Eugenics Isn’t Over. It Never Stopped.
The Erasure of Disabled People
Eugenics is based on the idea that one group of people portrays superior qualities worth preserving, over another. It is most often associated with Nazis, who attempted to justify their slaughter of Jewish people, disabled people, and other “inferior” minority groups. When people hear the term eugenics, it is commonly thought of as a problem of the past, that we no longer need to worry about. That may be true … if you’re a healthy, white, heterosexual male, then yes, no-one is likely to try to erase your existence. However, if you’re a woman, a person of color, Black, or disabled, well, that’s another story.
Dorothy Roberts is an American Scholar and social justice advocate, and the author of “Killing the Black Body: Race, Reproduction, and the Meaning of Liberty.” Roberts makes several references to the existence of Black bodies when it is convenient for society, or for profit, but notes that, otherwise, there are limitations put on Black people’s existence and childbearing. Quite frankly, Black women are criminalized for wanting to have children, and all throughout their pregnancies. A good representation of this criminalization would be the 2019 case of a pregnant, Black mom in Alabama, Marshae Jones, who was shot in the stomach while five months into her pregnancy. As the fetus did not survive, Jones was charged for the death of her unborn baby. The officers made an official statement that “the only true victim in this was the unborn baby.” I guess the state forgot about the mother who lost her own child, and suffered a gunshot wound, as if she was not harmed by this trauma at all.
Roberts states,“We must acknowledge the justice of ensuring equal access to birth control for poor and minority women without denying the injustice of imposing birth control as a means of reducing their fertility.” Through my interpretation of this quote, I think it’s fair to say that Black women having access to birth control is a double edged sword. On the one hand, having access to birth control methods promotes a woman’s right to choose. However, Black women have often been coerced into permanent methods of birth control that forever prevent them from having biological children. Throughout history, the more children an enslaved Black woman could produce, the more profitable she was to white people, so her reproduction was encouraged. However, in today’s society, and through the use of high technology reproduction, Black bodies and traits are being discouraged in conversations of reproductive justice.
Roberts’ analysis regarding controlling Black reproduction also applies to people with disabilities. Methods of birth control that are imposed upon Black women and people with disabilities, or otherwise “undesirable” traits, are forced sterilizations, hysterectomies, and tube tying. In the past, these have been done to women under circumstances that are completely irrelevant to the procedures that are forced on them by authoritative figures. In Roberts’ text, she references a doctor who was “tired of paying for illegitimate children,” and if the mother didn’t “want this sterilization, to find another doctor.” Controlling who gets to have children, especially if they are seen as societal ills or having non-desirable qualities, promotes a eugenics point of view. Women who were institutionalized either in prisons or in psychiatric institutions were considered to be vulnerable populations that were more susceptible to coercion and forced methods of birth control.
Gene altering therapies that look to eliminate certain groups of people are an ethical disaster waiting to happen. Essentially, the original thought behind the concept of gene altering therapies was that families with a history of serious or potentially fatal medical conditions could have their embryo tested in and created in a lab, so that they can produce a healthy child without these serious conditions. However, this works as a form of eliminating or erasing their chances of having a child with any number of conditions, some of which are not what the technology was developed for in the first place. Genetic conditions can range anywhere from Kawasaki Disease and Tay-Sachs, to having a familial allergy to a walnut. In other words, the “bad” or “diseased” embryos are simply discarded. Think about that. In whose eyes are these embryos diseased? When is it considered not worth moving forward with the implantation of that embryo? This all depends on who is pushing their agenda forward, and not everyone has the same end goals.
Dr. Jeffery Steinberg, the director of The Fertility Institutes in New York, sees no issue with providing and pushing forward this technology, and even went as far as to state, “Listen, this is something that people are interested in, causes no harm, and makes people happy.” But, it is doing harm. It is harming not only the embryos that were discarded because they were “diseased,” but also the people living with the conditions that doctors like Steinberg are actively trying to eliminate. Does someone with Down Syndrome consider their life not worth living?
Eugenics based ideas have not faded in today’s modern society. I had a professor who felt compelled to share his personal point of view, that “people with disabilities would be better off if they didn’t exist.” I’m disabled. Would I be better off if I didn’t exist? I would sure hope not. Do I have a life worth living? Well, yes, I like to think so.
So, when people state that this technology “does no harm,” I would suggest that this simply isn’t true. It does harm people. I know I have been harmed by it, and I am only one of many who value the life they have and have the ability to see the potential damage this technology can inflict.
My existence may be inconvenient for you, but that doesn’t mean you get to erase me.
As disabled bodies are already seen as expendable, some might question, what is the harm in completely eliminating them from society? Elsa R. Sjunneson, a deafblind disability activist, argues that there is a “fundamental disregard for disabled lives” throughout society, and to some, there is nothing but good that can come from stating that a disabled person’s quality of life is so poor that they should wish to be dead rather than alive.
Sjunneson and I have something in common. She states, “I want to live. I deserve to live. I have so much more to give this world with my words and my work, with stories that I have yet to write, with essays I have yet to tell.” We both value our disabled lives, and have a lot to contribute to this world, if only given the chance.
And, of course, the primary issue with designer babies is not just that of eliminating certain medical conditions or intellectual or physical characteristics that may develop as a result of these conditions, but that the practice doesn’t end there. Indeed, the potential to choose the sex, alter the eye color, skin tone or other characteristics of a baby poses endless ethical dilemmas and is downright frightening.
Roberts acknowledges the dangers and fears of these types of technologies, noting that “America’s recent eugenic past should serve as a warning of the dangerous potential inherent in the notion that social problems are caused by reproduction and can be cured by population control.” There is a difference between attempting to edit the genes in a person to make someone healthier or to save their life, and actively looking to erase qualities or characteristics of an embryo through gene editing for reproductive purposes.
By no means is IVF or any sort of this genetic testing and altering inexpensive. Because of the financial component, there are limitations as to who has access to this technology. This, in turn, leads down a dangerous path of pushing forward and promoting one social class, and one race. Although more people of color are starting to use these technological resources and IVF, these technologies are portrayed and associated with whiteness. The stereotypical blue eyed and blonde haired baby is the face of these technologies.
I’ll leave you with one final thought: If our society and the medical profession continue to push forward these types of technology, will disabled lives exist in the future — or will genetically modified babies become commonplace?
