Tag Archives: Down’s syndrome

March 28, 2009 · 12:27 am

On Down Syndrome and other self-inflicted tragedies

Earlier this week Salon published an article about a mother dealing with an adult Autistic son, who’s out of control violence led her to desperate measures. Her story reminded me of the angry responses I’ve received whenever I’ve written against Down syndrome.

Dozens of parents have responded to each post, claiming to have adorable little children with Down’s. (The context to keep in mind here is that Down syndrome is now an optional illness, now that safe and effective testing is available for all mothers in the developed world.) Yet, I haven’t received a single comment from parents of adults with Down syndrome. Where are all the adorable little adults with Down syndrome?

I suspect there are three reasons why I haven’t seen their comments.

First, many of their children died prematurely due to the many health complications of Down Syndrome. (See previous posts for details.)

Second, many children have grown up to become severely disabled adults, and are living in mental institutions at taxpayer expense – or sometimes, in homeless shelters or on the streets.

Third, the minority of parents whose children survived to adulthood and who remained committed to taking care of them on their own know that their adorable babies turned into incomprehensible, obstinate, sullen, capricious, and sometimes very violent adults. Their mental illness makes the world an incomprehensible place to them, and their unpredictable behavior makes them bewildering to their caretakers.

Have you ever noticed the ratio of mentally disabled children to that of mentally disabled adults in social situations? The apparent disparity goes beyond their lower life expectancy. I suspect that the surviving retarded children grow into retarded adults, fundamentally unable to deal with civilized life, and hidden away in homes and institution and highway underpasses.

My point is that human disabilities, mental and physical, are a tragedy to be avoided at all costs, not something to be accepted as unavoidable fate, or worse, to be cherished for their uniqueness. They ought to be screened, aborted, and engineered out of the human race as soon as medically and technologically possible. If this is obvious to you, great. Unfortunately, inexplicably, even rational people whom I respect differ with me on this issue. The only proper response for parents who make such choices ought to be moral condemnation: if they have chosen to have crippled children, they ought to condemned, and all the pain, frustration, violence, and expense caused by their choice ought to be placed squarely on the parents.

(In response to the inevitable comments, I must emphasize that the condemnation extends only to the parents. Like all human beings, the victims of their parents’ choice ought to be cherished, and every effort should be made to integrate them into society and make them productive adults.)

One last observation: I’ve already written how many parents who choose to have Down children treat them as religious icons when they are small. When they grow large, how many of them treat them as pets that have grown too large to keep in the house, and delegate them to a locked basement, or a mental institution?

Update: Thanks to everyone for their comments. Rather than trying to respond to individual comments, I have summarized my response here: The One Minute Case for Designer Babies. Many of the other comments address abortion and eugenics. I responded to those arguments in this post.

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August 30, 2008 · 7:58 pm

Christian fundamentalists put freaks on parade

Christians and other mystics sometimes argue that religion makes people moral. I disagree: morality is a practical science which can only be understood by rational consideration, not emotionalism (the epistemological method of faith). To the extent that religious dogmas and religious people preach and act morally, they derive their principles using the same rational methods and the same evidence that is available to everyone. Since rational moral claims need no mystical basis, it is only the irrational and immoral actions which require religious justification. To the extent that religious beliefs as such influence people’s actions, they can only influence them to do wrong – sometimes unspeakable and sometimes trivial, but still evil.

For the most part, modern Western religions, such as those in the United States, merely consist of mindless time-wasting rituals. They are evil in the sense of distracting people from more productive activities, especially from more productive means of finding moral guidance. Nevertheless, for the most part, and despite their religion, most Americans are good and productive people, who pay lip-service to a dogma highly diluted by Western philosophy and modern science.

The prime candidate for the moral monopoly of religion in America is the domain of life and death. This is where the real evil of religious influence becomes evident. One particularly despicable influence of religion was out on display when John McCain picked Sarah Palin as his vice-presidential candidate. One of Governor’s Palin’s qualifications for the presidential ticket is that she gave birth to a baby with Down syndrome in April.

The fact that Palin’s baby has Down syndrome is certainly tragic. Down not only severely impacts the health and life-expectancy of the child, is also a tremendous burden on their caretakers. (Aside from my personal observation, my girlfriend has worked closely with Down parents and their children.) As an unpredictable genetic disorder however, the symptom cannot be blamed on anyone. Except for this: since January 2007, the American College of Obstetricians and Gynecologists has recommended Down screening for all pregnant women, and so Governor Palin knew that her fetus had Down’s, and decided to continue her pregnancy anyway. Furthermore, she has turned her decision into political leverage in the upcoming election as proof of her moral virtuousness:

“How refreshing that now we have a woman who reflects the values of mainstream American women,” said Janice Shaw Crouse of the conservative group Concerned Women for America.

Whereas previously, a Down’s child could be born without the prior knowledge of the mother, going forward, a parent with a Down’s child will likely (at least in the developed world) have made a conscious choice to have that child. The child represents a sacrifice made by their parents for their faith. As the recommendations of ACOG are implemented nationwide, Down children (and eventually those with other genetic disorders) will increasingly become symbols of faith – a freak show meant to communicate the “family values” of their parents. They will be a symbol of religious reverence in the same way as the scarred backs of Catholics who flagellate themselves, or Buddhist monks who set themselves on fire, or Sunni Muslims who mutilate their girl’s genitals or Shiites who bloody their and their children’s heads with swords.

Genuine moral virtues – such as integrity, honesty, and productivity are not useful as evidence of religious virtue. To the extent that their practical benefit is visible to everyone, they do not represent the special domain of religion. To demonstrate religious virtue, it is necessary to sacrifice authentic moral values in favor of “religious” values. The particular object of the sacrifice is not important – there is nothing particularly “biblical” about being prolife (the Christian bible just as easily supports the opposite position.) If Christian fundamentalists decided that cutting of one’s hand sufficed as proof of moral virtue, they would still be guilty of evil, but not much more so than the numerous other ways that people of all kinds find to be self-destructive. What is really vicious about fundamentalists in America is that the prey on the most vulnerable –poor pregnant young girls and women, those dying from painful terminal illnesses, the loved ones of brain-dead patients, — and children afflicted with terrible genetic illnesses.

One can at least grasp the moral indifference with which a fundamentalist can force a single young mother to abandon her goals and dreams and condemn her and her child to poverty. But what can we say about a parent that chooses a life of suffering upon their child? If we are morally outraged by child rapists, how should we judge a parent who chooses a lifetime of suffering on their own child?

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May 14, 2007 · 5:45 pm

Follow up on my Down syndrome post

Here is a response to some of the comments in my last post in Q&A format. (Some of the comments come from responses to my comment to other’s posts arguing against genetic screening for DS. )The questions are classified by two categories – the morality of abortion as such, and the morality of “eugenics.”

Abortion:

“You are pretty emphatic that a fetus is not a baby. Why?”

The essential issue here is whether a fetus has the rights of a human being. My answer is no for two reasons:

  • Pro-lifers confuse the potential with the actual. An actual human being is a physically distinct being who survives by the use of reason. (Yes, babies are helpless after birth, but their very existence does not impose an obligation on the mother –other are capable of taking care of them.)
  • There is no right to be a parasite. The fetus is essentially a parasite because its very existence imposes an obligation on the mother. A fetus has no more “right” to live of the mother than a thief has to live on others wealth.

“[You make] the common mistake of thinking that the unborn are not human persons because they are so small… Does your personhood derive from your size? Is Arnold Schwarzenegger more of a person than Gary Coleman?”

No, the essential issue here is metaphysical independence.

“[Don’t] infants with trisomy deserve to live just like any other infant does?”

Yes, once they are born. Prior to that, they are to human beings what an apple seed is to an apple tree, or an egg is to a chicken. Most people don’t claim that eggs are chickens – why do they make the same error with a fetus?

“Under current law, protected life begins at viability. Is that a bad idea?”

Actually, since Roe vs. Wade, it mostly does not. To the extent that it is protected, the law is wrong.

For more on this issue, I suggest reading the One Minute Case For Abortion Rights

Eugenics:

Have you “embraced eugenics?”

Eugenics is a vague term. If we view it as selective breeding on an individual level, then every parent advocates and practices it, since we all choose partners with certain genetic traits (a particular appearance or personality) rather than practice completely indiscriminate sex. If we define birth control as eugenics, then everyone also practices that also, since we choose when to have sex even when we don’t use technological aids. If we define it as the selection of particular combinations of genes, rather than the selection of the partner from whom those genes will come, in the form of genetic and prenatal screening, then I advocate that too, when feasible.

A different definition of eugenics is that which is practiced on a social level, as the voluntary or coercive selection of prevention of certain human genes from being expressed. I, like most people, advocate that only in a very limited basis, that being inbreeding between siblings and the cloning of human beings using current technology.

As it applies to Down syndrome, my belief that choosing to have children with DS is immoral is actually the opposite of eugenics. DS severely retards fertility, so having kids with DS does not increase its incidence as a hereditary trait. On the other hand, having less kids with DS does make room for those parents to have more normal kids with dormant DS genes, so it may actually increase the incidence of DS.

“Down syndrome is not a disease. It is not an illness… We all have our special needs, don’t we?”

Actually, it’s universally recognized as a genetic disorder. “Disorder” means a condition which is unhealthy or detrimental to life as a human being. The specific problems related to DS are “cognitive impairment, congenital heart disease, hearing deficits, short stature, thyroid disorders, and Alzheimer’s disease. Other less common serious illnesses include leukemia, immune deficiencies, and epilepsy..and “an average lifespan of 49 years.” This is qualitatively worse than the medical problems the average person encounters. For example, I have a genetic tendency for hypertension, which I counter with regular exercise. This is very different from a disorder which severely impairs most functions of everyday life.

“Just because a child is born with DS, [does that] mean that they are unhealthy or going to suffer for the rest of their lives?”

Not for their entire life. If someone were really going to endure constant suffering for the rest of their life, then I would suggest that they commit suicide. (Not murder, as some comments imply.) However DS does significantly affect the overall quality of life relative to a healthy personal. Some of the reasons for this are mentioned in my response above. If you still doubt this, then I would ask – how valuable would a cure for DS be to you if you or someone you loved has DS? Only someone who embraces human suffering could turn such an offer down.
One analogy to the quality of life of a DS person is wealth. Money does not guarantee happiness, but extreme poverty is an impediment to it by limiting our opportunity to pursue things that make us happy.

Do you advocate “playing God?”

Yes, in the sense that humans should strive to transform their environment and themselves in the image of their values.

“If there was a test for expecting mothers that predicts the IQ of their baby, every mother should have it done?”

If there was a test for mental retardation, then yes. If I could easily have a smarter child, then sure. Since abortions are expensive (not just financially), I only advocate them in cases where the child’s standard of life would be significantly impaired.

“If you don’t like the test results, [are] you going to keep on aborting the pregnancy until you’re happy[?]”

If I were a woman, and with the disclaimer above, yes.

“Good luck finding a woman that will do that for you.”

Thanks, I did.

“As the Bible says, the wisdom of man is foolishness to God. Those who think that they are so clever and know so much about medicine and science are like children to God, the creator of the universe.”

And you, of course, have a personal line to his office.

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May 10, 2007 · 1:01 pm

Pro-down syndrome: a moral atrocity

Mimpy posted on the OO forum regarding an outrageous new movement: Pro-Down syndrome:

Summary: Down syndrome is a debilitating disease, which is characterized by an extra chromosome developed after conception. Doctors can test for this syndrome, but previously the test (amniocentesis) was found to increase the chances of miscarriage. Thus, only pregnant women over 35 were tested. Science has recently discovered a way to test for Down syndrome that inflicts no harm on the mother or baby. It makes sense now for every pregnant woman to be tested to see if her fetus is carrying the extra chromosome. Parents of children currently stricken with Down syndrome are unhappy with this technological advancement, however. Since 90% of woman already abort their pregnancies after discovering their fetuses will grow into babies with this disease, these parents (rightfully) suspect that with the new testing capabilities, there will be far less people with Down syndrome in the future. This worries them because then there won’t be many others like their own children. Tolerance, awareness, and funding will all decrease because there will be less people with Down syndrome. To reverse this, these parents are encouraging couples who find out their fetuses are carrying the 21st chromosome that being the parent of a child with Down syndrome isn’t that bad of an idea.

Essentially, these parents actually want more human beings with Down syndrome on the planet. Instead of trying to find a solution to this problem, they are encouraging others to produce beings that are not well suited for human life. They cannot enjoy to the same level the things that you and I enjoy, such as independence, strong romantic relationships, etc. These parents’ notion seems backward and downright evil to me. I don’t know anybody who would wish for a child with a disability. But these parents do. Their children suffer, so they want other children to suffer, as well…so their children will have friends and feel close to others like them. The person who is best adapted to life has the best chances of surviving. How anyone can want someone below normal is beyond me.

It is one thing to have a child born with a disability that you did not know about. At that point, you have a choice: you can either support the child yourself if you can (emotionally, monetarily, etc.) or you can give it up for adoption. But there is no way that anybody can actually be glad that their child is sub-normal. It can work out eventually, of course. But the initial desire for a less than perfect child (physically, at least) is impossible.

What is next? Should I get polio because kids in India have it and they might get lonely? It is a backwards and ridiculous idea.

Every child should be loved and valued – but a fetus is not a child until he or she is born – and what kind of monster do you have to be to want your children to suffer their entire life? Only the religious dogma behind the hypocritical “culture of life” is capable of sinking people to this level.

Update: I wrote a response to the comments on this post.

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