ADAPT and Not Dead Yet Collaborate on New York City Times Square Super Screen Message

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This week ADAPT and Not Dead Yet launched a new messaging campaign which will be displayed on the New York City Times Square CBS Super Screen. The video message will be displayed once an hour, eighteen hours a day for three months.

The Super Screen is 26 ft wide and 20 feet high. You can find it under the CBS logo on 42nd St., between 7th and 8th Avenue. This is – no pun intended – kind of a big deal.

ADAPT issued the following Press Alert announcing the new messaging campaign.

12/18/2013 PRESS ALERT: For Information:
FOR IMMEDIATE RELEASE Bruce Darling (585) 370-6690
Diane Coleman (708) 420-0539
Jerry Costley (801) 347-0370

WHO: ADAPT and Not Dead Yet
WHAT: CRITICAL MESSAGES FROM THE DISABILITY COMMUNITY
WHERE: New York City—Times Square
WHEN: Beginning Wednesday, December 18, 2013—March 18, 2014

ADAPT AND NOT DEAD YET ANNOUNCE A UNIQUE OPPORTUNITY FOR COMMUNICATING ESSENTIAL MESSAGES FROM THE DISABILITY COMMUNITY TO THE GENERAL PUBLIC.

ADAPT AND Not Dead Yet, working in partnership, have created a unique opportunity to communicate three vital messages via the Superscreen in New York Times Square. The messages–Life, because we’re not better off dead, Liberty, in our homes, not nursing homes, and The pursuit of happiness—join our struggle at www.adapt.org and www.notdeadyet.org–also smash devastating myths that have historically prevented many individuals with disabilities from enjoying our full rights and an equal place in our communities.

These messages are displayed in a ten second video and will run once an hour, 18 hours a day for the next three months.

The first message avows that life, with or without disabilities, is worth living. Many misguided individuals have promulgated so-called “assisted-suicide” and euthanasia laws throughout the world that discriminate against elderly and disabled people by creating a state supported path to death. An all too common belief that a person is better off dead than severely disabled has been enacted as public policy. In Oregon, doctors report that people ask for assisted suicide because they feel like a burden on others, indicating that they may have even felt a duty to end their lives and relieve society of the “burden” of their existence. In addition, many individuals with newly acquired disabilities have been assisted to die before being provided an opportunity to experience all that life with a disability can offer. Not Dead Yet challenges the social message that we are “better dead than disabled” and that society is better off without us.

The second message asserts that the quality of our lives is greatly enhanced when we are allowed the liberty to live in our own homes and apartments, supported by attendants that we hire and direct. We view nursing homes as a type of segregation and incarceration that violate our civil rights, as affirmed in the Supreme Court’s Olmstead decision.

The third message calls upon everyone—with or without disabilities—to join us in our historic battle for our civil rights. We are not helpless and we neither need nor want pity. We need equal access to jobs, businesses, places of entertainment, government offices and our own homes. Everyone may at any time join our ranks by acquiring a disability. Join us now and ensure that we will all have quality lives no matter what the future may hold.

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination.

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.

For more information on our organizations, visit www.adapt.org and www.notdeadyet.org.

If you have received this press release in electronic format the ad itself has been attached.

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Press Release: Second Thoughts Massachusetts to Testify against Assisted Suicide Bill H 1998

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[Ed. Note:  For a PDF formatted version of this Press Release, and links to eight testimonies submitted by NDY Board member William Peace as well as members of Second Thoughts Massachusetts and Second Thoughts Connecticut, go here.]

Disability rights activists from across the region will be speaking Tuesday before the Massachusetts legislature’s Joint Committee on Public Health in opposition to H 1998, which would legalize assisted suicide in the state.  The group called Second Thoughts was instrumental last year in the defeat of the assisted suicide referendum, Question 2.  The hearing begins at 10:00 AM in Room A-1 at the State House.

Second Thoughts director John Kelly said, “This dangerous bill enables a doctor to misdiagnose you as terminal, decide that your depression doesn’t impair your judgment, and give you a prescription on the same day.”

Ruthie Poole, Board President of member organization  MPOWER, said “As someone who has suffered from major depression in the past, I can relate to the desire for ‘an easy way out.’ Depression is treatable and reversible. Suicide is not. I look forward to testifying against H 1998.”

William Peace, the Jeanette K Watson Distinguished Visiting Professor at Syracuse University, is driving from New York to talk about the time the doctor in a hospital tried to convince him to choose death over treating a dangerous infection.  “I was not in any way terminally ill. Yet a physician I had never met deemed my life not worth living. Disability in this physician’s opinion was a fate worse than death.”

Second Thoughts member Karen Schneiderman said that “Abuse of older and disabled people is already a problem.  With no safeguards and no waiting period, people’s lives will be endangered.”

Cassie Cramer, a geriatric social worker with experience working in Protective Services, plans to submit written testimony stating “that elder abuse, caregiver neglect or financial exploitation is widespread and that the wrong-doing is typically not glaring or easily identifiable by providers.”

Kelly, who is also the New England regional director for Not Dead Yet, a national disability group, emphasized that, under current law, people have the right to refuse or stop medical treatment, including food and water.  People also have the right to adequate pain relief, even to the point of sedation if necessary.  “What’s clear from Oregon is that pain is not the issue – prescribing doctors report patient concerns are psychological and social factors like physical dependence on others, feeling like a burden,” Kelly said.  “Those are disability issues and we have a problem with using these concerns to justify state supported suicide.”

Barbara Mancini Case: Compassion & Choices Uses the Case as Opportunity to Launch “Legal Defense” Fundraising Drive

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For those unfamiliar with the charges against Barbara Mancini regarding her role in the death of her father, please check our previous coverage here, here and here.

The latest news on the case is that Mancini is still facing assisted suicide charges and awaiting a judge’s decision on a petition to dismiss the case.

Beyond that, the big news – beyond this case – is that C & C has used this opportunity to start a new line of fundraising.  From the article, “Philly nurse charged with assisted suicide gets help with legal bills“:

Compassion & Choices, a nonprofit focused on end of life choices, has started a legal defense fund for a Philadelphia nurse charged with assisted suicide.

Barbara Mancini administered morphine to her 93-year-old father in February at his request. He was in hospice care at the time and had a prescription for the morphine.

When he died four days later, his daughter was arrested. She’s now facing a 10-year prison sentence.

Mancini acted appropriately as her father’s legal decision maker, said Mickey MacIntyre, chief program officer for Compassion & Choices.

“Compassion & Choices established a general legal defense fund in order to help the families like the Mancinis who suffer legal costs, as well as to cover other advocacy costs,” said MacIntyre. (Emphasis added.)

Most donors probably aren’t going to be reading the fine print – and the article doesn’t expand on what “other advocacy costs” means.  Donors, though, can not be sure their dollars are going just to defense costs, judging from MacIntyre’s own words.  At the very least, there’s no doubt that this new fundraising tool will be useful in building a database of people who have shown themselves willing to donate to C & C’s advocacy.

I”m in this, too, btw:

According to Stephen Drake of Not Dead Yet, an organization opposing legalization of assisted suicide, barbiturates are more effective and more commonly used than opiates, such as morphine, for individuals intending to assist with a suicide.

The Mancini case shouldn’t be prosecuted, said Drake, because it doesn’t fit the parameters of assisted suicide and will be hard to prove.

“It helps to perpetuate the illusion that prosecutions like this are common and they’re not, they’re very rare,” said Drake, a research analyst.

Context:  Specifically, I said that one troubling aspect of the case is that it perpetuates the myth that generous morphine use in hospice shortens people’s lives – and it’s a myth that pro-assisted suicide advocates like to perpetuate.  Opiates aren’t “reliable” in causing deaths – that’s why barbiturates are used in the states that have legalized assisted suicide.

And I’ll say it again.  Prosecutions like this are rare.  And unless there’s compelling evidence that hasn’t been made public, the prosecutor will have an impossible time convincing a jury that the morphine Barbara Mancini’s father took actually killed him, let alone the issue of whether or not her giving him his own medication rises to a level of illegal assistance in a suicide – or attempted suicide.

Farewell to Alison Davis – Ally and Activist (1955-2013)

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(Editor’s note – I didn’t know Alison well. We met only once at a conference and corresponded a few times.  But I think she’s the only person I’ve met older than myself with lifelong treated hydrocephalus.  Alison had spina bifida, while I acquired hydrocephalus through other means.  She was a valued ally and a strong voice against the assisted suicide and euthanasia movement across the world.  She will be missed.)

We’ve lost another one.  Alison Davis – a campaigner against assisted suicide and euthanasia – died in the morning hours of December 3.  The news was sent out by Colin Harte,  her carer and close friend for over 20 years.  In the UK, Alison was also a passionate voice in the prolife movement.  NDY doesn’t engage on either side of the “pro-choice/pro-life” debate, but we have sometimes found ourselves working with pro-life activists like Alison – who was brilliant, passionate and disciplined.

Here are a couple of examples of her work:

In 2011, Vivre dans la Dignité / Living with Dignity in Quebec, Canada filmed and produced a short testimonial on euthanasia and assisted suicide by Alison:

 

In 2004, Disability Studies Quarterly published an article by Alison titled “A Disabled Person’s Perspective on Euthanasia“.  Here’s an excerpt:

When I have told my story in public, representatives of the Voluntary Euthanasia Society have always protested that under their proposed rules my request for euthanasia would have been denied because they claim I was “depressed.” Apart from the breathtaking arrogance of presuming to know my state of mind at a time when they did not even know I existed, the truth is that the supposedly “strict safeguards” to a euthanasia law that the VES promotes, do not even mention depression as a disqualifying factor. In fact, most requests for killing do stem from some form of depression, and the availability of euthanasia would simply mean that less attention would be paid to trying to treat it.

To learn more about Alison and her life, please check out this Memorial Page set up by her long-time friend and carer, Colin Harte.

John Kelly Talks About the Tim Bowers Case

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On December 5, 2013, NDY’s John Kelly talked about the Tim Bowers case during public comments he provided by telephone to the National Council on Disability.  Bowers is the Indiana hunter who was injured in a fall and died the next day when he told doctors to stop life support.  John requested the Council’s help in saving the lives of newly disabled people who are increasingly subjected to a medical “rush to judgment”, a premature doom-and-gloom prognosis that feeds the fears and prejudices of newly disabled people and their family members about life with disability.

The following is John’s three-minute comment, which is also available on video (with the audio and visual slightly out of synch).

NCD Comment John Kelly, December 5, 2013, Topeka Kansas

“New Disability and the Rush to Judgment”

My name is John Kelly and I am the New England Regional Director for Not Dead Yet.  I want to speak to NCD’s long-standing commitment to the essential principle of self-determination.

Last month, Indiana hunter Tim Bowers fell from a tree and broke his neck. Bowers breathed on his own until help arrived, 5 or 6 hours later.  At the hospital, he was intubated, placed on a ventilator, and put under sedation to spare him physical discomfort.

Less than 24 hours later, news reports had doctors predicting that Bowers would “likely spend the rest of his life in a hospital bed, attached to a respirator unable to hold his soon-to-be-born child. “

Bowers’ wife Abbey said “The last thing he wanted was to be in a wheelchair. To have all that stuff taken away would probably be devastating. He would never be able to give hugs, to hold his baby. We made sure he knew that, so he could make a decision. Even if he decided the other thing, the quality of life would’ve been very poor. His life expectancy would be very low.”

“We made sure he knew that so he could make a decision,”  his wife said.  But what Tim Bowers was led to accept as truth about his future was false.  His tragically unnecessary death is another in a line of “rush to judgment” cases, in which newly disabled people are immediately steered towards death.

I have almost exactly the same injury as Bowers and I know that reliable prognosis requires the passage of time.  Weeks or months under ventilation was typical at my rehabilitation hospital.  In the spinal cord injured community, we know people who weaned off ventilation.  We also know many people who have led thriving lives with breathing assistance, whether by ventilator, oxygen, or continuous pressure CPAP/ BiPAP.

Tim Bowers deserved to get the same suicide prevention services offered to any other person in the throes of trauma.  Instead, he was given an incomplete and hasty prognosis and false certainty of future suffering. No one told him about all the opportunities open to him, or about the adjustment and adaptation that follow in time.

Based on this misinformation from doctors, and his and his loved one’s fears about  life in a wheelchair, Tim Bowers gave his consent to dying on the first day after his injury.  In no way was his decision based on informed consent.

We urge NCD to investigate the ways in which state health laws are being distorted and abused.  Meaningful self-determination gets bypassed and obstructed in favor of a rush to judgment that cuts short the lives of newly disabled people based on ignorant and outmoded judgments about quality of life.  We urge NCD to come up to speed on health care decisions laws because national guidance is needed to help reshape these laws to prevent discrimination in these life and death judgments.  My written comments include action steps.

We also understand that NCD has been cultivating relationships with state legislators; and just like your great work with parenting rights issues and others involving state laws, we urge you to be ambassadors to state policy makers and ask you to help us share our concerns with them.

Thank you for your time today.

John B. Kelly

New England Regional Director

Not Dead Yet