The Death of Christina Symanski - John Kelly and Bill Peace on Media, Perspective, Wrong Questions and Ignored Issues

John Kelly is the Director of the recently-formed Second Thoughts, a Massachusetts-based group of disability rights advocates opposing the legalization of assisted suicide.

The essay below refers mainly to an article on Christina Symanski that appeared in the Huffington Post, originally in the sites "Weird News" section.  Symanski was a young woman who starved and partially dehydrated herself in a process that took about two months until she finally died.  (For whatever reason, the article has been moved from that inappropriate section to the main news section.)

Most of the reactions to Symanski's decision to starve to death have been predictable - "she was brave to live as long as he did," "I admire her courage," etc.  Makes me wonder if the commenters think that the vast majority of people with spinal cord injuries are cowards for living instead of killing themselves.

Please read John's response to the news coverage and reactions to Christina Symanski's long death.  At the end of John's piece, I'll share the reactions of other disabled people to her death. From John:

I have a spinal cord injury one level higher than Christina, such that I am dictating this into a microphone, drive my wheelchair with a sip/puff tube, and like her, am completely dependent for all my care. Let's take some issues in order.

First, suicide is nowhere illegal. No one needs to have the "right" to kill themselves, just like we don't need "the right" to go outside or jump off a cliff. So please, enough of the "rights" talk. Moreover, it has long since been decided that people can refuse any and all treatment, so don't worry, medicine does not bend over backwards to keep spinal cord injured people alive!

Second, people are different and as Christina says, view different matters differently. Please check out this blog entry by Christina, where she lists her number one determinant of quality of life as being able to care for one's own body. I can relate to this feeling, as I also grew up a private and modest person, and when I was first dependent on others for my care, it felt unbearable. Like Christina, I especially had trouble with having other people perform my bowel program. Because of these feelings, it took me a long time to realize that even if I found the idea of bowel care appalling, for many other people, helping someone empty their bowels is no big deal at all -- no bigger than cleaning up after a baby or pet. It really is possible to have self-respect while being dependent. But that depends on whether we receive any respect.

Third, can we talk about the social context in which we all live, and our innate need for respect from others? Please notice the assumption of the article, that it is natural that Christina would want to die as someone with a spinal cord injury. I just saw a proposal by some organ transplant doctors that newly injured people with spinal cord injuries should be encouraged to die and allow their organs to be harvested! On the flip side, newly injured people are flooded with messages of pseudo-hope for a cure for spinal cord injury. Christina was done a terrible disservice by being flooded with "hope" that she would be cured within 5-10 years. Unfortunately, self-interested doctors and scientists have been promoting this message (they got to Christopher Reeve early) for 30 years. I remember watching a Nova episode a few months after my injury in 1984, in which a doctor predicted five years for a cure to be developed.

Fourth, how much support did Christina get validating her own experience, with her body and situation. As members of many oppressed groups can relate, it really helps to laugh with another person in our same position over the way we are treated, stared at, discriminated against, etc. Besides the guy imprisoned in a nursing home who was going to starve himself to death, did Christina interact with other disabled people, disabled people who might be able to give her advice and support? So was she ever exposed as a disabled person to all the messages of possibility that are now available? For example, did she know that people with her level of injury were playing international tournaments in a new game called Power Soccer? People with disabilities need a community of people sharing our experience. Being isolated in one's difference is oppression, pure and simple.

Fifth, like Christina I am also from New Jersey, a state not known for its support of people with disabilities. When my best friend got a spinal cord injury in 1971, there were no options but living at home or living in an institution. That can be a soul-killing choice. Christina lived at home and her mother did a lot of her care. For many 31-year-old, this would be unbearable. New Jersey now does have a PCA program, but I wonder did she got enough hours of care to meet her needs? When states and the federal government constantly underfund support programs, we disabled people get the message that we are not wanted.

Finally, it sounds like Christina was not getting appropriate medical care. Unrelieved pain and autonomic dysreflexia can feel overwhelmingly dangerous and scary, and both can be a challenge to treat. So can diabetes be difficult to manage, but diabetics are not flooded with messages "cure or die" like spinal cord injured people are.

The conclusion to draw from Christina's tragic suicide is not that we all have the right to kill ourselves, but that people can easily be led to see suicide as the only way out of an oppressive situation.

(Note: This isn't the first time John has written about the "intense anxiety, even terror" that seems to be the most common response from the public toward incontinence - on the part of someone else or the possibility that they themselves might experience it.  His appropriately titled 2002 article "Incontinence" is available here at the Ragged Edge archives.)

The longest story about Christina Symanski and her death was published in the UK.  The Daily Mail's article carried a great deal more information about the interpersonal dynamics that helped to play a part in Symanski's decision to die.  A couple days ago, Symanski's sister posted a new entry on Symanski's blog and urged people not to read the Daily Mail story.  You can check it out here and judge for yourself.

Most of the reactions to the Mail article are the predictable drek applauding her coming from able-bodied people.  There were some exceptions, however.  Someone calling himself "Larry, from Mississippi" responded to an able-bodied person who called quadriplegia "worse than death" and "90% dead":

I broke my neck 26 years ago as a 16 year old, got my GED, went to college, ran a business, and trained boxers for 16 years as a quad. Quadriplegia is a fate worse than death?? You are effectively 90% dead?? Tell those young Golden Gloves and Jr. Olympic champs I coached/mentored that! I know everyone is different, but there is no explaining this to me. I've had roomates in rehab and college that were negative about their situations. I despise self pity! I made a decision to get in a hot rod with a drunk driver on December 25, 1985. She made a decision to dive into shollow water, which I had done many times too. Maybe quads and paras should stay in a childrens rehab full of children that never walked and never will as I did. Gave me a whole new perspective on things. Some of these comments blow my mind. If you think killing yourself is brave, you have issues. I truly hope you never get paralyzed if you are weak minded enough to believe this is the way out. I'm done..

Here's another one, this time from an able-bodied person calling herself "Lady Pauline Maria" from the UK:

This is so sad. RIP. My mother became paralysed from the neck downwards in a freak car accident....she wanted to die and begged for help. I pleaded with her to realise she was more than a physical body. She was highly intelligent, wise and a amazing Lady who gave so much encouragement to everyone. Years of arguments, tears and slowly, she realised life beyond a wheelchair. She was loved and respected by so many people - an inspirational Lady of courage. She defied doctors and travelled to USA by plane. She needed nurses and help; even help to cough. She became the consultant to expert consultants. I admit encouraging her to realise a spiritual purpose and she did. My best friend and a truly courageous inspiration..It hurts my heart to read of people who give up when not understanding, we who love our loved ones are blessed with their living. This year is the paralympics - paralyzed people who defy physical limitations. Keep the happy memories and live to love. Life is very precious.

There are no doubt more like these these to be found for someone more willing than I to dig through the more than 200 mostly nauseating and depressing garbage consisting of applause and pitying pseudo-sentimentality.

Finally, Bill Peace has managed to struggle through his own disgust and write down his own reactions on his Bad Cripple blog. Here is the first paragraph of his blog entry titled "The Mainstream Media Discovers Christina Symanski: Perspective Please":

American society loves people with a disability that want to die. These people are heros. These people are lauded as brave. Their stories are gut wrenching. Their writing is powerful. The latest such person with a disability that is being belatedly embraced is Christina Symanski who I have already written about. Symanski died last December but few noticed her death outside of her immediate family and those in the disability community that read her blog Life Paralyzed. I was deeply touched by her writing and disturbed by her death. I have tried to give a balanced perspective on the social significance of her death. This is exactly what you will not find in the news stories that I have read over the last few days. The first newspaper to write about Symanski was the New Jersey Star Ledger. This story was picked up by the UK's Daily Mail and then the Huffington Post. I expect the news of Symanski's death will go viral over the weekend and be picked up by hundreds of news outlets. I have no doubt she will be lauded for choosing to die. Proponents of assisted suicide legislation will bemoan her heroic suffering--Symanski slowly dehydrated and starved herself to death over a period of two months. Comments from readers on line are predictable--if we can euthanize our pets with dignity why did Symanski have to suffer a horribly painful death. The news stories are maudlin in the extreme and devoid of any serious discussion. For example, the story in the local NJ paper adds details such as Symanski's last meal. The Huffington Post notes as an artist Symanski had decided she had suffered enough--the assumption being artists need to suffer to produce great art. The Daily Mail went into great detail about how Symanski was paralyzed and saved by her boyfriend who she was about to move in with.

And, of course, he has much more to say.  Read the rest of it here.  --Stephen Drake

President/CEO of Center for Practical Bioethics Careless with Facts Comparing Final Exit Network to Kevorkian

I'll be the first to admit that there are some bioethicists that can and do write with intellectual honesty and engage in rigorous analysis.  However, those qualities are not required in order to gain respect in the field of bioethics.  I offer Jacob Appel and Peter Singer as Exhibits A and B. (Those appear to be the main examples that have been discussed on this blog.  There are plenty of others.)

Now John Carney, President/CEO of the Center for Practical Bioethics has provided a fresh example of the ease with which some bioethicists render judgments that seem to have been reached without checking the facts or simply ignoring facts.

On February 7, the Practical Bioethics Blog published "Thoughts on Final Exit Case" by Mr. Carney.  The blog post opens like this:

Before too much is made of the Georgia Supreme Court's ruling freeing four Final Exit volunteers from criminal charges for assisting a suicide, let's look at the facts

From there, he proceeds to make 5 numbered points.  And, to be fair, numbers 1 through 3 are pretty straightforward if unremarkable observations about the court decision: that the court made a fair call on a badly written law on grounds it violated constitutionally protected free speech.

The last two items are remarkable - but not for very good reasons.  In his fourth point, speaking about the overturned Georgia law, he says:

State lawmakers adopted the law in 1994 to prevent Dr. Kevorkian types from advertising their services, an understandable preventive step, but incomplete, especially in light of other recent state laws that have made physician aid in dying legal.

Frankly, I have no clear idea what this sentence means.  I have a couple guesses of what Mr. Carney might have meant, but I have to change the sentence to make the meaning clear.  For one thing, the phrase "other recent state laws that have made physician aid in dying legal," makes it sound like there's been an avalanche of such laws.  In fact, there are only two states that have legalized assisted suicide - Oregon and Washington.  In Montana, the Supreme Court found that a patient's consent to assisted suicide qualified as a defense against homicide for the physician doing the aiding.  Things are still in limbo in that state, since no doctor has - publicly at least - provided suicide assistance while the legislature in that state still hasn't passed a statute defining the paramaters of allowable "practice" in regard to assisted suicide.  And what does all that have to with what happens in Georgia, anyway?

Carney's fifth and last point is where he really goes off the rails, though.  Here it is:

Finally, Dr. Lawrence Egbert and others in Final Exit Network are not Jack Kevorkian types. The group does not advertise their efforts to take the lives of patients, but only assist the patient in taking her own. Though that may seem like splitting hairs to some, when there is no state law on the books that bans assisted suicide, advertising or publicly advocating for a troublesome and morally objectionable activity does not a criminal make. 

This not "splitting hairs" - it's fiction.  First of all Kevorkian also claimed to be just assisting people in taking their own lives - his devices were rigged so that the individual who wanted to die had to operate it.  There were just two cases in which Kevorkian admitted doing anything more.  The death of Thomas Youk, which he taped and Mike Wallace televised; and an attentive Wesley Smith realized Kevorkian confessed to the direct killing of his first "client," Janet Good.

Just using information from the January 19 article on Lawrence Egbert in the Washington Post magazine, we learn a few things about Egbert from Egbert:

• Egbert says he's been "present" for over 100 suicides and "approved" of about 300 suicides.  In addition to nonterminally ill people who are "suffering," he's also helped or signed off on people with severe depression (or other psychiatric issues, such as Jan Van Voorhis)
• Contrary to claims that they only provide advice and "presence," Egbert reveals he reuses old "exit bags," saving people the 60 bucks it would take to order them.  This is a direct contradiction of one very consistent claim FEN has made - that those whose suicides they "attend" buy all their own gear.  It's not a minor point - it's one way they maintain that what they do isn't "assistance."
• Egbert claims to have approved of about 95% of applicants. While the claim is just as unverifiable as Egbert's, Kevorkian always claimed to have "helped" only a small percentage of those who wrote or called him wanting to commit suicide.

So if you go by facts, both the Final Exit Network and Kevorkian had almost identical "eligibility" criteria, except for Egbert's willingness to facilitate the suicides of people who had depression (Kevorkian's writings indicate he was warm to the idea, but never admitted to accepting someone who had that as a complaint).

Egbert's admission that he reuses "exit bags" refutes a claim that the Final Exit Network makes - that they give *only* advice and their physical presence.  The reuse of bags is reminiscent of Kevorkian's "thrifty" ways as well.

Egbert's "eligibility criteria" are actually more expansive than Kevorkian's inconsistent standards were.

In conclusion, if you look at a factual comparison, the Final Exit Network is a group of suicide vigilantes who have been lying about at least some of their practices, according to Egbert's account.  If claims were made by ex-president Jerry Dincin in ignorance of what Egbert was actually doing, that's even more disturbing - it means you have a bunch of zealots eager to "attend" and facilitate the deaths of strangers - and none of them really know what everyone else is doing.

To the extent that there's a difference in terms of Kevorkian, the zealots are even worse; not even they know what each of them is doing and they are operating almost completely under the radar.

That's all for this entry.  I hope that Mr. Carney and the Center are more rigorous in their analyses regarding other areas than he was in this one.  --Stephen Drake

RELEASE: Disability Activists Urge Georgia Legislators to "Get it Right" on Assisted Suicide

Disability Activists Urge Georgia Legislators to "Get it Right" on Assisted Suicide

Today, Georgia disability activists, including members of Not Dead Yet, reacted to the Supreme Court ruling that overturned a 1994 law on assisted suicide on First Amendment grounds, calling on the Georgia legislature to tackle the issue as soon as possible and "get it right" this time. 

Atlanta, GA (PRWEB) February 07, 2012 

Today, Georgia disability activists, including members of Not Dead Yet, reacted to the Georgia Supreme Court ruling that overturned a 1994 law on assisted suicide on First Amendment grounds. The overturned statute only criminalized the advertising of suicide assistance and, in effect, left unadvertised suicide assistance free from legal prosecution. The Court found that the main effect of the law was to criminalize certain speech, since the advertising was made illegal, with or without an actual commission of assisted suicide.

Please read the rest of the press release here.

Georgia: Court Strikes Down State's Half-Assed Assisted Suicide Law

This is not exactly unexpected.

From the Atlanta Journal-Constitution:

The Georgia Supreme Court on Monday unanimously struck down the state's assisted-suicide law, finding it violates the free speech clauses of the Georgia and U.S. Constitutions.

The court's ruling means that four members of the Final Exit Network do not have to stand trial on felony charges in Forsyth County. They were charged in connection with the 2008 suicide of 58-year-old John Celmer, who killed himself two years after he had been diagnosed with cancer.

At least in the short term, this is a victory for the Final Exit Network.  But it's not an exoneration.

What the court decision really includes is a harsh condemnation of the Georgia legislators for putting together a sloppy half-assed statute covering assisted suicide.:

Justice Hugh Thompson, writing for the court Monday, noted that the law only criminalizes those assisted suicides that include a public advertisement or offer to assist. Many assisted suicides are either not prohibited or expressly exempted, and the law does not render illegal all advertisements or offers to assist in a suicide, he added.

"Had the state truly been interested in the preservation of human life ... it could have imposed a ban on all assisted suicides with no restriction on protected speech whatsoever," the ruling said. "Alternatively, the state could have sought to prohibit all offers to assist in suicide when accompanied by an overt act to accomplish that goal. The state here did neither." (Emphasis added.)

That's what the legislators could have done. It really looks like they didn't care much if family members and friends were helping the suicides of elderly, ill and disabled folks (they're expensive, after all).  They just didn't want a Kevorkian causing a scene in their state.

More on this later.  Right now, Georgia legislators have a choice.  They can draft a law that proves they believe that all suicides are preventable tragedies.  Or they can just let the open season on despairing people contemplating suicide stand.

I'm not making any bets on which way they'll go.  --Stephen Drake

ADDENDUM: A key issue was that the statute was found to violate free speech rights by criminalizing any advertisement or offer to assist in suicides.  The court actually spelled out what legislators could have done and could still do to criminalize assisted suicide in a way that would pass constitutional muster.

Court decision is here (in pdf). h/t to Sam Bagenstos at Disability Law.

Blog recommendation: Smart Ass Cripple on being "A Burden to Society"

There's new blog entry from Mike Ervin at Smart Ass Cripple. 

The Smart Ass is no dummy.  All of the Republicans vying to be president are talking about the sacrifices that must be made by Americans - except for the gazillionaires who have millions stashed away in Switzerland, the Caymans, and other sheltering locales, 

Mike - or Smart Ass - can read the writing on the wall, tell which way the wind is blowing and any number of other clichés that tell him he's just leading way too cushy a life - and much of it on the public dollar.  So in his latest blog, Smart Ass Cripple attempts to crunch the numbers and see what it would take to make him less of a burden on society.

For your education and entertainment, here's the beginning of "A Burden to Society":

Every time I take a leak, it costs the state of Illinois 38 cents. The state pays $11.50 per hour to the people I hire to help me take a leak. That’s about 19 cents a minute. I guesstimate that on average, each leak takes about two minutes, from unzip to zip. If I leak four times daily, on average, that’s $1.52. Extrapolate that out over a year and that’s $554!

Each time I sit on the crapper, that’s about 20 minutes. So that carries a price tag of $3.80 a day or $1387 a year. That’s $1941 of taxpayer money eaten up by one man’s bodily functions!

And that doesn’t even count all the other stuff my workers do for me, such as putting on my pants ($208 a year), brushing my teeth, ($244) and making my armpit smell like a cool sea breeze ($226).

There’s no doubt about it. The numbers don’t lie. I am a burden to society.

IMO, this piece gets even better from this point on.  But you'll have to go to the site to read the rest.  So please go and read the rest of this essay here. --Stephen Drake

The Onion: Brain-Dead Teen, Limited to Texting and Rolling Eyes, to be Euthanized (SATIRE)

I love The Onion.

I'm pretty sure that the writers aren't taking a position on euthanasia here, but doing what satirists do best; they've taken a well-known, overused, emotionally manipulative and predictable script - and then twisted the context.

I apologize for the lack of captioning, but I couldn't pass this up. If there's a good transcriptionist reading this, I promise you gratitude and credit if you want to transcribe this and send the transcript for posting.

So - for those of you who've followed NDY and enjoy satire, enjoy the video. For pro-euthanasia advocates who've checked in to see what we're up to, prepare to be offended by the video story below.

Brain-Dead Teen, Only Capable Of Rolling Eyes And Texting, To Be Euthanized

Update on Philadelphia Transplant Denial to Girl with Developmental Disabilities

I'm happy to share updates on the apparent case of disability bias in a situation involving the denial of a transplant to girl with developmental disabilities, which we reported on earlier this month. 

First, I received this email message from the managers of wolfhirschhorn.org on January 26:

Hello wolfhirschhorn.org followers:

Over the course of the last week, there have been new updates on the situation 
with Mia and the Rivera's status with CHOP. Over the weekend, a meeting took 
place between a number of the key leaders of CHOP, the Rivera's and 
wolfhirschhorn.org. The purpose of the meeting was to get an understanding of 
the chain of events that led to the "Brick Walls" posting. The meeting lasted a 
little over 90 minutes and the Rivera's had an opportunity to tell their side of 
the story and the related concerns about Mia's needs and how CHOP handled the 
situation. CHOP agreed that the system is broken and that they are taking steps 
to fix the process. In addition to addressing Mia and the next steps with her 
transplant discussions, a few suggestions were made to CHOP about their 
involvement in a more macro view of awareness around transplant rights for the 
disabled, and public and medical community education around the "mentally 
retarded" phrase. CHOP agreed to follow up and communicate their action items by 
the end of this week.

Mia and the Rivera's are planning a visit to CHOP in the near future to 
determine CHOP's role in her transplant and her on-going medical care. Once that 
meeting takes place, we will issue a statement on the status of Mia, her care, 
and CHOP's involvement moving forward.

To keep up to date on details of this story, LIKE us on Facebook 
(https://www.facebook.com/wolfhirschhornawareness) and follow us on Twitter 
(@wolf_hirschhorn).

Today - January 31 - the Philadelphia Inquirer reports more good news:

The parents of 3-year-old Amelia Rivera, the disabled girl who was initially rejected for a kidney transplant at Children's Hospital of Philadelphia, now say the hospital is willing to consider such an operation.

The Riveras said they met with medical personnel at the hospital for one hour Friday, after which they were given instructions on how to proceed with a possible transplant - including how to have family members tested as potential donors.

Chrissy and Joseph Rivera said they were not told whether their daughter, who goes by the nickname Mia, would be medically eligible. But the couple, of Stratford, Camden County, said Monday that they saw the meeting last week as a step forward from what happened earlier this month.

"As of now, we're taking this as a positive sign," Chrissy Rivera said.

Read the rest of the article here.

This is good news.  I don't know if we'll ever know the full story.  Maybe this was a case of one doctor's bigotry - or his really really bad communication skills (both are plausible, IMO).  In any case, the current discussions being reported are more in line with the accounts that many individuals have shared regarding their overwhelmingly positive experiences at Children's Hospital of Philadelphia.  It looks like things are working their way toward a satisfying conclusion.  --Stephen Drake