Thursday, December 18, 2008

Down Syndrome in Aussie: Get it Early, Get it All

Well, well.

Sibling rivalry in the old Empire has just been raised a notch.

The Brits are hell-bent on assisted suicide show-and-tell. Some Scots are proposing legislation to make available assisted suicide for children. Baroness Warnock charges around the isle hooting about “putting people down.”

Not to be outdone, the Aussies are falling over themselves to do us all a favor and rid their corner of the planet of those pesky people with Down syndrome.

It was the Aussie government, you’ll recall, that refused Dr. Bernard Moeller a permanent residence visa because his son. Lukas, has DS. Those DS kids cost the heath care system lots of money, you know. The powers that be eventually backtracked, but only after a public furor.

I’ll guarantee there won’t be a similar outcry over their latest proposal of eugenic discrimination.

Same syndrome, different tactic.

Problem: Once there are Aussies with DS walking around, they are somewhat protected, even if only by public outrage.


Change tactics: Get ‘em really early. 

Sorry, sorry!! I mean the Aussies are proposing a “National Screening Policy for Down Syndrome.”

The get -‘em-early policy is to institute universal in-utero screening  for DS. That way, DS can be destroyed before seeing the light of day.

Think of it. Proposals for an official, legal, government policy to eradicate people who are genetically different.

Nothing more, nothing less.

It’s 1930s Nazi Germany all over again. Trust me.

Wednesday, December 10, 2008

The Scots: Let’s Allow Assisted Suicide For CHILDREN

It’s coming thick and fast now, folks.

Killing people, that is, especially in the UK

If you’re going to be an overachieving country, it might as well be in the realm of assisted suicide.

Dan James. Valerie Grosvenor Myer.

And tonight’s Sky Real Lives channel airing of the filmed assisted suicide of Craig Ewert.

Remember, in all these cases, part of the pro-killing argument was that it wasn’t the act of assisted suicide that was bad; it was those pesky laws in the UK that prevented it.

So, aided and abetted by the largely uncritical media, the clarion call came from the seat of the former Empire: We need to change the law.

Not wanting to be seen as retrograde neanderthals to their English cousins, the Scots have stepped in to take the lead.

Scotland’s The Herald reports today that a Scottish MP, Margo MacDonald, is planning to introduce legislation that would legalize assisted suicide for children.

No, I’m not kidding. Wish I were.

Here’s MacDonald’s rationale: In Scotland, when parents divorce, and the children are 12 or older, the court takes into consideration the child’s choice as to which parent they wish to live with. Under some circumstances, the living choice is offered to younger children.

So, goes MacDonald, why not give the same legal status for choices about living or dying?

Get a load of the proposed legislation’s slimy rationale:

The outlined proposal would allow patients with degenerative, irreversible conditions to approach a doctor who would be specially registered to help terminate life at the patient's request.

OK, that’s standard let’s-kill-you-when-you-have-a-bad-disease language.

But, listen to this:

Assisted suicide would also be possible for patients who unexpectedly became incapacitated to an "intolerable" degree, or who simply find their life "intolerable" - although the latter case would require the doctor to seek a second opinion from another health professional.

So, now, if you think any “incapacitation” you have is a drag, or even if you think your life is just yucky, you have a way out. Remember, because we don't want to be too hasty, for this aspect of the legislation you’ll have to find not one, but two doctors who agree you should be done in. (Shouldn’t be difficult with a little doctor-shopping for medicos who share the pro-killing view of the world).

And now, potentially, in Scotland, you don’t even have to wait until you’re legally an adult.

Children have rights too, you know.

Tuesday, December 9, 2008

The New Reality TV: Assisted Suicide is "Love"

Well Jack Kervorkian must be proud, as must the 58% of Washingtonians that celebrated their win in making assisted suicide legal in their state barely a month ago.

You’ll recall that Kervorkian started a trend in making suicide a living room experience when he filmed killing Thomas Youk in 1998, and paraded the grisly deed on CBS’ 60 Minutes a few weeks later.

It’s baaack!!

Britain’s newspapers are all abuzz today over the planned screening on the Sky Real Lives channel tomorrow night of the documentary Right To Die - The Suicide Tourist, which shows, in part, the assisted suicide of 59 year-old Craig Ewert.

Ewert, from Britain, was diagnosed with motor neuron disease a while back and given a few years to live. The disease progressed fairly quickly to where he was confined to a wheelchair. 

(Sidebar, my good friend in South Africa, Tony, who also has motor neuron disease, and is in much worse shape than Ewert was, has a vastly different opinion than Ewert).

No worries, mate, Switzerland’s Dignitas can help. For a £3000 fee, of course.

Ewert made the decision to end his life before he was in a position where he couldn’t kill himself. As he put it:

Once I become completely paralysed then I am nothing more than a living tomb that takes in nutrients through a tube in the stomach - it's painful. . . . Let's face it, when you're completely paralysed and cannot talk how do you let somebody know you are suffering?

To avoid this difficult situation, he travelled to Switzerland accompanied by his wife.  (Assisted suicide is illegal in Britain). The documentary shows Ewert, his wife at his side, drinking a fatal dose of drugs and using his lips to press the button (helpfully held to his lips by his loving wife) that stopped his ventilator.

He was dead in less than an hour. Just ike that.

Two points among many, if I may:

One: All the buzz is about Ewert’s suicide on TV, there, for all to see, rather than the act of suicide itself, which the British media regularly, and fawningly, presents as a perfectly reasonable thing for people to do. Methinks they protesteth too much.

Two: As with the Dan James case a few weeks ago (courtesy of the same diligent, deadly, Dignitas) the spin of the media is this:

What a shame that this poor man had to kill himself so far from his home and the comfort of his surroundings, without his whole loving family by his side to hold his hand and hug him as he slipped away from his pain and torment. What kind of barbaric society is Britain that it still has laws outlawing this ultimate act of loving sacrifice?

Bad, bad, naughty law. Needs to be changed.

OK, maybe it’s just me, but we’ve obviously moved to seeing assisted suicide as a good thing, and laws and people that oppose it as those nasty intolerants.

Interesting, very interesting.

Wednesday, December 3, 2008

The UN Advocates for the Disabled, The US Should Do The Same

Today is the International Day of Persons with Disabilities celebrating the UN Convention on the Rights of Persons with Disabilities.

The Convention and its Optional Protocol were adopted in late 2006 as a treaty whose provisions are considered binding on the member countries who sign it.

The Convention recognizes the plight of the world’s 650 million people with disabilities and is designed to level the playing field so that they, irrespective of their geographical location, might take their rightful place in mainstream society.

So far, 136 of the world’s 192 countries have signed on.

It would be nice if the US signed on—soon.

Why the US hasn’t signed on is pretty much a mystery to most people, especially because the Convention was partially inspired by the Americans with Disabilities Act and complements ADA quite well.

In the developed world, social and legal recognition of people with disabilities is far advanced.

Even so, major blind spots abound.            

One: In the two-year run-up to last month’s US elections, people with disabilities were deeply frustrated that they, the largest minority group in the country, were ignored on the national stage. Ironically, when Republican VP nominee Sarah Palin, the mother and aunt of children with disabilities, finally broke the national silence, her advocacy potential was quickly overwhelmed by partisan astonishment that someone other than a Democrat had the temerity to acknowledge people with disabilities. Hence, a potentiality powerful moment of behalf of disability issues was wasted.

Two: Other less visible, but no less important problems for people with disabilities exist. In-utero genetic testing already detects scores of anomalies that result in some form of disability discrimination. Given powerful social pressures for conformity and perfection, many pregnancies revealing genetic irregularity are routinely terminated.

Three: People with disabilities are becoming increasingly vulnerable to the growing utilitarian nature of medical care. Facing the reality of a large disconnect between available resources and patients’ expensive treatment needs, people with disabilities are likely to be among the first victims who will be pressured or made to succumb to euthanasia, an idea that is rapidly gaining in acceptance - both here and abroad.

Celebrating the Convention today reaffirms our commitment to fundamental principles of dignity and justice and to ensure that the Convention becomes more than a paper tiger.

Let’s encourage our elected representatives in Congress to consider signing the Convention, not only as an acknowledgement of the needs and rights of Americans with disabilities, but also as an exemplar of US leadership on behalf of the world’s 650 million disabled.

Monday, December 1, 2008

Killing as a Joyful Duty, Part I

The Brits are providing more sympathetic pro-killing stories than many of us can keep up with.

Enter Valerie and Michael Grosvenor Myer, a pretty average couple, apparently.

A chance meeting 52 years ago soon lead to marriage. He became a teacher, and later devoted his energies to being a freelance theatre critic and a folk singer. She, linked to a prominent and wealthy family, engaged in literary pursuits. Valerie and Michael “shared a love of the theatre and literature, particularly Jane Austen and Shakespeare.”

Fast-forward to 1998: Valerie was diagnosed with Parkinson’s disease. Chronically degenerative, to be sure, but not a terminal illness.

Valerie’s health got worse, and she began talking of suicide three or four years ago. She tried several times, including a failed attempt in 2005 that left her comatose.

It was the 2005 episode that helped Valerie and Michael set the stage for her eventual death last year. In 2005, Michael, realizing Valerie was comatose, and not dead as planned, panicked and called for help. Here’s what Michael told London’s Telegraph last Saturday:

One of the paramedics said very meaningfully to me: 'It's as well you phoned us as soon as you could or you might have found yourself on a manslaughter charge'. So he obviously knew what the score was and was giving me a hint to be careful."

So now they knew. The next time Valerie decided to kill herself, Michael couldn’t be around because it’s illegal to aid and abet suicide in the UK.

Since 2005, their stiff British upper lips firmly in place, Valerie and Michael dispassionately talked about what needed to happen when she decided to do herself in.

One of their primary concerns was that Michael not be around when Valerie died.

He wasn’t.

Valerie took the fatal dose, shooed him out of the house as if he was late for work, and off Michael went. To the university library:

So, after a day's work at the library, I had dinner at the university centre. I was reading a very interesting article in The New Yorker about the British political situation. And I was thinking: 'I must tell Valerie about this'. Then I thought: 'You great booby. You will never tell her about anything ever again – if she has managed to do it properly this time.'

I’m not making this up.

Is it just me, or is this a macabre truth that trumps most people’s worst nightmares?

Ever fans of death, the Telegraph called it “poignant story.”

I had a different take: Coldblooded. Chilling. Empty.

Stay tuned for Part II. 

Monday, November 24, 2008

Prediction: Webcam Suicide will Become Part of Pro-Death Spin

According to his sister, 19-year-old Abraham Biggs, despite his bipolar disorder, liked striking up friendly conversations with service people and always looked forward to taking his nieces to Chuck E. Cheese.

Abraham took time off from being a Broward College student last Wednesday.

To kill himself.

Live on the web - death via webcam.

Log on. Adjust the camera. Swallow pills. Lie down.


Abraham executed himself in front of an audience of thousands, who commented, chat-room style, while it was happening.

Some viewers were skeptical. Others joined in merrily in what they thought was a prank.

A few were perceptive enough to get it, and chimed in, trying to dissuade Abraham from what he was doing. A couple of these viewers finally contacted the site moderator.

The cold eye of the webcam ran live for 12 hours, showing, at the end, police entering the room and finally switching the camera off.

Sadly, this isn’t the first time that suicide via webcam as happened. Some would argue that it’s simply a digital age way of committing suicide in public, just like jumping off a bridge or building.

Hardly the point, is it?

Bipolar disorder is a significant psychological disability. There’s little doubt that it had an impact in Abraham’s suicide. Published excerpts from his suicide note show that he was clearly depressed, feeling helpless, and bereft of personal worth.

Here’s the caution I’d offer based on Abraham’s suicide:

In the Netherlands, people like Abraham don’t need to die alone on webcam. They can go to their doctor and report that their psychological disability means that they have no hope of any kind of future quality of life.

Under Dutch law, they can request assisted suicide or euthanasia. There are few constraints on Dutch physicians if they agree with the patient’s perceptions.

Ask, and you shall receive.

In the Netherlands, I have no doubt that physicians would have judged Abraham a perfect candidate for assisted suicide or euthanasia.

Here’s a prediction: The pro-death lobby will use Abraham’s suicide to show why we need legal assisted suicide and euthanasia in the US. That way, people like Abraham won’t have to die alone, watched by strangers.

If assisted suicide and euthanasia were legal (so they’ll say), Abraham could have committed suicide surrounded by his loved ones, in comfort, and with happy memories as he fades from this earth.

Death with dignity, you see.


Thursday, November 20, 2008

Speaking out Against the Pressure of Being Required to Die

Well, it didn’t take long in Britain.

It’s already a fact of life in the Netherlands.

Feeling that if you have a disability you should somehow feel guilty for not wanting to do yourself in, that is.

Good for Sue Garner-Jones. We need more people with disabilities like her to speak out, to join her and my friend Tony.

We, and they, need to speak out very, very loudly.

For 34 years, following an accident, Sue has been in a wheelchair, pretty much paralyzed from the neck down with only very limited use of her hands. She receives 24/7 care from her 72 year-old mother.

She’s done pretty well along the way. Sue has a PhD, is a part-time lecturer at Liverpool University, and helps out in her community by tutoring school children in English.

She’d had enough after reading about all the fawning press accounts of the assisted suicide of Daniel James. Dan, you’ll recall, was taken by his parents to Switzerland from England where the Swiss assisted suicide Nazis, Dignitas, were happy to help kill him.

Here’s part of what Sue said:

People make their own decisions about how to live their life. But there’s a lot of talk about bravery and courage for people who were opting out of living their lives. I didn’t like the inverse of that. To call this action ‘brave’, ‘courageous’ and ‘selfless’ implies that those of us who battle on are ‘cowardly’ and ‘selfish’, which is unfair and untrue.

Great point, Sue, but that’s what it’s soon coming to in the formerly glorious seat of Empire.

But it’s hardly news, unfortunately.

In the Netherlands, many elderly people carry identification or wear bracelets that read if I am hospitalized, do not euthanize me or I do not request assisted suicide. Not that it means much. There’s very strong evidence that each year in the Netherlands hundreds of people are snuffed out anyway, even if they have never talked about, considered, or requested assistance in dying.

In a nutshell, many people in the Netherlands feel the seeping pressure to get on with it and die – as a community service, of course. Now it's Britain's turn.

Have a disability? Choose "a loving, dignified, and easy death" – or else.

Can the US be far behind?

If you read this blog, you already know the answer.

Wednesday, November 5, 2008

In Washington State, The Doctors of Death Await

Well, Washington state’s ballot initiative allowing assisted suicide, I-1000, passed by a wide margin yesterday.

What that means is that we now have two states in the US (Washington and Oregon) that think it’s ok to allow assisted suicide.

First and foremost this will mean, automatically and unequivocally, that people considering suicide now have the imprimatur of the state to be helped in killing themselves.

Don’t worry, advocates say, it’s nothing nefarious, just the state being compassionate towards those who are suffering and who want to maintain their “autonomy” to end their lives at a time of their choosing.

And, of course, don’t worry, there’s no slippery slope.

Sounds almost reasonable.

But here’s what the pro-death crowd don’t want you to know:

This is how things started in the Netherlands – compassion, dignity, and all. No slippery slope? In a very few short years, the Netherlands moved from euthanasia for a very, very few under very specific circumstances, to now being a country where euthanasia and assisted suicide are available for almost everyone for almost any reason.

Many elderly Dutch people now fear being admitted to a hospital, and with good reason: Holland now routinely euthanizes people who never even asked for euthanasia or wanted to die. Many elderly people in the Netherlands feel that their culture of death puts a lot of pressure on them to assume a duty to die - whether they want to or not.

Here’s another thing the pro-death crowd doesn’t want to get out:

In Oregon, there are widespread gaps in accountability. For example:

Records of assisted suicides are officially destroyed annually.

The only accountability in reporting and tracking assisted suicides comes from the very doctors who are complicit in the death-making. 

On this second point, it seems to me that trusting doctors to faithfully report each and every assisted suicide, or where such procedures went wrong or are abused, is tantamount to having required guards at Birkenau to alert their superiors when murdering Jews didn’t proceed too smoothly.

Too harsh?

If you think so, please answer this question:

Why, in the first place, are physicians ever involved in killing people?

Friday, October 31, 2008

Australian Government to Residents with Down Syndrome: Get Out, You Cost Too Much

It’s spreading like wildfire. Every continent, almost every country.

Discrimination against people with Down Syndrome, that is.

If you don’t think we’re back to Useless Eaters, you’re wrong.

Just plain old wrong.

Useless Eaters is the term the Nazis used for people who were in some way disabled and who therefore couldn’t contribute to the economy. If you consume more resources than you can produce, we need to dispose of you. Just an economic decision, that’s all. Nothing personal, you understand, it’s just that we need to use our finite resources for people who will produce. 

You are using too many of our resources. You are not producing. Goodbye.

Now, eugenic discrimination against people with Down Syndrome is hardly new. We already terminate the vast majority of pregnancies where the genetic disorder is discovered. In that regard, I predict that we’ll soon move on to openly eugenic euthanasia for those who are genetically different and inconveniently alive.

Here’s the latest in Governments Gone Wild:

German-born Dr. Bernard Moeller lives with his family in Australia on a temporary resident visa. He helps reduce the government-acknowledged shortage of physicians. He’s applied for permanent residency.

No can do. Sorry.


Because his 13-year old son, Lukas, has Down Syndrome.

I kid you not.

Here’s what Australia’s reported:

. . .the Immigration Department has rejected his application for permanent residency because his youngest son, Lukas, 13, does not meet the health requirement.

Health requirement? Not sure what this apparatchik euphemism means?

Here’s what it means:

The Immigration Department wrote to Dr Moeller saying his son had been assessed as a burden on Australian taxpayers and could not be granted permanent residency . . . . A copy of the decision said care for Lukas was "likely to result in significant costs to the Australian community in health care and community services".

Not only is this nakedly eugenic, it’s official, government-sanctioned eugenics.

If you have a disability, you are a burden to the government and to society.

If you have a disability, you are not welcome here.

If you have a disability you cost too much.

If you have a disability go away.

It’s a very short skip from this line of thinking to the Australian versions of Brandenburg, Sonnerstein, Bernburg, Hadamar, Grafeneck, and Hartheim, institutions which cared for people with disabilities and which were turned into the first gas chambers the Nazis ever used.

Australians with disabilities need to be afraid – very afraid. Their government is coming after them using the exact same logic as did the Nazis.

1930s: German useless eaters.

2008: Australian useless eaters.

Coming soon to a country near you.

Monday, October 27, 2008

Eugenic Researchers, Genetic Testing, and Eugenic Discrimination

Yesterday’s Washington Post ran a story that should give us great pause.

The piece reported on advances in genetic testing that make it easier to detect many more anomalies at earlier stages of pregnancy. I think we should be very aware that a primary aim of genetic testing is eugenic.

First, what the tests mean in the real world: Medical tests, including all genetic tests, are not perfect. 

At the level of the family, what this means is that for a percentage of those tested, the results will be wrong. That is, a percentage of terminations will be of children who actually do not have Down Syndrome, or any other genetic defect, for that matter.

Second, what the tests mean at a societal level: Genetic in-utero testing unambiguously seeks to separate the genetically normal from the genetically defective. As the tests become more sophisticated, more subtle genetic differences will become apparent.

That means, inevitably, that we will increasingly separate a larger and larger group of people into a variety of genetically defective categories. Furthermore, the genetically different will be increasingly segregated, in whatever way, from those who are genetically similar.

Genetic discrimination. Genetic segregation. For more pregnant mothers, destruction of their pregnancies based on genetic makeup, nothing more, nothing less.

It’s already happening.

Example: Genetic discrimination of Down Syndrome children. The vast majority of Down Syndrome pregnancies are terminated, exclusively and only because they are (a) genetically different, and (b) because that difference is overwhelmingly seen as negative and undesirable. Parents are heavily, and routinely, pressured to terminate the pregnancy. There’s very little evidence that the doom and gloom is balanced by other realistic, but not necessarily negative information. 

Who are the people making the case for genetic difference being negative, undesirable, and therefore worthy or termination?

Why, the medical professionals and genetic researchers of course.

Enter Arthur L. Beaudet, of Baylor's Department of Molecular and Human Genetics, who opined in the Post article that these tests are “ready for prime time:”

For people who want the best possible prenatal diagnosis and want the maximum information, this is the best option.

Here’s what we can be sure of: What Beaudet is saying is that these tests provide the most accurate test for rooting out genetic anomalies.

Because that’s exactly what they want to do – get rid of the genetically different.

Don’t believe me? Listen to the good Dr. Beaudet:

Some of these disorders are quite burdensome. They require lifelong nursing care. In some cases these children never walk, never talk, never feed themselves . . . It can have a major impact on the family. People say, 'I wish you had given me the opportunity to know ahead of time. It's really destroyed our lives.' That's why women want to know.

This is a nakedly eugenic position.

Not even a show of pretense.

If you are genetically different, then you are a burden. Your quality of life will be bad. Your family will have to deal with you, what a hassle. You will have destroyed your family’s lives by you, yourself, being alive.

The good doctor is, I’m sure a distinguished professional in his field. Here’s a list of some other people distinguished in their fields, who thought eugenics was just fine:

Helen Keller, Alfred Nobel, Margaret Sanger, Adolf Hitler, Alexander Graham Bell, Woodrow Wilson, H. G. Wells, Winston Churchill, George Bernard Shaw.

Just to name a few. 

Ah, the Brave New World. I can’t wait . . .

Friday, October 24, 2008

Palin Makes Disability a Very Public National Issue

Well, well, well.

Pittsburgh. This morning, 9 a.m.

VP nominee Sarah Palin finally focused on advocating for people with disabilities. Better late than never.

Palin pledged to make disability advocacy a top priority should she be elected, noting that, in many ways, people with disabilities in the US were still isolated, segregated, and subject to negative bias.

Palin addressed disability issues across the lifespan, from early intervention to providing support for adults with disabilities.

She detailed three specific areas of advocacy:  (a) efforts to reform and refocus current laws and support for people with disabilities, (b) educational choice, and (c) fully funding IDEA and increasing early intervention research and support.

While politicians--all politicians--say many things to get elected and then change their tune once in office, nobody has any idea whether Palin will be the same, no matter what they might predict.

However, I’m not aware of anyone who understands disability issues who could possibly disagree with what she proposed – at least I hope that’s the case.

Because the last time Palin spoke nationally about disability (in her acceptance speech at the Republican convention) her advocacy efforts quickly deteriorated into a (sometimes very nasty) partisan debate, with her critics, many of them within the disability community, deriding her views.

As if one segment of the population has a lock on what disability issues are or should mean.

As if belonging to one party means that you can speak about disability, but if you belong to another you should just shut up.

As if you can only speak about disability when your Down syndrome child is 10 years old so that you’ve had many years to learn about the intricacies of these and other disability issues.

I’m not hopeful, but we’ll know by Monday.

Trust me, we’ll know.

One way or the other.

Monday, October 20, 2008

When Parents Think It’s OK To Help Kill Their Grown Children

Things in the UK are spinning out of control. Fast.

There’s something fundamentally wrong, and chilling, when parents think it’s ok to help their children die. It then reaches the realm of insanity when they’re willing to chatter on about it as if they should be up for some kind of humanitarian award.

Hard on the heels of multiple sclerosis sufferer Debbie Purdy petitioning Britain’s highest court to let her legally die via assisted suicide, the parents of Dan James have made the media rounds trumpeting their "compassionate" actions that facilitated their son being killed.

But, I’m getting ahead of myself.

Dan James had a lot to live for. At 23, he was a star junior international rugby player. By all accounts he was intelligent, funny, quirky, and in the prime of his youth.

In March 2007, he suffered a severe neck injury in a rugby training session and was left paralyzed from the chest down.  He underwent several operations and spent eight months in a rehabilitation hospital before returning to his parents’ home.

Early in September this year, Dan died in Switzerland at an apartment run by the Swiss pro-death organization Dignitas.

Sidebar on Dignitas: They’ve been kicked out of at least one apartment when it became known that they were using the apartment to kill people. Undeterred, for a while they moved their operation to parking lots. 

Assisted suicide in the back of a car.


Anyway, it was Dan’s parents who took him to Switzerland to die.

At 23.

Without a terminal illness.

Without, as far as I can tell, him being in excruciating and unbearable pain.

And they’re so proud of it, by golly.

Here’s what Dan’s mother, Julie, had to say in a piece in London’s Times, under the heading of “Why my son had the right to die”

Three weeks ago our son was at last allowed his wish of a dignified death in the Dignitas apartment in Zurich . . . He couldn't walk, had no hand function, but constant pain in all of his fingers. He was incontinent, suffered uncontrollable spasms in his legs and upper body and needed 24-hour care.

Dan had tried to commit suicide three times but this was unsuccessful due to his disability. His only other option was to starve himself.

Whilst not everyone in Dan’s situation would find it as unbearable as Dan, what right does any human being have to tell any other that they have to live such a life, filled with terror, discomfort and indignity, what right does one person who chooses to live with a particular illness or disability have to tell another that that they should have to.

A social worker in Britain alerted authorities to what had happened.

Julie James was not amused, observing that:

This person had never met Dan before or after his accident and obviously gave no consideration for our younger daughters who had seen their big brother suffer so much, and the day before had to say goodbye to him”

I hope that one day I will get the chance to speak to this lady and ask if she had a son, daughter, father, mother, who could not walk, had no hand function, was incontinent, and relied upon 24-hour care for every basic need and they had asked her for support, what would she have done?!

Perhaps it’s just me, but seeing death as the only option in these circumstances seems more self-serving than compassionate.

Julie James’ comments raise a host of concerns.

One: The culture of death is so entrenched in Britain that deathspeak flows naturally from ordinary citizens’ mouths: “right to die,” dignified death,” “unbearable” living, “a life filled with terror, discomfort and indignity.”

Two: The “you can’t judge me” argument. Really? Why not? Afraid some people might actually think taking your son to his death might be, heaven help us, wrong?

Three: The brutal finality of what they did, as if there were no other options. What Julie James was really saying was “Well, Dan just had to die because he wasn’t what he used to be. That’s how it should be, you know.”

Four: Earth to Mark and Julie James: There were tons of other options, beginning with the fact that in rehab he’d gotten a little movement back in his fingers. Dan’s hopelessness was understandable, but not inevitable. Nobody bothered, as far as I can tell, to establish, let alone treat, his obvious depression. The options go on and on.

Last two observations:

Maybe the saddest point of all: Had Dan had other parents, he might be with us today. Still funny, still intelligent, still quirky. Still enjoying the love and care of his family and friends.

 The most macabre point of all? 

I’m sure Dan’s two young sisters will live the rest of their lives knowing that if they ever end up like Dan, mom and dad will be waiting in the wings . . . .

Wednesday, October 15, 2008

The Baroness Who Thinks People are Animals

For people who aren’t sure what all this “Culture of Death” talk means, let me share a little of what’s happening in Britain right now.

Meet Baroness Mary Warnock.

She’s a prominent British public figure who says things that sound quite outlandish. If you were a casual observer, there’s a good chance that you’d dismiss her as pretty nutty.

Big mistake.

Baroness W says what she means, and she means what she says. There’s a big chunk of the population, in Britain and elsewhere, who think she’s spot-on.

Here’s some background: Baroness W is a former headmistress, commission chair, and perfectly sane woman.

Her passion is undeniable.

Her ideas are dangerous.

She’s always had a pro-death outlook. Years ago, after initially coming out against euthanasia, she changed her mind, supposedly because she saw the benefit of euthanasia after the family doctor euthanized her husband.


Let’s also remember that this is the same Lady Warnock who, a while back, made the case for parents paying for their infants’ care, including for life support equipment, if those infants were judged as having little to no chance of leading healthy lives.

Several weeks ago, Lady W was at it again.

Here are some gems reported in the Times of London:

"I'm absolutely, fully in agreement with the argument that if pain is insufferable, then someone should be given help to die, but I feel there's a wider argument that if somebody absolutely, desperately wants to die because they're a burden to their family, or the state, then I think they too should be allowed to die.

"Actually I've just written an article called 'A Duty to Die?' for a Norwegian periodical. I wrote it really suggesting that there's nothing wrong with feeling you ought to do so for the sake of others as well as yourself."

"I think that's the way the future will go, putting it rather brutally, you'd be licensing people to put others down."

Just to review, Lady Warnock believes the following groups should be candidates for assisted suicide or euthanasia, or to use her chilling term for being “put down:”

(a) people experiencing insufferable pain

(b) those who absolutely want to die because they’re a burden to their family or the state, and

(c) those who feel they ought to die for their sake and for the sake of others.

This is a very large group of people identified by sweeping, undefined, and deliberately vague criteria.

Watch out, Put-Them-Down-Mary might be after someone you know.

Monday, October 6, 2008

United Airlines Clueless About Disability – That Needs to Change - Yesterday

Some readers of this blog know that my wife, Deborah, has a severe hearing impairment – both ears. Deborah wears state-of-the-art hearing aids that are only somewhat helpful.

Unless you speak to her head-on, and then fairly slowly and clearly, the chances of her understanding what you are saying the first time around are negligible. Forget trying to be understood by yelling something from the next room.

My wife handles her disability with an extraordinary graciousness and patience, although that’s not to say she doesn’t often get frustrated and even angry at her hearing-befuddled state.

Deb’s one wish for the afterlife is that she will finally be able to hear like the rest of us--I don’t think that’s too much to ask.

Travelling with a severe hearing impairment is obviously a challenge.

I have always encouraged my wife, when booking an air ticket on-line, to specify in the box provided that yes, she does have a disability, that she’s deaf, and yes, she does need assistance at the airport. (Most of us have trouble understanding airport and airline announcements, you can imagine that for her it’s a nonstarter).

So, enter United Airlines.

Last week my wife turned up at the United counter in Norfolk, Virginia, to check in for her flight.

United Airlines employee: Says here you have a disability. Do you need assistance?

Deb: Yes, I’m deaf.

Puzzled silence.

United Airlines employee (somewhat sullenly): Do you need assistance?

Deb: Yes, I have a severe hearing impairment.

United Airlines employee (now a little irritated): Do you need assistance?

Deb (sighing): Yes, it’s very difficult for me to hear anything. . .

United Airlines employee (obviously ready to move on): Do you need a wheelchair?

Enough said.

My cynical answer would have been “Yes, I most certainly do need a wheelchair, the hearing in both my ankles is not what it used to be.”

If this is the level of disability awareness in the corporate world, we have so much work to do that I don’t know where to begin.

Perhaps I could begin by reminding United that the Americans with Disabilities Act requires reasonable accommodation for people with disabilities, and that being close to completely deaf certainly makes Deb a person with a disability.

Earth to United: Here’s what your employee should have said:

“Ok, it says here that you’re deaf. What can we do to help you? How about you stay as close to the counter as possible, and whenever there’s an announcement, either come over to me, or I’ll come to you, and tell you what we said.”

Nah, too complicated.

Much easier to offer the wheelchair.


Monday, September 29, 2008

The Medical Profession’s Charlie Rangel: Dr. Jacques Abramowicz on Down Syndrome

Sometimes it would be better if people in the medical profession, in their own best interests, just made a good decision to keep their mouth shut, however well intentioned their comments.

A major piece on Down Syndrome in yesterday’s Chicago Tribune reported on the push by advocates for people with DS to get out the word that a DS diagnosis isn’t some kind of ghastly living death sentence.

Why should this be necessary?

Because the overwhelming majority of DS diagnoses result in termination of the pregnancy. While hard figures vary a bit, terminations are somewhere around 85-90% of those diagnosed.

Because there is evidence that in most cases, medical counseling post-diagnosis is overwhelmingly negative. While hard evidence is fairly sparse, parents of children with DS report strong medical bias against birthing the DS child.

It’s a fair bet that most expectant parents aren’t up on what DS is or what it means when they receive the DS news. What they most need is a realistic and balanced picture.

The usually don’t get that. They’re much more likely to get the awful without the good. No wonder most elect termination.

Want some proof of how many in the medical community perceive DS?

Here’s Dr. Foot-in-my-mouth as quoted in the Tribune story:

. . . some doctors, including Dr. Jacques Abramowicz, co-director of fetal and neonatal medicine at Rush University Medical Center, caution against providing a picture of the disorder that is "too rosy."

"Whenever something like this is in the media, there is the tendency to make it appear much more beautiful than it is in reality," Abramowicz said. . .

"It is extremely difficult to have a baby with Down syndrome," he said.

Where to start?

First, it’s refreshing to see that MDs can be ignorant, too.

Second: Nobody’s asking for a “rosy” prognosis. How about we begin with balanced, shall we?

Three: OK, Dr. Abramowicz thinks the reality of DS is not as “beautiful” as supposedly portrayed in the media. Well, if anything, it’s this kind of patronizing pabulum that deceives people into believing that those with DS are the walking dead.

Four: Difficult having a baby with DS? 

Oh, yes, I see. 

Have a kid with DS = a very difficult life. 

Have a kid without DS = a wonderful, carefree life.

Yeah, right.

Wednesday, September 24, 2008

Dolts x 2: Charlie Rangel and Saturday Night Live

Two events in the last few days make it clear that we have a lot of work to do in educating people, even very prominent and powerful people, who should know better, about disability issues.

First, Representative Charles Rangel (NY), in an interview with a New York radio station called Sarah Palin disabled:

"Why are the Democrats so afraid of Palin and her popularity?”

"You got to be kind to the disabled," Rangel said.

CBS 2 HD: "You got to be kind to the disabled?"

Rangel: "Yes."

CBS 2 HD: "She's disabled?"

Rangel: "There's no question about it politically. It's a nightmare to think that a person's foreign policy is based on their ability to look at Russia from where they live."

Third time lucky, I suppose.

I don’t know if Rangel just slipped up or if he really meant that Palin was disabled. (He later backtracked quite a bit).

However, what bothers me is that even if he meant to use the term disabled to describe Palin’s lack of foreign policy knowledge, he meant it as an epithet denoting inferiority.

Ergo, disabled means inferior.

Rangel never took that part back.

Rangel made it even worse by observing that we need to be kind to disabled people.

Good move, Charlie: We should look upon “disabled people” benevolently, give them a good-natured pat on the head, and send them off to wherever these curiosities are housed. And, all the while, of course, congratulating ourselves on how kind and sensitive we are to “the disabled.”

How utterly, excruciatingly, patronizing.

Second, was the Saturday Night Live skit about disability that insulted the disability community for cheap laughs and ratings. I’m happy to report that the audience obviously was more sensitive than the writers, as the skit pretty much bombed.

Nevertheless, the skit made the point that Trig had Down Syndrome because of Todd Palin’s incestuous relations with his daughters.

Yeah, real funny.

Here’s what SNL really said to the largest US minority, albeit tongue in cheek:

You are disabled because your parents are perverts.

So much for having come so far in recognizing the rights and inclusion of Americans with disabilities.

Friday, September 19, 2008

Disability as Death Sentence in Nepal

I’ve talked before about cultural aspects of disability.

Some cultures view disability as just another characteristic on the continuum of human diversity. Other cultures, unfortunately, view any form of disability as negative and something to be avoided.

I’ve also addressed the idea that for many people with disabilities, where they happen to live can often be the difference between getting all kinds of help and advocacy and other places where, exclusively because of their disability, they are ignored, oppressed, abused, and yes, even killed.

The grim list of horrors is almost endless.

When cultural prejudice and a hostile geographical location intersect, having a disability can be a death sentence.

Like in Nepal.

Nepalese with disabilities are below the bottom of the social pecking order. They are abused, ostracized, neglected, segregated.

I could try to tell you their story, but, instead, want you to listen to the story of Ramah, and others, whose existence literally depends on the kindness of strangers.

Deborah Strong works in Nepal. She lives in Katmandu. She moves among Nepal’s citizens in villages, towns, and deep in the jungle.

It was Deborah who, several years ago, saved Ramah from certain death, from a murder planned simply to rid the village of someone with a disability.

Disability in Nepal, out of sight, out of mind.

Let’s start to change that.

Monday, September 15, 2008

Why the Palin Disability Debate is Misguided

I’ve said it before, I’ll say it again: I really don’t care which political party Sarah Palin calls home.

I’ll also reiterate this: I am very interested in what people in powerful and influential positions (and those about to assume those positions) have to say about disability issues.

The blogosphere has had a lot to say about Sarah Palin and her youngest, Trig, who has Down Syndrome. However, there’s been way more heat than light, which, I suppose, was predictable, if no less frustrating.

Essentially, everyone seems to have focused on two issues: One: That Palin decided to birth Trig even after the DS was diagnosed. Two: That she made a point in her acceptance speech at the Republican National Convention that, if elected, she would be an advocate for people with disabilities.

Republicans took Palin’s birth decision and her comments as proof of her absolute pro-life credentials and that she would, they hoped, carry that pro-life credential to aid their cause when elected.

Democrats jumped to other conclusions. They saw Trig’s birth as a shot across the bow at pro-choice voters and that her mention of disability advocacy was a cynical attempt to sway the country’s largest voting majority: people with disabilities.

And so it goes. Disability as political football.

And it completely misses the point.

Everyone is so intent on blaming the other side or defending their side, that, as usual, the true, crucial, and very pressing issues that the disability community still faces in this country are, once again, marginalized.

The more I learn, the more I’m convinced of a couple of things:

First, advocacy with, and on behalf of people with disabilities is dangerously fragmented by all sides that get sidetracked with things like party affiliation and a host of other distracters (for example, gender issues, ideological red herrings, decidedly unpragmatic approaches to solving problems, etc.).

Second, these distracters quickly overwhelm the original focus of what actually matters most – the disability issue, pure and simple.

Third, is the amazing inability or unwillingness of many disability advocates to talk to each other, agree on what they can, put aside that which they cannot, and rigorously focus on the disability angle alone.

I don’t care if, as someone who wants to advocate with or on behalf of disability issues, you are Independent, Democrat, or Republican. Or whether you are an atheist, Muslim, or Christian. Or you are (fill in the blank).

You get the picture.

I’m not suggesting that a raft of other, extraneous factors don’t impinge on how we advocate for people with disabilities.

Let’s just try, shall we, to make them the background, and disability, and disability only, as the foreground?

Thursday, September 4, 2008

Cindy McCain Refutes Ethnicity as a Disability

As readers of the blog know, I’m African.

I’ve had my detractors, since moving to the US, about whether I can even make that claim.

Most bizarre, perhaps, were the charges by people, who should know better, that I couldn’t possibly identify myself as African because, as my photo attests, I’m white. I’ll note for the record that these detractors were not of my ethnic identity, not of my culture. They were American, and had never graced the shores of my beloved African continent.

I’ll note further, that in sharing this bizarre state of affairs, my African brethren, informed of my American colleagues’ epithets, were, above all, amused.

I told my story to a prominent national community leader in Zambia. He listened quietly and respectfully, as is the African way. When I was done, he asked me a question that healed my heart: “If you are white, and cannot be African, is it also the case that that, if you are black, you cannot be American?”

In a Johannesburg craft market, I shared the same story with a Congolese trader. He looked at me for many, quite uncomfortable seconds, eyes growing ever wider. Then, as is the African wont, he burst out laughing, shook his head, and told me that my story was so implausible that I must surely be making it up. Assured that I wasn’t, he shook his head and said, “I am sorry, my brother.”

Enough said.

I was reminded of this issue listening to Cindy McCain a few minutes ago, because she talked about Rwanda, and about Rwanda’s suffering in the genocide of 1994.

In 1994’s Rwanda, tribal identity was a lethal, and official disability: Hutu, you live. Tutsi, you die.

Cindy McCain acknowledged a guest in the audience, Ernestine, of Rwanda, a woman who had survived the genocide, and who works for healing and reconciliation, in spite of her painful past.

Making difference a disability is never right. Making disability a difference is no better.

Sarah Palin Scores for the Disability Community

As I mentioned in an op-ed several months ago, the disability community has been terribly frustrated about how they have been studiously ignored by both major parties in this election cycle.

A big mistake, I think, seeing that people with disabilities are far and away the largest minority and special interest group in America.

Well, last night changed the picture dramatically.

Republican vice presidential nominee Sarah Palin put both her supporters and detractors on notice that people with disabilities would no longer be ignored in civic life.

Palin chose not to genetically discriminate against her unborn Down Syndrome child, Trig.

She chose to show him off (proud mom that she is) along with her other children.

She faced the camera squarely and said what no other politician on either side of the aisle has, so far, been willing or able to say: That all people with disabilities matter, that they will no longer be ignored. That they have a rightful and unmistakable place at the table of civic life.

That they are, before anything else, Americans.