And if thy hand offend thee

And if thy hand offend thee, cut it off.
~Mark (ch. IX, v. 43)

The current research into the genetic basis for autism includes not just understanding it as an intrinsic and permeating neurological difference, but is straying into the realm of being able to screen for babies carrying those genes, just as one can screen for (and thus not bear) babies with Down’s Syndrome.  (It should be noted that Down’s syndrome is a nonheritable genetic difference, but many other conditions are heritable.)

There’s an element of hatred in destroying an aspect of one’s self. The hatred is not always visible as stemming from fear, because the inherent paradox can be repressed. This paradox of virtue by self-hatred comes from a double-bind disguised as social responsibility: “Don’t you want to have a healthy baby?” How could this seemingly innocent question be a double-bind, an unwinnable situation? If you answer Yes, then you are at fault for not doing/having done the deed. If you don’t want to do the deed, then you are a worthless [future] parent because you aren’t Doing The Right Thing.

If an embryo carries a genetic trait, then that means you were responsible by having the genes in the first place. If those genes are undesirable, then that can be described as the genetic equivalent to passing on the sins of the fathers to the sons. Screening embryos for hundreds of “bad” genes is essentially seeking to perfect and breed better humans. People are uncomfortable with the fact that we can’t “fix” everything with science or social engineering, and remove all traces of perceived imperfection.

The genetic screening scenario presumes upon knowing which traits are bad and which are good, and ignores the fact that genetic diversity is necessary within a population for it to be able to adapt to new situations. We need people with different skills to fulfill different roles, some of which may not yet exist. Furthermore, the “usefulness” of particular genes is not always evident; having two sickle-cell genes makes one anemic, but having one sickle-cell gene confers resistance to malaria. Useful traits can occur because of clusters of interacting genes, and identifying all the players in the interaction is difficult; you may need some genes (that could be individually problematic) but work in synchrony with other genes to create useful traits.

Screening out embryos assumes that autism is a bad trait, rather than a variation caused by combinations of genes. It also assumes that having autistic children is tragic because there is a social stigma to having a defective/ crippled/ retarded/ autistic child — the child will never grow up to have a job and marry, but will ever be a burden upon the parents and society in general. Those “afflicted” are therefore undesirable and not-quite-human; people who are different are unacceptable. The whole “quality of life” issue given as the rationale for such efforts is presented in tragic, worst-case scenario terms. It paints disability as a fate worse than death that must be avoided at all costs.

Such disabled or nonstandard individuals must be able to “prove” their [monetary] worthiness to society to be acceptable, and thus deserving of the same rights and privileges as others. To be acceptable, the deviant people must do their best to “pass for normal”. One must straighten kinky hair, pretend you don’t have a gay partner, walk with braces rather than use a wheelchair, wear “invisible” hearing aids, and for heaven’s sake, not flap your hands in public when you get excited about something. Those perceived norms or desirable qualities state a lot about the implicit social power structures: only the imaginary “normal” people are okay, even though in reality there is no perfectly average, normal person.

Much of the disability seen in autism is from the extrinsic, socially-created problems. In essence, people are saying that genetic screening is a good thing because those children would have poor-quality lives, but are ignoring that such attitudes are a large part of what create difficult lives for people who are disabled or different!

The tragedy is not in having a baby that is in some way different, but rather in the thinly veiled disdain / loathing / fear of the public that is projected onto the baby, and therefore reflects upon the mother’s moral, genetic and social worthiness. It’s her fault if she declines to avail herself of current genetics testing (for any number of anomalies) and bears a “defective” baby.

Should women be required to produce an acceptably standard “product”, a baby that will conform to prevailing social norms of desirability and perfection? It seemed like a good idea during the American and German eugenics movements in the early decades of the 20th century …

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