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

Friday, August 18, 2006

The "embarrassment" of disability

In the book Defiant birth: Women who resist medical eugenics the author Melinda Tankard Reist takes on the notion of prenatal diagnosis leading to abortion through the stories of women who having received the diagnosis that the child they were carrying was determined to be disabled, but chose to have the child anyway. Of course she relates stories of those who were misdiagnosed, however, the thrust of the story is the experience of women who gave birth to children who were born with various disabilities. These disabilities include anencephaly (a disability which typically takes the life of the newborn within hours or days) and of course down syndrome. There are many amazing lessons to be gained. One, for instance relates to carrying a baby with anencephaly to term. Overwhelmingly, doctors would advocate for abortion of such children as they will die soon after birth anyway. Tankard Reist, however, says that if you knew your child would die in an hour or a day, would you choose to kill your child or would you enjoy the hour or day you had remaining with your child? Mothers spoke of their child living his entire life in their arms, of celebrating the 1 day birthday, or the trip home from the hospital. The also spoke of the impact for good the birth of the child had on their lives.

One story really touch me. Written by Elizabeth Schiltz about her experiences carrying, having prenatally diagnosed, giving birth and raising a child with down syndrome. She relates that when she took her baby out into the community there were actual comments made like "Why didn't you have prenatal diagnosis?" She said that many of the stares she received seemed to give the same message. There is a kind of embarrassment with goes with choosing to have a child with a disability, or simply having a child with a disability under any circumstances. Lets think this embarrassment through a bit.

Why would someone be embarrassed about anything in their lives? Perhaps I do something foolish and I don't want to be laughed at. Perhaps I do something wrong and I don't want to be found out. Other reasons could be thought of as well. The bottom line is that I am concerned about what those around me think about me, or my behavior, or my decisions. Teenagers in particular struggle with worries about the perceptions of their peers. As a parent I have often made a special effort with my kids to deliberately be goofy, or silly, or dress oddly in public so that when people look at me strange or if my children say, "People are looking at you" I can respond, "I could care less what people think of me. Am I doing anything wrong? (with my goofiness or whatever). If not I am not going to let them determine what I will do." They are on to me now, and know better, often saying themselves, "I don't care what people think about me." That is good, I think as it develops self confidence, but there is something even better that could happen. What if people would come up to me and say, "I like the way that you express your individuality." That would be an even more powerful witness to being a free spirit.

But that is what Christians, of all people, need to be doing. When we see a child with a disability, we should treat it like any other child we would meet. We should delight in her, play with him, tease with her. If I approach a family in my church or community who has just given birth to a child with down syndrome and say, "I am so sorry, I will pray for you." We don't bless that family, we embarass them when there is nothing to be embarrassed about. They have received the gift of a child that God has given them, often in the face of incredible pressure from the medical profession to abort the child, and our response is to embarass them for their heroic choice. Tankard Reist cites a statistic that 86% of babies prenatally diagnosed as having down syndrome are aborted by their parents. Do you, does the church add to the certainty that those children will be aborted by our embarrassment of parents, embarrassment of people with disability? As stated elsewhere in this blog, are we complicit in the abortion of babies with disabilities through our lack of caring or priority giving to the lives of persons with disabilties?

Those who would reject parents of persons with disabilities for choosing life or would reject people with disabilities themselves should be embarrassed, should be ashamed of themselves, not the other way around. We need to "not be conformed to the patterns of this world but be transformed by the renewing of our minds" ala Romans 12. What have you done in your life to contribute to 14% of families, moms and dads who chose to give life to a child with down syndrome?



Anonymous said...

Mr. McNair, I have three relatively personal experiences in the area of pre-natal testing. First, my sister, being over 35 and pregnant was tested for many things and found she is a carrier for Cystic Fibrosis. Both parents have to be carriers for the disease to have a chance of being present in a child but her husband refused to be tested on the basis of not doing anything diferently in terms of the pregnancy even if he was a carrier. The baby was born and lived very healthily for 4 months. At 6 months she had not gained any weight and by 8 months had been hospitalized 4 times with pneumonia. After several grueling weeks of tests and hospital visits, the baby was diagnosed with CF. She is doing very well now, at a year and a half, because she is getting very good care but I feel that if they had known about it earlier, they could have prevented so many months of discomfort and stress for both the parents and the baby. Even though he would not have done anything different about the pregnancy, I think it was a bit selfish of the father to think that fidning out if something may be wrong wasnt worth anything. They could have been far more prepared and less traumatized, in my opinion.
Second is my husband's sister in law. They knew, very early on that something was not right with their unborn baby; something very serious that no one seemed to know for sure about but, of course carried it full term. He was born with so many phisical problems that he only lived three days. But they, and their other 3 children, cherrished him for those 3 days in the hospital. He is a part of thier family and they have had another child and are expecting one more in the spring.
The last is my sister's Husband's sister. Her baby's skull did not develop. She knew this from the ultrasounds and she carried him full term. He lived for an hour and I know they were grateful to have that hour.
In each of these cases thier church families (they all belong to the same church as I do) supported them in thier times of need.
I am trying to be the kind of person who treats all people kindly without pre judging. I believe am part of the 14%, and I will make an even bigger effort to embrace all people as children of God because it has been brought to my attention.

Anonymous said...

Mr. McNair,
I also have had two friends that have been a part of pre-natal testing, both of which were advised to abort their babies because of the possibility of disease. The first was a friend who was told that her baby would have DS. Her doctors insisted that she abort the baby since "she would never be able to live a normal life with a child with those kind of problems." However, she insisted on having the baby and her son is now 11 with no problems whatsoever. My question is how could the doctors have been so wrong? How many women have aborted their children per doctors' request?
My other friend was told that her baby would not live past 1 year because of a disease (forgot what it is called) where the baby's intestines are outside of his body. She went ahead with the pregnancy and gave birth to a son who indeed had problems. Unfortunately her son passed away two weeks ago at 6 months old. My friend has said that she would cherish those months and is so glad that she did not have an abortion just because her son was sick.
I think that for some women the easy way out is just to abort a child because of pre-natal testing. Unfortunately, these women are missing out on a life with a child that would have been a challenge, yes, but also special and wonderful.