Gene-Editing Technologies: Deaf Power and Resistance

1. Introduction: On Valuing Deaf Lives

The Deaf community has contributed to the value of my life immeasurably. I’ve made friends with deaf people who have shared perspectives with me that I had never considered as a hearing person[1]. After being admitted to Gallaudet University, I learned more about the obstacles and challenges that deaf people face every day. Issues such as language acquisition, quality of education, equal access to communication, and employment opportunities are among the primary challenges confronted by the d/Deaf people and the Deaf community. I’ve learned that deaf is not a disability and, perhaps most importantly, I’ve learned that the Deaf community has the power to confront these issues in ways that have been empowering and successful.

While immersed in the enjoyment of learning about and appreciating Deaf culture and ASL, the issue of biotechnology in the form of gene editing came to my attention. Developments in the field of genetic engineering have caused much concern within the Deaf community. It is now possible to identify at least 67 deaf genes through genetic diagnoses[2], and it is possible to alter the genetic composition of embryos and fetuses[3]. Although the technologies could be harnessed by Deaf parents to ensure that their children will be deaf, this would be the least likely use of the technology[4]. The problem, as it was explained to me, is that more than 90% of deaf people are born to hearing parents. Hearing parents are often uneducated about how to raise deaf children. They are not aware of the Deaf community nor of any favorable valuations of deaf lives. They are, more often than not, immediately confronted by the dominant medical perspective of deafness, which is pathological and audistic[5], and are convinced that their deaf children need to be fixed. The perception of deafness as a deficit rather than a positive quality is an almost universally held audistic paradigm that has oppressed deaf people throughout history.

When the dominant ideology that deaf is a negative meets biotechnology, the result is the attempt to resolve the “problem” of deafness. What this means, in the case of potential parents who want to have children, is that they would likely not blink at either the suggestion or the requirement that their unborn baby’s genes be manipulated to ensure that the baby would not be born deaf.

Since a majority of the members of the Deaf community are deaf people born to hearing parents[6], it logically follows that if hearing parents prevent deaf babies from being born, that the Deaf community will be substantially and negatively impacted. The world could lose cultures and languages that have enriched the lives of both deaf and hearing people, whether they are aware of it or not. Deaf lives benefit the world and to appreciate the value of deaf lives, we need a paradigm shift.

My question is about the dynamics of power between dominant groups and subcultures within the same society. How much power, if any, do subcultures have within the dominant culture? Are attempts to resist oppression or significantly change the paradigm limited and futile? If power is negotiated by discourse and consumerism, what are the boundaries? The focus in this paper is the relationship between the Deaf community and both popular culture and the medical/scientific communities. What is at stake in the discussion is the possibility that deaf lives, their cultures, and their languages could be permanently edited out of existence. It is not only deaf lives that are on the chopping block, but also the potential lives of any genetic variation (often referred to as “mutation”) that is not considered “normal.” What makes this analysis of the power between cultures particularly complicated is that this issue of biogenetic research is one of global socio-economic concern.

2. Foucault & Jankowski: A Framework of Understanding

In the article, “The Birth of Social Medicine,” Michel Foucault, Philosopher and social theorist, discusses the development of the medical practice from the 1700’s to explain the medicalization of the body as it progressed in Germany, France, and finally in England. During the 1800s, the bodies of the working poor became subject to medicalization for means of control and power. Foucault explained that wealthy classes were concerned with contamination and contagion from the poor who could not afford medical care. Thus, welfare was created to subject poor people to mandatory reporting of illness, medical intervention, and mandatory vaccination. Of interest to Foucault, aside from relations of power in general, was how to explain anti-medical insurgencies. The domination, control, and subjugation of the working poor by medicalization can be understood by unpacking the historical socio-political relations of power.

Foucault’s explanation of the development of biopolitics is useful in understanding the current structures of power in the medical system in the US. Vaccinations, for example, are commonly accepted as necessary for both one’s own health but also the health of the society. If one does not have the proper vaccinations, they will not be admitted into school. I have noticed that many people consider parental resistance to vaccination to be child abuse and neglect and that it is considered abnormal to reject even the flu shot. Although in the U.S. one can still argue for an exemption from some of the rules by citing religious objections, doing so is met with heavy criticism from popular culture. It does seem to make good sense that one should be vaccinated against diseases such as measles. However, individuals subject to such dominant ideologies no longer have much power to choose otherwise.

Foucault objects to the argument that one can view medicalization as merely a market relation between doctor and patient. Modern medicine, he contends, has evolved as a social medicine. He states, “The body is a biopolitical reality; medicine is a biopolitical strategy.”[7](p.137) If power is what is at stake with the subjugation of body to modern medicine, then anti-medicalization resistance would be a political act. Resisting vaccination, either for ourselves or our children, has political consequences.

Foucault’s analysis of the history of medicine shows that individual concerns for health and wellbeing were never the primary concern in the development of social medicine. If the socio-economic and political interests of the state and the wealthy are most important, then concerns of individuals that are at odds with social constructs are a potential threat to the establishment.

Take the case of deaf children. Parents often allow the intervention of medicine to “help” their children by subjecting their bodies to the latest “technologies” which often involve invasive and irreversible surgeries and a possible lifetime dependence on medical establishments. We can see that this type of conformity is expected by considering the results when parents resist the subjugation of their children’s bodies to science and medicine. Parents who resist attempts to “fix” deaf children are met with hostility and often accused of neglect or abuse. There have been a few cases in which doctors have charged parents with neglect or contacted Child Protective Services when parents have decided against the use of biotechnology in the form of cochlear implants.[8] If parents are currently expected to ensure that their children use technology to conform to hearing ideologies, then it is not difficult to imagine that societies would expect parents to use technology to prevent deaf babies from existing in the first place.

3. Who has Power?

Foucault’s account of the biohistory of medicine helps us to see that resistance could be vital to subverting the oppressive power of medicalization. Although the Deaf community has had some success in resistance to medicalization, the question of resistance looks a bit different in the case of gene editing technologies. Since these technologies have been (or are expected to be) commodified for use in reproduction, parents have some power in the discourse as potential consumers. It seems possible that educating mainstream culture about the value of Deaf lives may prevent hearing parents from aborting deaf babies or from allowing doctors to force their children’s bodies to be medicalized. However, if given a choice between having a deaf baby or manipulating the genes of the baby so that it would be hearing, it seems more likely that they will choose the latter. So, if the power to decide what is best for deaf babies and, by extension, the Deaf community, is left in the hands of hearing parents, it seems that the potential to be born deaf in the future would be highly improbable.

Research in the fields of Neuroscience and Linguistics has shown that deaf babies need immediate access to natural signed language just as hearing children need immediate access to spoken languages[9]. Much work has been done to educate hearing parents of deaf babies so that they will be aware of the child’s need for some argue, the right for full language access and the importance of early language acquisition to prevent developmental delays socially, emotionally, and academically[10]. Historically, it was commonly held that signed languages were inferior to spoken languages and that deaf children must be made to be hearing to succeed in life. The research and evidence to the contrary have emboldened and inspired the Deaf community to confront the audistic views of popular culture and launch strategies to educate parents and try to encourage them to be a part of the Deaf community, for the sake of the deaf child.

Jankowski’s Foucauldian study of the power dynamics between the Deaf community and mainstream ideologies focuses on the “rhetoric of normality” and the counter-rhetoric from the Deaf community.[11] Jankowski considered the strategies employed by Deaf in the US from the late 1700’s to challenge and overcome the negative perception of deaf people in society. She explained that deaf were segregated from the community early on and had fewer rights than hearing people. Deaf were thought to be incompetent in general and possibly burdensome to society. It was not until the American School for the Deaf (ASD) was established in 1817 that education for deaf people was considered useful. The school, Jankowski concludes, made the emergence of Deaf community possible.

A strong Deaf community is problematic for mainstream society because of opposing ideologies. For Deaf, the Deaf community with ASL at its core is key to success while to those who think that deafness is a problem to be fixed, integration into mainstream, or, becoming like hearing, is key to success. The two sides of the equation of the “rhetoric of normality” can be summarized as “Deaf Can” on one side and “deaf can’t” on the other. Jankowski recognized that since the inception of Deaf community, Deaf social movements, such as the creation of the National Association of the Deaf in 1880 and the Deaf President Now movement in 1988, have created significant changes of perception of Deaf people in dominant society. Deaf continue to challenge the oppressive audistic paradigm with the counter-narrative “Deaf Can.”

The Deaf community has established itself as a powerful force that successfully confronts social injustice at all levels of society. However, the threat of the science of gene editing to the existence of both deaf lives and Deaf community causes one to wonder whether ‘Deaf Can’ social movements will be enough to prevent the loss of both. What Deaf are up against with the development of gene editing technologies is the power of a global scientific/medical revolution that is worth billions[12] and many scientists from the international community who may not be interested in the issues of social justice, equity, cultural diversity, ethics, or the intrinsic value of diversity.

4. A Glimpse of the Dominant Paradigm in the Field of Biogenetic Research

The National Academy of Sciences (NAS) and the National Academy of Medicine’s Human Gene Editing Initiative organized a global summit in Dec. 2015 to discuss the scientific, ethical and governance issues associated with human gene-editing research.[13] Participants included multicultural perspectives from a variety of “stakeholders” including bioethicists, and other specialists in the fields of medicine, social sciences, and public policy. Ruha Benjamin addressed the summit, offering a “disability approach to genetic ethics.” Benjamin has researched the social impact and meaning of gene editing by examining the relationship between technological innovation and equity as it relates to socio-economic issues, including disabilities. He suggests that we need to “interrogate equity” to ensure that certain lives are not “edited out of existence.” Interrogating equity means asking the questions about who has power. Benjamin states that “…the work of interrogating equity serves as a vital framework for democratizing science more broadly because of the way it causes us to wrestle with some of the foundational assumptions of biotechnology…”[14] (p. 48) Benjamin asserts that gene editing techniques are “seeded” with economic and social values and interests and so we must ask questions such as, “Who designs the research?” “What are the guiding ideologies and assumptions?” and that to “democratize science,” the discourse about the direction and design of technological “breakthroughs” needs to include diverse voices “…at the table and not just on the table….”[15] (p. 50)

To those who are not acquainted with the severity of the issue at hand, it may seem as though what Benjamin has stated is not such a big deal. It may seem obvious that d/Deaf, in addition to disabled people, should be included at the table for discussion. However, during my research of the current academic debates about the ethics of biogenetic technologies, I’ve seen numerous examples of the pervasive “normative” ideologies. Bold and unapologetic arguments are made against the belief that deaf lives have any value or worth. To them, it seems, the loss of Deaf culture and languages would not be the loss of anything worth saving. They argue that deafness is a harm to either the child or society or both. To them, any argument of the value of biodiversity in the form of deafness will not have much merit. In other words, decisions about the lives of Deaf people continue to be made at the expense of the lives of deaf people because of dominant audistic ideologies.

In the article, “Genetics and Education: The Ethics of Shaping Human Identity,” Vardit Ravitsky argued that parental authority to make genetic decisions for their children should be limited, but only insofar as their choices did not challenge the ‘normative’ discourse. She acknowledged and quickly dismissed the validity of the Deaf community and argued that it would be unethical to cause deaf lives to exist. She wrote, “Just as parents should not be allowed to intentionally raise illiterate children who will not be able to become effectively integrated into other cultures, so they should not have the liberty to make genetic choices which will result in children with limited physical or cognitive abilities.”[16] (p. 315) Ravitsky believes that deaf and disabled are the same and that ‘disabled’ is a genetic problem rather than a social construction. For Ravitsky, deaf is not more than a “limited physical ability” equal to “limited cognitive abilities.” She argues that deafness is a harm to children because they may be unable to leave the Deaf community.

Although Ravitsky seeks to undermine to the power of the Deaf community and discredit the lives of Deaf and disabled people, her article is neither unique nor profound. This article, published by The Mount Sinai Journal of Medicine in 2002, is only one example of many that show that the dominant ‘normative’ ideology is that deafness is a disability and that disability is a pathology.

5. Showing up at the Table: Deaf Strategies

The Deaf community has been actively engaged with this problem at many levels. At the academic level of social discourse, the phrase, ‘Deaf Gain’ has become a popular buzzword. In the article, “Reframing: From Hearing Loss to Deaf Gain,” Dr. H-Dirksen Bauman and Dr. Joseph M. Murray discuss ‘Deaf Gain’ as a way to reframe the concept of ‘normal.’ They discuss the history of the concept of normal and its impact on deaf people. They write, “Deaf Gain is defined as a reframing of “deaf” as a form of sensory and cognitive diversity that has the potential to contribute to the greater good of humanity.”[17] They consider the extrinsic cultural, linguistic, and cognitive value of deaf lives and conclude that deaf lives benefit humanity in a variety of ways. In other words, Deaf should be seen as a gain rather than a loss. Not only is it true that ‘Deaf Can,’ but ‘Deaf Can’ in unique ways that are beneficial to the world.

In the policy arena, there are advisory committees that include bioethicists who attempt to have a direct influence on the policies and practices of scientists and the medical community. It is in this arena of public discourse where scientists, policymakers, doctors, and philosophers negotiate meaning and power, perhaps.

Dr. Teresa Blankmeyer Burke, who is both a Deaf Philosopher and a Bioethicist, does a considerable amount of work to educate, inform, and transform dominant ideologies to include Deaf perspectives in consideration of biotechnologies, including the issue of gene editing. In her chapter of the book, “Deaf Gain: Raising the Stakes for Human Diversity,” Dr. Burke considers the issue of Deaf Gain regarding the intrinsic value of deaf lives for the sake of human diversity. Burke writes, “…the move to eradicate deafness, and by extension, deaf people, relies at least in part on the claim that to be deaf confers much more disadvantage than gain.”[18](p.16) She concludes that it is not evident that it is better to be hearing or worse to be deaf, thus transferring the burden of proof to those who seek to fix the “problem” of deafness.

Additionally, mainstream American culture has been increasingly exposed to positive role models from the Deaf community who often use their platform of success to increase awareness of the Deaf community and ASL. Nyle Dimarco, a popular Deaf model and dancer, has possibly shattered ‘deaf can’t’ notions held by thousands of people just by his successes in popular culture.

Conclusion: Is Social Discourse Enough?

By these and other social movement strategies, audistic ideologies are being challenged and redefined, and power is being redistributed. Deaf are, in Jankowski’s words, “encouraging society to accept diversity.”[19](p. 164). To the extent that the medical/scientific community is made up of people from mainstream culture, these strategies make sense. However, to return to the issue of power, we cannot overlook the economic interests that control the direction and application of scientific research. Genetic editing is a “cutting edge” global multi-million-dollar technology that is funded primarily by biopharmaceutical companies.

Further analysis of the relationships between researchers and stockholders may reveal alternative ways to gain enough power to influence the direction of the development of the technologies. However, it is more than unsettling that the future of our genetic biodiversity is in the hands of a market-driven medical perspective. Although discourse and resistance are strategies that are, in Foucault’s words, transmitting and producing power, the paradigm shift that we need in the face of the threat to the genetic structure of our bodies, is one that values human life, any variation of human life, more than it values economic gain.

Notes

[1] ‘Hearing’ as opposed to ‘Deaf’ as cultural categories. See Bauman, Dirksen. “On Becoming Hearing: Lessons in Limitations, Loss, and Respect | Dirksen Bauman | TEDxGallaudet.” YouTube. March 06, 2015

[2] Shearer, A. Eliot, and Richard J.H. Smith. Current Opinion in Pediatrics. December 2012.

[3] The National Academies of Science, Engineering, and Medicine. (2017, September 18). International Summit on Human Gene Editing

[4] Burke, T. B. (2011). “Quest for a deaf child: Ethics and genetics”

[5] The belief that to be hearing is superior to being deaf. See Audism Unveiled. Directed by Ben Bahan, H-Dirksen Bauman, and Facundo Montenegro. Dawn Sign Press, 2008. DVD. September 28, 2017.

[6] “Quick Statistics About Hearing.” National Institute of Deafness and Other Communication Disorders. December 20, 2017.

[7] Foucault, M., Rabinow, P., & Faubion, J. D. (2002). Power. London: Penguin Press.

[8] For one example, see Howelett, E. (2017, November 13). Deaf News: German doctor takes parents to court to allegedly ‘force’ them to give child cochlear implants. Retrieved March 26, 2018, from http://limpingchicken.com/2017/11/13/deaf-news-german-doctor-takes-parents-to-court-to-force-them-to-give-child-cochlear-implants/

[9] Petitto, L. A. (1994). Are signed languages “real” languages? Evidence from American Sign Language and Langue des Signes Quebecoise. McGill University.

[10] Grosjean, Francois. “DSDJ:: Deaf Studies Digital Journal.” Deaf Studies Digital Journal:: ASL: The Right of the Deaf Child to Grow up Bilingual.

[11] Jankowski, Katherine. Deaf Empowerment: Emergence, Struggle, and Rhetoric. Washington, D.C.: Gallaudet Univ Press, 1997.

[12] Sherkow, Jacob S. “How Much Is a CRISPR Patent License Worth?” Forbes. February 24, 2017. Accessed April 15, 2018. https://www.forbes.com/sites/jacobsherkow/2017/02/21/how-much-is-a-crispr-patent-license-worth/#5f76f0dd6b77.

[13] The National Academies of Science, Engineering and Medicine. (2017, September 18). International Summit on Human Gene Editing

[14] International Summit on Human Gene Editing. The National Academies of Sciences, Engineering and Medicine. September 18, 2017. Benjamin, Ruha. “Interrogating Equity:  A Disability Justice Approach to Genetic Engineering.” 48-51

[15] Ibid.

[16] Ravitsky, Vardit. “Genetics and Education: The Ethics of Shaping Human Identity.” ScholarlyCommons. October 2002.

[17] Bauman, H-Dirksen L., Ph.D, and Joseph M. Murray, Ph.D. “Reframing: From Hearing Loss to Deaf Gain – DSDJGallaudet.” Deaf Studies Digital Journal.

[18] Burke, T. B. “Armchairs and Stares: On the Privation of Deafness” Deaf Gain: Raising the Stakes for Human Diversity. Bauman, H-Dirksen L., and Murray, Joseph J., eds. Minneapolis: University of Minnesota Press, 2014.

[19] Jankowski, Katherine. Deaf Empowerment: Emergence, Struggle, and Rhetoric. Washington, D.C.: Gallaudet Univ Press, 1997.

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