When I was a freshman in high school, I had a tense conversation with my biology teacher that has always stuck with me. As a class, we had been learning the basics of genetics, and examining some of the ethical issues surrounding prenatal screening for congenital disorders. Our teacher was an enthusiastic supporter of screening, and believed that if conditions could be detected and eradicated early enough, children and their families would be spared from investing in expensive and invasive treatments, not to mention experiencing psychological trauma in the long-run. He reasoned (paraphrasing), “If you could prevent a kid from being disabled, why wouldn’t you?” I objected, essentially suggesting that disability is an element of human diversity, and that experiences of disability can contribute positively to people’s characters. (Admittedly, at 14, my words probably weren’t as organized or concise). His response (shock and dismay) suggested that it was much more unethical to allow people to be disabled, when perfectly good options were available to “fix” these problems. Even though I couldn’t eloquently rebut his points at that young age, I knew that something just didn’t seem right about his argument. And although these issues have become more complex and multi-faceted in my mind as I grew older, my position has remained the same.
Today, medical abnormalities are still considered reasonable grounds on which parents can abort their fetuses. In this post it’s unnecessary to review the whole history of abortion rights and the pro-life/pro-choice debate, because readers in general are well aware that this is a contentious issue. I’m not arguing against women’s rights to choose what happens to their bodies. Instead, I’d like to urge parents and society as a whole to make responsible, broad-minded decisions that consider the validity and rights of persons with disabilities (PWDs). At the end of the day every woman has the right to terminate her pregnancy at her own discretion, but it’s important to make informed decisions that don’t rely on misguided perceptions of disability.
The question I raise here is not whether the practice of abortion is ethical, but who is getting aborted and how do abortion trends reflect society’s norms and values? Take, as a parallel example, the trend of increased female feticide in certain countries. For various reasons in such cases, it is culturally or financially advantageous to have sons instead of daughters. As a result, we are seeing skewed sex ratios that could threaten the stability of populations, not to mention continue the devalued perceptions of women.
Similarly, we see that medical professionals and researchers have made it a socially acceptable goal to eradicate disabilities. Eugenics, the study of ways to improve the genetic composition of a population, was discredited long ago, after the height of its practice in the mid-20th century. Yet, the idea of eliminating “abnormality” in the human race still remains in the often-overlooked issue of disability. Various techniques, such as an ultrasound or amniocentesis, are available to parents who may wish to screen their children for disabilities. For example, Medscape, a site that offers medical information and educational tools for patients and medical professionals, lists some of the benefits of prenatal diagnosis, including 1) helping couples decide whether to continue the pregnancy, 2) preparing couples for the birth of a child with an abnormality, and 3) improving the outcome of pregnancy using fetal treatment. Abortion is offered as an option to parents whose unborn children are diagnosed with Down syndrome, spina bifida, or even intersex conditions. Recent breakthroughs have even made it possible to diagnose genetic disorders in embryos before implantation, using in-vitro fertilization. A rather disturbing quote from Singularity Hub, a science blog that focuses on genetics, longevity, and stem cells, goes so far as to say, “it’s important to consider that more and more often, genetic disorders won’t need to be treated; they’ll just be prevented altogether. A future in which genetic disorders have been eradicated altogether is one worth fighting for, and that’s becoming a reality. Pretty cool.”
Supporters of prenatal screening argue that the quality of life will be less rich for PWDs, and the effort to eliminate disorders is actually a service to those individuals who would have otherwise suffered from physical impairment. The “quality of life” argument fails to see the valid and conscious social group of PWDs who, despite their disabilities, lead very successful and satisfactory lives. Moreover, as I have mentioned in a previous post, according to the social model of disability, life for a PWD is only as easy as his/her culture and physical environment permits it to be. Success is determined more by the circumstances in which one lives than by the condition of the body itself.
This issue has become a point of conflict between abortion rights activists and disability rights activists, and an uncomfortable gray area since, in general, neither party wants to encroach upon the basic rights of the other. In order to preserve the rights of women to choose and the rights of PWDs to exist, it’s crucial to change the fear of raising a child with a disability, or the fear of not being able to provide for him/her. The first steps, of course, include 1) changing the attitudes of the medical community (no more weeding out medical abnormalities), 2) erasing the stigma (of pity or alienation) from family and friends, which might influence a parent’s decision, 3) recognizing that the child is a person first, and that he/she has the potential to live a very content and healthy life, and most importantly, 4) working to change the environmental and social barriers that inhibit PWDs from reaching their full potential.