My career path, if it can be said in any way to actually resemble a path, has been a strange one, at least among many of my peers. When I left youth ministry at the age of 29, I more or less backed into the human services field. With some applicable experience but little in the way of relevant credentials, I found myself working at a home for at-risk youth (the less said about this experience, the better). When they ran out of money and could no longer pay us regularly, I went to work for a community mental health agency as a counselor/case manager at a group home for six adults with mental illness. I learned a great deal during that time and that experience put me into a position to take a government job as a manager for a 5-bed group home for adult women with mental retardation (MR). I was there for two years and would have stayed longer if I hadn’t gone back to school.
I have thought quite a bit about the experience of running that group home since reading Michael Gerson’s op-ed piece in the Washington Post about children born with Down Syndrome yesterday morning. Gerson rightly points out that 90% of babies are aborted that receive a prenatal diagnosis of Down Syndrome (DS), spina bifida, and other conditions that will affect function in life.
90%. Think about that. Such a high figure indicates that the choice to terminate is not limited to any demographic or income level. Caucasian or minority, poor or rich, conservative or liberal, religious or other; the vast majority of these pregnancies are ended once the diagnosis is received.
Gerson is a conservative and has never made any bones about that. He makes reference to Sarah Palin and her decision to bring her 4 month-old son Trig to term despite learning that Trig had DS. Not surprisingly, the comments section of the piece concentrates on the political implications; with comments ranging from the profound to the inane to the ignorant to the cruel. For our purposes, let’s consider those that fall into the last three designations. For example:
“Trig: n. 1. A political prop often used by the republican Christian radical right. The governor used a trig to deflect scrutiny of the Christian theocratic aspirations to raise the Joel army and start the final crusade (third wave) cleans the world of all other religions.”
“Is it fair to the children who would be born with Down Syndrome to let them suffer through life? Should parents be required to sacrifice their lives and careers in order to adjust to the increased demands of taking care of such a child?”
“‘smashed the chromosomal barrier’
Mo’ betta’ mutations.
That’s what we need.”
“Thanks a pantload for your cheery speech on the rights of Down fetuses. I care just a little more about gay rights, safe and legal abortion, smashing racism and the lives of the half million Iraqis who have been murdered by the US for imperialist purposes.”
To his credit, Andrew Sullivan (by no means a Palin supporter) offers a more fair and humanistic view:
“At least we know this for sure: she went through the psychological, emotional and spiritual test of eight months of pregnancy and a painful, difficult, endless labor for a cause she believes in.
Trig represents in one simple, indelible image one mother’s decision not to do the expedient thing.”
What bothers me the most about the comments on the article is that most of them are made in the abstract; how many of these commenters have a family member with DS or another form of MR or even know a person with such a disability? The second-most bothersome thing to me is that the issue is viewed in political overtones. Are your lives and mine political issues? If not, then neither should the life of a person with MR be a political issue.
This is indicative of the paternalism, indifference, and hostility that our society has historically shown towards the disabled. The first school for special needs children was named “The Massachusetts School for Idiotic Children and Youth.” Of course, the designation of “idiotic” at the time was very broad – it included the deaf, the mute, and the physically disabled in addition to those with cognitive disabilities. Furthermore, the disabled were often looked upon as morally flawed. Havelock Ellis, a well-known writer in his time on issues of human rights, once referred to the “feebleminded” as being incapable of “resisting their own impulses or the solicitations of others” and the state of feeblemindedness as “an evil that is unmitigated.”
An effort to “solve the problem” of disability that became widely used in the twentieth century was forced sterilization. One model law called for the sterilization of persons with mental retardation or mental illness, recidivist criminals, persons with epilepsy, substance abusers, persons with infectious diseases, the blind and the deaf, the physically incapacitated (due to birth or illness), and those dependent upon the largesse of society, such as orphans or the homeless. Mandatory sterilization cases, although decreased in number, were still appearing on court dockets as late as the early 1990’s.
Today, most of us are appalled at such treatment, and rightly so. But when a human life is reduced to a cost-benefit analysis, are we doing that much better? Who are we to determine the worth of somebody else’s life? How do we know that a child with DS or another form of MR is destined for a life of misery?
I am not claiming that my job experience makes me an expert on this subject. Nor do I wish to trivialize the added struggles and difficulty that go into being a parent or responsible party of an individual with MR or any developmental disability. But I can tell you that the women who lived in that group home did not live empty lives. They were as diverse as any group of so-called normal people. Some liked television. Some liked to read. Some liked rock music. One even liked opera. Some were religious, some were not. Some liked to swim; others preferred a walk in the park. But they were as human, and all that the word implies, as you or me. Every one of them could at times be endearing or annoying, mischievous or harmless, kindly or mean, happy or sad, fun or boring. But on a good day or a bad day I do not believe for a second that any of them would have been better off having never been born. And their families, the very ones who bore the extra burden of caring for them all of their lives, as well as the friends whose lives they enriched, would say the same thing.
I guess that my experience, for whatever it is worth, makes me less than objective on this subject. If it does, I don’t care. If I have to err, it will be on the side of those who truly are the “least of these.”