Deaf Culture: Biotechnology's Role and Representation in Art

INTRODUCTION

Unfortunately, I was unable to attend any of Linda Weintraub’s workshops, so I will be living vicariously through my classmates’ posts. Despite my absence at these events, I do have a topic I would like to delve into that is 1) near to my heart and 2) related to components of this course: Deaf culture and technology’s/biotechnology’s role within it. This topic is rarely discussed in hearing education, and I am hopeful it will shed some light on an arena you may have been otherwise unfamiliar with. In order for you to understand technology’s/biotechnology’s relationship with Deaf culture and its associated art, some background information is required (the biotech and art component does come up eventually, I promise!). However, it is impossible to touch upon all the facets of Deaf culture in this short word count. If you are interested in learning more, please consider looking into some of the additional references included at the end of this post.

BACKGROUND

I have been studying American Sign Language (ASL) and taking Deaf studies courses for approximately four years. As an anthropology major, I have found myself drawn to the cultural intricacies of the Deaf, a people I did not realize had their own separate and defined culture until I was exposed to it in my first ASL course (whenever you see a “D” in “Deaf,” that is referring to the culture/someone who identifies as culturally Deaf rather than “deafness” in general). Deaf culture is collectivistic, and sign language is a crucial and cherished part of it. For decades, the hearing majority has marginalized the Deaf, seeking to find a “cure” for what is considered abnormal and a disability (this is known as the “medical view” on deafness). Depriving Deaf children of sign language has been the norm; Deaf children have been forced to speak (known as “oralism”) and use “lipreading” despite the fact that 1) these are ineffective/less effective communication strategies compared to sign language and 2) lipreading only allows one to comprehend approximately 30% of what is being said. A central pillar of Deaf culture is that deafness is not something that needs to be fixed or eradicated; it is embraced and something the community is proud of. With technological advances, the medical view of deafness threatens to eventually destroy Deaf culture. 

THE MEDICAL VIEW

Currently, two “cures” for deafness are in existence: cochlear implants (CIs) and genetic manipulation/gene therapy. (It must be noted that cochlear implants are not an actual cure no matter what people may say. It does not make the Deaf individual a hearing person who hears the way those who were born hearing do). Without going in-depth into the procedure, CIs are placed surgically into the brain. This internal device uses an external portion of the implant to convert electrode pulses into sound the brain can comprehend (go to this link for an in-depth explanation). This procedure is very dangerous, and doctors frequently present it as a perfect solution to the “deaf problem.” However, side effects can include paralysis and death. With 90% of Deaf children being born to hearing parents, many parents opt into this surgery because they are not exposed to Deaf culture. Additionally, genetic manipulation has made it possible for some deaf-associated genes to be selected against (it is only a matter of time until all deaf genes are found). Some forms of gene therapy may, in the future, allow “deaf genes” to have their phenotypes changed once they are expressed in an individual (biotechnology already exists that can do this in mice!). With genetic manipulation becoming more advanced, the Deaf community faces the possibility of disappearing.

DEAF ART RESPONSES: COCHLEAR IMPLANTS

As a visually centered community, Deaf culture uses many forms of art to discuss issues of oppression like those previously mentioned. Deaf culture sees art as a way for messages to be spread, culture to be preserved, and change to be made. Below you will find an art piece created by UCLA’s very own Benjamin Lewis (who is Deaf) and colleagues (this video cannot be found elsewhere as it is on a private account; however Ben provided me with permission to share it with this class). (Video spoilers below the link.) 

(NOTE: the blog won't allow me to insert any videos or images directly, hence links are being used.)

VIDEO: My Son is Deaf - Finally (briefly shows graphic content of surgical procedures – warns you prior to this)

This video manages to take the science and technology behind CIs and artistically frame it in a way that allows the hearing audience to see the horror of the procedure. I would be surprised if you were not at least slightly taken aback by the idea of making a hearing child Deaf just for the sake of the parents - the Deaf community feels the same horror when Deaf children are forced to get a CI by their hearing parents. Frequently, the feelings we have surrounding the “abnormal” are examples of instinct blindness – we think they are the only way to perceive this subject matter. Yet, this art piece is a prime example of the importance of understanding the scientific and cultural perspective of issues like these. Other art mediums are also used to discuss the CI technology subject including the artwork of Chuck Baird, a De’VIA artist (Deaf View/Image Art). 

​DEAF ART RESPONSES: GENE THERAPY

Focusing on Deaf artwork related to genetic manipulation/gene therapy, Deaf people in Britain created a poignant art piece with some similar qualities to Ben’s. (Video spoilers can be found after the link.) 

VIDEO: The End

The biotech concepts presented in this video are not impossible. In fact, they could (in some senses) easily become a reality in our lifetimes. Cas9-sgRNA is currently undergoing trials with mice where it has been successfully used to limit and correct hearing “deficits.” If the world were without Deaf people, what would happen if people became deaf in an accident? Who would be there to teach them the culture, to teach them their language, to give them a community? All of these questions are broached by this art piece. 

CONCLUSION

Just talking about these issues isn’t enough, and these artworks allow the Deaf community to use their unique approach to visual media to spread awareness.  Although these videos do not directly use biotechnology as their mediums, they do address what specific forms of biotechnology mean to the Deaf community. In my opinion, this is just as much a part of the “biotech and art” relationship as the actual living tissues used in bio-design.

 

Works Cited 

“A Case Study on CRISPR-Cas9 and the Deaf Community.” Deaf Bioethics: A Case Studyhttp://deafbioethics.weebly.com/a-case-study.html. Accessed 8 April 2019. 

Baird, Chuck. Mechanical Ear. 1973, https://www.rit.edu/ntid/dccs/dada/profiles/chuck-baird/#iLightbox[gallery_image_1]/9.

Durr, Patricia. “De’VIA: Investigating Deaf Visual Art.” Visual Anthropology Review: Society for Visual Anthropology, vol. 2, no. 1, 2006, pp. 167-187.

Gao, Xue, et al. “Treatment of Autosomal Dominant Hearing Loss By in vivo Delivery of Genome Editing Agents.” Nature, vol. 553, no. 1, 2017, pp. 217-221. 

Lewis, Benjamin. “MySonIsDeaf_Finally.” Vimeo, 11 Feb. 2019, https://vimeo.com/313028316/1a32ee281a?utm_source=email&utm_medium=vimeo-cliptranscode-201504&utm_campaign=29220.

Middleton, Anna, et al. “Attitudes of Deaf adults Toward Genetic Testing for Hereditary Deafness.” American Journal of Human Genetics, vol. 63, no. 4, 1998, pp. 1175-1180. 

Ringo, Allegra. “Understanding Deafness: Not Everyone Wants to Be ‘Fixed.’” The Atlantic, 9 Aug. 2013, https://www.theatlantic.com/health/archive/2013/08/understanding-deafness-not-everyone-wants-to-be-fixed/278527/. Accessed 10 April 2019. 

“Zoom Focus: The End.” BSL Zone, https://www.bslzone.co.uk/watch/zoom-focus-end/.

Additional References 

(for those interested in learning more about Deaf culture and the Deaf community)

American Sign Language

Belt, Collin Matthew. “American Sign Language is not English on the Hands.” LifePrint,https://www.lifeprint.com/asl101/topics/history8.htm.

Deaf Culture 

“American Deaf Culture.” Laurent Clerc National Deaf Education Centerhttps://www3.gallaudet.edu/clerc-center/info-to-go/deaf-culture/american-deaf-culture.html. (note: gallaudet.edu is a great resource if you want to learn more about an array of Deaf topics!)

De’VIA

Durr, Patricia. “De’VIA: Investigating Deaf Visual Art.” Visual Anthropology Review: Society for Visual Anthropology, vol. 2, no. 1, 2006, pp. 167-187.