“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Thursday, January 19, 2006

"decisions to continue or terminate are never medical decisions"

I recently reacquainted myself with an article by Roberts, Stough and Parish, written in 2002 entitled, The Role of Genetic Counseling in the Elective Termination of Pregnancies Involving Fetuses with Disabilities (published in the Journal of Special Education). I want to give you a few quotes from the article, interspersed with some of my comments. The authors state,
“most prospective parents seem to consider Down syndrome as involving severe mental retardation. In actuality, 90% of all individuals with Down syndrome fall within the mild to moderate range of fuctioning.”
The perception of who persons with Down syndrome are, has been one of the greatest misperceptions. It has taken on the status of "common sense" as social constructions often do. It has been reported that nearly 90% of babies with Down syndrome, when diagnosed prenatally, are aborted.
“A woman’s intention to terminate or continue a pregnancy did not appear related to her overall level of knowledge about disabilities…as the level of knowledge increased, the choice to continue the pregnancy was more likely…The women were asked if they had been encouraged to meet with the parent of a child with a disability during the prenatal screening process. The majority of women (91.3%) indicated that they had not been encouraged to meet with a parent by either the genetic counselor or any medical personnel”
Medical professionals and geneticists in particular I would bet have little knowledge about the day to day lives of persons with a variety of disabilities, including persons with Down syndrome. Yet they are in the position of influencing vulnerable families about decisions relative to aborting children with Down syndrome. I have mentioned elsewhere in this blog that the only suffering most people with Down syndrome face is that of discrimination (beginning with the medical profession at the point of prenatal diagnosis). To address the societal discrimination persons with Down syndrome face, with medical alternatives is entirely inappropriate. The group who is discriminated against avoids discrimination by having their lives taken, not by changing the society.

The article, also indicated that 72 % of participants had some Christian affiliation, yet 0%, NONE, NO ONE, reported the church as one of the “Sources of information women viewed as helpful during the genetic screening process.” In 87% of cases, “doctor recommended” was most often the influence in seeking genetic counseling. Can you imagine if the church celebrated loved and accepted people with Down syndrome? Prenatal diagnosis would signify not a terrible tradgedy with the only seeming alternative being abortion, but a new opportunity, a new adventure for the family. In particular, if the church were there being supportive, understanding, it would be a great blessing not only for the family but also for the church and the larger community.
“A woman’s intention to terminate or continue a pregnancy did not appear related to her overall level of knowledge about disabilities…as the level of knowledge increased, the choice to continue the pregnancy was more likely…The women were asked if they had been encouraged to meet with the parent of a child with a disability during the prenatal screening process. The majority of women (91.3%) indicated that they had not been encouraged to meet with a parent by either the genetic counselor or any medical personnel”
Such suggestions to seek out knowledge are probably not going to come from institutions who support abortion of any child as an aspect of choice, particularly a child with Down syndrome. But what if individuals with Down syndrome and other disabilities were present in the church in numbers reflective of the community. What if parents and family members of persons with disabilities were known to people in the church. Would that have in any way stemmed the decision to abort because the “level of knowledge” had increased.
“Women who had knowledge of resources and programs that assist with the education, training, and care of a child with a disability were more likely to consider continuing the pregnancy. It may be that as women become more informed about the associations, agencies, and individuals available to assist people with disabilities, they start to view the task of raising a child with a disability as less overwhelming.”

What programs is the local church providing generically, that are present in all churches, that would in any way cause prospective parents of a child with Down syndrome to consider continuing the pregnancy? This article never mentions churches as any kind of attenuating agent in the decision making of prospective parents. Can you imagine if all of the Christian prospective parents in the study stated, "We are going to keep our baby with Down syndrome because of the way the people with disabilities and their families are enfolded and celebrated within the Christian church."
“However, most women reported that they did not receive information about disability resources or quality-of-life issues from their genetic counselors. In addition, they did not believe that their counselor presented them with both the positive and the negative aspects of having a child with disabilities. This finding suggests that pregnant women make decisions based on limited information even after participating in genetic counseling."
Where would someone go to gain such information? What if the church became a clearinghouse for programs and services which would paint disability in a positive light? God asked Moses, "Who makes man's mouth" in response to his complaint about his inability to speak. It is arguable that God makes persons with Down syndrome. We as a church, however, don't seem quite as happy about that fact as we might be. We have failed in celebrating the diversity of humanity to the point that prospective mothers would perhaps reconsider abortion of a child with Down syndrome. What information, experience does the church provide about persons with disabilities and their place in the church and the larger society? People are dying because people think they will have a poor quality of life. How does the church contribute to the perception of someone having a good or poor quality of life?
The article cites Rothman (1993), as making the following statement:
“decisions to continue or terminate a pregnancy are never medical decision. They are always social decisions”(Rothman, 1993, p. 63)
Does the society of the Church contribute positively or negatively to the social decision making of people? Whether they are Christian or not, how does what we, the Church do, to influence decisions about whether to abort or not abort a child with a disability?



Christopher Thompson said...

I am just beginning the Exceptional child class and already several walls of ignorance are comming down. The #1 assumption I held was that those who have "Down Syndrome" are incapable of taking care of themselves and I assumed they were mentally challenged. Is it our fault that we as a society think this or is it the responsibility of medical professionals to educate the public about what the truth is? I remember back when the world used to think you could get AIDS disease off a toilet seat! It took a massive media information campaign for the world to wake up to the facts behind AIDS. Why has there been no similar response to Down Syndrome and what it is and more over what it is not!!! We see these folks participate in the good enough games or Special Olympics and our perception is to pity the participants or we recognize that they are in the game of life and cheer them on...either way we learn nothing of their reality of daily life and I think more should be done to educate people and give them some facts to work with.

impossibleape said...

Hi Dr. McNair
Thank you for all you are doing to combat ignorance and prejudice.
The disabled are truly the last and least and do face tremdous discrimination, even unto death.
I wish you all the success possible in your mission.

I am in my own way I am trying to do something about this. I have been working with Christian Horizons in Ontario Canada and have started a group called Road to Emmaus to try to get the needs of the disabled on the church's agenda.
Here is a link to my blog


it may be of interest.

Thanks again for your good work.

Len Hindle

Shannon Trantow said...

I know a couple that had been trying for three years to have a baby. After many, many months of broken hopes and disappointment, they finally conceived. Joyous and ecstatic, the couple made plans for their new family. Five months later, it was confirmed that the baby would be born with Down syndrome. They terminated the pregnancy three days later.

I wonder what would have happened if the couple had been directed to a support group and met with families and children with Down syndrome. Would they have been so quick to end their baby’s life? Would the decision still have been made if the baby was diagnosed with dyslexia or blindness or some other type of disability? Is it the lack of information that leads to the decision to terminate pregnancies or is it the fear of not having the “perfect picture family”?

I know it is not my place to judge nor do I know what it is like to be in their shoes, but I struggle with how quickly such a huge decision was made. I can’t imagine that it was easy. I can’t imagine the shock that many couples must go through when they find out that their “perfect picture” future is not what they planned. What I do know is that rarely does my idea of perfection line up with God’s perfect plan. I know that even though things do not turn out the way I expect them to, they usually turn out better because God knows what is best for me. I know that God has a perfect plan for all of us, even those of us with disabilities.

Anonymous said...

After listening to your discussions in class i've come to realize how naive i was about people aborting children because of a possible disability they might have. I know that before taking this class if i were to be in that circumstance i would have actually considered abortion! But now i am much wiser and would choose to have the baby regardless! Thanks for the insight!