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

Monday, July 11, 2005

More on down syndrome

I have been thinking more about the down syndrome discussion in the last blog. Here are a few more thoughts.

With some forms of disability, the disability occurs after the person has lived without the disability for a period of time. So a person who has lived a normal life becomes injured in some way and as a result experiences disability. First of all, I think this form of disability needs to be separated from a disability like down syndrome, one that a person is born with.

With down syndrome, the life experience that the person has is not influenced by life without the disability in the same manner. That is, their experience is all they have known. Now society would approach a person with down syndrome saying,
"I am sorry you have a poor quality of life" or
"I am sorry that you are not as smart as I am" or
"I am sorry that things will be more difficult for you, in terms of learning" or
"I am sorry that society is discriminatory against you."

However, a person with down syndrome would potentially reply,
"Poor quality of life in comparison to what? This is the only life I know."
"I didn't realize you were smarter than me," or "aren't there people smarter than you?"
"This is the way I learn, are things more difficult for me?"
"Sometimes people are just mean, but sometimes they are nice."

However, the problem is that on the basis of the statements I made about quality of life, etc., I then make the decision that the life of a person with down syndrome is not worthy of living. Our society has convinced many that the best, the wisest thing to do when you are pregnant and meet certain criteria (advanced maternal age, elevated levels of a particular protein, etc.), is to have a prenatal diagnosis done so the presence of an extra #21 chromosome (the cause of down syndrome) can be detected, and the unborn baby aborted. I am pretty sure that it is considered malpractice for a doctor NOT to suggest prenatal diagnosis should the criteria for a higher chance of down syndrome be present.

Now for years, I have been aware of these procedures, and although my wife and I chose not to do prenatal diagnosis because abortion of any form was not an option for us, it suddenly struck me that the end desire for these procedures would be the eradication of persons with down syndrome from the world. In the same way we might say, "Thank goodness we have done away with polio in the United States" there are those who would say, "Thank goodness we have done away with down syndrome in the United States." That must be the goal of prenatal diagnosis and abortion of these individuals. In order to prevent this from happening, you as a pregnant woman/family must actually tell the doctor "No" in terms of doing prenatal diagnosis and potentially abortion. The assumptions in these interactions are you meet the criteria, you do the test, you have the abortion. That is the assumption.

But lets think about what down syndrome is. It is not something you get, like a disease or something. It is not something you experience as a result of some injury, or lack of oxygen during birth, or something. It is genetically who you are. Just like I am white and others are black or brown, it is genetically who you are. I cannot hope to be cured of my white skin color. The only way to prevent my birth as a person with white skin color is to abort me, as that skin color is a part of who I am. Down syndrome is a genetic part of who those persons are. So through abortion, I am not preventing mental retardation, I am wiping out people who have a particular genetic trait that is a part of who they are, simply because they have that trait and I think it is bad.

Now I have probably known over a hundred persons with down syndrome over the years. I have come to believe that their down syndrome is a characteristic of theirs much like my skin color is a characteristic of mine. My skin color impacts much which will happen to me throughout my life. In the United States, it may mean that I have an advantage over those with a different skin color. It affects how much sun I am able to take before I get burned. It has cultural repurcussions to me. But when you boil it down, it is only culturally that my skin color really has any relevance to me. The society around me will decide on the basis of somewhat random social constructions whether or not it is good or bad to have white skin. But outside of social constructions, my skin color is largely an irrevalent characteristic. Should society decide it is bad to have white skin, I will have trouble in my life for that reason. But in reality the decision that white skin is bad or good is not based on anything rational.

I believe the same thing about down syndrome. I know people with down syndrome who live at home with their families are are loved by them. I know others who have apartments or are supported to live in the community. I know others who have jobs. I know some who are in adult day care, or do not work. But for most, when you distill their life experience it is the same as mine. They have friends, they have a job, they live in a home or apartment, they are just people. Now because they will not go to college, or take longer to learn some things, or look different, society has stigmatized them, convincing many that they are something different, something other than human even, that there is rationality in the decision to prenatally diagnose and abort them. To me down syndrome is somewhat of an irrevalent characteristic. It is particularly irrelavent when one is making determinations of human worth.

For the millionth time, I heard someone at church say that we are all the same in God's eyes, we are all equal in God's eyes. You know I am sure the woman who said that yesterday meant it when she said it and I really believe it as well. But if it really true that we are all equal in God's eyes, why are we looking for unborn babies with down syndrome so we can abort them? They think they have a pretty good quality of life. God forbid that we put ourselves in the position of taking the lives of others because they don't meet our criteria for a good quality of life, particularly when most who are making that determination don't even know what their quality of life is.



Anonymous said...

As a new mother, and therefore someone who was recently pregnant, I have thought a lot about this and would like to share my perspective.

I agonized over whether or not to perform the AFP test. I knew that the test has many false positives and can cause more worry than anything. I am not in any sort of "high risk" group for the conditions that the AFP screens for. Abortion is also not an option for me and my husband and I would consider any child we had a blessing from God, disabled or not.

I was leaning against taking the test. Though I was never comfortable with my descision, I still ultimately decided to take the test and here is why: I decided that I would rather know. I know that you may not agree with this stand point, but my husband and I felt that if there was a problem, we would be better off knowing before hand and being able to prepare mentally for what was ahead of us. Giving birth and having a newborn is challenging and emotional even with a "normal" baby. I could not imagine being a 26 year old brand new mom expecting a "normal" baby and having to deal with the emotions of the unexpected along with all the emotions that are naturally present. I am aware that having a healthy child is never a given, so many things can go wrong at any stage of pregnancy and delivery. It is something that expecting parents constantly consider. Baby making is a tricky business.
Even so, if one of the things that the AFP test screens for is the problem (I belive that it also screens for spina bifida and hydrosephyllis)we will not be surprised at the birth.

Even with the speech I just made, there are other problems that I have with this test that still plauge me. So my AFP test came out in the normal range and I never gave it another thought. But what if it hadn't? Would I have been willing to have an amnio to be sure something was/wasn't wrong and potentially harm my healthy baby? Or would I spend the remainder of my pregnancy agonizing over the possibilities? I was lucky to not have to consider these options. So the question is, will I have the AFP test the next time around? I'm not sure but probably not.

Anonymous said...

Christina Pham
Exceptional Child