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.