who oppose assisted suicide bills, including members in Albany, please contact:

Diane Coleman, JD
President/CEO
Not Dead Yet
708-420-0539
dcoleman@notdeadyet.org

Gregg Beratan
Manager of Government Affairs
Center for Disability Rights
518-320-7100 ext. 2230
gberatan@cdrnys.org

The New York Alliance Against Assisted Suicide also issued a press release today.

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