R U Ready? Portlight Strategies, Emergency Preparedness and Media Awareness, April 1 – 7. Share Your Stories!

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I’m getting this out a little later than I’d planned due to getting hit hard with a nasty cold late last week.   What follows is an important effort regarding the safety and welfare of people with disabilities (and other underserved folks) in areas where disaster strikes.  I’m cutting and pasting the alert from Portlight Strategies directly below, with additional info about the organization below the alert.  (Taken from this link)

R U READY?

Attention Blogger and Social Media Users,

Portlight Strategies, Inc wants to invade the internet with the importance of emergency preparedness and people with disabilities with the “R U Ready” media blitz. April 1st to April 7th. Portlight will use social media to spread awareness through blogs and status updates. Portlight is asking bloggers to blog about emergency preparedness and people with disabilities and then share your blog on Facebook and Twitter using the hashtag #ruready. Some examples of topics are:

– Families with children with disabilities

– Service animals and shelters

– How to shelter in place

– How to prepare for a disaster if you are dependent on equipment (vent, powerchair, etc..)

– Transportation during a disaster

– Alternative formats (braille, large print, ASL interpreter, etc..) in a disaster

During the week of the RUReady media blitz, we will all change our Facebook profile picture to the below graphic. We encourage everyone to do the same.

RUReady (5)

Contact us and let us know if you are interested in participating at holly@portlight.org or shari@portlight.org

Not Dead Yet is concerned with the life and death issues that affect disabled people of all ages.  The dangers that disasters present were brought into sharp focus (and then deliberately obscured) during Hurricane Katrina.  Some disabled people were abandoned to drown and die in a nursing home that was flooding – and never evacuated.  During that same time, patients at Memorial Hospital in New Orleans were allegedly murdered so that medical staff could honestly leave no one alive behind (threw them off the lifeboat to save themselves).

While few stories are as stark and as outright dehumanizingly deadly as those, there’s still a clear pattern of neglect and abandonment of disabled people in disasters.

That’s one of the main reasons that Portlight Strategies exists.  If you want to know more about the organization – and you should – read “about us” on their site and make sure to read through the “our story” section.  You can also read this 2011 guest post by Paul Timmons (CEO of Portlight Strategies).

Watch this blog this week – we’ll be publishing a blog post by a member of our Board of Directors on the topic.  And if you have stories to share – please share them with the good folks at Portlight and share the word!

 

Press Release: Disability Opposition to Assisted Suicide Bills Helped Secure Third Defeat In New England States This Session

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[Editor’s note:  For the PRWeb online version of this release in pdf format, go here.]

On Friday, it became official: for the second consecutive year, the Connecticut legislature rejected assisted suicide legislation. Disability advocates celebrated as the state’s Public Health Committee, like the Massachusetts Joint Committee On Public Health a week earlier, let its assisted suicide bill die in committee. Earlier this spring, New Hampshire overwhelmingly rejected an assisted suicide bill by a vote of 219-66.

“It’s a clean sweep,” said John Kelly, New England regional director for Not Dead Yet and director of Second Thoughts Massachusetts. “Throughout New England, assisted suicide proponents simply had no answers to the arguments raised by disability rights advocates. When public health committee members heard from us how discriminatory and dangerous assisted suicide is, they had ‘second thoughts.’”

With victory assured, Second Thoughts Connecticut leader Stephen Mendelsohn issued a statement that was picked up by the Associated Press, appearing in media from Boston to San Francisco. “The collateral damage from legalizing assisted suicide—including massive elder abuse, the deadly mix with a cost-cutting healthcare system steering people to suicide, misdiagnosis and incorrect prognosis, suicide contagion, and disability discrimination in suicide prevention—is simply not fixable.”

“In all three states, it’s clear that the disability community was heard and had an impact,” said Not Dead Yet President and CEO Diane Coleman. “People who are terminally ill are almost always disabled. This is one of many reasons that our perspective sheds some light on this complex issue.”

CT News Junkie stated, “Both this year and last year, people with disabilities and their advocates have been among the bill’s most outspoken opponents.”

Disability rights opposition was also a focus in US News and World Report. Alongside quotes from Not Dead Yet’s Coleman and Kelly, Marilyn Golden of the California-based Disability Rights Education and Defense Fund was quoted regarding the Connecticut bill, saying “This does not promote patient choice. It invites coercion.”

As Second Thoughts Connecticut leader Cathy Ludlum told the Yale Daily News, the bill “would basically redefine what suicide is. It would mean some people are going to get suicide prevention, and other people are going to get suicide assistance.”

“If someone at Yale feels like they want to kill themselves because their life has no dignity and worth, somebody would try to give them help to get better,” Kelly told the Yale Daily News. “But if it’s a disabled or terminally ill person, people say, ‘Of course you want to die.’”

CT News Junkie quoted Elaine Kolb’s testimony before the Public Health Committee, that “they are saying that ‘I’d rather be dead than be you,’” Kolb said. “This is something that people are saying to people with disabilities and there is contempt in it and there is contempt in this bill.”

Kolb, a long time Not Dead Yet activist and singer/songwriter, played guitar while leading Second Thoughts Connecticut’s press conferences in her song, “Not Dead Yet.”

Advocates are ready for the legislative fights that are sure to begin again in 2015, Mendelsohn said. “We’re not taking anything for granted and we know they’re going to be back in 2015.”

Second Thoughts Connecticut, the sister group to Second Thoughts Massachusetts organized last year to stop assisted suicide legislation, was recognized for its impact on the legislation’s defeat.

Diane Coleman, John Kelly and Marilyn Golden Quoted in U.S. News & World Report Article on “Right to Die”

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Today, March 24th, the U.S. News & World Report site published an article titled “Is There a Right to Die?”

The article focuses mainly on the current battle around assisted suicide legislation in Connecticut.

The most remarkable aspect of this article is that about half of it is devoted to quotes from disability activists, who are the only opponents to legalized assisted suicide quoted in the article.  Marilyn Golden from DREDF is quoted as are Diane Coleman and John Kelly from Not Dead Yet.  I (Stephen Drake) was also interviewed but not quoted.

We celebrate and appreciate that.  Still, there are aspects regarding the framing of the story that may make readers wonder why disability activists were relevant to it.

First, the graphic used under the headline is a picture of a latex-gloved hand pulling a plug, which conflates the right to refuse unwanted treatment with assisted suicide.  The public is already confused, and Compassion & Choices capitalizes on that in its lobbying.  (Connecticut and New Jersey have bills pending; bills in New Hampshire and Massachusetts were recently defeated.)

Second, the reporter focuses on Compassion & Choices’ (C&C) claim that assisted suicide is only for terminally ill and imminently dying people.  She heard from us about the New Hampshire bill, which made people eligible for assisted suicide if they have an irreversible condition which will shorten their life span, thus making many people with disabilities eligible, as it is not tied to a prognosis of death in six months.  We also told the reporter about C&C’s campaign to promote voluntarily stopping eating and drinking (VSED) as a means of suicide for those who don’t have or qualify for an assisted suicide law in their state, including people who are not terminal.  But the article doesn’t bring up these facts that show how broad C&C’s agenda is.

That might have been too hard to put up against the C & C claim that their legal objectives are narrow – and would have required a longer article than the reporter’s editors wanted.

Bottom line – I suspect that Barbara Coombs Lee is far less happy with this article than we are.  I’m sure she would much rather have not had us included and been able to pretend that religious conservatives are her group’s only legislative opponents.

Please go check out the article here.

Assisted Suicide Is A Deadly Mix With Our Profit-Driven Healthcare System

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In the debate over the public policy of legalizing assisted suicide, proponents of so-called “Death With Dignity” acts often tell personal stories of a loved one’s difficult experiences while dying.

When I hear that someone was screaming in pain, my first thought is “malpractice.”  My father died of bone cancer, a very painful type of cancer, and he had pain medications prescribed by his oncologist, but was still in a lot of pain and could barely stand to move.  Then he agreed to forego aggressive treatment and go into hospice.  The hospice nurse adjusted his medications, and his pain virtually disappeared – he got up, went to see his neighbor and played putt-putt golf in the living room.

He lived about three more months, and stayed under the care of that nurse until the end.  Sadly, she told me that she was being forced to spend increasing amounts of time documenting care due to managed care, rather than providing care to her patients, and as she tried to do both, her work was eating into her time with her family, so she decided to quit.  That was 15 years ago.

So when I hear stories of painful deaths, I think about my dad’s well-meaning but ignorant oncologist, the wonderful hospice nurse, and the ensuing progress in palliative care.  When a nationally respected palliative care physician like Dr. Ira Byock says that assisted suicide is not progressive, people should listen.  But personal stories carry so much more weight.

So we need to tell our stories.  People with disabilities have a lot of experience with doctors, hospitals and health insurance.  That’s just reality.  And our experiences profoundly affect how we see the assisted suicide issue.  All of the major national disability organizations that have taken a position on assisted suicide oppose legalization.  I think that is a direct reflection of the shared experiences of our community.

One common experience is having a need for health care treatment that is not covered because it costs too much.  Do you know why Medicare doesn’t cover hearing aids?  I used to work for a federally funded assistive technology center, so I asked this question of a federal official during a conference call training.  The answer was that so many seniors need hearing aids that it would cost too much, so hearing aids are not covered by Medicare.

In the assisted suicide context, denial of needed health care is very relevant.  The Disability Rights Education and Defense Fund coined the phrase “Deadly Mix” to refer to this concern:  Assisted suicide is a deadly mix with our profit-driven healthcare system.  At $100-$300, assisted suicide will be the cheapest treatment. Assisted suicide saves insurance companies money.

The infamous cases of “Deadly Mix” from Oregon are those of Barbara Wagner and Randy Stroup, who received letters from Oregon Medicaid denying coverage for prescribed chemotherapy but mentioning that the state would cover the $100 cost of assisted suicide.  In response to media coverage of the letters, the Oregon Medicaid agency stopped sending this type of letter, but that doesn’t change the economic realities.

There have been some powerful personal stories in Connecticut on the Deadly Mix issue.  One came from Elaine Kolb, a lesbian disability rights activist and songwriter who wrote and sings a song entitled “Not Dead Yet”, recorded during a March 14 press conference and posted on You Tube.  At the March 17 assisted suicide hearing in Hartford, Elaine testified powerfully about the pressures health care providers put on her partner to forego life-sustaining treatment.  To see Elaine’s testimony, readers can go to the Connecticut legislative website recording, beginning at 2 hours and 30 minutes.  CT News Junkie also reported a central concept of the disability witnesses and quoted Elaine.

People with disabilities have been among the bill’s most outspoken opponents. While supporters often refer to the legislation as “death with dignity,” some with disabilities see the term as a disparaging statement that likens a loss of faculties with a loss of dignity.

“They are saying that ‘I’d rather be dead than be you,’” Elaine Kolb, a disabilities activist, said. “. . . This is something that people are saying to people with disabilities and there is contempt in it and there is contempt in this bill.”

Cost cutting pressures also impact our nation’s elders.  Elaine called my attention to the personal story of a friend of hers, Joan Cavanagh, identified as “a life-long human rights and anti-war activist.”  The New Haven Register published her op-ed describing her experience fighting for her mother’s life:

I had a painful and frightening time for many years trying to get my Mom life-sustaining treatment. The health care system had no use for her because she was old, suffering from dementia, and poor. . . .

I had been her primary caregiver for 16 years while she lived at home and her health care agent while she was in a nursing home for four years. In the later years, I was continually pushed by medical providers to limit her treatment, change her code status to DNR/ DNI [Do Not Resuscitate/ Do Not Intubate], and/or put her under hospice care, against both her wishes and mine. During one emergency room visit, a doctor actually said that “society should not be expected to bear the cost” of trying to find out whatever was causing her current problem at age 86. (At that time, it turned out to be an easily treatable urinary tract infection.)

For Cavanagh’s whole story, which she noted is not uncommon among other caregivers she knows, go here.  In my view, her conclusion is inescapable:

Given the current health care system, its increasing focus on “cutting medical costs” and the fact that some lives are clearly deemed expendable, it is neither compassionate nor wise to support any measure that would, intended or not, legalize further pressure and abuse. When I think of the incessant harassment to which I was subjected to make a decision that I could not in conscience make, I have no doubt about the even greater coercion to which a seriously ill person (and their caregivers) would be subjected to end their too expensive life if assisted suicide is made legal.

I served on the boards of statewide Medicaid consumer advocacy organizations for many years, often as the only person with a disability in a group of progressive healthcare policy advocates.  The logic of the Deadly Mix argument is grounded in health care system failings that we fought at every turn.  The only reason I can think of that more progressives have not taken a stand against legalization of assisted suicide is that our opponents got the jump on us in the media years ago by framing the debate as “compassionate progressives” versus the “religious right.”  It’s time for everyone to catch up.  Health care cost cutting pressures and legalized assisted suicide are a bad combination.  It’s not rocket science, just simple economics. – Diane Coleman

 

Minnesota Supreme Court Rules Online Suicide Predator Melchert-Dinkel Protected by First Amendment

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Yesterday, March 19th, the Minnesota Supreme Court issued a decision that affects two cases in Minnesota.  From the Christian Science Monitor:

The Minnesota Supreme Court on Wednesday reversed the convictions of a former nurse accused of encouraging two people whom he met online to kill themselves.

The court ruled that the language in the state’s assisted-suicide law that pertains to “encouraging” suicide is unconstitutional. It violates the right to free speech. However, the court upheld the part of the law that bans “assisting” suicide.

“We conclude that the State may prosecute Melchert-Dinkel for assisting another in committing suicide, but not for encouraging or advising another to commit suicide. Because the district court did not make a specific finding on whether Melchert-Dinkel assisted the victims’ suicides, we remand for further proceedings consistent with his opinion,” wrote Justice G. Barry Anderson in the majority opinion.

His 360-day jail sentence had been on hold pending the outcome of the appeal.

Melchert-Dinkel, 51, was convicted on two counts of aiding suicide in the deaths of two people: Mark Drybrough, 32, of Coventry, England, who hanged himself in 2005; and Nadia Kajouji, 18, of Brampton, Ontario, who jumped into a frozen river in 2008.

His attorney argued that he was exercising his right to free speech, and that the law — which states that anyone who “intentionally advises, encourages, or assists another in taking the other’s own life” is guilty of a crime — was too broad.

In addition to his free speech claim, Melchert-Dinkel argued that he had no influence on either person’s actions. But prosecutors say his speech wasn’t protected and that he played an integral role in the deaths, including giving step-by-step instructions.

Evidence showed that Melchert-Dinkel sought out depressed people online. When he found them, he posed as a suicidal female nurse, feigned compassion and offered instructions on how they could kill themselves.

Melchert-Dinkel told police he did it for the “thrill of the chase.” According to court documents, he acknowledged participating in online chats about suicide with up to 20 people and entering into fake suicide pacts with about 10, five of whom he believed killed themselves.

Prosecution of Final Exit Members have been on hold pending the outcome of this case.  Theoretically, prosecutions in both the Melchert-Dinkel and Final Exit Network cases are possible in terms of suicide assistance, but in reality probably much less likely in the case of Melchert-Dinkel, who never came into physical contact with his targets.  There’s a stronger case for assistance in terms of the Final Exit Network, with several members facing various charges regarding their roles in the suicide of  Doreen Dunn.

As for Melchert-Dinkel, it’s highly likely he’ll be free of all criminal charges when the dust settles.  And that’s disturbing – to put it bluntly, the man is a predator. He searched for vulnerable people struggling with suicidal feelings online. Once he found one, he adopted a persona that would “befriend” that person and work toward a sham suicide pact (with Melchert-Dinkel trying to get the other person to webcast their own suicide).  He got off on it.

If cleared of all criminal charges, he’ll have a clean record.  And there’s no reason to assume he can’t regain internet access and resume his favorite sport again, secure in the knowledge that he has a free pass from now on.  Even the court acknowledged the “depravity” of his actions, which you can read in the decision, available here in pdf.