In ‘Genetic Dilemmas’, Dena Davis posits that every child has a right to an open future. If a parent makes a choice that imposes on that right, they are violating the future autonomy of their child. Davis uses this argument to oppose using reproductive technology to select for deafness. In this paper, I will argue that choosing for deafness is not morally wrong as Davis suggests as it is not the deafness itself that is imposing on that child’s future opportunities, but rather the social environment that marginalizes and misunderstands people with disabilities.
Davis proposes the right to an open future as a potential solution to ethical and moral challenges that arise from genetic counseling and testing. Genetic counselors place great value on patient autonomy, but taking a value neutral stance on complex decisions such as deciding whether or not to abort because your child has Down Syndrome can be concerning. If the parent’s right to choose is held above all other factors, that leaves little space for the rights and interests of the future child. The right to an open future argument aims to resolve the conflict between the best interests of the parent and the best interests of the child (Davis, 2000). Children have rights that they cannot exercise, such as the right to reproduce, but they should be able to exercise those rights in the future, and parents should not “make decisions about their children that severely and irreversibly restrict their right to an open future” (Davis, 2000: 30).
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The way that Davis applies the right to an open future argument to choosing for deafness is misplaced. She argues that selecting deafness violates the child’s right to an open future because it will “constrain the ability of their children to make a wide variety of life choices when they become adults” (Davis, 2000: 84). A major objection to this argument is that it is not clear that deafness limits a child’s future options to the degree that Davis suggests, especially if deafness is considered a culture. It is problematic to view being deaf as an intrinsic lack since there are many rewarding experiences associated with it such as a rich culture and a distinctive form of communication. Selecting for deafness does give “limited options to move outside that culture” (Davis, 2000: 82), but a deaf child may have unique opportunities that a hearing child may not, and being born deaf does not impact significant future choices such as the right to reproduce or the right to choose your own religion. If you are born gay, you are not able to move outside LGBTQ+ culture, but that does not mean you are unable to pursue a fulfilling and autonomous life. Just as being gay is not simply the inability to be straight, being deaf is not simply the inability to hear. Many of the factors that may inhibit a deaf child’s right to an open future is not a consequence of the deafness itself, but of a society that does not accommodate and heavily discriminates against people with disabilities.
Another objection to Davis’ argument is that many of the challenges that deaf people face are socially imposed, so her logic that selecting for deafness is deliberately limiting a child’s future options does not hold. Davis states that her criticism is not towards those who decide to have children under nonideal conditions because they have no control over “the world they offer their children” (Davis, 2000: 84). This concept should apply to Deaf people as well. Many disability rights activists subscribe to the social model of disability, which states that societal oppression is what is disabling, not the disability itself (Shakespeare, 2008). Davis argues that there is “evidence that deafness is a serious disability” because it is associated with lower incomes, higher unemployment rates, and poor literacy (Davis, 2000: 72). I do not see the connection between not being able to hear and a high unemployment rate. Most people would disagree if you suggest that African Americans have a higher unemployment rate because of the color of their skin. If we were to view deafness as an oppressed minority group, which many disability rights activists and Deaf people do, we may conclude that these statistics are probably due to job discrimination and poor access to high quality education.
Davis might counter my argument by saying that even if you remove societal barriers, Deaf people will still have to overcome challenges, and there are certain careers and tasks you cannot perform without being able to hear, so choosing for deafness would still be in violation to the right to an open future. I would argue that no individual, disabled or not, is able to live a life of boundless opportunity. Parents can make choices postnatally that constrain their child’s future, such as raising their child under a strict religion or with a particular gender identity. In addition, being able bodied does not necessarily mean you can go into any career or perform any task you like. Being born of shorter stature prevents people from becoming models in an industry that places value on tallness, but shorter people still have many other enriching career options available to them. People who are born deaf have also never experienced being able to hear, so pursuing a career that requires hearing, like being a music teacher, will probably not end up being something they would gain fulfillment out of or wish to do.
Davis also suggests that selecting for achondroplasia is not morally wrong because “it does not seem that momentous pieces of [their] adult life will be foreclosed by that decision” (Davis, 2000: 84). Achondroplasia is a much different disability than deafness, but the inequities faced by both groups are socially imposed, and the condition itself is not what is constraining them. It is debatable why selecting deafness is morally wrong for Davis while she cannot come to a concrete conclusion about selecting for achondroplasia. In a case of deaf parents wanting to have a deaf child, they should be able to have a child that they are going to better identify with, and who better than them to make that choice if they are the only ones that truly understand the lived experience of being deaf.
Being able to select for deafness is not to say that we should encourage parents to have a child with a disability, or that selecting for deafness is always morally permissible. Historically, the bodies of disabled people have been problematized and labeled as something that needs to be fixed. This mindset dominates modern culture and leads to the oppression of people with disabilities.There are many reasons why parents should and should not select for deafness, but it is not a moral harm if they choose to do so under certain circumstances. We need to make an effort to better understand the complex relationship with disability and society. There are many disabilities that cause pain or a shortened lifespan that would violate the right to an open future because that child may not even live long enough to exercise that right. Despite this, more caution should be used in considering cases like deafness because failure to examine the social context of disability will mistakenly lead to pressure being put on parents not to select for deafness, when the real problem is embedded in a culture that tends to devalue unique bodies.
Davis argues that using genetic technology to select for deafness violates the right to an open future because you cannot move outside deaf culture and your future options will be more limited. This argument is contingent on deafness being limiting by virtue of the body, but if it is society that is disabling, not the disability itself, then we cannot come to the conclusion that selecting for deafness is a moral harm. Parents are not deliberately constraining their child’s future options by selecting for deafness if they have no control over the marginalization that people with disabilities face. Deafness is a permanent condition, but it does not significantly impose on a child’s future autonomy. In order to justify what types of bodies are right or wrong to bring into this world, we should consider the lived experiences of the individuals with those bodies as well as the social factors that may influence their opportunities and quality of life.
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