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Tuesday, June 3, 2014

Uninspired

I have not written any posts recently for a a few reasons foremost among them was an extended bout with strep throat--an experience I could have lived without. Today, I am just happy to swallow without pain and experience no fever. Do not fear faithful readers. I sill return soon. I am attending a conference this weekend at Syracuse University on the philosophy of disability. Link: http://spawn2014.syr.edu I was not involved in its organization and am merely a discussant. I am looking forward to this event and dreading it. I get to meet Dominic Wilkinson, author of Death or Disability? As one might guess for a scholar coming out of the Uhero Bioethics Centre he comes firmly down on the side that life with a disability is a fate worse than death. I am looking forward to asking him exactly how much time he has ever spent with a person with a disability.  Jeff McMahon will be present too. A man that in 2008 unfavorably compared Eva Kittay's severely disabled daughter to a pig (yes, a pig). On the positive side Anita Silvers, Eva Kittay, Lenny Davis and other top notch disability scholars will be present. At worst, dinner should be wildly entertaining. Wondering how the table will break down in terms of camps of thought.

Unrelated--well sort of. I came across the following "If Healthy Pregnancies were Treated Like Special Needs Pregnancies". I hate the title for sure. I hate the blog title too. But I sadly shook my head that this essay is spot on and reproduced in flu below. Link: http://wifeytini.com/2014/06/03/if-healthy-pregnancies-were-treated-like-special-needs-pregnancies/#comments


If healthy pregnancies were treated like special needs pregnancies


Mr. and Mrs. Johnson, good afternoon. I’m Doctor Dumas, a visiting obstetrician in Doctor Kwak’s practice. It’s nice to meet you.
Look, there’s no easy way to say this, so at the risk of sounding blunt, I have some bad news.
The technician and I reviewed your scans and we found that you’re about ten weeks along with a human fetus. I’m not seeing any abnormalities as far as growth or bone and organ structure, but you’re very clearly pregnant with a human baby. In all likelihood, you’ll carry the baby for another thirty weeks until your amniotic sac ruptures and the baby exits your body vaginally. In some cases, your baby will be extracted via cesarean section. Either mode carries its own set of risks and is extremely painful. We’re so very sorry.
Your baby will be born, unless you suffer a miscarriage or stillbirth. After his birth, he will live, and then he will die. He will live until he dies. I’m sorry to say that life is terminal. The fatality rate for human beings is 100 percent. If he survives past birth, you’d just be living on borrowed time.
How long does he have? We’re not sure. Humans typically live until their mid-seventies, depending on where they’re born and a variety of other factors. But many die at age 5, or 15, or 30. We can’t predict with any certainty how long he has, but we know that death is an inevitability. You probably have a history of death in your family.
We’re also sad to say that your child has cancer. Well, not right now, but statistically it’s possible. You’re carrying a human child, and fourteen thousand of them every single year get some kind of cancer. In fact, the second leading cause of death between kids ages 5-14 is cancer. This is second only to unintentional accidents like a gun misfiring or some sort of collision. So if your baby doesn’t die in a car wreck first, I’m afraid there’s a chance he’ll get cancer. I’m so sorry.
If by some chance we prolong his life until age 15, the odds don’t look good then either. It’s not totally hopeless — I mean, never say never, right? — but teen mortality rates are climbing. There’s always a risk of car accidents, overdose, and particularly suicide. The suicide rate is particularly troublesome. I’m a numbers man, so I’ll give it to you straight: Thirty three thousand teenagers committed suicide in 2006. And being born is the leading cause of eventually committing suicide.
I know you have a lot to think about. Just try to breathe. There are a lot of options. It’s important to take care of yourself first, and your marriage. Children are a big contributor to divorce. Almost forty percent of divorced people have children at one point. Suicide, cancer, divorce … if the baby survives birth, you’d be bringing him into a pretty questionable environment. You’ve got problems coming at him from all angles. Multiple problems. Quality of life is important to consider.
This is the part of my job I hate. I can only imagine how shocking and upsetting this is for you. Unfortunately, we have even more difficult news. Your Chorionic Villus Sampling test came back with some red flags. Our tests indicate that you’re very likely having  a boy. This occurs typically in half of all pregnancies, and nobody really knows why. We know the Y chromosome plays a part, and we know the father is the carrier.
These things just happen.
Risks? Well, males typically have higher testosterone, which could lead to anger issues. They’re more likely to abuse alcohol and much more likely to rape. Something like 90 percent of all homicide offenders are men, and the vast majority of inmates in the penal system are men as well.
You have a 1 in 2 chance of having another boy, should you choose to get pregnant again. You could also try for a girl, but there are risks involved with a girl as well. Girls are muchmore likely to be raped and make up the vast majority of sex-related homicides. 100 percent of people who die in childbirth are women. Women are less likely to commit suicide and rape other people, but they’re infinitely more likely to die of ovarian and breast cancer. There are significant risks, whatever you do. I’m afraid it’s inescapable.
Well, you have a lot of options. You can take your chances, or you can terminate. I can’t make that decision for you, but I will say that terminating now will let you start the healing process that much sooner. It’s early in the pregnancy, and it would probably be easier to do it now rather than wait twenty five years to see if he turns out to be a rapist.
On the bright side, he could be worse. Your baby is caucasian. Black children are three times more likely to grow up in poverty, and black men are twenty times more likely to be sent to prison than white men. The outcome is just very poor for people of color. I wouldn’t wish that on anybody. Just be grateful he isn’t a girl. Or black. Or a black girl, God forbid.
So. Talk it over. You two have a lot to discuss.

6 comments:

Barb Farlow said...

This is great Bill. The point is that any child can be framed in a negative way. That's why the expansion of prenatal testing- and the eventual ability to determine the entire genome of the unborn via a simple sample of moms blood at 10 weeks- should scare us all. If anyone thinks they are genetically perfect, they better think again.

Our local hospital used to have a glossary definition for Down syndrome that was awful. It mentioned sexual deviance several times. ("Parents must teach their child not to touch their genitals in public" etc). It is possible that some expectant moms might fear that if they didn't abort, they'd let loose a sexual predator in society.

I showed the definition to my friend who is quite savvy about the way disability is incorrectly and negatively framed. She said, "Why this could be any child and I realized that she was correct."

I would add to the post that the expectant couple might be warned of the financial burden of their unborn and the liklihood of irrational behavior around the 2nd and the teen years that will get so bad they might want to pull out their hair.

CHClark said...

You should hear what they say when you are an expectant mother with special needs...

william Peace said...

I fear an answer to the question you pose. I bet it is a full court press and little choice in reality.

Second Summit said...

As a new student in hospital chaplaincy, I asked a lot of questions about disability, difference, and the policies of doctors and the hospital. I especially asked about birth anomalies, but was given little info or guidance.

The essay you've quoted is chilling. If this is the tone of conversations at diagnosis, I wonder how a chaplain can support the parents in discerning how to proceed without all this induced sadness?

Thanks so much for the opportunity to think about this again.

william Peace said...

Second Summit, Your questions were not answered because they do not want to admit to reality. The reality is NICU are secluded and protected environments. Only those in the business of health care enter or parents of children. Of all the groups in medicine this environment is closed to outsiders. The decisions made too dubious and based on questionable ethical grounds. This is a long way of saying the tone of the conversation was spot on. As to what a chaplain can do: question the norm. Do not accept status quo. You answer to your patients and a higher authority.

Ronn said...

As PGD and prenatal screening technology continues to advance, so does the steady movement toward mainstreaming eugenics.
Any bioethicist who actually looks forward to the plethora of inevitable ethical challenges is either a masochist or (hopefully) a genius. I am neither and hope to be long-retired before being forced to confront this particular hydra in my hospital practice.