Euthanasia, the Quebec Hearings, Donald Low and Some Great Replies

assisted suicide, Canada, euthanasia, Our News & Commentary Blog, Quebec

Over the past couple of weeks, there have been hearings on the legalization of euthanasia in Quebec – and I’ll try to get more about that up soon.  They are still going on.  Proposed legislation would not be limited to people who are expected to die in a short time, but opens the door to the killing of people with nonterminal disabilities as well.

Into the current debate, a video made a big splash.  From wikipedia, here’s a description of Donald Low, so that non-Canadians can have a sense of how well-known and respected he is (was) in that country:

Donald Low (May 2, 1945 – September 18, 2013) was a Canadian microbiologist noted for his role in battling the SARS outbreak of 2003. He was microbiologist-in-chief at Mount Sinai Hospital, Toronto, from 1985 to 2013.

Donald Low graduated from medical school at the University of Manitoba. Low became a familiar face to the Canadian public during 2003’s SARS crisis;[1] although he had no official role, he was seen as calm and effective in press conferences about the response to the outbreak.[2] He was one of several physicians who were required to quarantine themselves at home during part of the outbreak.[3] In 2005 he took on the role of medical director of public health laboratory of the Ontario Agency for Health Protection and Promotion.

The last part of the entry mentions the video that Low made shortly before his death:

Low was diagnosed with a brain tumour in February 2013, and died September 18, 2013, at age 68.[2][4] In a video published after his death, Low calls for Canada to allow assisted suicide, saying “I’m just frustrated with not being able to have control of my own life, not being able to make the decision myself when enough is enough.”[5]

There have been some really great responses from the disability community to Low’s taped message.  First, here’s one from Bill Peace at Bad Cripple:

Hawking and Low strike me as oblivious to the typical experience of people with a disability. Typical meaning a life that is not respected or valued. A life dominated by unemployment, social isolation and economic deprivation. In sharp contrast,  Hawking and Low command instant respect. They are Ivory Tower scholars. Their intellects are powerful as is their prestige. No one will question the value of their lives. As such, they represent the tiny fraction of people with a disability that have attained great respect and the privilege that comes with it. I sincerely doubt if Hawking or Low put any thought into the rights of people with a disability. Hawking has never expressed any interest in people with a disability. Low was consumed with his own impending death and to my knowledge knew nothing about disability.

Please read the rest of his post here.

The next response is from Adrian Rhodes at his Flanoor Blog:

Approximately five days before his death, Low created a video in which he called for the legalization of physician assisted suicide.  He allegedly stated we needed assisted suicide as a right or all Canadians.  There are a couple of problems with these statements.  First, when I was in the hospital in November 2010, just before my cholecystectomy I was handed a form to sign: it clearly stated that I was not to make any major legal decisions two weeks before and two weeks after the operation.  I was being defined as legally incompetent on the basis of undergoing a surgical procedure.

Second, Low underlines how selfish the assisted suicide debate can be.  Low is deceased.  He will now no longer be impacted by any statements he made.  In other words, by demanding death with dignity just before he died, he was leaving us with the emotional and psychosocial aftermath.  I had a discussion with a friend recently wherein their position was that they wanted euthanasia and they didn’t’ care what the effect would be; they would be dead.  And that was their whole position of ‘acceptance’.  Since these two ‘ideals’ are related, that we need this as a society because I want and think I need this as a person, is an ultimate in self-centredness.

Please read the rest of his post here.

The CBC interviewed disability rights advocate/activist/scholar Catherine Frazee.  You can listen to the interview at this link.  (I apologize for the lack of a transcript – it’s been a hectic week or two here and I haven’t had the energy to transcribe the interview.)

Op-Ed: “Assisted suicide: a chilling prospect for disabled people” by Tanni Grey-Thompson

assisted suicide, Our News & Commentary Blog, Stephen Hawking, Tanni Grey-Thompson, United Kingdom, , ,

Tanni Grey-Thompson is well-known in the UK and to those who follow the paralympics.  Some of her biography is excerpted from the wikipedia entry on her below, for the benefit of readers outside of the UK who don’t follow athletic competitions:

Dame Carys Davina “Tanni” Grey-Thompson,[2] Baroness Grey-Thompson, DBE (born 26 July 1969) is a Welsh former wheelchair racer and is a parliamentarian and television presenter. She was born in Cardiff, Wales.

Grey-Thompson was born with spina bifida and uses a wheelchair. She is considered to be one of the most successful disabled athletes in the UK. She graduated from Loughborough University in 1991 with a BA (Hons) degree in Politics and Social Administration.

***

In preparation for her retirement from the track, she expanded her television presenting career on BBC Wales and S4C, as well as BBC One.

Grey-Thompson is a non-executive director for UK Athletics (2007), sits on the board of the London Marathon (2007) and the board of Transport for London (2008). She is Chair of the Women’s Sports and Fitness Foundation Commission on the Future of Women’s Sport.

Grey-Thompson is patron of numerous charities including Sportsleaders UK and is a trustee of V, the charity that helps young people become volunteers. She is Vice-Chairman of the Laureus World Sport Academy and a trustee of the Sport for Good Foundation.

***

On 23 March 2010, Grey-Thompson was created a Life Peer on the recommendation of the House of Lords Appointments Commission (HOLAC). Despite previously suggesting a desire for a title with a Welsh connection,[8] her title was conferred as Baroness Grey-Thompson, of Eaglescliffe in the County of Durham on 23 March 2010.[9] Grey-Thompson was introduced in the House of Lords on 29 March,[10] swearing the oath of allegiance in both English and Welsh and sits as a crossbencher.[11]

Her personal website is here.

On Monday, September 23, The Times published an essay by Grey-Thompson titled “Assisted suicide: a chilling prospect for disabled people.”  Below is a slightly different version of the essay, shared here with the author’s permission.

 

Stephen Hawking has expressed the view, in the course of a BBC interview, that people “who have a terminal illness and are in great pain should have the right to choose to end their own life”. They do, of course, have that right now: ending your own life isn’t a criminal offence. What Professor Hawking means, presumably, is that the law should be changed to legalise what is being euphemistically called ‘assisted dying’ – or, to put it another way, that doctors should be licensed to supply lethal drugs to terminally ill people to help them commit suicide.

 

There is, in fact, a Private Member’s bill, in the name of Lord Falconer, before the House of Lords at this moment proposing just that. Professor Hawking believes that “there must be safeguards that the person concerned genuinely wants to end their life and they are not being pressurised into it”. This is a fair enough caution to sound. What is remarkable, however, is that Lord Falconer’s ‘assisted dying’ bill does not contain any specific safeguards to ensure that these and other conditions are met.

 

Professor Hawking states that “human beings should not be allowed to suffer any more than animals”. This is a well-worn argument of the euthanasia lobby – that we put down suffering animals out of kindness, so why don’t we do the same for humans? But what those who use this argument seem to overlook is that people don’t always take their pets to be put down out of compassion: they sometimes do so because they are a nuisance or because they are proving expensive to treat or to feed. Is that the sort of society we want to see?

 

Those of us with disabilities are all too familiar with the view that many in society take of us – that they wouldn’t want to live with our limitations and that our lives are less worth living than the lives of others. I myself have encountered such attitudes: I have been told that ‘people like me’ do ‘a good job’, I have had it put to me by a medic that I should not have children and I have even been patted on the head by a colleague. The Paralympics, in which I have had the opportunity to participate, is sadly an all too rare occasion in which people with disabilities are valued.

 

Legalising ‘assisted dying’ for terminally ill people illness reinforces prejudices about people with disabilities. Terminal illness and physical disability aren’t, of course, the same thing – many people with disabilities aren’t terminally ill. But terminal illness can often bring with it disability of one kind or another and it’s not a big step in popular perceptions to see the two as in some way linked.

 

That’s why the majority of people with disabilities, including me, are afraid of a law that would offer a lesser standard of protection to seriously ill people than to others. Anyone who is inclined to discount such fears should read the report of Lord Falconer’s self-styled ‘commission on assisted dying’: it is on the recommendations of this unofficial and self-appointed group that his Private Member’s bill rests. Their report recommends that physician-assisted suicide should not be offered to people with disabilities who are not terminally ill “at this point in time“. It is those italicised words that send a chill down the spine of many people with physical disabilities. Lord Falconer’s ‘assisted dying’ bill may be well-intended. But it risks becoming a law to cater for the strong rather than to protect the weak.

My thanks to Tanni Grey-Thompson for permitting us to share this and to Liz Carr for helping to connect us.

 

 

 

Not Dead Yet Hires John Kelly as Regional Director for New England States

Our News & Commentary Blog

[Ed. Note – For a pdf-formatted version of this press release, including a photo of John, go here.]

Boston, MA (PRWEB) September 24, 2013

Not Dead Yet has hired John Kelly as regional director for advocacy in the New England states. Kelly is also director of Second Thoughts Massachusetts, a disability rights group which played a pivotal role in defeating an assisted suicide ballot referendum in Massachusetts in 2012.

John Kelly was highly visible as an advocate against the ballot initiative known as “Question 2”. Confounding assisted suicide proponents who often tried to depict assisted suicide opponents as conservative, Kelly simultaneously supported Question 3 to legalize medical marijuana while opposing Question 2. The Second Thoughts home page even featured a bumper sticker with the “No on 2/Yes on 3” message and related graphics.

Kelly appeared in several debates against Dr. Marcia Angell, a leading advocate for assisted suicide, including a broadcast interview of the two of them on National Public Radio’s “All Things Considered”. His insights into life with quadriplegia were also sought out by CNN International in connection with coverage of the high-profile assisted suicide case involving Tony Nicklinson in the UK.

Kelly has also written a number of published articles and opinion pieces on assisted suicide.

Since the defeat of the Massachusetts assisted suicide initiative in November 2012, Kelly has worked with disability advocates to oppose assisted suicide bills in both Connecticut and Vermont, testifying on behalf of both Not Dead Yet and Second Thoughts.

“John brings long term experience on key issues Not Dead Yet addresses as well as top-notch communication skills to his new position,” said Diane Coleman, Not Dead Yet president and CEO. “We’re very fortunate to be able to expand his role in our efforts.”

NDY Public Comment Impacted By A Personal Sorrow

Our News & Commentary Blog

On September 9th, I submitted another comment letter to the Organ Procurement and Transplantation Network (OPTN).  The letter addressed the latest proposed rewrite of OPTN policies.

There are two new things about this comment letter that I want to share.  The first is a personal sorrow.  Four days before I wrote the letter, I lost my younger brother Steven to liver failure.  The emotions of that loss drove me to express my comment in a different way than usual.  Here are the two paragraphs that convey the relationship between my loss and the policy concerns NDY has been pressing upon OPTN for nearly two years.

My comments this time are brief because I am dealing with the loss of my younger brother, who passed away last Thursday.  I don’t normally bring my personal life into these discussions, but it is very relevant because my brother died from liver failure.  He was unable to qualify for a transplant and, without getting into details, this was in part due to the stringent criteria in place based on the scarcity of organs for transplant relative to the overall public need.  My brother’s love and support toward me, especially when I was growing up as a teen and young adult with a disability, affected my life in profound and positive ways, so I hope that you will believe me when I express the value I place on organ donation.

Yet as I sit here in the type of motorized wheelchair I have used since I was age eleven due to a progressive neuromuscular disability, thinking about my brother and wanting to be able to be an organ donor someday, I cannot help but fear what I have seen from OPTN over the last two years.  The OPTN policies and rewrites of bylaws, coupled with the utter failure to respond substantively to our comments and concerns, convey a deep and abiding devaluation of people with the most severe disabilities, the kind of bigotry that is either unconscious or that you feel is somehow justified.  As someone who is very likely to need a ventilator in the future, someone who works with others who use ventilators full time already, I continue to be concerned about the complete lack of protection for people’s right to informed consent and right not to be subjected to organ procurement activities in advance of an informed decision to withdraw life support. 

Second, the letter addresses a startling problem in the OPTN rewrite.  The rewrite’s section on nondiscrimination (Section 5.4.A) makes OPTN’s discriminatory attitude toward people with disabilities eminently clear:

A candidates’ citizenship or residency status in the United States must not be considered when allocating deceased donor organs to candidates for transplantation.  Allocation of deceased donor organs must not be influenced positively or negatively by political influence, national origin, race, sex, religion, or financial status.

The failure to include disability status in the listing of protected groups speaks volumes and is unacceptable.  As my letter notes, “disability based discrimination in organ transplant eligibility has received recurring attention from the disability community over the years.”  I referred OPTN to the best document I have seen on this subject, a recent policy brief by the Autistic Self-Advocacy Network.

For an update on the Paul Corby transplant eligibility case reported in the ASAN policy brief, and a chance to sign a petition to support nondiscrimination in Corby’s eligibility for a heart transplant, go here. 

Finally, to read the rest of my newest comment letter, go here.  And previous OPTN comment letters can be found here.  It’s time for the U.S. Dept. of Health and Human Services, which contracts with and theoretically oversees OPTN, to take a stand and enforce disability rights in the organ procurement and transplantation system. – Diane Coleman

 

Stephen Hawking and Assisted Suicide: Media and Blogs

assisted suicide, bill peace, blog recommendations, bloggers, media coverage, Our News & Commentary Blog, , , , ,

I meant to get this all up a little earlier, but life and exhaustion interfered a little with those plans.  Below are links to coverage and commentary I recommend highly regarding the Stephen Hawking/assisted suicide kerfuffle:

On Wednesday, September 18th, I participated in a 10-minute live exchange with Barbara Coombs Lee of Compassion and Choices.  The show was Consider This which airs on weekday nights at 10 to 11 pm ET on Al Jazeera America.  While we covered a fair amount of territory regarding Stephen Hawking and assisted suicide laws, the available video is limited to a discussion of Barbara Mancini, who is facing assisted suicide charges in Pennsylvania, arguably the least interesting (to me, anyway) part of the show.  You can view the excerpt at “Should family members face criminal charges?”

Earlier this week, I referenced a 2002 article in the Chicago Reader written by media critic and journalist Mike Miner about some issues Not Dead Yet took on in the Chicago area that year.  Miner was motivated to revisit that same piece and to attempt to pick through the messy issues presenting themselves over the last week regarding Stephen Hawking and my own reaction on the blog to his endorsement of legalization of assisted suicide.  He starts with some kind words about me in “When to pull the plug – or should we ever?”

Two friends in the disability community have written blog posts reacting to the Stephen Hawking announcement.  They are both distinctly different from the reaction posted here. Both are thoughtful, well-written and – I hope this is clear – worth your time to read.

NDY board member, anthropologist, academic and activist Bill Peace writes about Stephen Hawking’s unusual status – one of extreme privilege and serious disability – and how it might affect his perspective in “Stephen Hawking on Assisted Suicide.”

Gary Presley is, in his own words, an “essayist, book reviewer, and author of Seven Wheelchairs: A Life beyond Polio.”  Gary reflects on pain, logic, and spirituality in “A Logical Death.”