Disability benefits

I guess disagreeing with others’ conclusions about ethics is a hot topic around here lately. Separate from our ongoing series about “The Ethicist,” today I’d like to direct you to this post at blog.bioethics.net. Summer Johnson asks: will the Down syndrome children disappear?

If current trends continue, it would appear that the answer is yes. Dr. Johnson quotes an article which says there “would have been a 34% increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15% fewer babies born [with DS]….” She also claims that “some 92% of women who know their fetus has Down syndrome choose abortion.” Then, Johnson goes on to reflect about whether or not this is a good thing. (Emphasis in this and subsequent blockquotes is mine.)

But what will our society lose if all the Down syndrome children disappear? There will certainly be a thread of our humanity that would be lost. Moreover, I doubt that there will ever be a time when Down syndrome is ever completely gone from our population. 100% of women will never terminate their Down syndrome pregnancies–nor should they. Their [sic] is a richness and fullness that raising a handicapped child brings to parents’ lives and for some parents that is what they wish to have.

I find this line of argumentation very troubling, and I said as much twice in the comments. There were also comments from two parents of children with Down syndrome, which I found disturbing in the same way. Commenter “jaws” wrote:

…I chose to keep my baby because every reason we came up with for not having her was selfish. Ten years later it was the right decision not just for my family but for the world. Her teachers say we learn more from her than she does from us. One said she was her most memorable student (after 20 years of teaching) and for good reasons. Our children’s minister said that the other children learn more from her than she does from them. I have watched her melt some of the most sinister people in the world who view terminating babies with Down syndrome differently because they know my daughter. … The world is a better place because there are people with Down syndrome here. Not just because we are the parents but just because. That’s not even to mention the scientific break through that individuals with Down syndrome are helping to conquer. Just one mom’s thoughts.

Later, commenter “Mari” posted:

I too have a child with Down Syndrome and we chose to have him with prenatal knowledge. It was a very hard decision but one I do not regret. I now feel that he was brought into this world not just to change me and my family but to touch and perhaps change many. Its not just teachers and therapists that he affects but I see friends of my daughter, his sister, in junior high. I see him melt their so cool facade and show such patience and care and joy just interacting with him. Yes, if these people are marginalized it will negatively affect our society.

So they’re saying that people with Down syndrome give us “richness and fullness.” We can “learn more from” them than we could possibly offer to them, because they teach us “patience and care and joy” and “melt [our] so cool facade.” The mechanism for that is left unspecified, but boy, are they ever sure it is true. People with Down syndrome also allow us to use them for scientific experiments, apparently. And yet! And yet our reasons for having children with Down syndrome are not selfish, but choosing not to have a child with Down syndrome would be selfish in the extreme.

Am I the only person cringing at the contradiction here? These arguments for having a baby you know will have Down syndrome are all based on how we can benefit from that baby, with no consideration at all for the child’s life. That is selfishness if I ever heard it.

Down syndrome is a serious condition. Yes, the outcome for any one person will be somewhere within a broad range of severity. But the most common health implications include “cognitive impairment, congenital heart disease, hearing deficits… and Alzheimer’s disease. Other serious, but less common illnesses include leukemia, immune deficiencies, and epilepsy.” Even a so-called mild case of a list like that is pretty serious. Do you know why children with Down syndrome teach us “patience and care and joy”? It’s a bit like watching a child with terminal cancer laughing at a cartoon. We see how our problems pale in comparison to theirs, and marvel at how they are still able to be happy. Their suffering and disadvantage shows us how to appreciate our relatively good circumstances. Let me repeat: their suffering and disadvantage.

If you are going to make the argument for not aborting a fetus you know will be born with Down syndrome, you ought to base your argument on the fact that the child’s life will still be valuable, will still have positive utility, will still mean a whole spectrum of worthwhile life experiences. We all suffer to varying degrees and in varying ways, and the existence of suffering does not mean that a life should end before it begins (or, as it is just beginning, depending on your point of view). You can make that argument. But these are standard anti-abortion arguments in general. They have nothing to do with Down syndrome in particular.

And this is not the line of argumentation that Dr. Johnson, “jaws,” and “Mari” are pursuing. They say that the presence of people with Down syndrome is important for our “humanity.” They claim it is useful and good for society to have them around, presumably because the rest of us learn about interacting with people different from ourselves. However, we will still encounter lots of people who are different from ourselves, and we can learn from them in the event that someday there are no children born with Down syndrome. The argument that we need to keep having children born with Down syndrome in order to perpetuate this would equally well apply to children born with fetal alcohol syndrome or prenatal lead poisoning. It’s an argument that would justify not fixing cleft palate, and not administering (or even inventing) the polio vaccine.

It’s unethical to use someone else’s suffering as an instrument for your own marginal self-improvement. If it were possible to live in a world where no one suffered from Down syndrome, I’d say that world would be an improvement over our current one.

  • email
  • Digg
  • StumbleUpon
  • Reddit
  • del.icio.us
  • Facebook

September 24, 2009 · Written by
Tags: ,

Comments

2 Responses to “Disability benefits”

  1. Momlakes Identicon Icon Momlakes on September 26th, 2009 3:31 pm

    I would guess that the commenters chose those arguments because they have learned that arguing about the value of an imperfect life is fruitless in our current society. I am sure that they know that peope don’t want to believe someone who comments on how fulfilled someone else’s life is.

    For never having experienced Down syndrome personally, you seem amazingly convinced that this population “suffers” terribly. Suffers? Really?!? Have you seen pictures of kids with Ds? Ever met anyone with Ds? Read the blogs of persons with Ds? This is a group of individuals who embrace life, and expect those around them to do the same! They approach life with an openness and enthusiasm that the rest of us only wish for.

    Please don’t project your own archaic ideas and self-pity onto individuals who neither want nor need them.

  2. Z Identicon Icon Z on September 27th, 2009 12:50 am

    Yes, I think that people with Down syndrome suffer. I think that having epilepsy, heart disease, and an IQ of around 50 impose definite hardships on a person’s life. I have a really hard time imagining anyone disagreeing with that statement. I did not claim that people with Down syndrome are never happy, do not live fulfilled lives, are not valued members of society. In fact, I offered an argument to the contrary.

    I’m not arguing that we should be aborting everyone with Down syndrome. I’m arguing that aborting a fetus with Down syndrome is no worse than aborting any other. (I don’t want to have the entire abortion debate here; my point is that that’s separate.) I’m saying that we shouldn’t be making a special effort to have kids with Down syndrome. The comments that I quoted were basically saying that we should make sure to have a bunch of people with Down syndrome around, so they can have their epilepsy and heart disease and IQs of around 50, and we can watch and be amazed and inspired at how they triumph over adversity. I think that’s repugnant.

Leave a Reply