Marlowe's Shade

Saturday, May 28, 2005

Euthanasia Demeans the Disabled

Advocates for the disabled have always been far ahead of the pack in their awareness of and opposition to the right-to-die movement. Groups like Not Dead Yet were not only at the vanguard of the fight for Terri Schiavo, but were opposing euthanasia two decades ago when most of us had never heard of Baby Doe.

Disability advocate Steve Eidelman argues with flawless moral clarity from the perspective of a disabled person in this article:

Too many people with significant disabilities have been called "vegetables," and this needs to stop. It is beyond demeaning. It is dehumanizing. In fact, some of the people who use the term most freely are doctors, and what often comes next is a discussion of the death or warehousing of the individual with such a pejorative label.

For a person with serious disabilities, the debate should not be about whether or not they are going to "get better" some day. Disability is a fact of life, every day of our lives. Millions of Americans are disabled, and for millions more, it is just a matter of time. None of us is guaranteed an able body or mind for life.

People with disabilities sometimes have wonderful lives, and sometimes they have lousy lives. They are just like other Americans. Just because a person has a significant disability does not mean that he or she does not love life. It does not mean that they should be assumed to be better off dead.

Contrast this outlook with that of the Dutch doctors who have proposed their Groningen Protocols to justify the euthanasia of disabled children, of whom they have admitted to killing four themselves.

One of them was recently interviewed on an Australian radio program.

A father of three, Dr Eduard Verhagen admits that by technical definition, he has helped commit murder.

His medical team at the Groningen Hospital in the Netherlands has ended the lives of four babies with spina bifida.

EDUARD VERHAGEN: They were newborns that we could not treat. They were also in a condition of severe and endless suffering. These children, they do occur, we have about 15 of these children in the Netherlands every year.

KIRSTEN AIKEN: How do you know a child's suffering is too great, and that they should die?

EDUARD VERHAGEN: Well, it's twofold. One is there is no treatment available. Secondly, we must be sure that the suffering is endless and hopeless and cannot be alleviated.

Now, in adults, if they are in the same circumstances, they can ask for euthanasia, and they can tell you that they're suffering unbearably. Children of course cannot do that.

However, we have developed tools in neonatology to assess pain and the reaction to medication. We have gone quite far in determining the situation of a child when it concerns suffering.

I admit that when this story first came out I accepted the description of spina bifida as this horribly painful disease, but this is something of an exaggeration. The effects can vary greatly. Olympian and Boston Marathon winner Jean Driscoll has it. So does John Cougar Mellecamp. Like any spinal cord injury, it can cause complete or partial paralysis and that can be accompanied by varying degrees of discomfort and pain. But by the Protocols, should all those with spinal injuries or diseases be euthanized?. It was refreshing that in this interview, advocates for the disabled were allowed to speak out:

Pierre Mertens' daughter was a victim of spina bifida. As the President of the international federation for sufferers of the disease, he welcomes Dr Verhagen's attempts to put the issue forward for debate, even though he says there's no justification to end the life of a newborn.

PIERRE MERTENS: And in all these debate, words are always used wrongly. They call it euthanasia even when the person is not dying at all. The newborn child with spina bifida is not dying. If the newborn child with spina bifida would be dying there would be no problem.

KIRSTEN AIKEN: The Groningen protocol prompted Pierre Mertens to survey an unidentified number of spina bifida victims. He says whatever the degree of the disability, each sufferer rejected the notion that a life with spina bifida isn't worth pursuing.

PIERRE MERTENS: It is a feeling of all people with spina bifida. They say we are living now in a world where the world says the quality of life of these children, of these people, is not worth living and they are absolutely, absolutely upset by that.

And do you know it is the situation where doctors are looking at the human being only from a medical side. The quality of life is not only a medical aspect. It's about art, it's about love, it's about music. This makes quality of life, not if you are in a wheelchair or not.

Go to the site of the Spina Bifida Association of America to see photos of those who, according to the Groningen doctors, aren't fit to live.
papijoe 6:50 AM