Bioethics and the disability community have always had a strange and uncomfortable relationship. That is because many of the mainstream controversies that define modern bioethics have a direct impact on people with disabilities: specifically, the use of technology to eliminate disabilities and questions surrounding genetic diversity.
Genetic diversity and disability
New reproductive technologies often appear to clash with disability rights activists. This clash appears to be connected to the philosophical notion of vulnerability and power relations in any given culture. In other words, we have decided as a culture to place value on one’s own ability to overcome adversity and challenges—and we see any residual unhappiness as a failure on the part of whoever is suffering it.
So, if a person is living out a life that is making them miserable, they are failing personally. By extension, if a person is living out a life that onlookers believe to be miserable, they are failing personally. This affects people with disabilities, because ableist thinking causes most people to believe that life as a person with disabilities is simply less valuable and less worth living than “normal” life.
On the other hand, the trend of inspiration porn is equally reductive. This mode of thinking reduces the lives of people with disabilities to lionized fantasies for consumption by the able-bodied. This kind of thinking overvalues suffering and the idea that being vulnerable to suffering is equivalent to possessing strong moral fiber.
Where does the conversation about bioethical policy on reproductive technologies come in?
Genetic diversity: conserving it, imposing it, or eliminating it?
So, should we base bioethics or the decisions of which reproductive technologies are morally defensible on how much we value suffering? If we as a culture decide that there is inherent value in genetic diversity, including the presence of disabilities which are passed on from one generation to the next, will our bioethics say that we should conserve what genetic diversity exists? If genetic diversity is slowly decreasing over time due to the voluntary adoption of new reproductive technologies, should we actively impose genetic diversity on some members of society?
In general, many people agree with the idea that our current level of genetic diversity, including disability, should be conserved. However, many also believe they should have access to technologies that eliminate disabilities in their own lives, and few argue that genetic diversity in the form of disability should be imposed. The net result of this seems to be lip service to the idea of conservation of genetic diversity with actual intent to eliminate it.
Disability culture and life worth living
Although it is unrecognized by many, disability culture exists. This leads to the question of whether the birth of fewer and fewer people with disabilities won’t lead to the extinction of the culture. Naturally there are many disabilities that occur later in life or can’t be “repaired,” at least for now. However, the question still stands, especially since it is safe to assume that technology will continue to develop.
Deaf culture provides a great example of disability culture, and it also highlights the way that technology can be perceived as a direct threat to cultural survival. Deaf culture and deafness itself is associated with its own language. The uniqueness of this phenomenon is important, and helps explain why so many in the community have protested the cochlear implant, for example, as a harbinger of cultural extinction for the Deaf.
In the larger disability community it feels pretty clear that most of us do not care for the idea that we’d be better off dead, yet wrongful life suits persist in many states. The idea of a wrongful life suit being filed on behalf of a biracial or gay child is abhorrent to most people, yet wrongful life suits were created to be filed on behalf of disabled people.
Is the natural extension of these ideas necessarily that people with disabilities should oppose all reproductive technologies? Even the presence of a disability culture doesn’t settle the ethics of prenatal testing, for example, although it does add a great deal of depth and texture.
There are no easy answers when it comes to reproductive technologies and disabilities. The desire to emphasize individual choice, privacy, and physical autonomy over a collective bioethics can lead us to adopt a pro choice position, but this doesn’t help us understand how many of our decisions are driven by ableist culture.
Will use of reproductive technologies eliminate disability culture? Or will disability culture continue to thrive in a climate of greater acceptance as awareness of what living with disabilities is really like grows?