There has been much joy in the deaf community that the lives of a deaf family were dramatized in a feature length movie, CODA, and even more joy that it won the Oscar for Best Picture. However, there was some consternation in that community about how the lives of deaf people were depicted. An article in The New York Times (March 31, 2022, C1 and C4) cites the concern of deaf people that the movie depicts deafness as a handicap rather than as merely a difference.
Since the Americans with Disabilities Act of 1990, deaf people have professional interpreters available to them, so they no longer have to impose on a hearing child to perform this service as depicted in the movie. The movie suggests that deaf people are missing out because they can’t hear music, whereas this is a “fake issue” for most deaf people, according to Jenna Beacom, a deaf media critic and consultant for writers who include deaf characters in their work. She notes that many deaf people are competent and successful.
What’s more, deaf people have many compensations for the disability. They have a whole culture in addition to the culture that they share with hearing people. In the United States they have their own language, American Sign Language (ASL); a sense of belonging to a community of people similar to themselves in an important way; their own organizations, including a college; and their own history with a sense of solidarity with forbearers who met prejudice with social and political activism that has had some success.
Many people in other disability communities maintain, like those in the deaf community, that their lives shouldn’t be considered less valuable either to themselves or to the larger community, whether the disability concerns hearing, mobility, or learning potential. A friend of mine with mobility limitations refers those who can walk as “temporarily abled,” accurate for many of us, although we seldom can identify in advance to whom this applies.
Another consideration is that almost everyone is disabled in some ways, that is, most others are able to do what they can’t do. Unlike most people, I have a hard time remembering the faces of people I’ve meet only one or two times.
But matters may be worse for those who are deaf. The Iowa Head and Neck Protocols maintain that “Congenital hearing loss has the potential to negatively impact educational attainment, future employment, future income, use of healthcare systems, and life expectancy. For a child with congenital severe-to-profound [loss], the total lifetime cost of hearing loss exceeds $1 million.” It’s uncertain how much of this negative effect results from society’s failure to accommodate deaf people in education, employment, and healthcare.
Given all of the above, how should we evaluate the preference for a congenitally deaf couple to use pre-implantation genetic diagnosis (PGD) to have a congenitally deaf child, rather than one who hears normally? PGD uses in vitro fertilization to create a number of embryos whose genetic composition can be checked. This helps couples with a family history of some genetically-related diseases, such as Tay-Sachs, cystic fibrosis, and hemophilia, to avoid having an afflicted child. They can discard embryos that have genes for the disease.
Most parents want their children to share their culture and outlook, such as their religious views, political associations, social class, and culture, so it’s no surprise that at least some deaf parents want to have deaf children. But the children of deaf parents don’t always have congenital deafness. If deaf parents were to damage the ears of a hearing infant to make her deaf, they would have harmed their child and lose custody upon being caught. But they could use PGD to ensure that their child is deaf without harming anyone.
The only possibility of existence for a deaf child whose embryo was chosen after PGD included being deaf. Any hearing child of the couple would be a different person. If we think that deafness is a disability so horrible that it would be better not to exist, the child has been harmed. But deaf people and others with disabilities strongly denounce and any such view of their lives. So, it’s difficult to argue that the child has been harmed or its rights violated by being chosen to exist.
Given the extra costs associate with being deaf, we may think that deaf parents have harmed society by deliberately producing a deaf child. But we don’t blame people who claim to be congenitally obese when they have children who will likely share their parents’ physique and associated health challenges and extra costs. Smoking cigarettes also imposes costs on society, but we don’t make it illegal. So perhaps we shouldn’t condemn congenitally deaf parents who want to use PGD to have deaf children.
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