Third Annual National Day of Mourning: Is Your City Holding an Event?

Our News & Commentary Blog

This is a brief and belated call to action.  Saturday, March 1st will be the 3rd annual National Day of Mourning.  To find out whether an event is planned in your area, please go here, where you can also find information on how to hold an event.  We have templates for announcements, press releases and everything else to you need to share our message and call for equal protection of the law.  All you need to be able to add your city to the growing list of memorial vigils is a location.

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

For the last three years, ASAN, ADAPT, Not Dead Yet, the National Council on Independent Living, the Disability Rights Education & Defense Fund, and other disability rights organizations have come together to mourn disabled people murdered by their parents or caregivers, bring awareness to these tragedies, and demand justice and equal protection under the law for all people with disabilities. On March 1st, we will come together again, and we ask you to join us. So far, thirty seven volunteers have signed up to serve as site coordinators for vigils across the country. As March 1st approaches rapidly, we ask anyone who might have been waiting to sign up to hold a local vigil to do so now.

Sign up here to hold a vigil in your local community. ASAN will provide a toolkit and information on how to organize a vigil in your local community to all volunteers.

 

Guest Blog by Cathy Ludlum: Better Dead Than Fed? NOT!

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We in the disability community have a stronger appreciation than most people of the opportunities technology can bring.  Power wheelchairs and vans offer us mobility.  Voice-activated software and screen readers unleash the power of computers.  Environmental control systems allow us to manage things around the house, like opening doors and answering the phone.

But some technologies make it possible for our lives to continue so that we can participate in these activities and more.

Feeding tubes are a lightning rod of controversy throughout our society.  People go to court over having them taken out or kept in.  There are tearful discussions about life and death, and quality of life.  When someone cannot speak for him- or herself, family and medical providers speculate about the person’s wishes.

Typically, advanced care planning programs, including National POLST Paradigm affiliates, describe the risks of tube feeding while minimizing or ignoring the benefits.  How can people be expected to make a decision about this life-sustaining technology when so much of the available information is biased?  Clearly, more awareness is needed.

People are always shocked when I say that the quality of my life improved dramatically when I got a feeding tube.  They are expecting to be supportive around my feelings of loss from the progression of my disability, inability to enjoy table food and eat socially with friends, and the physical discomfort of having a tube in my belly.

I’m sure there are people who have those experiences, but for me getting a feeding tube was a profound relief.

I spent 20 years actively at war with eating.  And although I have never felt any shame at my inability to walk or dress myself, my swallowing difficulties were different.  I was embarrassed about being a slow and awkward eater.  So for most of those years, it was a lonely war.

For many people with swallowing problems, aspirating food into the lungs creates constant infections.  That was never my issue because I unconsciously held my breath most of the time I was eating.  Every bite had to be swallowed about 10 times before it would go down.  Then I would come up for air and do it again.  And again.  And again.

Approximately four hours of every day were lost trying to eat enough to keep me alive so I could do the things I really wanted to be doing: living on my own, managing my support staff, working, playing, learning, contributing.  Often, I was hungrier at the end of a meal than I was at the beginning due to all the energy expended trying to coax food through my ever-weakening throat.

And the best part?  Bits of food would lodge partway down and stay there for days… and rot… leaving a terrible taste in my mouth.

Do you seriously think I was sorry to give this up?

I might have starved to death because of my lack of knowledge that a feeding tube was even an option for me.  Fortunately, in 1997 I was hospitalized for something else and it was suggested that I get a feeding tube.  I was actually excited.  If I had known how liberating this step could be, I would have done it in my 20s instead of in my 30s.  I am 51 now, and thankful for all these extra years of good health and greatly reduced stress.

February 9-15 is Feeding Tube Awareness Week, which is an opportunity to spread the word about all the children and adults who are living healthy and active lives with tubes.  Some people use this technology on a permanent basis; others use it to bridge their recovery from illness or injury, or while their digestive systems mature to the point where they can transition to typical food.

Please check out this wonderful Feeding Tube Awareness Week Video, 2014 from the Oley Foundation.

The Feeding Tube Awareness Foundation strives to raise awareness so that children who are tube-fed enjoy increased acceptance in society and parents have greater support in their care.  Their web site is here.

No one is saying that feeding tubes are appropriate for everyone.  Every person and situation is different.  But for many, a feeding tube makes life possible, and that is worth celebrating this week. – Cathy Ludlum

 

NDY Press Release: Not Dead Yet, Second Thoughts To Testify Against New Hampshire Assisted Suicide Bill

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[Ed. Note:  For the PRWeb version of this release in pdf format, plus links to John Kelly’s and Stephen Mendelsohn’s testimonies, go here.]

Not Dead Yet’s New England director, John Kelly, will be joining disability rights activists in Concord, New Hampshire on Tuesday, February 4, to testify against HB 1325, an assisted suicide bill. The House Judiciary Committee will be holding a hearing on the bill at 1:30 PM, in Room 208 of the Legislative Office Building.

“HB 1325 is flat out dangerous to the people of New Hampshire and the region,” said Kelly. “This bill recklessly redefines thousands of people with disabilities and chronic conditions as terminal and eligible for assisted suicide.”

Section 13 of the bill defines “terminal” as an “incurable and irreversible condition,” which in a doctor’s opinion “will result in premature death.” Stephen Mendelsohn of Second Thoughts Connecticut wrote in submitted testimony that, “This bill, with its expansive eligibility targeting a wide range of people with long-term disabilities who are nowhere near death, morphs New Hampshire’s honored state motto, ‘Live Free or Die’ into an ableist obscenity: ‘Live Nondisabled or Die.'”

Advocates from the two state Second Thoughts chapters have been resisting assisted suicide initiatives throughout the region. In 2012, Second Thoughts Massachusetts helped stop a ballot question heavily favored to win, and in 2013, Connecticut Second Thoughts routed a bill out of committee.

“HB 1325 recklessly expands the definition of terminal condition to include thousands of New Hampshire residents and endangers just about anyone with a chronic condition,” said Kelly, who also directs Second Thoughts Massachusetts. “It 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. No suicide prevention, just suicide assistance.”

Kelly 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.”

In addition, New Hampshire disability activist Thomas “Woody” Wood will be testifying. Another Massachusetts disability advocate, Bill Allan will testify on behalf of the Disability Policy Consortium, a cross-disability group in Massachusetts that opposed assisted suicide there in 2012.

Canada: Toujours Vivant-Not Dead Yet Release: Bill 52 And Suicide Prevention Week: Deadly Irony

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Press Release from Toujours-Vivant-Not Dead Yet:

Bill 52 And Suicide Prevention Week: Deadly Irony

VALLEYFIELD, QC, Feb. 1, 2014 /CNW Telbec/ – While Quebec marks suicide prevention week from February 2-8, disability rights activists believe Bill 52, which would allow euthanasia of ill and disabled people, undermines the public policy of suicide prevention.

“There is a striking contradiction here,” said Amy Hasbrouck, Director of Toujours Vivant-Not Dead Yet.  “As a society we’re saying some people should be prevented from killing themselves, while another group should be killed if they ask for it.”  Hasbrouck believes this difference comes from fear, prejudice and discrimination.  She believes equality for ill and disabled people means that everyone deserves aggressive efforts to prevent their deaths.

The Québec Association for Suicide Prevention has launched its annual awareness campaign “You’re Important to Us” to draw attention to the 1,000 suicides that occur each year in the province.  Living with Dignity, which opposes bill 52, estimates that, within a decade, there could be 600-1,000 additional deaths per year should the euthanasia law be approved in February.

Bill 52 was filed on June 12 of 2013 and would allow passive euthanasia (“continuous palliative sedation”) and active euthanasia (“medical aid in dying”) for Québec residents who have incurable illnesses and physical or psychological suffering.  An amendment to the bill requires that the person be at the “end of life,” though the term is undefined.

“When such ‘benefits’ are only available to a particular group, what does that say about the value that society puts on our lives if we are old, ill or disabled?” she asks.

Hasbrouck notes that, though more than 90% of suicide attempts fail, bill 52 would guarantee such wishes of ill and disabled people would result in death.  “What about the right to cry for help?” she said.

SOURCE Toujours Vivant – Not Dead Yet For further information:Amy Hasbrouck
450-921-3057

The abandonment of chronically ill, disabled and elderly people by suicide prevention organizations isn’t new – certainly not in the U.S.  You can check out these blog posts from 2009 and 2011 for some of what we’ve written on the topic.

You should also check out this recent entry by Wesley J Smith.  Pay attention to the last line – I’m liking his last sentence a lot.  I think many “suicide prevention” organizations could be renamed – legitimately.  I think I want to think about this and play with the concept.  Luckily, brooding is one of my strengths.

New Hampshire Assisted Suicide Bill Redefines “Terminal Condition” Broadly Enough to Make Anyone With a Significant Disability or Chronic Condition Eligible

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If the title to this post sounds familiar, it should.  Not for the first time, a “Death With Dignity” bill is being considered by the legislature.  On the face of it, it’s still a bill that would restrict “eligibility” for getting lethal doses in order to commit suicide to people with “terminal conditions.”  But when you get into the actual definition, it’s clear that the sponsors of this bill want “terminal condition” to mean something other than what the rest of us mean.

This comes as no shock.  This expansive bill has been introduced several times by assisted suicide zealots in the New Hampshire legislature over the past few years.  Here’s what I wrote back in 2009 regarding the bill introduced that year – which looks to be identical to one introduced this year:

Definition of “terminal condition”:

XIII. “Terminal condition” means an incurable and irreversible condition, for the end stage of which there is no known treatment which will alter its course to death, and which, in the opinion of the attending physician and consulting physician competent in that disease category, will result in premature death.

Read that definition carefully, terminality is defined as having a condition that is irreversible and will result in a premature death. My partner would fit that definition. Many people I work with also fit the definition.

None of them are dying.

Keep in mind that this definition is to be used only in terms of eligibility for assisted suicide. It doesn’t, for example, apply to hospice services which are limited by federal rules to those who are deemed as having six months or less to live.

So, no guarantee of palliative care for people with significant disabilities or conditions, unless they’re thought to be close to death. That would be expensive.

OTOH, this bill would offer help with easy and successful suicide for anyone with a serious, significant, potentially life-shortening condition/disability at any time at all.

So, no guarantee of medical support to make life easier, but a “hand out” to those who want to die, even if they’re not dying.

I don’t think this can be written off as just sloppy wording. The sponsors involved are legislators, and if we assume competence on their parts, then we can also assume that they are fully aware of the importance of the specific definitions used in a bill when it comes to applying it in the real world as law.

Make no mistake. This bill, if passed, will guarantee an easy suicide to just about any person with diagnoses of quadriplegia, spinal muscular atrophy, HIV/AIDS, and many other conditions disabilities. Nothing to help people who could have many happy years with the right supports – just an easy and cheap out.

There’s a Judiciary Committee hearing on the bill February 4th.  It looks like an attempt to fast track this and not only get a vote that legalizes assisted suicide, but opens the doors to anyone with a significant disability or chronic condition defined as “eligible.”  It looks like we’re in a new “pushing the envelope” phase in the incrementalist/slippery slope strategy of the assisted suicide lobby in the U.S.

Here’s a link to the current bill.