Saturday, June 21, 2008

We need to coin a term

The discussion of more and more attempts to identify and destroy babies with Down syndrome has made me think that it's about time we coined a term to describe the kind of fear and bigotry that leads people to think that being different ought to carry a death sentence. This drive for prenatal "screening" to identify and abort babies with dwarfism, Down syndrome, and anything else that makes the Beautiful People uncomfrotable needs to be clearly identified so it can be fought.

Let's go to the Phobia List and see what we find:

There is Anthropophobia- Fear of people or society. But these people aren't afraid of people in general; just of people whose appearance or ways of doing things make them uncomfortable.

There is Apotemnophobia- Fear of persons with amputations. But only some of these prenatal conditions involve missing limbs.

Here we have a possibility: Atelophobia- Fear of imperfection. Granted, these folks act out their own bigotry in terms of trying to eliminate others that they view as "imperfect", but might not there be an underlying fear of their own imperfection that they're projecting onto kids who are different?

Maybe there's an aspect of Cainophobia or Cainotophobia- Fear of newness, novelty. (also Kainolophobia or Kainophobia- Fear of anything new, novelty.) Is it possible that the fact that kids with certain prenatal conditions make the bigoted people fear that new things will be visited upon them?

Maybe this is closely related to Cenophobia or Centophobia- Fear of new things or ideas. (or Metathesiophobia- Fear of changes.) How horrible it might be for these people to entertain the idea that just because other people are different doesn't mean they're wretched.

Dysmorphophobia- Fear of deformity. Perhaps this is a factor. Not all of the congenital conditions that eugenecists want to weed out result in any part of the body being deformed, so this may be a partial explanation but hardly covers the fear of the various trisomies. I'd have to say the same for Teratophobia- Fear of bearing a deformed child or fear of monsters or deformed people. Not all congenital conditions cause any sort of visible deformity of bodily parts, but there is just as much of an impetus to eliminate babies with those conditions as there is to elimate those with more visible syndromes.

Maybe we're dealing with Optophobia- Fear of opening one's eyes. Not literally, of course, but fear of opening one's eyes to the humanity of those who are different.

There's definately an aspect of Panthophobia- Fear of suffering and disease. The eugenecists percieve the child as suffering, and as being afflicted with some disease, and thus fear the child.

Maybe we have a lot of different people with different fears all converging against their common enemy: children whose existence makes them uncomfortable, for whatever reason.

We need to stop acting as if what they propose -- identifying "defective" children through prenatal testing so that they can be weeded out in the womb -- is in any way a decent, humane thing to do. It's acting on one's own fear, making somebody else die because of your own personal issues.

It's mean. It's wrong. And we need to take a stand against it.

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10 comments:

trailer park said...

it's about time we coined a term to describe the kind of fear and bigotry that leads people to think that being different ought to carry a death sentence.

Who are these people you speak of? I don't know anyone who believes that being different should carry a death sentence.

This drive for prenatal "screening" to identify and abort babies

This is not the purpose of screening. It is helpful for doctors to know about fetal malformations in advance, so that specialists can be on hand for the delivery.

GrannyGrump said...

If you spend any time poking around the Be Not Afraid site, you'll notice a theme: Many of these women had to fight to avoid unwanted abortions. Just read what these moms had to go through:

Jaime: [Immediately after giving us the diagnosis, the] doctor had proceeded to tell us there was a room upstairs to start an induction. She never asked me or had said go home, rest, make an informed decision when you are thinking clearly. .... Being in that kind of mental state, I ended up following her upstairs. For hours all I could do was sob....

Fortunately, the doctors' attempts to abort Jaime's child was unsuccessful. Jaime went home, continued her pregnancy, and cherished the time she was able to have with her baby.

Lori: I called the [genetics counseling] office the day before the appointment to ask directions and ask what they would do for our baby. They promptly told me that they would arrange for the abortion right away. I said that I was not going to have one. ....

Two hospitals that we called would not see us, due to her condition being fatal, one of which ... told us that the baby's brain had more wrong than just hydrocephalus. .... They also refused to deliver because she was too complicated....

Our last stop and last hope ... would not deliver because she was going to die anyway. One doctor said, "She'll be nothing but a burden, a heartache, and a sorrow." ....

I told the hospital staff that they WERE going to deliver her. To help them see things my way, I [said]: "[When I go into labor] I'll show up unannounced to the E.R. Then you'll have a real mess on your hands. One, or both of us die, you get sued and end up on the news. Try me!"


This got the hospital to agree to delivery Lori's baby. The baby, Donna Joy, was not doomed, as doctors predicted. She does have health problems but is a joy to her family.

....

GrannyGrump said...

....

Sarah: [The doctor who did the diagnosis] told us our best option was to terminate. He said we were young; we could just start over and forget this ever happened.

We were devastated. I cried all the way home. When I arrived home, I called my doctor and told her what happened, and she said “we don’t see people like you here”. .... So I called around to different doctors and no one wanted to see me. The doctors who would see me suggested we terminate and when we refused, they suddenly didn’t have any openings. We finally got an appointment at University of Michigan Hospital, with Dr. Van De Venn. .... He suggested we terminate, but when we refused he said, "Then we will do everything we can to get him the help he needs". It was such a relief to finally find someone to help this child.


Though Sarah's baby has some health problems, he's a bubbly, happy little boy.

Michelle: That night, we were told that our baby had multiple defects. .... Most of the doctors we saw were telling us we should go for a late term abortion. They told us that with the heart defects, the baby would never sustain life. They told us that she would most likely be still born. .... They said that she would probably never take a breath, and if she did, she would be a shell of a baby. They quickly passed us on to a new set of doctors, because they felt that the risks were to high for them to continue to see me through my pregnancy, they were against carrying to term.

Michelle insisted on carrying to term, and though her baby has health problems, she is a joy to her family.

JoAnne: We left that appointment feeling so lost, and needing so many answers. We got second and third opinions, met with geneticists, obstetricians, radiologists, neonatologists, etc. Everyone told us the same thing- terminate the pregnancy. ....

We told my doctor that we would not terminate the pregnancy, and he insisted that I speak to a counselor. He gave me a phone number which I called- .... I called the number and began to tell my story to a counselor named Patty. I had no idea that Patty was a counselor for an abortion clinic. After hearing my story, she explained to me that because I was already 21 weeks pregnant, I had to make an appointment quickly-I only had up to 24 weeks to terminate. ....

We switched doctors because my original doctor was uncomfortable with my continuing the pregnancy- he felt it was too risky and would not deliver the baby. The hospital I was going to deliver at felt the same way, so at 5 months pregnant, I began searching for a new doctor and a new hospital. We were amazed at how difficult a task this was. Some doctors agreed to deliver the baby, but it was quite obvious by their comments and attitude that they felt we were wasting their time. After much searching and many consultations, we were so lucky to ... doctors who fully respected our beliefs and our desire to have this baby.


JoAnne and her family cherished the short time they were able to have with their baby.

....

GrannyGrump said...

Christine: The attending physician called us into her office and explained that from the sonogram that it looked very likely that we had a Trisomy 18 baby. She suggested we get an immediate amnio so we could "make our decision". One thing my husband and I kept repeating was that termination was not an option for us. .... The medical staff didn't understand us. The attending physician sent us to the genetic counselor that was affiliated with the hospital.

Things went from bad to worse. The counselor emphasized how horrible and fatal this condition was. We told her that termination was not an option for us. We got the response, " Are you doing this for religious reasons?" They did not know what to do with a couple who decided to continue a pregnancy like this in spite of the diagnosis. I asked her if she had any support for me. She said she would get back to me and give me the name of someone who had a child like this. I am still waiting.....

She said there was a lot of support if we terminated, she offered us nothing to continue with this pregnancy. I was shocked. The doctors and medical people at the big hospital didn't get us. My baby and I were under attack. Their goal was to have us terminate before 24 weeks. They did not give us an ounce of hope or support. We scheduled an amnio for the next day. But then we cancelled it. I never went back. The thought of going back was like going into hell.

She asked if we wanted to see a priest. .... She sent us to a priest out east from where we were. Aha! I thought, a priest will tell us what we are doing is good. All the medical people acted like we were crazy to keep our baby. My husband and I went to see this priest. Boy, were we in for a shock! He sat us down and basically told us how hard it would be to continue a pregnancy like ours. "You know you are going to get bigger and bigger each day Chris, it is going to be very hard to do this". He also said that these babies are very sick- there will be a lot of suffering. I couldn't believe my ears! I was expecting the priest to give us encouragement, support and resources on how to do this. Instead, he told us we should pray for a miscarriage and he told me how to bury my baby. We left his office without any resources, alone and helpless. ....

My OB was much different. We finally saw him a few days after the ultrasound. I did not want to be pressured any more. MY OB respected my decision to continue the pregnancy and said that he would support us. ....

In order to do all this I needed support. I did not get any resources from the medical community, nor did I get it from the church. Instead, soon after the diagnosis, I contacted a group called the Sisters of Life. They connected me to a group in Canada called Morning Light Ministry. I got spiritual and practical guidance from Morning Light Ministry to carry Grace to term. I had to hunt for and research these groups on my own. I really would have appreciated getting this either from the genetics counselors or the priests I talked to in the first days.


Christine and her family had two precious months with their beautiful daughter.

Stephanie: This woman began to explain all of the blood testing that was done and explain the defects they had believed they found to be wrong with our baby. After about an hour of explanations she asked us what our plans were for this baby. I was a little confused on what she meant about plans. So, I asked her. she told me that she recommended we terminate the pregnancy and before we knew it I could be pregnant again with a healthy baby. She even went so far as to get the appointment book out to schedule an appointment. She left me no other alternative.

....

The cardiologist said that she could not see his heart very well, so she could not tell us definitely that he was going to be ok, and she also said the there was a hole in his heart that should close and she could not tell us for sure it would. We left the office knowing absolutely nothing more than when we went in! However before leaving we were again offered information on the process of abortion!!


Though Stephanie's baby does indeed have medical problems, they are nowhere nearly as grave as the professionals kept telling her they would be. She treasures her son that so many people wanted her to abort.

Nancy: I went back July 7 and the "specialist" told me there were a number of things she saw wrong. .... She said that the baby had "severe chromosome abnormalities, incompatible with life" and that we should go to California immediately and abort the baby. .... She even offered to go before the Arizona Medical Board to get permission for a late term abortion (I was 26 weeks), but strongly urged us to terminate as soon as possible. ....

I went home devestated, in shock, and went on the internet to research the problems she had found. .... We returned for another checkup a week later to let her know what we were going to do, and we told her about what we had found. She said "You aren't looking at the Big Picture". .... She said I was "letting myself in for more pain" and that I should not wait any longer to have the abortion. She would not even talk about the alternate things we had found, and pressured us to "take care of the problem" immediately. ....

Well, a week later she called us with FISH results (preliminary to the amnio), to let us know that it was "worse" than she thought, and that she had never seen results like this before. She said she would go before the Board immediately to get permission for the abortion.


Nancy stood firm, and later delivered a premature but otherwise perfectly healthy baby.

GrannyGrump said...

From the California Department of Public Health web site:

"The activities of the Prenatal Screening Section (PSS) are focused on detecting birth defects during pregnancy. PSS is working to reduce the occurrence of birth defects and disability by offering prenatal screening and follow-up services to pregnant women in California."

They are a bit coy about their goal, since they say "follow-up services" rather than abortion, but the only way that prenatal screening can "reduce the occurrence of birth defects" is by aborting those fetuses identified as "defective". There's no mention of working to increase early intervention for the children born after prenatal screening detects a "disability".

GrannyGrump said...

The Politics of Women's Health

According to Adrienne Asch, a professor at Wellesley College and former Our Bodies Ourselves board member, "Using prenatal tests to prevent the births of babies with disabilities seems to be self-evidently good to many people."1 But for many people with disabilities, the message implicit in the practice of abortion based on genetic characteristics is, "It is better not to exist than to have a disability. Your birth was a mistake. Your family and the world would be better off without you alive."2

GrannyGrump said...

Airing the 'disability perspective' but getting few converts

"Their picture is of a line of babies waiting to be born, and a quality control officer coming along and throwing 'people like them' out of the line so they never make it to earth. My picture is of a 'disembodied soul,' the sense of my yet-to-be-born child, waiting to be inserted into a baby-shaped container, with me standing there to make sure my child's soul gets into a well-functioning container."

Mary Ann Baily, a fellow at the AMA Institute for Ethics, admits that what she has said is "utter nonsense from the scientific point of view." Yet her description is a good way to understand the split that exists between those who see prenatal screening for "defects" as wrong, and those who welcome it as an unmitigated good. We get both views -- all their varying manifestations -- in "Prenatal Testing and Disability Rights."

....

"Using prenatal tests to prevent the births of babies with disabilities seems to be self-evidently good to many people," Asch writes.

GrannyGrump said...

The Bad Baby Blues:

I started seeing articles in news magazines suggesting that if prenatal testing were used widely and women were then "willing" to abort fetuses found to be "defective," the incidence of children with certain types of disabilities could be significantly reduced.

The word "willing" always jumped out at me. Amniocentesis had been originally been touted as a way to expand pregnant women's options, but now it seemed that women were expected to use the knowledge that could be gained by prenatal testing in a way that satisfied others.

In the past decade, prenatal testing has become a multi-billion-dollar industry.... In most cases (but by no means in all) when a fetus is diagnosed as having a permanent disability, the pregnancy is terminated.

....

Selective abortion, which constitutes a tiny fraction of all abortions, occurs when the pregnancy is planned but the fetus is perceived as having undesirable characteristics. In other words, selective abortion involves judgments about people. Indeed, women who abort due to fetal "defect" are often urged to get pregnant again quickly.

....

What scares me is not the individual decisions people make -although I may disagree with some of these decisions - but the fact that society has latched onto the new reproductive technology as a lead weapon in a simplistic war against "birth defects." It is chilling to read decisions in wrongful birth and wrongful life suits where judges opine that avoiding the births of disabled children is a social good. It is equally chilling to hear public health analysts debate whether the abortion rate of "defective fetuses" will be high enough to make state-sponsored prenatal programs cost effective and efficacious. The legislature of at least one state (Alabama, in a law first passed in the late 1970s) has declared it to be state policy "to encourage the prevention of birth defects and mental retardation through education, genetic counseling and amniocentesis..."(Section 22-10A-l of the Alabama statutes).

How easily ignored is the ethical imperative placed on genetic counselors to be nondirective! And how easily blurred is the critical distinction between preventing persons from having disabilities and preventing persons with disabilities! Most frightening in my view, though, are the articles in legal and medical journals suggesting that carrying a disabled fetus to term constitutes "fetal abuse" on the part of the woman.

GrannyGrump said...

Disability, Feminism, and Eugenics:

Firstly eugenics practices throughout the 20th century have persistent links with the medical profession's long distaste of disability, deformity and any abnormality, inherited or acquired. Secondly, these practices can only be fostered in societies where disability-phobia persists, and includes Australia 1996, despite disability discrimination legislation and all of the improvements in community integration and support services that have been implemented in the past 25 years.

....

It would appear then that the phenomenon of the increase in terminations for foetal abnormalities is based on double standards: fear and ignorance of disability rather than on informed choice and unbiased information about actual experience of disability.

....

Pre-natal screening and diagnostic technologies underscore the extent to which eugenic values are operating in their promotion and application. Eugenics operates when women with disabilities are pressured not to have children, when non-disabled women are encouraged to use the tests during pregnancy to detect and eliminate ever increasing numbers of detectable disabling conditions. The presumption that a positive test result will inevitably be followed by an abortion is particularly repugnant to, and disrespectful of, people with disabilities.

The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents. The message to all women is equally clear: it is neither socially acceptable nor responsible to carry to full term a foetus with a disabling condition. With the emphasis on "perfect babies" the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad. Given the continuing widespread discrimination against people with disabilities, for a woman to give birth to anything less than a perfect baby is not only socially and economically undesirable but irresponsible.

supergrouper said...

I think that the (sometimes over-used, but in this case QUITE appropriate!) term "ableism" would apply in this case. It indicates a prejudice against disabled people. (On that note, it's REALLY weird to me that people who freak out over the use of the word "retarded" are usually okay with KILLING someone for having that problem- I guess it's okay if I gruesomely murder someone in an ableism-based hate crime, as long as I don't insult them in the process? Seriously, PEOPLE ARE NUTS.) No one is perfect- if we start getting rid of the imperfect, we're all doomed... And nature's imperfections are part of its beauty. I find much more beauty in nature's irregularities and capriciousness than in cold, geometrically perfect manmade objects...