Announcing The Disability Rights Leadership Institute on Bioethics

A groundbreaking event for disability rights advocates to advance the disability rights perspective on bioethics issues:

— Withholding Medical Treatment
— Assisted Suicide Laws
— Reproductive Technologies
[and more]

… and to develop our advocacy strategies on these issues.

April 25 and 26, 2014
8:45 AM to 5:30 PM –
Participants are requested to stay for the full two–day Institute.

Crystal City Marriott, Arlington, VA
Across from Crystal City Metro
1999 Jefferson Davis Hwy, Arlington, VA 22202
(703) 413-5500

Space is limited! Please Register ASAP: 
The Institute registration deadline is March 28. 
The deadline for hotel registration at the Crystal City Marriott is April 3.

Join us for this exciting and first-ever Disability Rights Leadership Institute on Bioethics (DRLIB), where disability rights advocates will gather for two focused days of learning, discussion, and honing our advocacy skills on the key bioethics issues facing the disability community in the United States (some speakers will provide an international perspective as well).

Speakers will include:

Liz Carr, Comedian, Actor in a BBC drama series, and NDY activist from the United Kingdom
Diane Coleman, President, Not Dead Yet (NDY)
Marcy Darnovsky, PhD, Executive Director, Center for Genetics and Society (CGS)
Dr. Kevin Fitzpatrick, Director, Euthanasia Prevention Coalition, Europe (EPC Europe)
Marilyn Golden, Senior Policy Analyst, Disability Rights Education & Defense Fund (DREDF)
Ari Ne’eman, President and co–founder, Autistic Self Advocacy Network (ASAN)

Costs:
Registration for the Institute itself: $175, which will help cover a number of meals as well as other DRLIB expenses including meeting space, speaker expenses, and disability accommodations.

How to register for the DRLIB:
1. First, register on-line for the Institute itself.
2. Second, if you need a hotel room at the Crystal City Marriott, you must book your own hotel reservation. The hotel deadline is April 3. Call (703) 413-5500 and mention our group name, the Disability Rights Leadership Institute on Bioethics. Hotel room rate is $139 per night plus tax.

Questions?
Contact Tim Fuchs:
E-mail: tim@ncil.org

The Disability Rights Leadership Institute on Bioethics is sponsored by:

• National Disability Leadership Alliance (NDLA)
• Autistic Self Advocacy Network (ASAN)
• Disability Rights Education & Defense Fund (DREDF)
• Euthanasia Prevention Coalition (EPC)
• National Council on Independent Living (NCIL)
• Not Dead Yet (NDY)

For the complete Announcement, go to here.

American Bar Association Newsletter Features Margaret Dore Article on Elder Financial Abuse and Assisted Suicide

In a new article that appeared in The Voice of Experience newsletter of the American Bar Association, Washington State elder law attorney Margaret Dore explained how she got involved in the fight against legalization of assisted suicide.  The ABA newsletter is only available to subscribers, but the article, Preventing Abuse and Exploitation: A Personal Shift in Focus. An article about guardianship, elder abuse and assisted suicide, also appears on Dore’s Choice Is An Illusion website.

Dore recounted some early experiences in handling guardianship cases involving elders.  Initially, she worked within the system, but then things changed:

. . . I got a case involving a competent man who had been railroaded into guardianship.  The guardian, a company, refused to let him out.  The guardian also appeared to be churning the case, i.e., causing conflict and then billing for work to respond to the conflict and/or to cause more conflict. . . .

At this point, the scales began to fall from my eyes.  My focus started to shift from working within the system to seeing how the system itself sometimes facilitates abuse.  This led me to write articles addressing some of the system’s flaws.  See e.g., Margaret K. Dore, Ten Reasons People Get Railroaded into Guardianship, 21 AM. J. FAM. L. 148 (2008), available at http://www.margaretdore.com/pdf/Dore_AJFL_Winter08.pdf.  

Dore’s career as an elder law attorney brought new elements to the discussion of potential issues affecting elders who might be victimized.  As Dore noted in her ABA article:

In 2011, Met Life released [a . . ] study . . . , which described how financial abuse can be catalyst for other types of abuse and which was illustrated by the following example.  “A woman barely came away with her life after her caretaker of four years stole money from her and pushed her wheelchair in front of a train.  After the incident the woman said, “We were so good of friends . . . I’m so hurt that I can’t stop crying.”   [The study is available at www.metlife.com/assets/cao/mmi/publications/studies/2011/mmi-elder-financial-abuse.pdf.]

Dore went on to connect the dots between elder financial abuse and assisted suicide:

In the United States, physician-assisted suicide is legal in three states:  Oregon, Washington and Vermont. . . .

All three laws are a recipe for abuse.  One reason is that they allow someone else to talk for the patient during the lethal dose request process.  Moreover, once the lethal dose is issued by the pharmacy, there is no oversight over administration.  Even if the patient struggled, who would know?

In this and other legal articles, Dore has brought new analysis and valuable insights to the public debate over legalization of assisted suicide.  The majority of reported cases in Oregon and Washington involved people with education and resources.  Unfortunately, an elder’s resources are no safeguard against abuse.  In fact, Dore’s voice of experience would suggest that resources may instead be a motivation for it. – Diane Coleman

 

Response to NYT Front Page Public Relations “Article” Promoting Assisted Suicide

(Editor’s note: The following is a revised version of an op-ed I drafted in response to the front page story published in the New York Times on February 8.  ‘Aid in Dying’ Movement Takes Hold in Some States was written by reporter Erick Eckholm. We’ve been informed that that the Times isn’t considering any op-eds in response to this article.)

I was disappointed but not surprised when I discovered that the Times published a front page article on February 8 promoting and praising assisted suicide advocates and their goals.  At first, I was tempted to think it was ghost-written by the communications staff at Compassion and Choices, the assisted suicide advocacy group that featured prominently in the article.  After a little research, it seems more probable that the promotional piece pretending to be journalism is the fault of reporter Erik Eckholm and the editors who felt the article represented real journalism.

Eckholm relied almost entirely on two sources for his article – Barbara Coombs Lee of Compassion and Choices and Robert Mitton, a 58-year-old man who started a blog late last year talking about his impending death due to a serious heart condition – and his wish to be able to kill himself when he decides it’s not worth it to live any more.  Although it’s glossed over in Eckholm’s article, Mitton’s shaky finances weigh heavily on his mind and in how long he thinks he’ll be able to afford to stick around. His blog contains a paypal button for people to contribute so that he can meet expenses for a few more months.

The one voice of opposition in the article is lifted from an unnamed article quoting a Catholic Archbishop. Obviously, there are others – aside from the Catholic Church – who have opposed the assisted suicide movement for decades.  Statewide coalitions opposing legalization of assisted suicide have all included a variety of religious organizations, medical organizations and disability rights organizations.  It would seem that Compassion and Choices – and Mr. Eckholm – only want you to know about the religious opposition.

The ways in which Eckholm’s article parrots the talking points of Compassion and Choices – or an enumeration of misinformation in the article aren’t the point of this essay.  In any case, Wesley Smith has already written that kind of post – and I’m not sure what more I could add to it.

For now, I’d like to point out the total lack of critical analysis that was applied to the discussion of terminology in the article.  It might also help some people understand why many nonreligious disability activists like myself have been opposing assisted suicide advocacy for years and even decades.

Eckholm’s article discussed the hugely significant impact of the omission of the word “suicide” on Gallup poll results, yielding much higher levels of support.  What the poll documents, of course, is the effectiveness of using fuzzy euphemisms when promoting a political agenda.  Unfortunately, the article’s subsequent discussion suggests that the growing success of the term “aid in dying” rests on its accuracy rather than its soft fuzzy distance from reality.

This kind of wordsmithing is not unique to the assisted suicide movement. Back in 2010, Chris Hayes – an editor of The Nation and currently the host of MSNBC’s  “All In,” gave a great example of pushing alternative language toward a political end while subbing for Ed Shultz on his show.  Hayes related the effectiveness of the Bush administration’s promotion of what he called “the pro-torture euphemism ‘enhanced interrogation techniques.’” According to a Harvard study he described:

From the 1930s to the last decade, “The New York Times” called or characterized waterboarding as torture 82 percent of the time.  But from 2002 to 2008, that number dropped to 1 percent of the time.  From 82 percent to 1 percent.  

Although it wasn’t covered, it can probably be presumed that the adoption of the “pro-torture euphemism” also resulted in weakening public opposition to the practice.

That’s essentially what Compassion and Choices seeks to accomplish with getting the courts and the press to embrace “aid in dying” as distinct from assisted suicide.  “Aid in dying” sounds like the comfort of hospice and palliative care for terminally ill people.  The usage of the term divorces the public’s attitudes, values and emotions regarding suicide from assisted suicide. And the social distinction is the real one that assisted suicide advocates are after. As a society, we embrace the view that suicides are preventable tragedies. Assisted suicide advocates want us to embrace their terminology so that we’ll view old, ill and disabled people living too long as preventable tragedies.

But it turns out that “aid in dying” may already be on the way to obsolescence.  Assisted suicide advocates have put themselves in a bind by insisting “aid in dying” refers to assisting the suicides of people whose deaths are imminent.  That means new terminology is needed for the next step.

By the “next step” I mean broader eligibility in terms of who gets a “hastened” death. If you read the quotes from Ms. Coombs Lee in Eckholm’s article carefully you’ll find that when talking about Compassion and Choices’ VSED – voluntarily stopping eating and drinking – program, she doesn’t mention anything about death being imminent to qualify. In fact, the first highly publicized instance of their program involved an elderly couple ending their lives together this way, when neither was imminently terminal. We’ve even heard that some people with spinal cord injury have gotten hospice assistance to die this way, although it’s unknown if Compassion and Choices was involved.

Saturday’s article also failed to take note that right now legislators in New Hampshire have introduced HB 1325, a bill that would legalize assisted suicide for the “terminally ill,” incredibly broadly defined as “an incurable and irreversible condition, for the end stage for 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.”

That definition makes anyone with a significant chronic illness or disability “eligible” under this proposed statute, no matter how far off their “premature death” may be. Diabetes, spinal cord injury, multiple sclerosis – to name a few – can all shorten your life expectancy.

Obviously, assisted suicide advocates can’t refer to VSED and the NH bill as “aid in dying” if they stay true to their previous assertions about their rationale for the term. So what’s next?  “Death with dignity” is. It’s already part of the language of many of the bills.  And the term is even farther removed from the reality of helping a human being kill him or her self.

It’s not just hypothetical.  Last month, the website governing.com published an article by David Levine promoting the use of “death with dignity” over any other term in pushing assisted suicide legislation.  The article has been featured and lauded on Compassion and Choices’ Facebook page.

More and more, it looks like there’s a lot more enthusiasm for old, ill and disabled people having “death with dignity” (assisted suicide) available.  Meanwhile, due to stagnant or shrinking supports through the social safety net, it’s getting harder to live – with or without dignity – if you’re old, ill and disabled.

Saturday’s article got enthusiastic responses from people supportive of Robert Mitton’s plan to commit suicide but didn’t drive many people to his blog – at least people who left comments.  Meanwhile, at last report, he’s received a whole 45 dollars in donations.  Like a lot of other disability activists, I suspect that’s pretty representative of society’s relative support, enthusiasm and commitment to helping us live compared to the enthusiasm to “compassionately” offer us “death with dignity.”

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

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!

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