ASAN Condemns Media Coverage of the Attempted Murder of Issy Stapleton
The Autistic Self Advocacy Network issued a statement on Monday, October 14th, expressing dismay at the media coverage of the attempted murder of Issy Stapleton, age 14.
Both local and national media coverage of Issy’s attempted murder have emphasized her mother’s alleged stress, the “burden” of Issy’s disability, and the insufficient state of autism services today (although Issy had returned home from an intensive 6-month residential placement less than 72 hours previously.) Rather than rallying with sympathy and support for the child victim of attempted filicide, media coverage has consistently attempted to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim.
This is abhorrent.
The facts are these: every child deserves the right to grow up free from violence and abuse. When a parent attempts to murder their child, they violate that basic social contract. Kelli Stapleton tried to murder her daughter. We do not accept any excuses for the murders of nondisabled children; disabled children deserve this same basic social protection. When someone tries to kill us, the crime is not that we had the audacity to be disabled–it is that we were murdered by the people we trusted and relied on most.
The Autistic Self Advocacy Network forcefully denounces the shameful approach the media has taken in wake of this tragedy, and send our support and sympathy to Issy. We wish her well, and above all, we tell her: what your mother did was not okay, and it wasn’t your fault.
We call on media everywhere to do right by Issy: address the appalling double standard in coverage. Report responsibly on a story with profound and unsettling social implications. Tell the story of the victim.
Stand with Issy.
Institute of Medicine’s Committee on Approaching Death Requests Public Comments Via Online Survey By November 1st
I’ve previously reported on disability community efforts to influence the workings of the Institute of Medicine’s Committee on Transforming End-of-Life Care, now renamed the Committee on Approaching Death. At the outset, NDY filed comments and issued a press release urging the Committee to add disability representation, specifically Kelly Buckland of the National Council on Independent Living, to its membership. Disability representation was not added. (It should be noted that the National Council on Disability’s Fernando Torres-Gil is a member of the Committee, but his background and expertise is in aging rather than disability.)
At the Committee’s second of five meetings, held in the Bay Area in California, DREDF’s Marilyn Golden provided public comments about some of the forms of discrimination that people with disabilities face in the health care system. She told the story of Terrie Lincoln, whose parents were pushed to end her life after a care accident rather than give her a chance to recover and live with quadriplegia. Fortunately, her parents fought for her and she’s glad to be alive, now raising her own young daughter.
At the Committee’s third meeting, NDY issued a press release and provided both video and written public comments about problems with Physician Orders for Life-Sustaining Treatment (POLST) that negatively impact people with disabilities.
With only two meetings left before its final report, the Committee is providing one last avenue for public input via an online survey, consisting of six open ended questions. The deadline is November 1st.
The introduction defines those who are “likely approaching death” very broadly:
To help the committee with its work, individuals and organizations are invited to share their thoughts about care for people who are likely approaching death. This includes people who have a serious and progressive illness or condition (disease that is growing or spreading or physical condition that is worsening).
Comments are invited in any or all of the following areas, presented in six questions.
Question 1: If you are an individual living with a serious progressive illness or condition, or a loved one of an individual please describe your experiences receiving care. Your stories may include how you have talked with health care providers, your family, and friends; how you have discussed and reviewed your spiritual or religious needs, your finances, or any other issues. Your stories may also include what you liked and did not like about communication with your providers and others who gave you support, treatment approaches, or any other aspects of care.
Question 2: If you are a family member or friend of an individual who passed away, what care or supports did you need and/or receive while your family member or friend was in the advanced stages of their condition. What care or supports did you need and/or receive after they passed? What care or support did you NOT receive and wish you had received during the illness, at the time of death, or afterwards?
Question 3: If you are a health care professional, please tell us about your experiences in providing care to individuals with serious progressive illness or condition and their families. What are the problems, opportunities, challenges, and successes you encounter? Does the term “end of life” impact the willingness of the individuals you work with to engage in the provision of care or the willingness to receive it? Please indicate what type of professional you are (discipline/specialty).
Question 4: What do you see as the biggest barriers to care (for individuals with serious progressive illness or condition) that is appropriate and easy to access?
Question 5: What three changes in the U.S. health care system could improve care of individuals with serious progressive illness?
Question 6: If you have additional thoughts about improving research, care, and education for or about individuals with a serious illness or medical condition who are likely approaching death, or if you would like to share information related to the committee’s work, please use the space provided below to do so. You may also email documents or articles to support your testimony to eol@nas.edu.
It is painfully clear that people who “have a serious and progressive illness or condition” face many barriers to accessing quality health care. DREDF and its partners have done some major work on health care disparities and discrimination against people with disabilities. Recently DREDF, NDY and others submitted public comments on the nondiscrimination regulations under the Affordable Care Act, and the IOM Committee on Approaching Death needs to be aware of all of the issues raised in those comments.
But sometimes it’s our personal stories that convey the issues most effectively. Here’s a chance to write yours, or the story of someone you know. We should have been a major voice in the membership this Committee, but this online survey is the vehicle we have. Please use it by going here and answering one or more of the six questions. You can make a difference! – Diane Coleman
Euthanasia, the Quebec Hearings, Donald Low and Some Great Replies
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
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]
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
[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.”