Calif. – Ed Roberts Day Declared – his impact on disability rights and his relationship to NDY issues

analysis, ed roberts, kenneth bergstedt, life-ending decisions, mary johnson, media coverage, Our News & Commentary Blog, right to die

There are many news sources for this, but here’s the news from UCBerkeley News giving a short account of the life of Ed Roberts and the legislative action that created an “Ed Roberts Day.”  Here are the first two paragraphs from Wendy Edelstein’s “Ed Roberts, disability-rights leader and Cal alum, gets his own state day“:

BERKELEY — January 23 has been named Ed Roberts Day in California, in honor of the Cal alum who pioneered the disability-rights movement on campus and nationwide.

Roberts, who was the first Berkeley student to rely on a wheelchair when he arrived in 1962, is recognized as the father of the independent living movement for people with disabilities and special needs. He died in 1995.

There is also a comprehensive biography of Roberts on Wikipedia – a good starting point for anyone who wants to know more about the man.

Ed Roberts died a year before Not Dead Yet was formed.  But that doesn’t mean he was silent about the issues that Not Dead Yet cares about.  The person regarded as the father of the independent living movement saw a lot to be angry about in the court cases during the 1980s involving disabled people being enthusiastically supported by lawyers, the press, the public and even the courts in their wish to die.

In 1990, Mary Johnson interviewed Ed Roberts regarding the parade of “right to die” cases involving disabled people wanting to die – most of them male quadriplegics using ventilators.

The Ragged Edge Magazine, published and edited by Mary Johnson, is no longer in circulation, but much of its material is available online (see linked title at start of sentence).

In the article “Unanswered Questions,” Johnson analyzed the dynamics of the “right to die” case of Kenneth Bergstedt.  Bergstedt was 31 and had been a quadriplegic and vent user for about 20 years.  He was suing for the right to die by disconnection of his vent because his life was “no longer worth living.” 

Johnson described how Las Vegas Sun articles by reporter Jeff German consistently painted the life of someone with quadriplegia – Bergstedt in particular – as a fate worse than death.

The unquestioned (by the press and the public, anyway) impetus for Bergstedt’s wish to die was the impending death of his terminally-ill father, who was his sole caregiver.  Both Bergstedts feared Kenneth would end up in an institution.

This is a long and thoughtful article exploring and attempting to understand breaking developments of the time – and I strongly recommend it to anyone who wants to understand these “right to die” cases.

For right now, though, let me share her account of her discussion with Ed Roberts:

“The whole thing is outrageous,” said Roberts now. He’d just learned about the Bergstedt case himself. “I am getting angrier and angrier about these cases. They feed on each other. The attorneys, the courts, the judges, they don’t know anything. They see somebody like Bergstedt, they say, ‘of course he wants to die!’

“What’s happening is we’re killing disabled people in this country and then act like we’re doing them a favor. It’s outrageous!” I thought back to German’s columns and thought that Roberts had expressed my thoughts better than I had. 

“I’ve been on a respirator for 26 years,” the MacArthur “genius” fellowship award winner continued, “and I watch these people’s cases — they’re just as dependent on a respirator as I am; the major difference is they know they’re going to be forced to live in a nursing home — or they’re already there — and I’m leading a quality life.

“That’s the only difference. It’s not the respirator. It’s money.”

Not once did “money” appear in any of German’s writings on the case.

What Roberts, Johnson and others in the disability rights movement saw at the time are some of the same core issues we continue to deal with now.  But today’s post is about Ed Roberts.

If anyone – and it happens sometimes – claims that opposition to assisted suicide runs counter to the independent living philosophy, remember the words of Ed Roberts and share them.  –Stephen Drake

John Callahan – A Talented and Twisted Voice Is Gone

blog recommendations, Gary Presley, humor, in memorium, john callahan, Our News & Commentary Blog, stephen Kuusisto, wheelie catholic

For awhile, it seemed like this story just plain passed under the radar of the disability community – most of whom were acutely attuned to coverage of the 20th anniversary of the American Disabilities Act, hoping for media coverage and being somewhat underwhelmed by media attention.  The anniversary – including the ceremony at the White House – went totally unnoticed by the prime-time talking heads at MSNBC, for example.  Seems like they could have waited a day to do a segment on “famous apologies” on “Countdown” to make room for coverage of the anniversary, but the proudly liberal MSNBC primetime crowd seem uniformly disdainful and/or clueless when it comes to the landmark civil rights legislation for people with disabilities.

But, nevertheless, as a community, most of us had our attention on one big thing.

Meanwhile another big thing went by for a few days without much mention (including me, of course).

On July 24th, John Callahan – quadriplegic, cartoonist, recovering alcoholic, author, and songwriter – died at the age of 59.

I first heard the news from Laura Hershey, who posted the news on Facebook.

I’m pretty sure the first disability blogger to write about his death was Ruth at Wheelie Catholic, who gave the following account:

Sadly John Callahan has passed away. He was 59 years old and died of complications from his spinal cord injury.

Known mostly for his cartoons, (which appeared for 27 years in Williamette Week), Callahan authored the biography Don’t Worry, He Won’t Get Far On Foot and a semi-autobiographical animation Quads. Callahan was the only quadriplegic who created a TV cartoon series , called Pelswick.

It took a little while, but other disability bloggers have also written about Callahan, his life – and now, our loss.

Stephen Kuusisto wrote “R.I.P. John Callahan” on his Planet of the Blind blog.

Here is an excerpt:

John Callahan resisted “the overcoming story”–that is, a narrative that glibly suggests we’re all made well simply by telling our stories of suffering. Callahan didn’t trust the Oprah or Disney models of narrative closure wherein suffering makes for emotional freedom. In all too many cases suffering is suffering and laughter won’t save you but it will confirm that you still have a brain in your head. Thank you Callahan. We’ll miss you brother. 

And I’ll borrow his words to describe the cartoon posted below the quoted text:

It shows three cops on horseback in a desert. Before them stands an abandoned wheelchair. There’s no sight of its owner. The lead cop is saying: “Don’t worry, he won’t get far on foot.”

Gary Presley wrote about “John Callahan and the Rest of Us Crips“:

Too often people with disabilities — at least the sort that make us dependent on other people for the simple tasks that keep us alive — must navigate their way through the world with a cynical, self-serving blend of guile, hypocrisy, and calculated good manners. We must be better than our true selves simply out of self-preservation.

I may be wrong, but I don’t think Callahan did that, allowed that compromise, that accommodation into his world. His cartoons — let’s identify his work instead as his commentary — was too ferocious.

I hope that anyone familiar with this blog realize that if I take the time to link and/or quote someone’s blog I feel it’s worth people’s time to go check the blogs themselves.  All the blogs include links to tributes and articles by other sources – some of whom were personally close to the man.

As for me, I have my own guilty favorites in terms of his cartoons.  As readers might have noticed, this blog sometimes features humor some people might find offensive or distasteful.  Years ago, I read John Callahan’s autobiography, Don’t Worry, He Won’t Get Far On Foot.

One quote stuck with me – and I dug it out of my battered copy of the book:

Comedy is the main weapon we have against “The Horror.” With it we can strike a blow against death itself. Or, at least, poke a hole in the pretentious notion that there is something dignified about it.

Which is as good an explanation about why you’ll find humor featured here from time to time.  It’s the main weapon against “The Horror.”

Below is a cartoon titled “Cellular Phone” (the cartoon was drawn when cell phones were a new thing).  The drawing shows a man falling toward the ground off the side of a tall building.  He is talking into a cell phone and the balloon show that he’s saying “Hello suicide hotline? I’ve changed my mind.”

The cartoon below has no words, it just shows a sad faced snowman standing in a corner of a room.  Near him, on the floor, is a scribbled note and a pencil.  In his right hand, he’s holding a blowdryer that is plugged into the wall and pointing it at his head.

And, to close, here’s the picture of John Callahan, featured on his website:

R.I.P. Callahan.

NDY Organizer Bob Liston Quoted in “Selling Assisted Suicide” in National Catholic Register

ADAPT, assisted suicide, Bob Liston, Compassion & Choices, Conflation and Con jobs, national catholic register, Our News & Commentary Blog

Elenor Schoen has written a good analysis of the recent efforts of Compassion and Choices (aka “Conflation and Con Jobs”) in several states in the National Catholic Register.  I recommend reading the whole article, titled “Selling Assisted Suicide, State by State,” but I’ll share the last part of the article, devoted to disability concerns, as articulated by Montana NDY and ADAPT organizer Bob Liston:

Bob Liston is disabled and has problems with the idea that those advocating for assisted suicide are really doing so out of a true concern for the suffering.

Liston is an organizer for Not Dead Yet in Montana, a group officially opposed to assisted suicide and euthanasia, and works for Adapt, a national disability-rights organization. He told the Register, “I think that in Montana it is unnecessary for an assisted suicide law to be written because we already have laws on the books that allow a physician to provide palliative care up to and including efforts that might hasten death.” He added: “So, I have a really hard time seeing why we need to go beyond this.”

It is the faulty assumptions about those whose lives it will affect that he finds upsetting. “Compassion & Choices … seems to think that taking one’s own life is dignified, often using the example of [a disabled person’s need for assistance with personal care and hygiene] as a reason to not go on living.” But he adds that some disabled people need this kind of total assistance on a daily basis “and are grateful for it.”

Compassion & Choices “puts forth the argument that so few people in Oregon have chosen assisted suicide [because] the guidelines are so strict. Nothing could be further from the truth,” he insisted, adding: “We have no idea what is really going on in Oregon because recordkeeping is not required.”

Liston stated: “As a person with a disability, I would say that not only is this the wrong law [favoring assisted suicide] to pass — it is definitely the wrong message.”

“If [the citizens of Montana] put as much effort into suicide prevention for people wanting this, or services for people with disabilities to live in their communities, not just have a life in a nursing home,” Liston concludes, “we would be a much greater nation.”

Bob believes we can be that greater nation.  He – like many other disability activists – has devoted a large portion of his life to advocating for that vision of a greater nation.  He believes this country is capable of offering people with disabilities and seniors other options than warehousing or a “compassionate” death.

I think it’s pretty essential we all grab onto that vision – it could be a matter of life or death.  Maybe your own or someone you care about.   –Stephen Drake

UK: Disabled Man Wants Promise that Wife Won’t be Prosecuted for Outright Killing Him

Homicide / 'Mercy Killing', litigation, locked-in syndrome, murder, Our News & Commentary Blog, United Kingdom

Well, last week’s “inspirational crip story” in the UK was about Richard Rudd, who was saved from being disconnected from life-sustaining treatment by being able to blink on request and to communicate his wish to live – contrary to his advance directive and prior statements to family.

I guess that a story built on the idea that it’s OK to live with a significant disability couldn’t go uncontested for long.

This week’s crip story in the UK is about Tony Nicklinson, who lives with “locked-in syndrome” as a result of a stroke he had five years ago.  Nicklinson isn’t interested in living – he wants death, and isn’t satisfied with starvation/dehydration as a method (refusing food and water is his right).

Nope.  Mr. Nicklinson wants a legal guarantee of nonprosecution if his wife actually kills him.

From the story in The Guardian:

A 54-year old engineering executive who suffered a massive stroke and now lives with “locked-in” syndrome, unable to move anything except his head and eyes, today called on prosecutors to clarify whether his wife will be prosecuted for murder if she kills him with a lethal injection.

Tony Nicklinson has applied to the high court to force Kier Starmer, the director of public prosecutions, to issue guidance stating that prosecuting people for murder who engage in so-called mercy killings may sometimes be contrary to the public interest.

Well, that didn’t take long, did it?  It’s been about four months since Starmer published his “guidelines” that gave instructions to family members about how to make sure they avoided prosecution after having assisted an old, ill or disabled family member to commit suicide.

Already, there’s a legal challenge saying the “guidelines” are too restrictive for family members to safely and lovingly kill the disabled people in their household with legal immunity.

More from the article:

But the DPP’s statement, listing six mitigating factors against an individual’s being prosecuted for assisting suicide, does not apply to Nicklinson’s proposed euthanasia because he cannot be helped to kill himself; he must be killed.

Jane Nicklinson is unwilling to break the law, risking prosecution for murder, and her husband refuses to allow her to do so. They argue that Nicklinson is being discriminated against on the grounds of his disability, and that if he was able bodied, he would be free to take his own life.

“It needs to be possible,” Jane Nicklinson told the Guardian. “Nobody is saying it needs to be easy, but it needs to be possible. Poor old Tony is suffering … The law needs to be changed. It is the only way for Tony to get what he wants … I get cross that anyone would question what we are after. He just wants what everyone else can do. Suicide is legal.”

A statement from Bindmans, the solicitors acting on his family’s behalf, said: “Tony Nicklinson contends that the current law of murder, which prohibits in absolute terms all intentional killing, whatever the motive and regardless of the ‘victim’s’ wishes, constitutes an interference with his rights to respect for his private life under Article 8 (1) of the European Convention of Human Rights. … He states that he is not depressed and he is not in need of counselling. He has had almost four years to think about his future, and he does not relish the prospect.”

So, in a rather crappy – but predictable – turn, the agenda of pro-euthanasia campaigners is being advanced under the heading of “disability rights.”

According to an article in The Independent, Sarah Wootton, chief executive of the pro-euthanasia group Dignity in Dying, is very very supportive of Nicklinson’s action – no surprise there:

Sarah Wootton, chief executive of Dignity in Dying, said: “Mr Nicklinson’s situation is rare and tragic. His request to die presents society with difficult questions, for which there are no easy answers. 
“One thing is clear: the current law fails Tony Nicklinson and his family. 
“The law of murder is primarily used to convict people who act out of malicious motivation and as such carries a mandatory life sentence. It should not be used to prosecute someone who compassionately helps a person who is suffering to die at their request. 
“The Law Commission established this as an area of concern in its 2006 review of murder law, calling for a further review into whether there should be a specific offence or defence of ‘mercy killing’. 
“In the absence of any review, we hope that this legal case will help to clarify the law as it applies to Mr Nicklinson and others, and put further pressure on the Government to address the problems with our existing and outdated murder law.” 
She continued: “This case raises many ethically difficult questions.

Wootton states – twice – that this situation raises many “difficult questions.”  I noticed, though, that she has her one stock answer ready:

“Kill him.”

That seems to be the extent of the insights of activists like Wootton into the needs of people with disabilities.  I can only imagine the feelings of nausea, anger and outrage being felt in the disability in the UK right now, where budget fights are making the basics of living more and more difficult.  –Stephen Drake

NJ: “Suicide Prevention Expert” Judith Springer Says Final Exit Network OK as Long as it Just Helps “Elderly Folks”

ageism, final exit network, judith springer, media coverage, media issues, new jersey, Our News & Commentary Blog, reality check, society for the prevention of teen suicide, suicide, suicide prevention

The Final Exit Network (FEN) has a billboard up in New Jersey now.  It has received a fair amount of coverage – and all of it has been superficial and inaccurate.  Not one article has mentioned the criminal charges FEN members face in Georgia and New Jersey, let alone the fact that two FEN members in Arizona have entered into plea bargains, which include a commitment to testify against their fellow FEN members.  The Arizona case involves the death of Jana Van Voorhis, a woman who had no serious physical illnesses, but had a long history of emotional troubles.  FEN’s involvement in her death contradicts the claims being made in current coverage that the organization engages in some sort of psychological screening.

The press has also gone along – part way – with FEN’s description of their opponents – people with religious motivations.  That’s a blatant lie – the only group that has engaged in a physical protest of FEN is Not Dead Yet – and we’re a bunch of secular disability rights activists.

What FEN probably didn’t plan on was criticism from the suicide prevention community, which avoided commenting on FEN throughout coverage of the initial charges leveled against members in Georgia and Arizona.

But even that is turning out to their benefit in the current coverage, thanks to “suicide prevention expert” Dr. Judith Springer.  Springer is a psychologist and board member of the Society for the Prevention of Teen Suicide.

The first red flag went up on Springer’s comments in her first press quotes that appeared in the Star-Ledger, giving her reaction to the FEN billboard:

Therapists called the billboard “irresponsible,” arguing it could serve as a “tipping point” for troubled teens or others at risk of suicide.

“The idea of any of these upset, impressionable kids seeing a billboard like that absolutely horrifies me,” said Judith Springer, a Morristown psychologist and board member of the Society for the Prevention of Teen Suicide. “You can’t filter who sees a publicly displayed sign.”

The quote bothered me a little, since there seemed to be room here that – in her opinion – there is an appropriate audience for the sign and the organization.

Turns out my vague concerns were all too valid.  The good Dr. Springer ended up showing the depth of her concern when it comes to suicide for the elderly – or more accurately, her complete lack of concern.  In a July 16th article written by Fox News religion correspondent Lauren Green, Springer reiterated her previous comments and then expanded on them:

But Springer says she’s not opposed to Final Exit’s mission, just how they’re delivering the message.
“I visited the website and it’s populated by elderly folks who are at the end of a very long life and are in pain,” she said. “That’s a whole different issue to me.”
Let me translate – Springer has just shrugged off any concern about any group that encourages and facilitates the suicides of “elderly folks” because it’s “different” than what she deals with.
Last September, this blog declared that “Suicide Prevention Week” didn’t apply to old, ill and disabled people. We reached this conclusion by interpreting the persistent silence of suicide prevention organizations to the months of positive news coverage of FEN, accompanied by contact info for the group.  Since FEN proudly asserts it will gladly help anyone who is old, ill or disabled, it can only mean that a significant number of professionals in suicide prevention have written off those of us who fall into one or more of those categories.
I thank Judith Singer for one thing – it’s good to have this abandonment out in the open.  She’s the first one in the suicide prevention community (that I know of) to be so open about this abandonment.  She’s to be congratulated for her honesty, even if there’s not much else I can think of to congratulate or thank her for.  –Stephen Drake