UK: The Independent - "Disabled people need assistance to live, not die," by Clair Lewis

By now, readers of this blog are probably getting familiar with the name and the writing of Clair Lewis.  Today is another chance to read what she has to say about the recent developments in the UK. 

Writing in The Independent, Clair says "Disabled people need assistance to live, not die. "

Here's the first part of her essay:

There is a saying among disabled people that goes: "If it hurts, we know we're alive". Like most humans our natural instinct is not merely to survive but to flourish. For this we need assistance to live, not die. Disabled people suffer so much neglect, isolation, exclusion and discrimination that some volunteer for euthanasia. But this is not the only way to address suffering. What about assistance to live?

When healthy people are suicidal, the usual response is to try to help them live better lives, not provide a solution which encourages them to die. It seems that disabled people are the only people who can be suicidal and mentally competent at the same time. Help offered to people with suicidal feelings is often inadequate. But however strapped for cash the NHS is, the one thing they won't do is offer to finish the job off properly. 

This is why people like me are so concerned about the Director of Public Prosecution's new guidelines on assisted suicide. On the surface, they look like an attempt to equalise the legislation – they move the focus on to the motivations of the assistant, widen up who may assist in a suicide and pay particular attention to whether an assistant's actions were "compassionate". But what is the definition of compassion?

Read the rest here.  And consider leaving a comment on the site so the paper know the essay was read and appreciated.  --Stephen Drake

UK: Director of Public Prosecutions Publishes Guidelines on How to Get Away with Murder

The long-awaited - and dreaded - "guidelines" from the Director of Public Prosecutions in the UK have been published.  There are many reactions and lots of commentary out there, but by far the best I've read so far is from Clair Lewis, who writes "Getting Away With Murder: Discriminatory how-to guide is a national disgrace":

(excerpt)

In an unprecedented move, the Director of Public Prosecutions will release his special guide on how British citizens can aid and abet suicides with his approval.. as long as they only do it to the people he's selected as fit for death.

Helping end someone's life is a crime, which usually carries a 14 year prison sentence, but not so if the corpse is one of someone who was very sick and they were 'asking for it'. In which case, judging by recent news and the killers walking free among us, you get freedom and national hero status.

Now we will all have a neat little guide to help us kill our loved ones right.. to CPS standards. State approved Assisted Suicide Kits aren't available, but then, it takes time to organise given how many hundreds of thousands of very sick people must need their family's 'help'.

In a late addition to her blog entry Clair added the following:

If you want a full copy of DPP guidelines on assisting suicide, message me your email address - I just got sent one by Roger Daw, the DPP himself.

It seems, quite differently to the draft which came earlier, he has unexpectedly taken out the reference to impairment/health and Mr Daw wants to know if we're satisfied now (am about to read the full thing so can't confirm, anything yet).

Is this a victory for disabled people.. have the public in response to their consultation talked him round?  Does this mean now anyone can help anyone commit suicide? I find that unlikely. And who else would this law affect except the only community considered (impossibly) to have improved lives via death? Who else can be killed for their own good?

If I get where Clair is going with this, I agree.  It's pure bullshit to think that age, health status and disability - characteristics of the deceased - will cease to be the most important criteria in determining who escapes prosecution.  After all, it pretty much works that way now, without "guidelines" from the DPP.

 I meant to write more on this earlier today and will follow up tomorrow.  Clair brings up some other issues - such as a decreased presence of disability activists in the debate.  I have been thinking about these things and how they relate to how the whole pro-euthanasia movement seems to be snowballing right now.  I have some possible answers - and I'll write more about that tomorrow.  --Stephen Drake

Testimony of Karen Scheiderman - MA Assisted Suicide Hearing

Karen Schneiderman reconstructed her testimony from notes and memory - the following is a fairly accurate recounting of her testimony:

For the Boston Center for Independent Living
60 Temple Place 5th floor
Boston MA 02111


Regarding House No. 1468
Assisted Suicide


My name is Karen Schneiderman, and I work for but am not presenting an official position of the Boston Center for Independent Living. I am a woman with a disability who lives in the state of Massachusetts and has deep distrust about the motives and needs to institute assisted suicide in the Commonwealth.

We live in a culture that does not value people with disabilities even when we are healthy. We are considered a financial burden and a frightening look at anyone’s potential future. Our lives are perceived as sad and lonely. As a productive woman, with two jobs, a Ph.D., married and living a good life, I resent this stereotype and I worry that I would be just the sort of person who might be a good “candidate” for assisted suicide were I terminally ill or suffering and unable to be cured of some additional illness or disability in addition to the one I was born with – Spina Bifida – the second most common genetic disability. The medical profession has at times been both a friend and an enemy to me, saving my life at birth and experimenting on me later in life.

This profession is a profit-driven institution that makes decisions based on financial as well as medical issues and were I to be in a situation where I were so sick that it became financially burdensome to the State, I suspect many physicians would support my decision to kill myself with their help if I were in a state of fear and helplessness. I can hope that family members will be around to help me through the depression and fear but one cannot be sure of such a thing. It is easy to see why in such a state I might decide with the “help” of the medical profession to choose death.

This is a deeply private decision, not one to be made with a doctor, even a doctor with scruples, because the entire culture in which we live already sees me and my sisters and brothers with disabilities as throw aways. I know there will come a time when I will feel the desire to end my life, as I suspect most people do at some point. As the daughter of a healthy 92 year-old man who chose to jump to his death in an act of suicide a decade ago, I know whatever drew him to it was not helped by the same culture that worships youth and puts up with elders, despite their value as human beings of any age.

I oppose assisted suicide at this point in history where people with disabilities are perceived has inherently less worthy than non-disabled people and I choose not to put the final piece of my fate in their hands. Not now, when our culture sees us through a prism of uselessness and dependency. That model is inaccurate now and I have no illusion that there will be a sea change in my lifetime, however long that is.

Thank you.

We will post others as they become available. If the documents are too long, we'll post excerpts with a link to a document online. --Stephen Drake

Disability Advocates Testify at Massachusetts Hearing on Assisted Suicide Bill

Yesterday, in spite of short notice and a long delay in the start of the hearing, disability advocates testified in opposition to a bill that would legalize assisted suicide in Massachusetts. Testifying in the video link from NECN are Denise Karuth and Karen Schneidermann, both long time disability advocates. John Norton, diagnosed with ALS (erroneously, I would guess) at age 15, also testified against the bill. We hope to have written versions of testimony - including some that was sent via fax or email - and post it here in the near future.

Our deepest thanks and appreciation to everyone who did what they could to make their voices heard on this bill with so little notice. --Stephen Drake

Massachusetts: Assisted Suicide Bill Hearing Tomorrow - Interesting Quotes from Paul Spiers

Last Friday, we got word that the Massachusetts legislature would be holding a hearing on an assisted suicide bill tomorrow - February 23.  Here's the full info (received on Friday) with a link to the bill:

The Joint Committee on the Judiciary of the Massachusetts General Court (state legislature) has just announced that House Bill 1468, An Act Relative to Death with Dignity, will be on the docket for a hearing scheduled for Tuesday, February 23, 2010 (next week), to be held at 1 pm in Room B1 at the Massachusetts State House in Boston.

We contacted disability activists in the state.  Even with such short notice, we should have at least one activist offering testimony at the hearing tomorrow.  Hopefully, that can be shared here later this week.

Earlier today, the Boston Herald published a short article about the hearing.  We received a call from reporter Laurel Sweet yesterday afternoon and gave her contact info for a couple of disability activists - apparently she was unsuccessful in reaching one of them in time to make the deadline for her article.   She did get a couple of short quotes from a local pro-assisted suicide advocate and they make for interesting reading and interpretation:

Professor Paul Spiers of Danvers, who teaches forensic neuropsychology at Boston University, became an advocate of the right-to-die movement after a 1994 horseback riding accident left him paralyzed from the chest down.

Before we get to the quotes, I found it interesting that there were certain things that this article doesn't say about Spiers. 

For example, Spiers isn't described as "the president of the board of Autonomy, Inc."  Autonomy, Inc. calls itself a disability rights group but limits its activities to signing briefs in assisted suicide cases.  I don't know what position Spiers holds now or what the status of "Autonomy, Inc." is - it has disappeared from the web.  The name of the group is featured on an amicus brief filed in the Baxter v. Montana case last year. But "Autonomy" itself has vanished.  Compassion and Choices includes him on their Speakers list, but they don't mention "Autonomy, Inc. there, either.  I'm beginning to suspect that the "organization" exists only on paper for the sole purpose of enabling Compassion and Choices to file a "disability" amicus brief in court cases that come up.

FYI, NDY also filed a brief in that case.  The brief, available in rtf format here, was filed on behalf on Not Dead Yet, ADAPT, Disability Rights Education and Defense Fund, National Council on Independent Living, and the National Spinal Cord Injury Association.

You might recognize those organizations.  Unlike Autonomy, they are actual disability rights organizations.

Now, for the quotes from Spiers:

“It becomes important when you’re looking at life in a wheelchair, but it’s the one choice we don’t have,” Spiers said.

In spite of years of protestations to the contrary, Spiers' statement strongly implies he is endorsing suicide assistance, not just for the "terminally ill," but for people with non-terminal and relatively stable disabilities - such as spinal cord injury.  Maybe he feels the time is right to be more open about his personal agenda for legalization.

More from Spiers:

“We’re kinder to our pets than we are to people. You should be able to die peacefully in the company of your family and friends.”

It could be that Spiers is unfamiliar with the grim realities of pet euthanasia.  Or, like most people, he maintains a fantasy about why we end the lives of our beloved pets - even though many - maybe most - aren't dying and in significant pain.  More likely, they are too much bother to take care of, they're peeing on the carpet, or too expensive to treat medically.  It could be - like most people - he's not applying critical thinking to why we actually kill our pets - reasons that have a lot to do with our own wants and needs rather than the animal's.

For more on the less-than-romantic realities of pet euthanasia, read this article that I coauthored with Dick Sobsey.  --Stephen Drake

Alternet: Ann Neumann's Disingenuous Complaints About the State of the Euthanasia Debate

There's a fresh piece from Ann Neumann on Alternet, bemoaning the way the euthanasia debate in the UK - and here in the US - has become another aspect of the "Culture Wars." 

As mentioned in an earlier post, there has been a flood of pro-euthanasia coverage in the UK.  It's even got Ann Neumann, who is pretty much a zealot on the subject, rolling her eyes a bit.

Here's an excerpt from What Britain's Assisted Suicide Should Teach Us:

All this attention on the issue of assisted suicide has made for some widely-read and sensational news.  But, as Peter Beresford blogs at the Guardian today, the war over assisted suicide has done little to address the practical, non-contentious issues surrounding assisted suicide.

What would those issues be and who would speak about them?  Well, Neumann has ideas on that - and read carefully to note just who she leaves out:

When you’re in a culture war, there is no DMZ.  And everybody is an “independent advocate.”  Who do you ask for that safe space?  The government?  The media?  The church?  The medical profession?  Because other end of life care issues have been framed into the assisted suicide debate, they can’t be addressed in a rational, meaningful way.  Is the solution increased public education?  A broader coalition for patients’ right?

(She also blames a lot of the discourse on well-funded "pro-life" groups, as though the membership of pro-euthanasia organizations consisted of poor people on public assistance instead of affluent members of society giving hefty cash donations.)

Anyway, if you're here and you're reading this - it's obvious who she left out.  Disability advocates and activists - in the US and the UK - oppose legalization of euthanasia and assisted suicide.  The "practical" issues she and Beresford refer to are exactly the economic, social and support factors that disability advocates constantly bring up as being central to any discussion of assisted suicide and euthanasia.

And Neumann already knows this - or she should.  She found her way to Bill Peace's Bad Cripple blog last month, but shied away from engaging from the critique of her initial attacks on what she termed "slippery slope" arguments on the blog.  Not long after that, she announced the news of the Disability and Health Journal Issue on Assisted Suicide on her own blog.

So she knows that disability activists and advocates are out there, talking about the "practical" things.  The trouble is, we think legalization of assisted suicide and euthanasia is bad policy. 

In other words, she's fostering and promoting the very polarization that she bemoans.  Maybe it's because she really isn't sorry that assisted suicide is seen as a "culture wars" issue after all.

She's wrong about that DMZ - we live in it.  And neither the pro-euthanasia activists nor the highly political "pro-life" organizations want to acknowledge our place in the debate, because we'd distract from their Culture War.  Neither side really sees people with disabilities as having a place in their respective cultures, so it's easy to marginalize us - and both sides do it with abandon and ease.

I hate ending on a sour note like this.  If you want a solid reality check on what is going on in the UK, please check out the newest column from Disability Bitch.  DB's column generally revolves around what and who she hates - just about everyone and everything (although with an admitted soft spot for fellow bitch Heather Mills).

Things are bad indeed in the UK - so bad that the DB's column this week announces that "Disability Bitch Loves Life":

(referring to her "no-legged friend"):

Yesterday, he told me I would have to wait until he'd finished reading about the new crippled actress in Coronation Street before he'd get me dinner.

That was enough. "I'm hurting here," I told him. "Have some compassion."

"OK," he said. "Would you like me to smother you to death with a pillow?"

Goodness. It took a moment's thought. "No," I said, "but it would be great if you could pass me some ibuprofen."

He looked surprised but, eventually, shuffled off to the kitchen to get my supplies, checking I only wanted two anti-inflammatory capsules and not, you know, two hundred.

It seems a good moment to reiterate that I LOVE LIFE. I don't normally bother saying such things, but then, people have been stating the obvious a lot lately. Only a few days ago, I heard someone from a pro life campaign group telling ITV news, "Killing people is illegal." It seems the world needs reminding of these simple things.

So, for the sake of clarity: I'm Disability Bitch, and I do hate the world and everything in it, but I don't want to die anytime soon. It's no surprise my No-Legged mate thinks I might want to glide off this mortal coil sooner rather than later. The thing is, I don't. I quite like being here. 

 

If you examine the current British news agenda, you'd think this is a rare emotion for someone disabled and living in pain. See, every single major news story relating to disabled people in the last month or so has been on the subject of voluntary euthanasia, culminating in this week's headline that, several years ago, veteran BBC journalist Ray Gosling admitted publicly to killing a lover who was dying of AIDS. We know because he announced as much on a BBC regional documentary filmed several months ago which was only broadcast this week.

Call me old fashioned, but I'd always assumed that if I mentioned to my employer that I once deliberately suffocated someone, they might, y'know, call the police and report the event. Instead, the so called mercy killings of terminally ill or disabled people have become humdrum with him talking openly about it in radio and TV slots the next day. At time of writing, Mr Gosling has been arrested on suspicion of murder. 

That's just an excerpt.  Read the rest here.

I'd like to see the situation improve, but when you consider the combined efforts of the media, pro-euthanasia lobbyists, and the religious advocates - none of whom seem inclined to point to the relevance of disability advocates in this debate - I'm afraid the poor Bitch may have to remind people that she really loves life in the future.  --Stephen Drake

Presidential commission bodes ill for people with disabilities - Mike Ervin in "The Progressive"

People who have read the selections in our humor section will already be familiar with Mike Ervin, who writes a bimonthly satire column in New Mobility.

Mike also writes serious pieces of policy, media and cultural analysis.  He's written many of these as op-eds for the media project at The Progressive.

Mike's latest piece looks at President Obama's proposed bipartisan commission on entitlement problems.  He figures - no doubt correctly - that the "common ground" the parties will find entails cutting the supports for poor, disabled and elderly people. 

Here's the intro for Mike's op-ed, on the proposed bipartisan commission and what it could mean for people with disabilities:

President Obama’s decision to create a commission on how to cut so-called entitlement programs is ominous news for millions of people with disabilities.

In January, the Senate rejected legislation endorsed by Obama that would have created such a commission.
So in his State of the Union address, the president said he would create a similar “bipartisan fiscal commission” by executive order. Obama stated that his commission will be “modeled” on the one rejected by the Senate.

If his commission is anything like the one that was in the Senate bill, it would pose a serious threat to people with disabilities, seniors and others who rely on programs like Social Security, Medicare and Medicaid.

Maybe gridlock isn't such a bad thing after all.

Read the rest of Mike's essay here.

Resources: Two websites - one new, one updated

I wanted to highlight two valuable resources for NDY readers.  I try to point out other sites and blogs containing material related to NDY issues.  They are valuable for me and I figure that readers of this blog will find them valuable as well.

First off is a brand-new website.  Better Off Alive is a creation of Pamela F. Hennessy, with Clair Lewis currently listed as the sole other contributor on the site.  The site covers a range of subjects - media, elder care, eugenics, euthanasia - to name a few.  Here's a brief description of the of the site from the source:

Better Off Alive is a community for people who have been denied wanted health care or who have been encouraged to hasten their own deaths because they live with disabilities or chronic medical circumstances.


Our contributors are people whose lives have been directly touched by these issues, disability rights advocates, life advocates and those who seek a higher level of medical ethics and the restoration of personal liberty to people victimized by health care rationing.

Please check out Better Off Alive - better yet, bookmark it to check back for updates.

Next up is a newly-updated resource.  Disability Rights Education & Defense Fund (DREDF) has overhauled its section on assisted suicide with lots of resource material.  Here's some info on DREDF from the site:

The Disability Rights Education and Defense Fund, founded in 1979, is a leading national civil rights law and policy center directed by individuals with disabilities and parents who have children with disabilities.

The mission of the Disability Rights Education and Defense Fund is to advance the civil and human rights of people with disabilities through legal advocacy, training, education, and public policy and legislative development.
The vision of the Disability Rights Education and Defense Fund is a just world where all people, with and without disabilities, live full and independent lives free of discrimination.

Check out DREDF's Resource Page on Assisted Suicide here.

Virginia: Easing Standards for Declaration of Brain Death - and Increasing Errors

I've been intending to write something about the complicated relationship between statutes governing brain death and the actual protocols used to determine when someone is brain dead. That will have to wait for another time. Right now, it looks like the state of Virginia is poised to streamline the requirements for declaring a patient "brain dead."

According to the bill tracking information on Richmond Sunlight, the law currently requires two physicians to make a determination that brain death has occurred and that one of them has to be a specialist "in the field of neurology, neurosurgery, or electroencephalography." SB13 changes that by adding "critical care" to the list of specialists who can make a determination of brain death.

First, the good news: it still takes two physicians to make a determination.  The bad news, of course is that neither of the physicians has to have any expertise in anything related to neurology.  That means that false determinations of brain death are a virtual certainty.

The reason I say that false determinations are a virtual certainty relates to the reactions from medical experts (not to mention common sense) that were quoted in a 2006 article published in The Star-Ledger, when New Jersey was considering even more drastic changes in the personnel allowed to make a determination of brain death.

Yesterday, I searched the newspaper archives and bought a copy of the 2006 article by Angela Stewart. For those who want to hunt the article down, it's titled "Deciding when life has come to an end - Medical board to review who can declare when brain death occurs," and was published on June 12, 2006.

Back then, NJ was also looking to expand the range of medical professionals allowed to make a determination of brain death - and to drop the requirement for two physicians.

Here are quotes from medical professionals about dropping the requirements for specialists related to neurology being involved in the determination:

Martin Gizzi, a neurologist who chairs the New Jersey Neuroscience Institute at JFK Medical Center in Edison,said he is concerned about brain death rulings coming from doctors whomay not be properly trained.

For example, it is important to decipher whether a patient's response is the resultof real brain activity or a spinal reflex, he said. 

More...

Michael Williams, an associate professor of neurology at Johns Hopkins in Baltimore, believes most hospitals - including his - still prefer a neurologist or another expert doctorto make the pronouncement.

"Youjust don't run in and look at the patient and say, 'Yes, they are brain dead.'

It requires a thorough and detailed examination," said Williams, who also is chairman of the American Academy of Neurology's ethics, law and humanities committee.

Williams recalled a case study in the Journal of Critical Care Medicine involving apatient with Guillain-Barr‚ syndrome who was mistakenly thought to be brain dead.

"Fortunately,they did some testing before the second brain death examination that demonstrated the patient had EEG (brain wave) function. The patient actually got better," he said. 

So why is this being pushed? I'm guessing, but here are some possibilities:

1. Unlike the other specialists in brain-related areas, critical care specialists are readily available in an emergency room - and probably the ICU.  This means that a determination of brain death can be made more quickly, freeing up a room and other resources - and getting any organ donation request much more quickly.

2. Given the sloppy usage of the term "brain death" regarding people who clearly were not (e.g. Haleigh Poutre and Dorothy Livadas) in some high-profile cases, it's clear that at least some medical professionals don't see much harm in erroneously labeling someone as "brain dead" if they think the person doesn't have much of a chance of a "meaningful" recovery.

If people are declared brain dead under the new rules who would not have been under the old ones, it might also result in a small increase in available organs for transplantation.

There is at least one transplant recipient who isn't celebrating this particular development.

Alison Hymes is a Virginia cross-disability activist who is an organ recipient from a person who died.

She says she would not have accepted a transplant if thislaw were in effect when she got hers.

Alison is the one who alerted me to this innocuous-looking piece of legislation in Virginia. --Stephen Drake

Clair Lewis: At the end of life's tether (UK)

There has been a lot happening in the UK in the past couple of weeks and I'll be writing on it in the days and weeks to come.  There have been a couple of court cases, and two famous authors promoting euthanasia and assisted suicide - all of this in the UK and in a very short span of time.  The media is making a party of it - and there isn't much attempt to be evenhanded in the treatment of the issues.  There's a steamroller going full time across the pond, and our brothers and sisters in the disability movement are beginning to feel the rumblings.

For right now, disability activist Clair Lewis has written a good overview of recent events and what she sees coming at her.  Regular readers of this blog might remember an earlier essay of hers that was shared here last year titled "My life is unbearable - Don't fix it, just kill me."

Writing once again at Heresy Corner, Clair Lewis has written another important essay that should be heard above the voices of the affluent "advocates" who dominate the discussion of assisted suicide and euthanasia in the UK.  Below is the intro to "At the end of life's tether":

Two weeks ago I was utterly at the end of my tether, a wobbling mess of a person who was waking up every day wishing I hadn't. Disabled people do struggle - profoundly at times. I can't deny that, my own life proves it to be true. There are three people in my family with additional needs. One of them badly needs but doesn't have adequate social care provision, I can't find a member of care staff to get me out of bed most mornings who is willing to work for the allocated money in these circumstances. Life has become permanently stressful, draining every last spoonful of my energy, so I am now in constant pain, have daily migranes and keep falling asleep by accident. Then one of my girlfriends broke up with me - now the second long term partner I have lost citing 'my circumstances' as the reason. By anyone's standards I was having a pretty bad time. I felt like I was grasping hold of the last strand of my sanity.

So.. just like non disabled people do, I nipped down to my wonderful GP who said 'Oh you look VERY tense', I blubbed like a baby and came home with a fistful of antidepressants (again) having been told it's only to be expected with a life as difficult as mine. Thank goodness for his sensible approach.

In the UK this week, affluent writers like Terry Pratchett and Martin Amis are swamping the press with calls for death clinics (again!) for those with nothing else to worry about except their impairments, while those of us in poverty and lacking the services and resources we need know that should assisted suicide become legal here, people will end up being killed because of things which could be fixed.

But dying, with, or without the assistance of a death clinic or my family would not make this situation better, neither would killing one of my children. It would also not help me if when I had popped down the GP, I left with a Dignitas leaflet.

Please read the rest of the essay here. --Stephen Drake