A Happy Holiday Message

Our News & Commentary Blog

People sometimes wonder if the subjects Not Dead Yet deals with get us down. But the reality is that you lift us up – every time you share the message that we are NOT “better dead than disabled,” every time you fight for the healthcare and supports we need, every time you prove our inherent DIGNITY by fighting the indignities society too often heaps upon all the beautiful, proud disabled people we are. Thank you for all the forms of support you have given and please take comfort in knowing you have helped save lives.

If you are still looking to make a year end donation, please consider Not Dead Yet by going here. Wishing you love, peace and justice in the new year!

A Bipartisan Op-Ed on the Harms and Threats to Disabled People in the Tax Bill

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The Organizers Forum of the National Disability Leadership Alliance just held an educational call about the harms and threats to people with disabilities (and seniors) in the tax bill. As usual, the NDLA website will carry a recording and transcript of the call as soon as possible.

Shortly after the call, the U.S. House passed the latest version of the bill and sent it back to the Senate for its vote. Then, as if to bolster my spirits, I read an op-ed from Senator Bob Casey and former Governor Tom Ridge focused squarely on the negative disability impact of this bill. From the Pittsburgh Post-Gazette and titled Bob Casey and Tom Ridge: Don’t disempower fellow citizens – Americans with disabilities deserve a chance to work and live in their communities, it begins:

We are two Pennsylvanians, members of two different political parties, but with a number of principles we whole-heartedly agree upon. Among them: Government should empower its citizens; political leaders should be servants to those who elect them; those who govern must be responsible stewards of public monies; and government should expand people’s freedom and enhance their right to self-determination, providing the means to take advantage of the great opportunities our state and country provide.

All of these principles are true and necessary for the trust and confidence of Pennsylvanians and Americans, but the last one is especially true for those with disabilities. Whether they are born with a disability or acquire it from disease, accident, age, or service to our country, our government should ensure that supports and services are in place so that citizens who have a disability are able to go to school, earn a living, live independently, and be full contributors to our communities.

That is why the two of us are concerned about the tax bill that was reported out of the congressional conference committee on Friday and will now work its way to a final vote in the Senate and House of Representatives.

To read the whole opinion piece, please go HERE. They specifically discuss concerns about future cuts to Medicaid home care that keeps us, seniors and disabled people, out of dangerous and costly institutions.

I used to hear that bills harming programs like Medicare, i.e. seniors, were “the third rail,” not to be touched if you want to be re-elected. But Medicare cuts are in the bill, so it appears that we need to remind them.

Supplementing Your Advance Directive With A Video

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Kaiser Health News recently carried an article encouraging people to create videos to help explain what’s in their advance directives, which are often overly complex legal boilerplate or overly simplistic checkbox forms.

One thing I like about the article, Straight From The Patient’s Mouth: Videos Can Clearly State Your End-Of-Life Wishes, is the discussion of how different situations that might arise could impact an individual’s treatment decisions.

The article starts with an individual:

For years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said. 

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

The article links to a few organizations that have video projects or resources for advance directives, and the formats vary. Here’s one of them described in the article:

The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations. 

[Institute founder Dr. Ferdinando] Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth.

And here’s my favorite part of the article:

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

It’s fortunate that Ms. Forman went to Dr. Mirarchi, who’s done several studies on the implementation of advance directives, including their misinterpretation and other concerns that might result in people being denied treatment they would actually want. (Too bad it’s not quite as straightforward to explain how people find out by experience why it’s good to Live On! with a disability when many used to think it would be better to be dead than disabled!)

NDY covered some of Dr. Mirarchi’s work in a 2015 blog that ends with a very nice music video on the subject by his colleague Dr. Michael Barton. Readers can learn more about their work at Institute on Healthcare Directives.

I remain as skeptical as ever about the preparation, uses and abuses of treatment specific advance directives (as distinguished from appointment of a proxy), but our society is stuck with them, so videos may be a chance for improvement. Mine would start out, with my motorized wheelchair and breathing mask visible, “Yes, no kidding, I really love my life!” – Diane Coleman

NDY Board Member Mike Volkman Writes About Assisted Suicide and “Dignity” in Albany Times Union

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Mike Volkman is a long-time member of Not Dead Yet’s Board of Directors. Mike joined Not Dead Yet at its inception in 1996. He had been on the staff of the Capital District Center for Independence in Albany, New York, and later was on the Board of Directors. He has written op-ed columns for his local newspaper, the Times Union, and remains a tireless advocate for the rights of people with disabilities.

On 10/27/17, the Albany Times Union published an op-ed by Mike, in which he picks apart the complicated relationship between assisted suicide and the mostly-undefined concept of “dignity.”

Below is an an excerpt from “Death with dignity devalues disability.”

What does it mean to die with dignity? Or the opposite, what is death without dignity or with indignity? There is no legal definition. It is a phrase people like to use with the hope that it is sufficient and accepted. Remember the bit George Carlin did in 1992 about euphemisms? They hide the truth.

Legislative bodies should come up with legal definitions for the term. They should specify what constitutes dignified ways of dying. When they come to define what are undignified ways of dying, the challenge is how to do it without describing circumstances that go with disability.

Please go read this op-ed in its entirety here. For one thing, it’s a great op-ed. Also. newspapers track how people access their articles. If a lot of us access the essay, it lets the paper know that there are lots of us who would like to hear from disability rights activists/advocates in general and from Mike in particular.

My Letter To the Victorian Parliament

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[Apologies to those who’ve already seen this letter, which I emailed to the members of Parliament in Victoria, Australia on Monday at the request of Margaret Dore. It’s different from my usual letter, more personal. Margaret’s Choice Is An Illusion and the Euthanasia Prevention Coalition both shared it, which I appreciate and so, a bit belatedly, it’s here as well. Sadly, a close majority decided to ignore the dangers of the bill and passed it, making it the first Australian state to do so. While most people’s eligibility is based on a six-month prognosis, the bill includes a “special” provision extending that “to 12 months for people with neurodegenerative diseases such as Motor Neurone Disease.“]

Neuromuscular conditions and the definition of “terminal”

I am writing behalf of Not Dead Yet, a national disability rights group in the U.S. that opposes legalization of assisted suicide. We understand that a proposal in Victoria would pertain specifically to neuromuscular disabilities. This letter will focus on misdiagnosis and the uncertainty of terminal predictions by doctors, as well as the significance of breathing support for those of us with these conditions. My own experience illustrates the issues.

At the age of six I was misdiagnosed as having muscular dystrophy and my parents were told that I would die by the age of 12. A few years later I was re-diagnosed with spinal muscular atrophy, a progressive neuromuscular condition which has a longer lifespan. Since age eleven, I have used a motorized wheelchair. Beginning 17 years ago I have used breathing support at night. The type of support I need is called a BiPAP. Over the years, the pressures required to sustain my breathing increased.

I am now age 64. Four years ago, the doctors determined that I do not have spinal muscular atrophy, and I am now diagnosed with another neuromuscular label, congenital myopathy. About two and a half years ago, I went into respiratory failure. Since then I have used breathing support most of the day as well as at night. If I did not use this support, I would likely have respiratory failure within a few days at most. Under most definitions, I qualify as “terminal,” even though I have already lived two and a half years this way.

Throughout my adult life, I have worked full time, first as an attorney and then directing nonprofit disability related organizations. Over the last two years, I have continued to run Not Dead Yet, which has four staff and numerous volunteers across the country. I have spoken at conferences, published articles, been interviewed by at least 20 press outlets, submitted testimony in legislatures, and provided the day-to-day management an organization requires.

As a severely disabled person who depends on life-sustaining treatment, I would qualify for assisted suicide at any time if I lived where assisted suicide is legal. If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled and healthy person who despaired over divorce or job loss. Where assisted suicide is legal, I would be treated completely differently due to my condition.

This is just one example of how slippery the definition of terminal really is. Under assisted suicide policies, many people with disabilities would qualify for assisted suicide and be denied the suicide prevention and other supports that nondisabled people could take for granted if they expressed a desire to die. Assisted suicide laws are inherently discriminatory against old, ill and disabled people.

We urge you to vote no on the assisted suicide bill. The dangers of mistakes and abuse are simply too high, not only for people like me, but for everyone.

Diane Coleman, JD, MBA
President/CEO
Not Dead Yet