“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?


Monday, January 16, 2006

Down syndrome music video

I have an idea for a music video which I am happy to share with any interested rock band. Here goes...

The video begins moving between scenes showing 10 different persons with down syndrome engaging in various activities typical to their lives. So for example
1- Girl eating popcorn and watching TV
2- A young man coloring in a spiderman coloring book
3- An adult man really enjoying a burrito
4- A woman holding and rocking a baby on her lap
5- A woman working at a sorting task in a sheltered workshop
6- A man sitting at a baseball game in team attire enjoying a game
7- A baby lying in a crib drinking from a bottle
8- A man bowing his head in prayer at a grave site while others walk by
9 + 10- A couple giving each other a kiss sitting on a bench in a park

The camera jumps between these people enjoying regular lives, perhaps fading in and out with close ups on faces so there is no doubt that the people have down syndrome.

Then out of nowhere, two people come in and grab the girl watching the TV and take her down into a basement where they hastily lock her in a room, fade to black. The coloring book is taken and the screen fades to black. The burrito drops from the hand and falls to the plate, fade to black. The baby is taken gruffly from the girl who looks up sadly, fade to black. The camera pans through the workshop which is empty, fade to black. The seat at the baseball game is empty, an obviously pregnant woman comes and takes the seat, fade to black. The same grave site appears, but no one is praying, people just walking by. The couple are separated gruffly fade to black. The crib stands alone for what seems an eternity. As the screen begins to fade out, text come up which says, "90% of people with down syndrome are diagnosed prenatally and their lives terminated." The picture then comes back and almost suddenly, a baby with down syndrome is laid in the crib fade to white.


Thursday, January 12, 2006

Moses and his mouth

One of my students provided me with an interesting perspective on the passage in Exodus 4:10 (LITV). The passage states,
And Moses said to Jehovah, O Lord, I am not a man of words, either from yesterday or the third day, nor since You have been speaking to Your bondslave. For I am heavy of mouth and heavy of tongue. And Jehovah said to him, "Who has made man's mouth? Or who makes the dumb, or the deaf, or the seeing, or the blind? Is it not I, Jehovah?"

There are many conclusions which might be drawn about who people with disability are, not the least of which is that they are made by Jehovah. However, I found it interesting that God comes to Moses, a man who it appears both Moses and God agreed had some form of a speech impediment, and asks him (Moses) to speak for Him (Jehovah). God goes to a person with a disability and challenges him in the area of his disability. Later in verse 15 the passage says,
And you shall speak to him, and you shall put the words in his mouth. And I will be with your mouth, and with his mouth, and I will teach you what you shall do.
Other than noting that God is a special educator, He is consistent in providing people to come alongside of persons with disabilities so that they can move beyond themselves. No doubt in addition to looking for an excuse to not do what God wanted him to do, Moses had defined himself as this person with a speech problem. He was probably teased as a child, felt uncomfortable around women, and all the other things which accompany such a disability. But God didn't see him in that way.
Moses also must have either known that God made him the way he was, or perhaps he wasn't sure and was wondering how God would respond to his complaint about his disability. God, however, leaves him no doubt. "Who has made man's mouth?" Now apparently, God didn't make just one mouth, but a variety of mouths, as he recognizes that Aaron's mouth does not face the same issues as Moses' mouth. It appears that Moses' mouth and Aaron's mouth are simply within the range of mouths God made.
However, the point I wanted to make here is to those who might read this blog who experience a disability. God may choose to challenge you in the area of your disability. This doesn't surprise me as it is a scriptural principle that God works through weakness such that His glory might be seen. Perhaps disability is an opportunity for the Christian who experiences disability. It is a chance to show God's glory through weakness. It is also an opportunity for those around that person with disability to also demonstrate God's glory by "working the works of Him who sent me(see 4/1/2005 blog entry).


Tuesday, January 10, 2006

The ultimate in discrimination

My friend and colleague, Rev. Bill Gaventa recently recommended a book to me and I am glad he did. It is, Hans S. Reinders' The future of the disabled in a liberal society: An ethical analysis (Notre Dame Press). I am only about half way through it, but I have thoroughly enjoyed what I have read thus far. For those of you who do not like to read philosophy, it is a bit thick, but it is definitely worth the effort. I want to provide an extended quote from page 46.

The context is the attempt to try to understand the reasons for abortion of children with disabilties in the context of "prevention" of genetic disorders.
The aim of the proposed terminology is to suggest that, in principle, we can attack the consequences of a disease from two sides: not only by combatting the disease with the diagnostic and therapeutic means that medicine provides but also by changing the social and cultural environment that makes for the cause of disability or handicap. The latter may be the objective of social and political reform rather than of medical intervention. The distinction between types of genetic disorders is important, then, because it generates different moral arguments. Preventing the birth of a disabled child because its life will be devalued as abnormal is surely morally different from preventing the birth of a disabled child that will suffer from serious illness. Even if in both cases their lives may be burdened by distress to similar degrees, their distress is very different in kind. Furthermore, being devalued as abnormal in our society may be seen as constituting a case of discrimination, which means that prevention in that case takes on a completely different meaning. For it can be argued, given these different meanings, that in some cases prevention is a dubious response to a social evil. At least that is what I think many people in our society will be lieve to be true. Instead of confronting the agents of discrimination, one aims at preventing its victims from being born. Consequently, people in our society may be worried about preventing disabled children for reasons of abnormality, even if at the same time they may accept that parents decide not to have a mentally disabled child in order to avoid serious suffering due to illness. If the cause of the suffering is society rather than nature, the more appropriate response would be political rather than medical. This indicates in which sense disabilities and handicaps caused by different kinds of genetic disorders may raise different sets of moral questions. (emphasis added)

Reading this, I can't help but come back to the notion of the church's protective function. We have the ability to provide succor with the potential effect of normalizing the lives and experience of persons with disability. Or by chosing to ignore or not prioritize ministry to persons with disability, we can be complicit in the discrimination which leads to practices such as abortion of such people. As Reinders states, the solution to aleviating the suffering of a significant group of persons with genetic disorders/disabilities is of a political or social nature. If the church would normalize persons with down syndrome, for example, the arguments for prevention of these lives through abortion would be harder to substantiate. We would also be all that we should be to the community, potentially having a dramatic effect on the understanding of who people with down syndrome are. People would have to say that persons with down syndrome suffer from discrimination, but only in environments outside of the Christian world. Within the Church and its agents, they are just people.