Breaking News: Billionaire Buys the Rights to Livestream Assisted Suicide of Cancer Patient

This first got my attention earlier this week, when a single news item from Shockya.com showed up in my news feed, titled Assisted Suicide Will Be Broadcast Live on BattleCam:

Billionaire Alki David has paid the family of terminal brain cancer patient Nikolai Ivanisovich for the rights to stream his assisted suicide on BattleCam. The broadcast is slated to air on July 29, 2011 at 9 pm ET from a secret location in Eastern Europe.

Ivanisovich will receive a lethal injection, administered by a physician who has decided to remain anonymous. The doctor doesn’t want their identity revealed because of the “mitigating circumstance and likely media attention this event may generate.”

During an interview held in Russia, Ivanisovich said he’s “grateful to Mr. David and his team for making this possible. My family will be able to live in prosperity after I pass. May God bless Mr. David for his kindness and generosity.”

At the time, I was unable to find any other story verifying this and refrained from posting anything on it.

Yesterday, though, more stories started popping up, starting with a press release.  The release was quickly followed by stories on many entertainment/celebrity/gossip sites.  The story by AVN contained new information:

Though at first the idea of streaming a suicide live on such a platform might seem to be an exploitive and cynical use of new technology, as David tells it, the idea did not originate with him but with the Ivanisovich family.

“Originally, I was approached by one of my staff to help Nikolai out with medical expenses,” he told AVN. “I did so. We exchanged some emails and that was it. Once his health started to deteriorate his wife Uryna asked me to pay for his assisted end of life. It was her suggestion in fact that we stream it. So I agreed. Most of the great ideas on BattleCam come from the community on it.”

In an interview conducted in Russia, where he lives, Ivanisovish said he was “grateful to Mr. David and his team for making this possible. My family will be able to live in prosperity after I pass. May God bless Mr. David for his kindness and generosity.”

A little more from Mr. David at the end of the article:

In a sense, it seems the decision to stream the suicide engages three of David's main interests. The initial impetus was to help a family in need, but it was also an opportunity to provide an “interesting spectacle” to viewers of BattleCam while fulfilling David’s conception of BattleCam as a “social experiment.”

The site, he said, “generates zero revenue, and even though I have developed some interesting ideas to commercialize it, it is really just my favorite toy. It is here forever. All the members of BattleCam make the site interesting and compelling and it really has grown into a fascinating community. Cynics would say [it is populated by] degenerates and low lifes, but I totally disagree. Not only do I know some very influential and even famous people who frequent BC incognito, but comments like that put me in the same group!”

Still, the all-too-human issues that surround the live streaming of an assisted suicide are not lost on David, who responded affirmatively when asked whether he would consider similar pleas that might come his way.

“I am open to similar requests, sure!” he told AVN.

Most of the news coverage and commentary gives at least a token nod as to whether or not streaming the live suicide of someone at a Swiss clinic is a good idea.

In retrospect, this is a perfectly natural development.  The American news magazine show 60 Minutes televised the taped killing of Thomas Youk via a series of injections given by Jack Kevorkian.  Recently, author and euthanasia campaigner Terry Pratchett produced a film that included  the death of Peter Smedley at a Swiss assisted suicide clinic.  It was aired on the BBC.

But these were taped, which I guess lacks the "thrill" of viewing such a thing live.

But I think the conversation about the "new ground" being broken is a less important issue than another groundbreaking issue.  Alki David is paying Nikolai Ivanisovich and his family for the right of live-streaming his suicide - enough so that Mr. Ivanisovich says his family "will be able to live in prosperity" after he dies.  Of course, that prosperity is contingent on his committing suicide - I suspect if Mr. Ivanisovich changed his mind, there would be no generous payment coming from Mr. Alki David.  No pressure there. (yes, that's sarcasm)

According to Wikipedia, The 2011 Times Rich List named Mr. David 45th richest Man in the UK.  So when he says he would consider similar offers - to have people commit suicide in front of a live internet audience - we should take him seriously.

There's also no reason to think that it will stop with terminally ill people killing themselves at clinics in Switzerland.  Frankly, I think the Battlecam folks are used to more spectacle than watching people get a needle in the arm and then nod off into a deep, albeit final, sleep.

I mean, really, what's next?  Watching the live suicide of someone using the Oregon assisted suicide law?  How about paying someone to use a plastic bag and helium to commit suicide?  That's a bit more spectacle.

When you come right down to it, why do any people who offer to have their suicides filmed have to be old or sick or disabled?  There are many people who would be willing to kill themselves if they could assure "prosperity" for their families.

Since suicide isn't illegal, it could be that, even in the US, it isn't illegal to pay someone who wants to commit suicide for the privilege of livestreaming their death.  Alki David could even use a sliding scale for payment.  Pill overdoses would get a generous amount, but those who volunteered to suicide through the use of a gun or by hanging would haul in the big bucks for their survivors.

Sound ludicrous?  Think on this.  Alki David is a billionaire who loves creating spectacles.  And as for the venue of BattleCam, part of the official definition of the site is "the live interactive reality television channel and community of FilmOn.com."

If anyone was curious where reality shows could be headed, it would appear that Mr. David is prepared to lead the way.  --Stephen Drake

GREAT NEWS: Diane Coleman Transitioning to New Role as CEO of Not Dead Yet in August

Diane Coleman Transitioning to New Role as CEO of Not Dead Yet in August

Most readers of this blog and anyone else who is familiar with NDY knows that Diane Coleman is the founder and President of the group.

On August 1, 2011, Diane Coleman will transition to a new role as the full time President/CEO Chief Executive Officer of Not Dead Yet. She has served as its volunteer President since its inception, while simultaneously working first as the Executive Director of Progress Center for Independent Living in Forest Park, Illinois, and then relocating to Rochester in 2008 to serve as the Assistant Director of Advocacy at the Center for Disability Rights (CDR). She became CDR’s Director of Advocacy in March 2010.

This is a day Diane has worked for and dreamed about since 1996. The need for full-time outside employment means that the major contributions she's made in terms of analysis, writing, organizing and teaching have all been done in her “spare time.” Until recently, she – and I – figured that her full-time devotion to NDY would have to wait for her “retirement.” Thanks to new contributions, including a very significant one from a donor who has been a strong supporter for several years, that dream will become a reality on August 1^st.

Until now, Not Dead Yet has been able to afford only one staff member – me - to write NDY’s blog, maintain a general online presence and handle the bulk of NDY-related media work. 

The complex politics of the assisted suicide issue placed serious limits on its financial resources. NDY’s initial concerns focused on the disability discrimination inherent in a society which labels some suicides as tragedies to be prevented, and others as “death with dignity” to be assisted, while denying people who are old, ill or disabled the long term services and supports they need. Proponents of assisted suicide have often claimed that their only opposition comes from “right wing religious, pro-life” groups, so NDY’s bylaws preclude it from accepting funding from such groups.

As health care policy has evolved, NDY has also addressed the issue of third party decisions to withhold life-sustaining medical treatment. “We’re especially concerned about health care providers who pressure people or even make unilateral decisions to withhold treatment,” says Diane. “It’s becoming increasingly urgent that we expand our efforts to educate and assist the disability rights community to weigh in on the public policy issues at stake. ‘Nothing about us without us’ is a matter of life and death in this context.” 

CDR, Diane’s employer for the last three years, has long supported NDY. For example, ten Rochester disability rights activists attended the trial of Jack Kevorkian that put him behind bars. Largely unknown to the general public, the majority of Kevorkian’s victims were people with non-terminal disabilities. Since 2008, CDR has provided NDY its headquarters office as well as technology and administrative supports, and that affiliation will continue after Diane moves into her new role as NDY’s President and CEO.

All this means that there are major changes with NDY starting August 1. Some changes will be apparent fairly soon. You'll see a little more of Diane on this blog. (Careful readers might have noted that this entry doesn't sound like my usual “voice” - I'm working from a document written by Diane.)

Diane brings experience, deep understanding, institutional knowledge and analytical skills related to assisted suicide, euthanasia and other public policy issues to NDY on a full-time basis - including on this blog. . 

At least for the first weeks, I'll be trying to devote more of my time to expanding NDY's online presence and look at ways to provide free materials and paid merchandise – things many people have been asking about. I'll have more time to try to catch up from where I am in terms of the new social networking opportunities that present themselves for groups like NDY.

This is a very exciting time. Diane is getting to do the work she's wanted to do – and that she is meant to do.

And I'll still be here, too.  --Stephen Drake

Satire from The Onion: Social Security Reform Bill to Live Faster, Die Younger

I love The Onion.  This is a pretty deadly picture of what bipartisan cooperation could look like in terms of tackling the budget deficit.  (Just kidding - really)

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 it to me.

WARNING - This is probably NSFW and not for people who don't like obscenity.

And remember - it's SATIRE.

Introductory blurb: The new law will remove restrictions on cigarettes, drugs, and alcohol as well as provide tax incentives for seniors who bungee jump off of cliffs.


Social Security Reform Bill Encourages Americans To Live Faster, Die Younger

Follow-up: Writer with ALS Who Penned "The Good Short Life" Considers Hanging Around Longer

Just last week, this blog discussed the NY Times essay by Dudley Clendinen about living with ALS (aka amyotrophic lateral sclerosis or Lou Gehrig's Disease) and his plans for his death.  Clendinen's definition of what constituted a meaningful life and his plans to end his life at a certain point moved columnist David Brooks to not only applaud Clendinen's decision but to suggest that more "self-enclosed skin bags" should make early exits for the good of the economy.

That was last week.  It seems that someone is messing up Clendinen's carefully imagined plans for his exit by dangling something that would make living longer worthwhile.  Maryland Morning reports:

Over the past few months, Dudley has been speaking with Tom Hall about living with ALS.  In this conversation, they talk about the op-ed Dudley wrote for the New York Times, in which he discusses the right to control his own exit — the right to die.

The article generated an enormous response–our own website received thousands of hits from all over the world, David Brooks referenced it in a column about the cost of health care, and Dudley received hundreds of letters–including one from a publishing house offering him a book deal.  “It’s a really big offer,” says Dudley.  “It may be the best deal a dying write has had since Ulysses S. Grant.”

Dudley says that makes several things possible that he hadn’t thought were options.  “I’ve been broke for 20 years, so the thought of actually being affluent for the last part of my life…is very appealing. I would love to pay my debts.   I have considerable debts.   It matters to me that I be able to pay them.  It would matter to [my daughter] Whitney because she wouldn’t have such a messy estate to deal with.”

Dudley says if he were to write the book, Whitney would help him as an assistant and contribute some writing to it.  “It would give me an opportunity to involve her in my death, in my passage, in a way that’s creative and positive and would leave something tangible, something that we produced together that she would be proud of.  It would be a bridge, I hope between now and later….that matters to me a lot.”

His choices are somewhat different now, and the scenario he once had planned out is now up in the air:

At this point, Dudley’s not sure how much longer he has to live.  Part of that will be determined by whether he consents to a tracheotomy.  “I don’t want to.  If I don’t, I might wink out this fall.  If I do, then I could prolong it.  It poses this kind of difficult personal, moral, and physical choice.  Is a book worth posing this possibility of my needing to consent to a surgery that would cut a hole in my throat to insert tubes so that I could stay alive long enough to write the book?  Which is not something I had planned to do.  The answer at this point is—maybe.”

I'm not going to attempt to predict what Mr. Clendinen will do.  The fact is, though, that he sees the possibility for doing something meaningful beyond a point in time when he previously thought that would be true.  I hope David Brooks takes note that some publishers think at least this "self-enclosed skin bag" still has valuable contributions to make. 

I won't hold my breath waiting for that column, though. 

A series of interviews with Mr. Clendinen can be accessed and heard at this link.  --Stephen Drake

NY Times: David Brooks says "self-enclosed skin bags" who want to live are driving the country into bankruptcy

This all started simply enough.  On July 9, the New York Times published an essay by Dudley Clendinen titled The Good Short Life With A.L.S.  In the essay, Clendinen, who has previously worked as a correspondent and as an editorial writer for the paper, shared his thoughts on living with A.L.S. - which he calls "Lou," short for Lou Gehrig's Disease.  He also shared his anticipation of his death. 

First, here are some of his thoughts on living with the condition:

I began to slur and mumble in May 2010. When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.

It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. “I’m not prepared for this,” I thought. “I don’t know whether to stand here, get in the car, sit in it, or drive. To where? Why?” The pall lasted about five minutes, and then I remembered that I did have a plan. I had a dinner scheduled in Washington that night with an old friend, a scholar and author who was feeling depressed. We’d been talking about him a lot. Fair enough. Tonight, I’d up the ante. We’d talk about Lou.

The next morning, I realized I did have a way of life. For 22 years, I have been going to therapists and 12-step meetings. They helped me deal with being alcoholic and gay. They taught me how to be sober and sane. They taught me that I could be myself, but that life wasn’t just about me. They taught me how to be a father. And perhaps most important, they taught me that I can do anything, one day at a time.

Including this.

I think it was this part - and maybe a couple of other lines - that inspired one friend of mine to send me a link and have me take a look, saying that in some ways it ran counter to the Kevorkian message that reran last month in the aftermath of Kevorkian's death.

I wasn't so sure.  There were many other parts of this essay that troubled me and it made me kind of hope that it wouldn't get a lot of attention.  Here's an example of what I found troubling:

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.

No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.

More...

I was close to my old cousin, Florence, who was terminally ill. She wanted to die, not wait. I was legally responsible for two aunts, Bessie and Carolyn, and for Mother, all of whom would have died of natural causes years earlier if not for medical technology, well-meaning systems and loving, caring hands.

I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.

I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.

If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.

I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways.

 I think the problems start to be pretty obvious, even without the suicide plans.  Although he respects "the wishes of people who want to live as long as they can," the consideration regarding just whose money will be used to support that life applies to anyone who isn't fantastically wealthy.

Turns out I didn't have to wait long for someone to pick up on the essay and its themes of "quality of life" and "expense" using Clendinen's essay as a jumping-off point.

On July 14th, the New York Times featured an article by columnist David Brooks, titled Death and Budgets:

I hope you had the chance to read and reread Dudley Clendinen’s splendid essay, “The Good Short Life,” in The Times’s Sunday Review section. Clendinen is dying of amyotrophic lateral sclerosis, or A.L.S. If he uses all the available medical technology, it will leave him, in a few years’ time, “a conscious but motionless, mute, withered, incontinent mummy of my former self.”

Instead of choosing that long, dehumanizing, expensive course, Clendinen has decided to face death as one of life’s “most absorbing thrills and challenges.” He concludes: “When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over. It’s time to be gone.”

Clendinen’s article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It’s doing the activities with others you were put on earth to do.

But it’s also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death — our willingness to spend our nation into bankruptcy to extend life for a few more sickly months. (Emphasis added.)

You don't have to be a health care policy analyst to see where Brooks is going with this.  In several ways, he elaborates on his theme that too many of us are insisting on living when too sick (or disabled, although he wisely stays away from that term) to do "the activities with others you were put on earth to do.") He also doesn't say if he agrees with Clendinen's list - whether tying a bow tie, walking a dog, or tie a shoe - are essential to a life worth living.

It's hard to know where to begin with an essay like the one Brooks wrote.  Fortunately, I've found a couple of essays that overlap with concerns that NDY (and me personally) would share.

Writing on The Business Insider, Dean Baker asks "Is David Brooks Really Clueless About the Inefficiency of the U.S. Health Care System?":

David Brooks appears to have made a remarkable leap forward today. He told readers, "the fiscal crisis is driven largely by health care costs."

Yes, after writing endless columns about out of control government spending and the wild liberals in the Democratic Party, someone apparently got David Brooks to look at the budget numbers. And, he saw what every budget wonk knows. While the current deficits are overwhelmingly the result of the devastation caused by the collapse of the housing bubble, the longer term shortfall is entirely the result of the projected rise in health care costs.

However, it seems that no one told Brooks that the problem is not that people in the United States are getting too much care, the problem is that we are paying too much for the care we get. The United States pays close to twice as much for its drugs, its doctors, its medical equipment as people in other wealthy countries. As a result, our per person health care costs are more than twice the average of other wealthy countries, even though they all enjoy longer life expectancies. If we paid the same amount per person for our health care as people in other wealthy countries, then we would be looking at long-term budget surpluses, not deficits.

This means that Brooks' discussion of our willingness to die when life loses its joys is beside the point. The choices around the end of life are important and difficult, but that is not our health care cost problem. Our health care cost problem is the cesspool corruption that we rely upon for our health care.

Brooks has made a huge step forward by recognizing that the fiscal problem is not one of government spending generally, but rather spending on health care. Now he has to make another huge step forward to recognize that our health care system is a money pit that is better at transferring money to providers than giving care to the public.

In addition the World Socialist Web Site featured an essay by Kate Randall titled "The voice of the ruling class."  Randall makes some excellent points, although NDY doesn't think Nazi analogies - even careful ones like the brief one in this essay - are very useful.  We'd also disagree with the characterization of Obama's health care reform efforts as "an unprecedented attack on health care for the working population…"  While NDY and many (possibly most) disability activists are less than thrilled with the final version of the health care reform bill, we tend to think it was an honest effort to expand access to health care in this country.

That's our disclaimer - reasonable minds can disagree.

The bulk of the analysis that Randall offers dovetails very well with NDY's views on this particular battle:

Brooks does suggest that anyone who is diagnosed with ALS should agree to end his or her life early. He is contemptuous of human feelings and ignores the social contributions that even seriously ill people can make.

The case of scientist Stephen Hawking springs to mind, a brilliant intellect who, thanks to the life-extending advances of modern medicine, has made some of his most important contributions even while severely disabled by ALS.

The case of Clendinen is cynically cited by Brooks in order to argue for the rationing of health care. “We have the illusion that in spending so much on health care costs we are radically improving the quality of our lives,” he declares. Why this is an “illusion” he does not say. It is, however, a fact that since Medicare—the government health insurance program for the elderly—was introduced in 1965, poverty among senior citizens in America has declined sharply and life expectancy has climbed.

What Brooks is really getting at—reflecting the consensus among America’s moneyed elite—is that these trends are positive evils and must be reversed.

He makes the sweeping statement that we “remain far from a cure” for cancer and “there is no cure on the horizon for heart disease.” This simply dismisses the significance of dramatic advances in the treatment of both a wide range of cancers—including lung, breast and prostate cancer—and cardiac disease.

According to the Centers for Disease Control and Prevention, the number of people who are now described as “cancer survivors” increased from 3 million in 1971 to 11.7 million in 2007—a 290 percent jump. Early detection and aggressive treatment have been credited with the dramatic improvement.

Similarly, according to studies reported in the Archives of Internal Medicine, rates of in-hospital mortality following a heart attack have dropped dramatically, due in large part to new medicines and surgical treatments. Between 1994 and 2006, the rate of this type of death fell by 53.9 percent among women under 55 and by 33.3 percent among men in the same age group.

Perhaps the most sinister part of Brooks’ column deals with the treatment of Alzheimer’s disease and its sufferers. Brooks bemoans the fact that a “large share of our health care spending is devoted to ill patients in the last phases of life. This sort of spending is growing fast.”

For the record, Brooks adds, “Obviously, we are never going to cut off Alzheimer’s patients and leave them out on a hillside. We are never coercively going to give up on the old and ailing.” These disclaimers are remarkably vague—deliberately so, one imagines.

What constitutes “coercion?” If, as many in the Brooks camp propose, insurance companies and Medicare and Medicaid end coverage for the most expensive drugs, procedures and tests, and people by the millions suddenly find they can no longer get the drugs and treatments they have depended on, is that “coercive?”

After all, they can decide to stop paying their rent or eating as much, and if they are wealthy, they can continue to receive the best medical care money can buy.

And that's the type of rationing that conservatives embrace.  It was just a little over two months ago that we wrote about Eric Cantor's unusual candor about his being OK with market-based rationing.  I doubt we've heard the end of how expensive some of us are and what a drain we are on the public welfare.  Not by a longshot.  --Stephen Drake

h/t to Gary Presley and Blane Beckwith for alerting me to one or more articles referenced/excerpted in this entry.

Miracles, recovery and "rush-to-judgment" revisited

Last weekend, Thaddeus Pope posted a followup to an earlier item shared and discussed on his Medical Futility Blog.

Let's take it in order.  Back in March of this year, Pope originally shared the news about the unexpected recovery of Kimberly McNeill of New Zealand, an 18-year-old who suffered severe injuries in a car crash in December 2010.

Here's a succinct account from Pope's original entry in March:

In December 2010, New Zealand teenager Kimberly McNeill was in a very serious car accident on her way to a music festival.  Physicians determined that she would never recover.  After 15 days, they withdrew life support against her family's wishes. 

But, defying the odds, Kimberly pulled through and was transferred to a regional hospital and then, this week, to her parents' home.  (Hawkes Bay Today)

This last weekend he briefly reported Kimberly McNeill is "scheduled to enroll full-time at Auckland University."  The news link included in this update provides more details:

But dad James McNeill and mum Jackie Kiddle, both trained acupuncturists, refused to accept the prognosis and enlisted the help of a senior Chinese medical practitioner specialising in neurology.

"We decided very early on to give 110% to even the smallest chance of recovery," James told Sunday News.

They put together a treatment plan using alternative therapies – Chinese herbs, acupuncture and homeopathy.
 
The aim was to build up Kimberly's strength to take her through the "crisis" period after her life support was switched off, on January 14.

With doctors' permission, Chinese herbs were fed through a nasal-gastric tube and a senior acupuncturist worked on her. James and Jackie kept vigil for 72 hours straight, turning Kimberly constantly and using homeopathic remedies to keep the fluid trapped in her lungs from drowning her.

"She made a miraculous recovery," James said. "The doctors were very pleased too and said we could take her home to Hawke's Bay. When the Hawke's Bay [Hospital] team arrived, they immediately hooked her back up on life support and it was like a dream, she just thrived from that time on."

The family credits alternative medicine for Kimberly's recovery.  I'd like to think that the constant repositioning to prevent her suffocating from fluid build-up might have helped and also can't help but wonder if one or more of the herbs involved had diuretic properties that might have helped reduce the fluid build-up in her lungs.

In any case, the hospital doesn't seem to be arguing with the family calling her recovery a "miracle."  And why should they?  If her recovery was a "miracle," then no one will ask pesky questions about the protocols used to determine not just a recommendation of life-support withdrawal, but withdrawal over the objections of the patient's family.

When Pope first reported on this, Wesley Smith posted a comment suggesting that this wasn't a "miracle" but a "rush to judgment" case.  Pope never replied to Wesley.  Pope had already weighed in with his major concern over the story:

There really are limits to prognostication.  That fact and cases like this will continue to prevent some surrogates from accepting recommendations to move to comfort care only.  There is often a remote chance of error, a chance that there will be a "miracle."

Not for the first time, Pope's operating assumption seems to be that the hospital team that ordered a withdrawal of treatment was acting within an accepted standard of care.  Instances like these are exactly the right time to be asking questions about the prognosis given by the hospital staff.

I don't expect, of course, for too many people to take the word of people like myself or Wesley Smith.  But I would like to think that some comments regarding a similar case by bioethicist Steven Miles might make Pope and others entertain some other possibilities beside the standard "miraculous recovery" line:

June 28, 2007 —


Two short weeks after the culmination of a legal battle between his wife and family over whether to maintain his life support, Jesse Ramirez of Arizona appears to be on the road to recovery.

According to local reports, Ramirez, 36, suffered traumatic brain injury in a May 30 car accident, which put him in a coma. He had been in this minimally-conscious state for a little more than a week when doctors informed his wife that he may never recover -- and she made the decision to have his feeding and water tubes removed.

Ramirez's family made a legal appeal and won, and his feeding tubes were reconnected. Now, Ramirez has regained consciousness and recovered to the extent that he can interact with visitors.

This might be sounding familiar, I suspect.  While the family is calling the recovery a "miracle" and the medical team isn't arguing, others offered a different explanation:

(The "Dr. Miles" referred to below is Dr. Steven Miles, professor of internal medicine and bioethics at the University of Minnesota Center for Bioethics.)

If there is one point of accord among both ethicists and neurologists, it is that Ramirez's recovery falls far short of a medical miracle.

"This is by no means a miracle of any kind," Miles says. "Traumatic comas are notorious for late wake-ups."

Dr. Ausim Azizi, chairman of neurology at the Temple University School of Medicine, agrees.

"There is actually a physical basis for those who recover," he says. "The reason they call it a miracle is because they're so rare."

 More...

In this case, however, Ramirez's wife asked doctors to remove her husband's feeding and water tubes nine days after the accident.

"That's a little soon, because there are so many factors involved," Azizi says.

He adds, however, that every case is unique.

"I wasn't at his bedside," he says. "Each person has a different situation; it's important to talk to the physicians working with the patient."

"In general, I would not want anyone to hear this story and be critical of his wife," says Jeffrey Spike, associate professor at the Florida State University department of medical humanities and social sciences.

"In general, we trust spouses to make good decisions for us, because in general spouses know the most about us."

Whether Ramirez's wife's decision was a good decision is open for debate, of course. But Spike says the case raises the question of whether people should trust spouses or parents to make these life or death decisions, Spike says.

"When you have these tough decisions to make, this kind of parental love makes the decisions very difficult.

And that's why we tend to trust the spouses more in these situations. Parents tend to make decisions based on what they can live with, rather than what the patient would want."

Still, Miles says Ramirez's wife may have been acting on incomplete information from the doctors about her husband's chances of survival.

"This case is about a hasty clinical decision which should have never been made," he says. "In terms of the process itself, stopping the feeding tube this close in time to the injury is actually pretty unusual. 

"This is about malpractice, not about a persistent vegetative state."(Emphasis added.)

In the end, then, I guess that I do agree with Pope's statement that "there are limits to prognostication."  But I would add that the closer to the injury the less certain the prognosis - and any early prognosis given with certainty should be treated with healthy skepticism.

In the meantime, the hospital that wrote off Kimberly McNeill as "hopeless" seems satisfied to let everyone call it a miracle due to application of alternative medicine.  A wise decision on their part, in a face-saving sense, but a less than desirable one in terms of patient safety and welfare. 
--Stephen Drake

NDLA and NCIL Action Alert! (Thurs, July 14) - Urge Congress to Reform, Not Cut Medicaid

Urge Congress to Reform, Not Cut, Medicaid	Take Action!
Support Medicaid Reform that Promotes Independent Living
Call your Senators and Congressional Representative Toll Free at 866-324-0787 today using the talking points below, and then Take Action to email your message too! BACKGROUND The National Council on Independent Living and independent living advocates from around the country are marching, rallying and meeting TODAY with their Senators and Representatives in Washington, D.C. and they need YOUR help to deliver a strong message that we need real Medicaid reform, not arbitrary cuts. We need Medicaid reform that contains costs, but Medicaid cuts shouldn’t be arbitrary and Medicaid reform should protect the civil rights of seniors and people with disabilities.  We need reform that frees people from unwanted confinement in costly institutions and reforms Medicaid to benefit all Americans. Congress needs to hear that there is strong opposition to arbitrary reductions to the Medicaid program and strong support for measures that contain costs while promoting the health, independence and civil rights of seniors and people with disabilities. TAKE ACTION 1. Call the Congressional switchboard toll-free NOW at 1-866-324-0787. 2. Send an email directly to your Senators and Representative demanding REAL Medicaid reform and opposing ARBITRARY Medicaid cuts. TALKING POINTS Tell Congress to oppose arbitrary cuts to Medicaid that hurt seniors and people with disabilities and support meaningful Medicaid reforms that save money by: Refocusing Medicaid spending away from higher cost institutional placements to meet beneficiary preferences for lower cost, preferred home and community-based services; Reducing the costly medical bias in long-term services and supports and placing greater emphasis on the necessary functions for daily living; Expanding consumer-directed service options and engaging beneficiaries more fully and effectively in their own care decisions; Increasing care coordination of services for Medicare-Medicaid dual eligible beneficiaries; and Reorganizing Medicaid to eliminate wasteful bureaucratic duplication and realign services based on functional needs. Congress needs to hear from you NOW.

NDLA Action Alert! (Wed, July 13): Contact the White House to Oppose Arbitrary Medicaid Cuts

Action Alert (for Wed, July 13): 

CONTACT THE WHITE HOUSE TO OPPOSE ARBITRARY MEDICAID CUTS!

Call and Email the White House TODAY! 

NDLA URGES YOU TO CONTACT THE WHITE HOUSE TO OPPOSE ARBITRARY MEDICAID CUTS!  Call Toll Free at 1-888-245-0215 using the talking points below, and then Take Action to email key White House Officials.

As the White House and congressional leaders look for ways to trim federal spending, Medicaid is squarely on the chopping block.  The National Disability Leadership Alliance (NDLA) and our allies are deeply concerned that the proposed Medicaid cuts will jeopardize the health, independence and quality of life of people with disabilities and seniors.

The President has conveyed a willingness to identify $100 billion in Medicaid savings. This would mean less federal funding for already cash-strapped states, likely forcing state governments to reduce reimbursement rates and cut services.  This proposal would also eliminate the enhanced FMAP that was provided for the Community First Choice Option so that states would have a financial incentive to rebalance how they provide long term services and supports in more highly preferred and less costly settings.

The President needs to hear that there is strong opposition to arbitrary reductions to the Medicaid program and strong support for measures that contain costs while promoting the health, independence and civil rights of seniors and people with disabilities.

TAKE ACTION

Call the toll-free White House comment line NOW at 1-888-245-0215.

Tell the President that he should oppose arbitrary cuts to Medicaid that hurt seniors and people with disabilities and support meaningful Medicaid reforms that save money by:

• Refocusing Medicaid spending away from higher cost institutional placements to meet beneficiary preferences for lower cost, preferred home and community-based services;
• Reducing the costly medical bias in long-term services and supports and placing greater emphasis on the necessary functions for daily living;
• Expanding consumer-directed service options and engaging beneficiaries more fully and effectively in their own care decisions;
• Increasing care coordination of services for Medicare-Medicaid dual eligible beneficiaries; and
• Reorganizing Medicaid to eliminate wasteful bureaucratic duplication and realign services based on functional needs.

The President needs to hear from you NOW. 

Call1-888-245-0215 toll-free and you'll be connected to the White House Comment Line.

Then click on http://tinyurl.com/5t7r5jd  to email key White House officials.

OR go to www.whitehouse.gov , click on the “Contact Us” link in the upper right hand corner of the home page and leave (or paste in) written comments.

NDLA THANKS YOU AND ASKS THAT YOU PLEASE FORWARD THIS MESSAGE TO AS MANY FRIENDS AS YOU CAN TO URGE THEM TO CALL, EMAIL AND ASK OTHERS TO DO THE SAME!

Prepare to Take Action: National Disability Leadership Alliance Calls for Real Medicaid Reform

Prepare to Take Action: National Disability Leadership Alliance Calls for Real Medicaid Reform

[Note:  Not Dead Yet is part of the National Disability Leadership Alliance.  We share a deep concern about proposed Medicaid cuts that threaten both home and community based services and other essential, life sustaining health care services.  This is a critical time when we must work in coalition to make our voices heard.]

As the White House and congressional leaders look for ways to trim federal spending, Medicaid is squarely on the chopping block.  But as our nation’s leaders discuss the future of Medicaid, it has become clear that people with disabilities are not being included in the conversation.

The National Disability Leadership Alliance (NDLA) and our allies are deeply concerned that the proposed Medicaid cuts will jeopardize the independence and lives of people with disabilities and seniors.  We are responding.

Today, the American Association of People with Disabilities (AAPD) is facilitating a meeting between Medicaid beneficiaries and the White House.  AAPD is giving the White House an opportunity to hear first-hand about the devastating impact that the proposed Medicaid cuts will have.  Instead of making simplistic cuts to Medicaid, NDLA organizations are calling for Real Medicaid Reform.

People receiving services understand where bureaucracy can be reduced and how services can be streamlined.  With this unique perspective, NDLA organizations have identified forward-thinking proposals that contain Medicaid spending while promoting the independence and integration of seniors and people with disabilities.  We call upon our federal policy-makers to include us in the discussion so we can truly reform Medicaid.

Over the next few days, NDLA will begin distributing action alerts.  These alerts are intended to be used to mobilize our grassroots constituents.  When you receive these alerts, please distribute them through your networks.  And encourage people to respond as if their freedom, independence, and lives depend on it… because they do.

About NDLA

The National Disability Leadership Alliance (NDLA) is a cross-disability coalition that represents the authentic voice of people with disabilities.  NDLA is led by 13 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.  The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association.

Answering Some of Roger Ebert's (and Kevorkian's) Fans

Roger Ebert surprised me.  He tweeted this post.  As a result, there were well over one thousand more visits here than is the norm on that day.

The visitor rate is still running high, although not that high.

Thankfully, there are far fewer comments from the group coming by way of Roger Ebert's tweet than could have been the case.  Most of them are quite pissed at me.  One of the reasons is pretty legitimate - when I used the word "shithead" at one point referring to Ebert.

They're right.  I shouldn't have used it - especially without explanation.  But, as a friend comment here as well, whether I think there's a justification or not just turns people off.

He's right, too.  I let both fatigue and some bad-tasting memories get the better of me.  See, this wasn't the first time that Ebert and disability activists have crossed paths on this topic.  I'll save that for the end, though.

One commenter called me a "coward," while writing from an anonymous email account, the irony apparently lost on him or her.

Several people seem to be under the misguided notion that the issues I'm talking about are just about me - a personal thing.  A rant from a lone blogger.

In fact, I am the only paid staffer for a disability rights group that was formed in 1996.  In 1997, over 500 disability activists gathered in front of the Supreme Court to voice opposition to legalization of assisted suicide while the Court considered two cases claiming a constitutional right to assisted suicide.  NDY also organized a rally and protest against the appointment of bioethicist Peter Singer at Princeton University, involving about 200 disability activists.  This is a list of organizations that support NDY's position on legalization of assisted suicide.

NDY is a member of the National Disability Leadership Alliance, "a national cross-disability coalition that represents the authentic voice of people with disabilities."  Further, "NDLA is led by 13 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.  The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association."

Have I made my point?  I'm not just some cranky guy obsessing on this.  I'm a guy whose job it is to obsess on these issues.  The latter is better, because it pays the bills most of the time.

At least one person insisted that I must have formed my opposition to legalization of assisted suicide by being influenced somehow by religious fundamentalists.

In fact, there were two key events that shaped my views on assisted suicide - or more importantly - the agenda of the activists promoting it. (assisted suicide isn't making progress because of some "natural" shifting of norms, but as the result of some skillfull, consistent and well-funded marketing over the past decade and more)

The first event was reading an article about Kevorkian in a disability magazine that had unbelievable claims about the people he "helped" being nonterminal and how motivated he was by live human experimentation.  Then I found Kevorkian's book in an overstock bin, bought it, read it and found out that the article I read just skimmed the surface of how grotesque Kevorkian's ambitions were.  Don't take my word for it.  Please buy his book, especially since he's no longer alive to collect royalties.  Get it from a library.  Read the damn thing.

The second event involved a notorious case in Canada, in which Robert Latimer confessed to having killed his 12-year-old daughter, Tracy, by gassing her in the cab of his truck.  After the medical examiner determined that Tracy's death occurred through asphyxiation and confronted Latimer, Latimer confessed but said he did it out of "mercy."  What struck me as very weird at the time was that the "right to die" organizations in Canada (who claimed they were after legalized assisted suicide for terminally ill people who were legally competent to ask for death basically adopted Robert Latimer as a poster child.

At one point, Latimer was sentenced to a ten year to life sentence.  The NY Times published a quote from a "right to die" leader in Canada that sent a clear signal to disability activists and advocates across North America:

Marilynne Seguin, executive director of Dying With Dignity, a Toronto-based group promoting freedom of choice for physician-assisted deaths, said that the Latimers had already lived under a sentence during the 12 years that Tracy was alive and that to add the 10-year punishment "is quite unconscionable."

Do I really have to spell out what she's saying here?  Please write if you don't get this.

Lastly, as I promised, there's the bit of the prior clash (although never really direct) over some of this same ground.

People might remember that "Million Dollar Baby" was the movie of 2005.  In reality, it saw limited release in 2004, just under the wire for Oscar consideration for that year.  (this was just one of several clever marketing moves)  It was almost universally acclaimed as a masterpiece by critics - before almost any of the public had a chance to see it.

People might also remember there was some controvery over the movie.  Probably you remember that some "prolifers" created a stink.  That's kind of how it ended up, but it's not how it began.  It began with a review of the movie that I wrote, which was followed by a protest by disability activists in Chicago, covered in USA Today, the London Telegraph, and by Michael Miner of the Chicago Reader.

After that protest, op-eds and essays started appearing in newspapers across the country, by disability activists, advocates and scholars.  Virtually all took exception to the stereotypes and really primitive plot devices that all led up the killing of a newly-disabled woman, at her own request.

It lasted for awhile, and then, suddenly, really - disability voices were pushed out of the discourse.  Since it's my job, I tracked the pivotal event to one long and angry diatribe by a respected Chicago Sun-Times movie critic.

The Disability Studies Quarterly devoted part of an issue to thoughts and analysis revolving around the film and the resulting discourse.  I was interviewed by the editors to get my own thoughts about the rise and fall of disability representation in the discourse.  It's reproduced below:

Million Dollar Baby and Not Dead Yet
Stephen Drake
Not Dead Yet
E-mail: Sndrake@aol.com

We started it. Really. Not Dead Yet (NDY) and others in the disability community really kicked off the controversy surrounding Million Dollar Baby. Baby opened in late December of 2004 in a limited release, qualifying for the 2004 Oscar nominations. As a result of this marketing strategy, Baby was deemed a "masterpiece" and Oscar-bound before the majority of Americans were able to see the movie.

Chicago was one of the cities slated for the limited release.  We received two calls from disability activists. One had merely heard about the euthanasia theme of the movie. Another had gone to see it and wanted NDY to know about it.

As research analyst for NDY, the job of seeing the movie fell to me.  Sometime during the first week of January, I went to see Baby at a packed matinee showing. Within a few days, I had drafted a critique and call to action that was published on January 11th at www.raggededgemagazine.com. In the article, I hit many points that would be repeated by other disability activists, scholars and advocates:

1. The movie was deceptively marketed.
2. The portrayal of rehabilitation and consequences of spinal cord injury were unrealistic
3. Highlighted Eastwood's history of anti-ADA activism.
4. The fact that Maggie had the right to have her vent turned off was ignored. The right to refuse treatment didn't exist in this movie.
5. Called for others to see the movie, make their judgments, and protest, if they saw the same movie I saw. (Note: the fact we did not call for a boycott really threw opponents for a loop, at least for awhile, since it would have made us easier to attack.)

These points and others would be expanded upon and added to by many others in the disability community in the following weeks.

The next thing that followed was a direct action.  The Chicago Film Critics Association was hosting an event on January 19th.  What better target for a protest than a group of critics who had unanimously praised the film and hidden the "surprise ending" from viewers?  A group of disability activists, scholars and advocates all braved the cold to leaflet and picket the event.  There were photographers, reporters and camera crews who came just to report on us - a result of the advance press work. Part of the draw was the just-released press release from the National Spinal Cord Injury Association blasting the movie and Clint Eastwood.

As a result, disability advocates received some unprecedented airing in the print media - the objections to the movie and to Eastwood were covered in the NY Times, London Telegraph, Chicago Tribune, Los Angeles Times and a nationally-disseminated Associated Press story.

Roger Ebert, arguably the most widely-read and watched movie critic in the U.S., was one of the attendees at the Chicago event.  Some signs were even targeted at him (Ebert says: "thumbs up to killing cripples.")  Ebert also likes to think of himself as having knowledge and sensitivity about disability issues, and has done some fundraising work for a disability advocacy organization in Chicago.

Ebert ignored any approaches from disability advocates here in Chicago before or immediately after the protest at the Chicago Film Critics Association.  The impetus for his response was undoubtedly the knowledge that Chicago columnist Michael Miner was composing a column about Million Dollar Baby and the disability protests.

Ebert's "response" - published on January 29 in the Chicago Sun-Times --  was a classic example of a response from a white male under attack by a minority group. His essay contained the following elements:

1. Ebert assured us that some of his best friends were disabled.
2. Ebert assured us that he had promoted other quality films about disability.
3. Ebert informed us that a friend of his was a disabled film critic who also loved Million Dollar Baby.
4. Ebert told us he saw a great documentary on quad rugby at the Sundance Festival (Murderball) and that everyone should see that movie.

Ebert wasn't done, though.  By the end of the article, he misinformed his readers about the nature and scope of the disability protests.  Ignoring the fact that disability advocates, activists, and scholars were reaching out to mainstream media, he informed readers that we were alerting our own "constituency" about something that might be harmful to emotionally vulnerable, newly injured people with disabilities.

Ebert mostly wanted to talk about the wrongness of "spoiling" - revealing the plot of a movie- and to rant against the religious right.  In doing so, he singled out Michael Medved as someone who had "spoiled" the movie to advance an agenda.  One silver lining of Ebert's "response" was that its lopsided nature no doubt aided the acceptance and publication of an essay by myself and journalist Mary Johnson.

Ebert's theme and marginalization of disability was quickly picked up by nationally syndicated columnists Maureen Dowd and Frank Rich, along with other columnists.  (It should be noted that the disability voice was absent from the beginning in conservative media, with a few token mentions in the Washington Times.)  The list of conservative critics being blasted for "spoiling" the movie got longer.

In the lists of "spoilers," there was always one name conspicuously absent, though.  David Edelstein, a film critic on National Public Radio and Slate, blasted and "spoiled" Million Dollar Baby in both forums.  But Edelstein is a liberal, writing and speaking in very non-conservative media outlets.  Including his name to the list of "spoilers" would have wrecked the ideological purity of the lists being promoted.

In short, Ebert's "response" triggered a steamroller that pushed the voice of disability advocates out of the coverage of Million Dollar Baby.  It started with marginalization and by the end, our presence was eliminated and the controversy about the movie redefined.

What this amounted to was an all-too-familiar collaboration between conservative, mainstream and progressive media.  This "collaboration" erased disability from the landscape of the story, to be replaced by a story about a volley in the "culture wars."  Since neither the left or right sees us as part of their respective cultures, we ended up as collateral damage.  By the time the Oscars rolled around, the story had been completely morphed and we were virtual "road-kill."

This set the stage for a repeat performance of cooperation in the wave of press coverage in the final weeks of Terri Schiavo's life.  The effort to keep the story within a "culture war" framework was so extreme that Senator Tom Harkin's passionate efforts to save Terri Schiavo's life were ignored by the media, along with national disability groups that had been involved in the efforts for over two years.

The best predictor of future performance is past performance.  That being said, we can know in advance how the media - *all* the media - will respond to disability advocates' involvement in anything smacking of "right to die" issues.

Let's be honest - no one besides ourselves has a vested interest in giving us our proper place in public discourse about "right to die" issues or just about any issue.  Journalists and editors are used to thinking of disability from a "human interest" angle - stories of inspiration, overcoming, or longing for cure.  Bioethicists don't want us invading their "turf," which in this case, happens to be policies aimed at people with disabilities.  The left doesn't want to acknowledge disagreement with us on some "better dead than disabled" topics.  The right doesn't want to acknowledge us since the term "disability rights" is despised in conservative circles.

None of this is going to change anytime soon.  And it won't change at all if we don't help the process along. What we can change is our own performance.  The only way we get into the public discourse is by inserting ourselves there.  Judging from what was accomplished over the past few months, it seems obvious what that will take.  We should not shy away from peaceful protests, especially at atypical venues (I doubt the Chicago Film Critics Association had ever been picketed before) that will grab attention.  Street protest isn't enough, obviously, we have to be primed and ready to respond with our press releases, op-eds, letters to the editors, etc. In short, speak out louder, longer and more forcefully.  A hint from traditional activism - angering someone makes it hard for them to ignore you.  That's true for Roger Ebert, Maureen Dowd and Bill O'Reilly.  Sure, they'll diss us - but they'll have to acknowledge us before dissing us.  Being openly attacked is preferable to being systematically ignored.

We followed up with Drake and asked him to clarify several points. What follows is his response.

Stephen, commonly, we see the culture wars as being 'fought' over polarizing issues like abortion, and it is pretty clear where the two sides stand. In the Schiavo case and in the Million Dollar Baby response, these sides weren't so clearly divided, and there was confusion about what was the 'progressive' and what was the 'conservative' side of things.  Though you refer to conservatives and liberals in your piece, they aren't so easily separated when looking at their response to the movie. Is there something to be gained from the deconstruction of the polarity, from the dissolution of distinctions between camps?

Drake: Well, the players certainly looked pretty diverse at the beginning of the Million Dollar Baby controversy.  Eastwood is a conservative Republican with an anti-ADA background.  The United States Conference of Catholic Bishops' official review of the film labeled it "offensive" but came up ambivalent about the treatment of euthanasia.  Initially, only a couple of conservative commentators blasted the film, but they gave the impression Eastwood was some new film pioneer of the left.

That left an ideal opportunity for the disability community to be heard, since the "usual suspects" were unusually quiet initially.  There was this void, just waiting to be filled, in the ongoing media blitz over this "masterpiece" that almost no one but critics had actually seen.

Disability activists, advocates and scholars became central figures in the controversy - briefly.  The fact that we played a central role served as a tool of deconstruction over the false right/left dichotomy over assisted suicide.  I suspect that one of the reasons we met such strong resistance after initial success was due to our role as agents of deconstruction.  Deconstruction serves our interests as a community, since the current paradigm doesn't allow for our part in the debates over assisted suicide and euthanasia at all - unless it's an individual disabled person asking to be killed.

What do you think the word collaboration should mean?  You talk about collaboration as an overlap of concerns.  But you hint that this collaboration might be more actively undertaken, particularly in order to silence the disability community.  Alternatively, what collaboration would you like to see amongst the media and/or in the disability community?

Drake: If I implied any sort of conspiracy or planning between, say, Fox News and MSNBC, then I communicated badly.  I put scare quotes around the word "collaboration" because it was the closest I could come to the phenomenon as it played out.  In fact, it was probably closer to a herd mentality when it comes to the media.  Almost any divisive issue gets portrayed as an aspect of the "culture wars," and that is just as true for The National Review as it is for The New York Times.

You don't need active collaboration or a conspiracy to get certain types of behavior patterns that lead to oppression or exclusion.  Sexism and racism aren't conspiracies, but the prevalence of sexist and racist attitudes can lead to patterns of discrimination from a wide array of players.

Can you share some of the goals you had for the protest of the film?  Can you share goals for future protest, and for the future stance of Not Dead Yet towards the media, particularly on issues such as those raised by Million Dollar Baby?

Drake: As a community, we have been unable to establish ourselves as the experts on issues affecting our lives.  This isn't limited to the issues of assisted suicide and euthanasia.  Time after time, news related to disability is dominated by surrogates - bioethicists, service providers, medical professionals, etc.  We don't get to be our own experts.

One hope with the "Million Dollar Baby" protests was that we could raise our overall presence in the media, and hopefully raise our visibility in future media coverage.  To a certain extent, there's been some tangible success.  Right now, news stories over the assisted suicide battle in California almost always reference disability advocates as part of the opposition coalition, and often quote disability advocates.  Several major stories about the infanticide proposals in the Netherlands have featured comments by representatives of Not Dead Yet and spina bifida-related organizations.

The media is entrenched in dealing with disability from a "human interest" or totally medicalized perspective.  With few exceptions, the media also favors framing all political controversy as an aspect of the "culture wars."  The only way we're going to break through that is to take the ground ourselves.  We must look for our opportunities, whether it's a local homicide being called a "mercy killing" or the newest scandal regarding mistreatment in nursing homes.   In situations like these, we have as much expertise and as much at stake as others who jump to be heard in the media - whether it's the latest incarnation of the Hemlock Society or the local nursing home lobby.  They're not shy about being opportunistic - we should learn from that.  We can either sit and wait for our world to change to our liking or do what we can to change it.  We can stake our claim by asserting "nothing about us without us."

So that's about as much history and explanation as I'm up for tonight.  It came as a surprise - and an annoyance - that after all that, Ebert didn't seem to process (or acknowledge) there's a significant disability contingent with a horse in this race.  I know that during that year he debated John Hockenberry about the movie, and I'm pretty sure John would have covered a lot of the same territory NDY does when we talk about these issues.

I have a feeling this won't make any of the angrier commenters any less angry, but I won't take responsibility for that.  --Stephen Drake