Tuesday, July 21, 2009

President Obama’s Medicare Welcomes the Grim Reaper

The healthcare debate is raging.

It should.

But it’s not raging enough, if you ask me.

Think about it: Politicians voting on bills they admit they haven’t read (healthcare will be no different), and a President pushing a healthcare bill that, by his own admission, has provisions that he’s “not familiar with

No matter.

For President Obama, it’s all urgent, urgent, urgent. The time for talk is over. The time to act is now.

I suggest part of the urgency is a sleight of hand to enshrine the culture of death in law.

Why? Because bureaucratized death stalks the droning sea of its thousand-odd pages.

I’m referring, of course, to H.R. 3200, the “healthcare” bill, euphemistically described as a bill “To provide affordable, quality health care for all Americans and reduce the growth in health care spending, and for other purposes.”

George Orwell, wherever he is, must be very proud.

Like my President and many of our representatives, I haven’t read the entire 1,017 pages of the bill, but I did find a chilling section that we’d better talk about.


If we don’t, and this bill becomes law, people will die at the behest of the administration’s apparatchiks, the new foot soldiers of death by paperwork, decided in dingy government offices.

Cold, remote-controlled death. 8 to 5. In your best interests, of course.

Buried on pages 424-434 of the bill, in a section headed “Advance Care Planning Consultation” the first target are those covered by Medicare.

Pop quiz: Who are the people covered by Medicare in the US?

Answer: People over 65, people with disabilities, and specifically (more in Part II) patients with end-stage kidney disease and those with ALS (Lou Gehrig’s Disease).

Among the usual, pious explanations about advance care directives (living wills) and health proxies (someone to decide on your behalf if you are unable to do so) is the true intent: Killing off people who cost too much.

Now it’s not written that bluntly, but it’s there, nevertheless.

Side bar: Remember that the President is on record explicitly saying that decisions are going to be made about who gets care and who doesn’t, and that the elderly and disabled will just have to suck it up when they’re on the losing (sorry, cost-effective) end.

I’ll say more in Part II, but here’s a taste:

Citizens receiving Medicare (elderly, disabled, etc.) will be required to have a mandatory “Advance Care Planning Consultation” every 5 years. That’s if you are healthy but over 65. If your medical condition deteriorates, then these consultations will become more frequent.

These “consultations” will include advice on “the continuum of end-of-life services.”

Stay tuned – “end of life services,” as defined in the bill, will include withdrawal of “artificial” nourishment and hydration.

Just saying: Let’s assume you’re in a coma. Some desk jockey reads your file. (That is, when they’re not on their union-sanctioned lunch and other breaks). You can’t eat, you can’t drink. You are on “artificial” nourishment and hydration.

This costs money. Your quality of life is poor. Others, who have a better chance at a “quality of life,” will benefit more. Rules must be followed. The law must be obeyed. The checklist must be diligently filled out. Thumbs up, thumbs down. Gotta watch the clock. Five o’clock traffic is bad.

A final thought: There’s nothing explicit about assisted suicide being on the continuum of “end-of-life-services.”

BUT: Don’t forget, in Oregon and Washington, and, for now in Montana, assisted suicide is most certainly a state-sanctioned legal “end-of-life-service.” Ask Barbara Wagner, who was denied expensive meds to comfort her terminally ill condition, but whose state commissars offered to pay for a much cheaper alternative: The drugs that would help her to commit (legal) assisted suicide.

Stay tuned for Part II, especially if you have, or will have at some point in your life, involvement with Medicare.

Wednesday, July 15, 2009

UK: Might You Die Because You are Unable to Say You Want to Live?

There is no doubt that Baroness Campbell of Surbiton made the difference in a very important debate in the UK House of Lords last week.

Speaking in opposition to an amendment proposed by Lord Falconer, which sought to decriminalize the actions of people who help others commit suicide, the good Baroness delivered a compelling speech that was the main reason the amendment was defeated.

Baroness Campbell, born with a degenerative muscular condition, understood the implications of the amendment, which was generated by the intense reporting over the last few years of many UK citizens, who, accompanied by others, had travelled to Switzerland for assisted suicide at the Dignitas clinic (here, here, here, here).

Ahead of the debate, Baroness Campbell penned a persuasive public letter laying out her position. ISDB, along with a number of other US and UK disability advocacy organizations, was a signatory to the letter.

Last Sunday, Baroness Campbell detailed her struggles and her ultimate conviction that her life was worth living.

She also noted that in one hospital emergency, where she was unable to speak for herself, she was lucky to have had her husband Roger there to speak for her, because it was clear that the doctors were going to let her die, and had already agreed on a “do not resuscitate” order, ostensibly because of her poor quality if life.

I was horrified to learn that it was only after Roger showed the doctors a photograph of Baroness Campbell getting an honorary doctorate in law from Bristol University that they were persuaded that she did, indeed, have a good “quality of life.”

That’s what we’ve come to: Having to prove to our doctors that our lives are worth living, and therefore worth saving.

Is there still anyone who thinks that, had Roger not been at his wife’s side, that she would be giving an interview in her sunny garden last Sunday?

Is there still anyone who doesn’t think that among the many thousands of people with medical and other disabilities that turn up alone in UK hospitals in similar circumstances, that many are allowed or encouraged to die even if they want to live?

Thursday, July 9, 2009

ISDB Signatory to Baroness Campbell’s Letter Opposing Proposed UK Pro-Assisted Suicide Amendments

Last week, in London, a motion was introduced in the House of Lords to strike down legislation that allowed for the prosecution of anyone helping another commit suicide. The motion was introduced by Lord Falconer to protect those who travel with another person seeking assisted suicide in foreign countries, and who then risked prosecution when they returned to the UK.

The motion was defeated, in part, because disability advocates and organizations in the US and the UK, including ISDB, joined as signatories to an opposing letter written by Baroness Campbell, a member of the House of Lords who has a disability.

Open Letter from Leaders of Disabled People’s Movement in UK and USA

Dear Sir,

As leaders of the disabled people’s movement in the UK and the USA, we are extremely concerned about how the proposed amendment to the Coroners and Justice Bill will impact on the lives of disabled people.

If Lord Falconer’s amendment succeeds in the House of Lords on Tuesday 7 July then those who assist ‘terminally ill’ people to go abroad to end their lives in ‘suicide clinics’ would be immune from prosecution.

The phrase ‘terminally ill’ is not defined in the amendment, and could apply to people with a very wide range of chronic progressive illnesses some with life expectancy stretching to decades. Disabled people who experience progressive conditions understand far more than non-disabled people about what it is live with these pressures. We know what is acceptable as disease or disability progresses, and for the huge number of us who say no to assisted suicide, it is because we fear the changing culture such an amendment would bring. People without experience of disability, including our friends and families cannot predict what each stage of our personal journey will mean. Furthermore, financial and emotional conflicts of interest will always present an added burden to the situation. A law decriminalising assisted suicide would undoubtedly place disabled people under pressure to end their lives early to relieve the burden on relatives, carers or the state.

These concerns are not side issues that only affect disabled people. We are like society’s ‘canaries in the coalmine’ who can often see the dangers of potentially discriminatory legislation before others, as it impacts on us even before the deed is done. We are scared now; we will be terrified if assisted suicide becomes state-sanctioned.

The existing law, with the penalties it holds in reserve, causes potential assisters and those wishing to die, to think very carefully before acting. The discretion within the current law enables judges to exercise compassion in hard cases. What is not broken does not need fixing.

Disabled people have been largely silent in this debate which has been carried out in the media by clerics, non-disabled commentators and a small handful of individuals with terminal conditions who are supported by Dignity in Dying. Until people like us are present to engage in this highly complex and ethical debate, we must strongly oppose any device such as Lord Falconer’s amendment to get assisted dying in through the back door.

Baroness Campbell of Surbiton

Crossbench Peer

Liz Sayce, CEO, RADAR

Julie Newman, Chair, United Kingdom Disabled People’s Council (UKDPC)

David Morris, Chair of Independent Living Alternatives

Haqeeq Bostan, Director of New Disability Policy Forum

Diane Coleman, President, Not Dead Yet

Rachel Hurst, Disability Awareness in Action

Mike Smith, Chair, National Centre for Independent Living

Colin Revell, CEO, NeuroDiversity International (NDI)

Marilyn Golden, Disability Rights Education and Defense Fund (DREDF)

Alison Davis, National Coordinator, No Less Human

Dr. Mark Mostert, Director, Institute for the Study of Disabilities & Bioethics (ISDB)

Alice Maynard, Director, Future Inclusion

Linda Burnip, Executive Health and Safety Officer for Warwickshire and Coventry CDP

Liz Crow, Roaring Girl Productions

Stephen Drake, Research Analyst, Not Dead Yet

Adrian Whyatt, Chair, NeuroDiversity International (NDI)

Keith Armstrong, Historian, writer, musician and video maker

Dawn Willis, Activist/Trainer affiliated to RETHINK

Professor Colin Barnes, Centre for Disability Studies, University of Leeds

Louise Clifford, Daughter of Max Clifford

Leonard Zandrow, General Counsel, National Spinal Cord Injury Association

Ann Macfarlane OBE, Kingston CIL

Andrew Bruce, East Sussex CIL Development Worker

Tara Flood, Director, Alliance for Inclusive Education

Andrew Little, Director, Ahead Disability Equipment & Consultancy LLP

Alison Cater, Director, Ahead Disability Equipment & Consultancy LLP

Janice Ollerton, Disabilities Studies Researcher/Activist (Australia)

Joseph M. Camilleri, CHAIR, Kummissjoni Nazzjonali Persuni b'Dizabilità (Malta)

Julie McNamara, Activist / Director Crossings Theatre

Kate Nash, Not Dead Yet

Roxanne Homayoun, Direct Action Network

Dr Ju Gosling, Chair, Regard

John W. Smith, Coordinator Disabled Peoples Alliance, Northamptonshire

Kelly Buckland, Executive Director, National Council on Independent Living

Wednesday, July 8, 2009

Tolerance Ends, Animus Arises Where Disability Begins

Cyberspace has been alive with discussions of a hit piece written by the Huffington Post’s Erik Sean Nelson. Nelson used the now well-worn epithets of being retarded in commenting on Sarah Palin’s resignation as Alaska Governor last week.

The piece was pulled almost immediately, but not before several media watchdog groups had downloaded screen captures. Nelson swiftly offered an apology for what he wrote, but not for the way he thinks about people with disabilities.

I’ve decided to share the piece in it’s entirety because it reveals the palpable animus toward people with disabilities that’s alive and well in the US.

Penned as a “humorous” piece (it’s not), had this been written about almost any other group of people (take your pick: minorities, women, on and on) there would have been nothing less than a media firestorm that would have had the potential to wipe the Michael Jackson coverage from our TV screens.

However, Nelson is in good company. It wasn’t too long ago that Rep. Charlie Rangel (D-NY) repeatedly said, on the record, that Sarah Palin was retarded. And don’t let’s forget President Obama cheerfully noted that he bowls like a retard.

Just so that it’s clear: Palin is targeted in this way because Trig has Down Syndrome.

Funny, I don’t recall anything like this ever being said about a person in the Kennedy family who had mental retardation.

Here’s Nelson’s vitriol:

Palin Will Run in '12 on More Retardation Platform

In Sarah Palin's resignation announcement she complained about the treatment of her son Trig who always teaches her life lessons. She said that the "world needs more Trigs, not fewer." That's a presidential campaign promise we can all get behind. She will be the first politician to actually try to increase the population of retarded people. To me, it's kinda like saying the world needs more cancer patients because they teach us such personal lessons.

Her first act as President: To introduce a Pre-K lunch buffet that includes lead paint chips. Sort of a Large HEAD-START Program.

She will then encourage women to hold off on pregnancies until their 40's just to mix up some chromosomes.

She now is in favor of abortion only in case of diploid birth.

Her policies will increase jobs because Wal-Mart is building new stores each day and someone has to be the greeter.

This will lead to smaller government because fewer Americans will have the cognitive ability to hold a government job.

Look, she says she's resigning as governor because people are making attacks on her and Trig. If she ever did become president, all Osama bin Laden would have to do to defeat the United States is Photoshop a picture of Trig and she'd surrender the country that night. As she said, "That's not politics as usual." It isn't. Politicians don't usually quit for so stupid of reasons.

I’m sure you’re all laughing your heads off.

A final thought: A raft of disability advocacy groups have been stunningly silent on this issue. They get their alerts, they read the blogs every day, and are lightning quick to defend against the kind of bigotry that Nelson showed.

They’ve been AWOL here.

Why? Do they believe that for Sarah Palin and her son Trig this kind of nastiness is OK?