ABC News: NDY’s Stephen Drake Interviewed for Stephen Hawking Story and additional info/context

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I was interviewed this morning by Susan Donaldson James, a digital reporter of ABC News.   The story she was writing – now finished – concerned Stephen Hawking’s recent endorsement of assisted suicide and a little about the Barbara Mancini case.

Overall, I believe the perspectives of NDY were portrayed fairly in the story, even though some of my points were incompletely reported – more about that below.  I believe those decisions were most likely made due to limitations on word count for the story rather than any other issue.  Below is the link to the story, with some relevant excerpts:

Stephen Hawking Flip On Assisted Suicide Divides Right-to-Die Movement

Stephen Hawking, the brilliant theoretical physicist who has been on life support for 23 years battling ALS, has fueled a deep divide in the right-to-die movement by saying that those who have a terminal illness and are in pain should be able to end their lives “without prosecution.”

“We don’t let animals suffer, so why humans?” he told the BBC this week, noting that there should be adequate protections so that no one is condemned to die against their wishes.

“There must be safeguards that the person concerned genuinely wants to end their life and they are not being pressurized into it or have it done without their knowledge or consent as would have been the case with me,” he told the interviewer, according to the Guardian newspaper.

Advocates said his position reversal will help fuel more acceptance of physician-assisted death in the United States.

But a prominent disability group opposed to favorable laws in Oregon, Washington state and Montana, said Hawking’s words should not trump the “millions” of disabled Americans who say legalized “suicide” makes them more vulnerable.

Hawking, now 71 and the author of the scientific bestseller, “A Brief History of Time,” once called physician-assisted dying “a great mistake,” recalling a moment in 1985 when he had pneumonia and his first wife Jane Hawking had been given the opportunity to turn off all the machines.

One point I made about Hawking’s statement is that his “comfort zone” for legalization doesn’t exist as a law anywhere.  For example, here in the US, the only real criterion in the states that have legalized assisted suicide (although we’re still not clear where Vermont will end up in terms of criteria) is that you have a prognosis of six months or less to live due to a terminal illness.  Unremitting pain is not a requirement for “eligibility.”  In Europe, countries like the Netherlands, Luxembourg, Belgium and Switzerland have all adopted laws in which neither “terminal” nor “pain” are requirements for eligibility.  Rather, those countries rely on a highly subjective and expansive criterion of  “unrelievable” suffering.

The last sentence above begins a segment of the story that also serves to conflate the right to refuse treatment/suicide/assisted suicide, with Compassion and Choices’ Barbara Coombs Lee playing along.

Here’s the long part with me:

Stephen Drake, a research analyst for the disability rights group Not Dead Yet, said he worries that Hawking’s flip will resonate among those who are pushing for wider legal acceptance of euthanasia as in countries like the Netherlands, Belgium and Switzerland.

Drake wrote a response to the Hawking interview on the Not Dead Yet website, “proving that being a genius in one area doesn’t stop you from staying stupid stuff outside of that area.”

Drake expressed concern that the “euthanasia movement” may use Hawking “as a weapon” by saying, “Look at this brilliant disabled genius. His voice counts for more than all of the disability activists who have spoken in the United States, Canada and the United Kingdom.”

Drake also took issue with Hawking’s comparison of animal suffering to human pain.

“That is a common remark in favor of assisted suicide,” he said. “In fact, it’s a myth. First, it ignores all the reality of factory farming and what we do to obtain meat. Those are anything but humane conditions.”

If laws treated humans like animals, that could open the door to more abuse against the sick and disabled, Drake said, adding that right-to-die laws that are “sold on the idea of pain and suffering” are “bad public policy.”

“The reasons are things like loss of physical autonomy, fear of being a burden and loss of dignity,” he said. “These are not medical issues, they are complex social issues.”

There are a couple of omissions here:

While I did indeed mention factory farming in the context of animal suffering, anyone who read yesterday’s reaction to Stephen Hawking knows that my main focus was exposing the common myths surrounding the “compassionate” reasons for pet euthanasia.  I suspect that an explanation of that part of the response was a problem explained with my theory about word count limits.

Likewise, in the last sentence, “the reasons” refer to the documented reasons that have been reported that people actually seek assisted suicide.

The last part of the article contains brief comments by me that I’ve made elsewhere about the Barbara Mancini case in Pennsylvania. It’s a dream case for Compassion and Choices to see go to trial and shows a strange use of prosecutorial discretion.

Stephen Hawking Endorses Assisted Suicide, Saying “We Don’t Let Animals Suffer,” Proving that Being a Genius in One Area Doesn’t Stop You From Saying Stupid Stuff Outside of That Area

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World-renowned physicist Stephen Hawking, who has lived with ALS, a progressive neuromotor condition, has endorsed assisted suicide in a recent BBC interview.

His comments below reveal that being a genius in a given field doesn’t guarantee brilliance or even a lack of stupidity outside of that field. His remarks show a lack of any kind of depth, insight or real thought about the subject.  Here’s a bit from the BBC interview:

UK cosmologist Prof Stephen Hawking has publicly said he backs the notion of assisted suicide for people with terminal illnesses.

In an interview with the BBC he said: “We don’t let animals suffer, so why humans?”

Prof Hawking, who has progressive motor neurone disease, has in the past been less candid about the idea, saying “while there’s life, there’s hope”.

But he stressed that there must be safeguards to prevent abuse.

Gee, “safeguards,” professor?  What would they be? How would they work?  Why just “terminal?” And while we’re at it, what’s your definition of “terminal?”

And about those animals….  Do you really think that chickens, cattle, etc. live comfortably in factory farming conditions?

Maybe you were just talking about pets.

Try reading this before you wax poetic about “suffering” and pets:

Let’s put this pet theory to sleep

Excerpt:

 

…the statistics on the euthanasia rates of animal rates in shelters paint a grim picture. The reasons owners abandon them there aren’t very pretty either:

* They are abandoned and unwanted. According to the American Humane Association, “56% of dogs and 71% of cats that enter animal shelters are euthanized.”

* They have a personality or behaviour problem. (According to the SPCA, this is the single most common reason for euthanizing dogs accounting for as much as 60% of cases.)

* Their caregivers are no longer willing or no longer able to continue caring for them.

* They are considered to be unattractive.

* They have a treatable health condition but euthanasia is a cheaper alternative.

* They are getting old.

* They have physical traits considered to be undesirable for their breed.

* They have untreatable terminal diseases and are in pain.

In many cases, there is no single, clear reason.

The reality, Professor Hawking, is that you should be grateful you’re a human.  Most likely, if you were someone’s pet dog, they would have “put you out of “your misery” a long time ago, even if you didn’t feel particularly miserable.  But they’re the ones who get to tell everyone they saved you from “suffering.”

 

the statistics on the euthanasia rates of animal rates in shelters paint a grim picture. The reasons owners abandon them there aren’t very pretty either:

* They are abandoned and unwanted. According to the American Humane Association, “56% of dogs and 71% of cats that enter animal shelters are euthanized.”

* They have a personality or behaviour problem. (According to the SPCA, this is the single most common reason for euthanizing dogs accounting for as much as 60% of cases.)

* Their caregivers are no longer willing or no longer able to continue caring for them.

* They are considered to be unattractive.

* They have a treatable health condition but euthanasia is a cheaper alternative.

* They are getting old.

* They have physical traits considered to be undesirable for their breed.

* They have untreatable terminal diseases and are in pain.

In many cases, there is no single, clear reason.

– See more at: http://www.mercatornet.com/articles/view/lets_put_this_pet_theory_to_sleep#sthash.iGZcP18q.dpuf

the statistics on the euthanasia rates of animal rates in shelters paint a grim picture. The reasons owners abandon them there aren’t very pretty either:

* They are abandoned and unwanted. According to the American Humane Association, “56% of dogs and 71% of cats that enter animal shelters are euthanized.”

* They have a personality or behaviour problem. (According to the SPCA, this is the single most common reason for euthanizing dogs accounting for as much as 60% of cases.)

* Their caregivers are no longer willing or no longer able to continue caring for them.

* They are considered to be unattractive.

* They have a treatable health condition but euthanasia is a cheaper alternative.

* They are getting old.

* They have physical traits considered to be undesirable for their breed.

* They have untreatable terminal diseases and are in pain.

In many cases, there is no single, clear reason.

– See more at: http://www.mercatornet.com/articles/view/lets_put_this_pet_theory_to_sleep#sthash.iGZcP18q.dpuf

the statistics on the euthanasia rates of animal rates in shelters paint a grim picture. The reasons owners abandon them there aren’t very pretty either:

* They are abandoned and unwanted. According to the American Humane Association, “56% of dogs and 71% of cats that enter animal shelters are euthanized.”

* They have a personality or behaviour problem. (According to the SPCA, this is the single most common reason for euthanizing dogs accounting for as much as 60% of cases.)

* Their caregivers are no longer willing or no longer able to continue caring for them.

* They are considered to be unattractive.

* They have a treatable health condition but euthanasia is a cheaper alternative.

* They are getting old.

* They have physical traits considered to be undesirable for their breed.

* They have untreatable terminal diseases and are in pain.

In many cases, there is no single, clear reason.

– See more at: http://www.mercatornet.com/articles/view/lets_put_this_pet_theory_to_sleep#sthash.iGZcP18q.dpuf

An elderly woman’s “mercy killing” looking more like murder – an overview of elderly homicide/suicides

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(Editor’s note:  Virginia Chumbley was 48 years old when she was shot to death by her husband.  Technically, she doesn’t fit into the “elderly” data and case examples discussed in this blog post.  However, even if Virginia Chumbley was too young to be considered elderly, the press and public is responding to her shooting death in exactly the same way they react to the murders of elderly women by their husbands – with sympathy for the alleged killer.  Over the past 11 years or so, it’s my opinion that the public and press will assume that when a husband murders his wife, the public will assume it was done out of love, compassion and mercy – as long as his wife was old, ill or disabled.)

In the early morning hours of Wednesday, August 28, 48-year-old Ernest Chris Chumbley called 911 and reported that he had shot his wife to death in their home in London, Kentucky. Later that same day, Chumbley was charged with murder by police. Due to a videotaped “interview” with Chumbley by a local TV station, the story became national news, peaking on August 29 and 30.

Here’s an excerpt from what looks to be the complete AP story that made the rounds on August 30th, this one from Lawofficer.com:

Chumbley told WKYT-TV from jail that his wife wanted him to end her pain, and he told her he could offer her “what the doctor gave you.”

“She said ‘No, I want you to stop my pain for good,'” Chumbley told the news station. Mosley said Chumbley has declined further interviews from the jail.

There’s more elsewhere from the “interview,” but it plays out the same.  Chumbly claims throughout that his wife demanded he kill her and that it was the only thing he could do.  A significant number of headlines – at least a third – call Virginia Chumbley’s murder a “mercy killing” – but without scare quotes, suggesting that she was killed as an act of mercy is a fact rather than an accused killer’s claim.

I used scare quotes around “interview” because Chumbley wasn’t asked any real questions about a couple of pesky details that get in the way of the idea that this was “mercy” and there was nothing else he could do.  Again, from the story:

Ernest Chris Chumbley, 48, cries throughout the 16-minute call placed around 2:30 a.m. Wednesday and says he shot the woman twice in the face with a .32-caliber handgun in their southeastern Kentucky home. (Emphasis added.)

Shooting someone in the face is unusually brutal.  It means they see the shot coming and it means you don’t care about any risk of disfiguring their face.

More:

He told the 911 dispatcher that his wife was a cancer patient and was supposed to go to the doctor the next day. (Emphasis added.)

This should have been a big red flag.  Maybe a real reporter could have asked him why he didn’t give his wife some extra pain meds and then do whatever it took to get through the night? When at the doctor’s office, they could have laid out just how bad things were (if true) and demanded better pain relief, hospice, something to give some relief to them both.

While it’s too early to tell, Ernest Chumbley’s “mercy killing” story may be falling apart.  His wife’s family is speaking out, and they aren’t buying it:

Her family says Virginia ”Jenny Mae” Chumbley was suffering from cancer, but she never would have wanted to die, or for someone to take life from her.

“She loved her kids, her grandkids, what more could you live for?” said her mother, Rita Smith after a preliminary hearing in Laurel District Court Tuesday morning.

And more…

“You tell me, if I’m dying of cancer, with all of these little ones around me, something to give me to live for, to give me hope, why would I look to you and say take my life,” said Smith.

The judge says the grand jury will consider the murder charge, and Chumbley is to stay in jail on a $200,000 cash bond.

“Now he took my baby’s life. Let the Justice system take his,” said Smith.

She claims Chumbley also kept her daughter from some of her doctor’s appointments and chemotherapy, treatments that could have helped her.

Personally, I don’t think we should view the family’s claims – among them that Ernest Chumbley kept his wife from some medical appointments – as any less credible than the self-serving statements of the man who admits to killing Virginia Chumbley.  I don’t expect this to impact public opinion, though, due to simple math.  My own google news search yielded about 80 or so instances of stories posted emphasizing Chumbley’s “interview” and/or claims of “mercy” as a reason for killing his wife.  Some even appeared on news sites outside of the U.S.  In contrast, only two local news sites have posted stories about the reactions and statements of Virginia Chumbley’s family to her murder.  Only a very small audience is getting to see/hear what the family has to say compared to the very large audience who saw Virginia Chumbley’s death framed as a “mercy killing.”

None of this is unusual.  The “rush” to judge an elderly/sick/disabled  woman’s violent death a “mercy killing”, and contrary evidence emerging but reported to a smaller audience, are common in the media coverage of the cases in elderly homicide/suicides (or just homicides) involving husbands and wives.

We encountered this in the very first instance we encountered up close involving the Chicago media virtually inventing a “mercy killing” years ago – the media, without comments from the alleged perpetrator, his family or his lawyer – managed to fabricate a “mercy killing” through implying the shooting death of a hospitalized woman by her husband automatically should be labeled a “mercy killing” and asking leading questions of neighbors.  When facts started to intrude on this fabrication, the stories had become much shorter and had fallen off the front page.  It’s all recorded in excruciating detail in an article I wrote in The Ragged Edge back in 2002:

The first I heard of Shirley Harrison’s violent death was on a WGN news broadcast on New Year’s Day. The announcer said there’d been a “mercy killing” at Christ Hospital — a husband had allegedly shot his wife to death as she lay in her hospital bed.

Being late for a meeting with friends, I took a minute to call the station and register a complaint for the use of the term “mercy killing.” Unfortunately, I was about to get very used to hearing the term in regard to Shirley Harrison’s death.

As you can see from the above, the press started using the term “mercy killing” when literally nothing was known except that a woman had been shot to death by her husband while she was in the hospital.

Shirley Harrison was a 74-year-old woman who’d been admitted to a Chicago area hospital after having a stroke. On New Year’s Eve, her husband came into the hospital with a gun and shot her three times in the chest. He then shot himself once. He survived. She didn’t.

For two full days, this was all the information available to the public and press regarding the death of Shirley Harrison. Unfortunately, this didn’t stop the construction of a story that depicted Shirley Harrison as “suffering,” and her death a “mercy killing.”

Some excerpts from the early coverage:

The Daily Southtown’s coverage began Jan. 2: “Neighbors: Man wanted to end wife’s suffering.” As might be expected from the headline, the story was one of speculation from neighbors. The Harrisons “didn’t mingle with people,” said one; still, those quoted seemed confident in describing the Harrisons’ relationship, Shirley Harrison’s health and emotional status and Harrison’s motives for killing her.

One anonymous neighbor said “there was just no hope for her,” adding that her husband “just didn’t want her to suffer.” Another recalled seeing the couple a month previously — Shirley Harrison, sitting in the car, gave a thumbs down when asked how she was doing. She “had been suffering and was in so much pain,” said that one. It didn’t seem to occur to the reporter or the neighbor that Shirley Harrison’s “thumbs down” could have many explanations — including one that might mean “Tom’s being an asshole today.”

It seemed that Southtown reporters were asking specifically about the murder being a “mercy killing.” The paper reported that police “would not say whether Harrison shot his wife out of mercy for her suffering.” Since it’s unlikely that the police would have issued that refusal spontaneously, it’s reasonable to assume that they were responding to specific questions asked by reporters.

*****

“They were like 2 little birds together” read the headline of the Sun-Times’s Jan. 3 article. The piece, by reporters Kate Grossman and Ana Mendieta, began with quotes from Mary Derda and another neighbor claiming to be “close friends” of the Harrisons; the headline was from Derda: Tom Harrison “did not kill her for malice or meanness. They were like two little birds together.” We also learn that Thomas Harrison has diabetes and would only eat food prepared by his wife. Further down, Grossman and Mendieta look at the growing phenomenon of homicide-suicide cases among elderly couples.

Finally, some factual information made its way – painfully and slowly – into media coverage:

The Daily Southtown’s Jan. 5 article, its shortest so far, told us that Shirley Harrison had been in a regular hospital room — not the ICU — at the time of the shooting, and that Thomas Harrison told several people he wanted his wife to die. He allegedly shot her after sending a nurse to get a sleeping pill for his wife, reported the paper.

The Sun-Times’s story that day was longer. Prosecutors at Harrison’s bedside bond hearing provided information that for the first time gave readers a different picture: Tom Harrison admitted his wife never asked him to kill her. Readers also learn that she was awake when she was shot to death.

John Gorman, spokesperson for the prosecutor’s office, told the Sun Times that Shirley Harrison’s doctor “told the defendant that morning that her condition seemed temporary and seemed to be improving,” adding that Shirley Harrison had “never complained of pain or suffering to hospital officials, or the defendant.” Thomas Harrison was ordered held on a $1 million bond. The Sun-Times story quoted Northwestern University law professor Paul Robinson criticizing the first-degree murder charge and amount of bail ordered in the case.

The Daily Southtown’s Jan. 6 story was its first to include prosecutors’ statements about the lack of evidence that Shirley Harrison was suffering or in pain.

For those who like closure, NDY met with some success in turning the rhetoric and framing around.  We did this both through our use of press releases and our presence at numerous hearings as Thomas Harrison’s case made its way through the court.  Two things I never reported as life got us involved with other issues: Thomas Harrison stunned everyone when, during one hearing, he announced a plea of “guilty” to murder – no plea bargain or defense.  I guess that Thomas Harrison finally came to grips with what he’d done and he knew it was murder, even if many were prepared to call it something else.  Also, during the trial, several relatives of Shirley Harrison came to us quietly in the halls before and after hearings to thank us for our efforts on Shirley Harrison’s behalf.  On top of their grief, they were furious with the way in which the press was practically calling her murder a blessing.

You can read the full story – minus those additions above – right here.

For an additional perspective on these and related events, please check out “No Mercy” by the Chicago Reader‘s media critic Michael Miner.  He heard about a protest we did at the Chicago Tribune and wrote about that action and the Harrison case as well.

Anyone who has read this blog entry this far probably noticed that both the cases so far involved elderly men killing their wives.  There is a good reason for that.  As I’ll go into below, roughly 90% of homicides in which one elderly person kills another in a marriage (hetero marriages, no data that I know of for same sex couples so far), involve the husband killing his wife, usually with a gun.  Sometimes the killer attempts suicide and sometimes he doesn’t.

There’s a pretty good summary of research regarding this growing type of domestic violence in an article by Diana Reese published in the Washington Post in January this year (2013):

Murder-suicides among people 55 and older have increased from 21 percent in 2002 to 25 percent in 2011 of the total murder-suicides in the United States, according to the Violence Policy Center.

A murder-suicide involving an elderly couple occurs about every two weeks in Florida, Donna Cohen, a professor at the University of South Florida, told the Kansas City Star. The author of several scholarly research articles on the topic, Cohen estimates that 20 older Americans die each week as the result of murder-suicide.

The typical case? A depressed, controlling husband who shoots his ailing wife — without her permission, according to Cohen. For most, this isn’t the romanticized Romeo and Juliet suicide pact with the couple agreeing on the time and place to ride off into the sunset together.

Although the Snellings might have agreed to end it together, the majority of murder-suicides among older couples are not suicide pacts, reports Sonia Salari, a sociologist at the University of Utah. Salari analyzed data from 225 murder-suicides in which one member was age 60 or older.

Experts say depression, exhaustion and isolation all play a role; often, it’s men who are thrust into the unfamiliar role of caregiver. They may suffer from undiagnosed clinical depression. And if they learn their own health problems put them at risk of dying before their spouses, they may believe that no one else can take care of their wives as well as they can.

And they don’t bother asking their wives for permission; in fact, the spouse is often unaware of the plan — and probably wouldn’t agree to it.

I’ve been aware of Donna Cohen’s work for years.  Sonia Salari’s work is new to me.  Somehow I don’t think it’s at all surprising that the two researchers, looking at different groups at different times, still come up with remarkably similar findings.  Unfortunately, empirical data isn’t something most reporters are interested in – nor are groups like Compassion and Choices, who have sought to exploit these tragedies as somehow making a case for assisted suicide.

The point is – if you are somone who might write, report, or be asked to comment on a so-called elderly “mercy killing” case, you have no excuse for reflexively following an established script.  A few google searches or using the links above will get you acquainted with the work of researchers like Cohen and Salari.  To ignore the research and speak without that information is the depth of irresponsibility – and can further perpetuate the myths that grotesquely write off the violent deaths of elderly women as “acts of mercy.”

 

 

Blog Recommendation: Two to Read from the Flanoor Blog by Adrian Rhodes

assisted suicide, bioethics, blog recommendations, bloggers, Canada, disabilities, euthanasia, Our News & Commentary Blog

A couple of days ago, someone sent me a friend request on Facebook.  After I accepted, we exchanged a few pleasantries and info – and then he mentioned something about a blog.  I’m always happy to find other thinkers and writers on the net that I can read and that I can point others to.  I’m happy to say that my newest Facebook friend Adrian Rhodes is also the newest of those bloggers I can point to – and read for myself.  Adrian describes himself as a social commentator/researcher/person of hidden disabilities – and his blog covers a fairly wide range of topics.  Two recent ones are centered on the assisted suicide/euthanasia debate in Canada.  The full title of his blog is “Flanoor blog: observations on life.”

Just yesterday, Adrian posted a response to an op-ed that appeared in the Toronto Star earlier this summer.  Here’s an excerpt:

Last week, I wrote about Gifford-Jones’ piece in the Toronto Sun extolling the virtues of assisted suicide/euthanasia.  I pointed out that there were problems with his position: namely, lack of real-world connections, saying there were no problems with medically provided death.
In this post, I point out there is an alternative way of looking at the issue: cost savings.  It is said that our medical system is broke.  So when Thomas Walkom ran a column in the Toronto Star on Saturday June 15, 2013, he made some good points no-one else ever seemed to make: it’s all about the money.  Walkom provides a more cogent argument than Jones: he does not resort to name-calling or ad hominem attacks in his piece.  This apparent distance makes the tone of his article a little easier to take.
For example, Walkom points out that “Quebec, however, is talking about more than assisted suicide.  Its Bill 52 would allow doctors to administer the lethal dose.” [A8]  This is different than standing by while an infant is starved to death over a course of days or weeks.  It is this activity that some doctors find unpalatable: the notion that killing has become part of curing.  And that is how Bill 52 is stated: euthanasia is now considered part of palliative care in Quebec’s Bill.
Read the rest of the blog entry here.
Just today – August 16th (I said these were recent, didn’t I?) Adrian has posted a review of Tom Koch‘s recently published book, “Thieves of Medicine: When Bioethics Stole Medicine.”
(Confession – for reasons that escape me, we haven’t ordered a copy of Tom Koch’s book yet.  That will be rectified this weekend.  Tom Koch is a friend and supporter of Not Dead Yet and we have great respect for his work.)
Below is an excerpt of Adrian’s review of Tom Koch’s recently published critique of bioethics:
This was a difficult review to write, not because of the topic of bioethics, nor because of the potential emotional impact of the subject, but because this book is hard to categorize.  Is it history, ethics, anthropology or philosophy?  It is in fact all this, because Tom Koch, a gerontologist and ethicist, is so far-ranging over this topic at hand.
His  basic thesis is simple: the promises of professional ethicists have not come true.  The reason is also simple: ethicists convinced us that traditional ethics of care first for patients has been hijacked in the favour of money and research.  This is a theme to which Koch returns time and again in his book.
For anyone interested in ethics, medical care, life issues or the patient experience in a theoretical perspective, this is a good book.  It helps that Koch is Canadian, because he has a Canadian awareness that is sometimes lacking in books of this type.  Koch takes us through a potted philosophy course, highlighting Kant and Mill, showing how these philosophers were misinterpreted to suit the ideology of ethicists in favour of research and money.
Please read the rest of the review here.

 

 

Guest Blog by Amy Hasbrouck: The Thrill – Spoiler Alert

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I am not a theatre buff, so I won’t try to write a review of Judith Thompson’s play The Thrill, currently at the Stratford Festival in Ontario.  It is a “what if” play, taking its inspiration, starting point, and much of its material from a New York Times Magazine article by Harriet McBryde Johnson entitled “Unspeakable Conversations.”  The 2003 article describes Johnson’s exchanges with Princeton bioethicist Peter Singer between 2001 and 2002, when she spoke at Princeton on assisted suicide.

In her article Harriet Johnson made a throw-away comment about her “head being turned” by Singer’s polite, respectful and appropriate behavior on their meeting at Princeton.  The playwright spins out the scenario of “what if” the two fell in love.

In the first act, Thompson introduces Elora Dixon, a lawyer and disability rights activist with strong beliefs, smarts, southern style and the heart of a poet.  Her personal assistant, Francis, is a devoted friend and counselor who shares her earthy sense of humour.  Compared to Peter Singer, the character of Julian Summer is “more of a humble pop philosopher with one mega-hit book” who teaches at McGill University.  Elora and Julian meet when he stops in Charleston, South Carolina to promote his book and visit his aging mother, Hannah.  Julian’s book describes the short life of his youngest sister who died of a neuromuscular disease.  Julian’s mother Hannah has mild dementia and is living with her daughter.  Julian often uses the threat of sending her to a nursing home as a lever to force Hannah to behave.

The actor playing Elora does a very good job, but she does not have a disability.  She is shown being spoon fed, having her hair brushed, and having her torso washed while clothed.  All the same, my companion Liz Carr said the mostly non-disabled audience seemed withdrawn into their seats as they watched.  Whether they were trying to avoid the subject of death, the frank talk about disability, or both, we couldn’t tell.  The heavier topics were offset by laugh-lines delivered mostly by Elora, Francis and Hannah.

As the second act opens, Elora has had to accept a feeding tube, which she believes is the “beginning of the end” for her.  Her doctors have told her she will lose her sight, her hearing then her mind before she dies; she does not question this.  Though she is in love with Julian she still mistrusts his motives, and rejects him when he returns after his book tour.  Meanwhile Julian decides his mother is a danger to herself and puts her in a nursing home, where she soon dies.

Afraid to face her worsening illness, Elora decides she wants to die.  She asks Julian to “put his money where his mouth is” and kill her, by kissing her until she suffocates.  Julian doesn’t want to do it but is eventually convinced because Elora claims it is “her choice.”  He tries, but can’t go through with it, saying he loves her too much to do it.  Elora decides to soldier on until the end with Francis at her side, sending Julian away for the last time.

In her essay about writing the play, Judith Thompson says she had a seizure disorder during adolescence, and wore the identity of “an epileptic.”  And while it’s clear she admires Harriet Johnson, the play seems like it was written by someone whose understanding of disability rights is skin deep.  We talked afterwards with someone involved with the production, who said that the group really struggled with the ending, and changed it many times.

Elora’s sudden desire to die seemed a truly bizarre choice (except when viewed from a non-disabled perspective), chock full of dangerous subtext.  It reinforces the view of non-disabled people that somewhere deep inside, disabled people really hate their lives and want to die.  Worse still, it suggests that disabled opponents of assisted suicide really think about assisted suicide exactly the way non-disabled people do.

I knew Harriet Johnson, who died in 2008, through phone meetings and her writings; I may have met her at one of the early Not Dead Yet actions, I’m not sure.  I can’t speak for her.  Like all people with disabilities who face constant oppression, she probably had moments of depression, frustration and rage which when turned inward, can become self-hatred and even a wish to be done with it all.  I know those feelings, we all do.  But it’s a long stretch between feeling worn out and defeated, and asking someone to kill you.

I also think that people who work against assisted suicide who become suicidal would kill themselves rather than asking someone else to do it for them.  The distinction between suicide and assisted suicide seems lost on the playwright, who opts to have Elora betray the cause as soon as the issue touches her personally.

While it’s good for non-disabled people to see a character based on Harriet Johnson, (even if she’s a little over-the-top and short on substance) make the disability arguments against assisted suicide, the plot twist in the second half undermines the credibility of those arguments.  In the end, it’s the non-disabled character’s unwillingness to go through with it that sets her straight, another tired plot device to show that people with disabilities can’t run their lives and need a non-disabled person to guide them.  The play leaves me very worried about its effect of the play on non-disabled audiences.

The author refers to Not Dead Yet several times during the play, with an NDY banner on the back of Elora’s wheelchair, even showing her assaulting Julian with the chair during a demonstration.  Ms. Thompson should have had the courtesy to contact NDY before borrowing the name and image, and to learn more about Harriet and NDY’s philosophy and tactics.  NDY uses non-violent tactics and NDY activists do not use their wheelchairs to threaten anyone.

The Thrill is part of a larger “forum” within this year’s festival that features performances and discussions on the “right to die.”  The only person with an identified disability involved in the forum is a workshop moderator.  Alex Bulmer is a playwright with a visual impairment who is leading a panel discussion on August 15 entitled “writing about the right to die.”  The forum is a perfect example of the problem with the debate on end-of-life issues – disabled people, whose lives are at stake, are not leading the discussion. – Amy Hasbrouck

Amy Hasbrouck is a member of the Board of Directors of Not Dead Yet and heads up Toujours Vivant/Not Dead Yet (Canada).