A Tremendous Loss – Paul Longmore Has Died

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(Pictured above: Profile picture of Professor Paul Longmore, copied from his facebook page.)

I just received the news via various sources that Paul Longmore – professor, hisorian, disability rights scholar and disability rights activist – died unexpectedly last night.  The following note from a friend and colleague of his appeared on Paul’s facebook page last night:

It is with a heavy heart that I write to inform you of the passing of Paul Longmore. He was found non-responsive in his apartment earlier this evening (8/9/10). I received a phone call from close mutual friends–not long there after–telling me of the news.

SF State has lost a brilliant scholar and the world… I know not the words to say… I consider myself blessed to have known Paul in one capacity, or another, for the past twenty years–first as an undergraduate, a mentee, a young professional, a colleague, and, most importantly, a friend. My Mom and I will miss making and delivering him his apple pie this Thanksgiving.I’ll write more as I learn it and can…

Disabled and Proud,

Gene

As a graduate student at Syracuse University, I had read some of Paul’s work in the course of my studies.  However, it wasn’t until the start of the disability community’s opposition to assisted suicide that I came into direct contact with him.  Paul was one of the most prominent and articulate voices in the disability community regarding the opposition to legalization of assisted suicide before, during and after the formation of Not Dead Yet.  He has continued to be a prominent spokesperson for the disability rights movement in California, where a broad coalition of organizations has – so far – been successful in keeping assisted suicide advocates at bay.

Here is an essay from 1997 in which Paul Longmore explains why he got involved with opposition to the assisted suicide movement.

Here is a link to Paul Longmore’s biography, taken from the San Francisco State University’s Institute on Disability.

When searching for links for those who might want to know more about Paul, I was pleasantly surprised to find a youtube video of a speech he gave at the San Francisco Celebration of the 20th anniversary of the ADA.  I apologize in advance – the video isn’t captioned.  I try to stay away from that, but I thought a lot of people might want to watch and listen to the very recent speech by Paul Longmore – July 26, 2010.  Barely two weeks ago – from the time this blog entry is written:

I suspect there will be some obituaries and tributes appearing in the next few days.  I will share them here.  Paul had a strong influence on my own writing and advocacy.  A lot of his writing combined impeccable sourcing and fact-checking with an obvious anger – even contempt – for those who used cultural stereotypes to promote a “better dead than disabled” set of public policies.  In much of what I write, it’s that combination I aim for, knowing that no one could ever top the real master.  And now he’s gone.  I miss him already.  –Stephen Drake

Blog – “Euthanasia: Dog vs. Man” – A Succinct Analysis from a Nurse

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Regular readers have read several posts here dealing with the use of pet euthanasia by pro-euthanasia advocates to promote their agenda. You can read posts on the subject here, here, and here.

Well, today there’s a short blog post on the pretty much the same topic at the blog “Nursing: You Wanna Know What I Think?,” authored by Pat Veitenthal, who has been in the nursing profession for 42 years, according to the blog.

It pains me a little to say this, but she may have made the point about the inappropriateness of using animal euthanasia in the debate about human euthanasia more effectively than anything I’ve written.  It’s certainly a gentler message than I tend to write – but very clear nonetheless.

Here’s what she has to say in “Euthanasia: Dog vs. Man“:

When I was a young nurse, euthanasia was a word only whispered, if spoken at all. Now it is a regular topic of discussion among us. We cover it from all points of view: ethical, religious, political, moral…even animal.

I am one of those sickening pet owners. I kiss on my bichon frise, love her dearly, talk to her, carry her, worry about her, take her bye-byes in the car, give her clothes, toys and treats, and I do it all devotedly and unapologetically.

The argument among nurse pet owners like myself is that if euthanasia is the humane thing for the pets we love as much as members of our family, why don’t the humans we love deserves the same humane end if they so choose?

I’ve actually been pondering this reasoning very carefully, and I happened upon the thought of looking at it another way.

Regardless of how much I do cherish my beloved dog Hollywood, the love for her is actually not the same. I would take a bullet for my son, but I would not take a bullet for my dog. So let’s leave our pets out of this very important debate.

It needed to be said…

 Yes, it did need to be said – and just the way that Pat Veitenthal said it.  If you think that way too, please go visit her blog and leave a note of appreciation.  I did.  –Stephen Drake

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

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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