I know what it is like to be a Black philosopher within predominantly white spaces. I know that sense of feeling invisible and alienated. But until recently I had given little attention to what it means to exist at the intersection of being a Deaf woman of color within philosophical spaces predominantly populated by nonsigning hearing philosophers. We must all be careful to avoid neglecting different forms of injustice that deny different modalities of human flourishing. In thinking through my own inattention to this axis of difference, I’ve wondered how many of us within nonsigning hearing communities falsely judge the Deaf community as one of pervasive loss, where one’s hearing community is the standard against which “loss” is defined.
How might we rethink or even militate against thinking about a Deaf community as one of loss as opposed to one of gain? Why is it that so many see human variation through the lens of medicalization, where something (a difference), must be corrected, made closer to “normal”? How have hearing parents themselves failed to understand the needs of their own deaf children because the former have no real sense of just how their deaf child can flourish within a signing community? What is the meaning of hearing from the perspective of a deaf person? And what does it mean ethically to raise a deaf person in a world that valorizes hearing as the hegemonically normative?
In this exclusive interview for Truthout, I am honored to speak with Teresa Blankmeyer Burke, who is the world’s first signing Deaf woman to receive a Ph.D. in philosophy. Burke is a professor of philosophy and a bioethicist at Gallaudet University, the world’s only bilingual liberal arts college for the deaf. Burke is also coeditor of the distinguished Journal of Philosophy of Disability, along with Joel Michael Reynolds.
George Yancy: Many Black professional philosophers point out that they were typically the only Black students in their philosophy classes. This was certainly true for me. I imagine that this has slightly changed, but philosophy continues to be a predominantly white male space. This has led many BIPOC philosophers to critically engage the normative assumptions embedded within Western philosophy. This includes rethinking how what is knowable (epistemology), what we value (axiology), what is “real” (ontology/metaphysics), and what, for example, constitutes justice (ethics), depends upon how we are situated in terms of racialized lived experiences. This reexamination belies the assumptions of ideal theory, which abstracts away from social reality, as the late philosopher Charles Mills would argue. Feminist philosophy has also called critical attention to the ways in which philosophy has excluded women from the field. As the first signing Deaf woman to receive a Ph.D. in philosophy in the world, I think that your position raises all sorts of deeply significant questions. Western philosophy is both ocular-centric and hearing-centric. Discuss some of the ways in which being deaf challenges various metaphilosophical issues in Western philosophy.
Teresa Blankmeyer Burke: Where a philosopher is situated in time and place can certainly shape how they approach philosophy, including the spaces where we engage in philosophy. As a bilingual Deaf philosopher who teaches philosophy in both American Sign Language (ASL) and English at Gallaudet University, a bilingual university whose undergraduate student population is primarily deaf or hard of hearing, I’ve had to think about how we do philosophy in a signed language, how to teach philosophy in a bilingual environment using written English and ASL, how to teach philosophy in ASL where there is no standard lexicon of philosophical terms in ASL or ASL translations of canonical spoken/written language philosophical texts, and how to do this in a way that includes and incorporates signing Deaf community social and cultural norms.
The experience of being a Deaf philosopher in an academic space that was created by and for nonsigning hearing philosophers has been instrumental to the way that I think about philosophy and philosophical issues. For example, there is the question of “what does it mean to be deaf?” When I pose this question to my colleagues and students in the signing Deaf community the primary responses I get are tied to questions about language and cultural identity — for example, “What does it mean to be a member of this community of people who use a signed language?” When I offer this question to nonsigning hearing people, the responses are very much focused on an audiological or pathological orientation — “What does it mean to be in the world without the sensory experience of being able to hear?” In my conversations with the philosopher Laurie Ann Paul, whose work on transformative experience has engaged with the metaphysical question of the transformative experience of obtaining a cochlear implant, we have discussed conceptions of being Deaf and deafness.
In my discussions with hearing laypersons, their concept of the category of “deaf” is much narrower, restricting the label to include persons who have virtually no response to auditory stimulus — with or without the use of auditory devices. In the spaces I inhabit as a signing Deaf person who grew up as a hard of hearing child using hearing aids, I view the category of “deaf” as analogous to a three-dimensional axis, such as the x,y,z Cartesian coordinates defining a point in space. The x line represents the information represented on an individual’s audiogram, which ranges from medical descriptions of profoundly deaf (e.g. no audition or can hear a jet engine) to mild hearing loss (is more able to comprehend spoken conversations in a quiet room).
The y represents the sociocultural position of the individual, which captures language community membership(s) ranging from primarily uses a signed language (e.g. ASL) in daily life to primarily uses a spoken language (e.g. English) in daily life. And there are people like me, whose days are split between language modalities (signed, spoken, written) and languages (ASL, English, Spanish, and these days, I’m also studying Portuguese). The z axis represents the language flourishing of the user, and this takes a little more unpacking. For centuries, educating deaf people has been a struggle between methods — is using a signed language best or is it better to teach deaf people to speech-read and speak? A consequence of this pedagogical struggle has been the pervasive language deprivation that occurs for deaf people who were not given the opportunity to acquire a language — any language — when their brains were most receptive to this. So, the z axis represents the continuum ranging from language flourishing to language deprivation.
There is a body of scholarship in Deaf studies about Deaf Gain, which flips the tables on the disability-as-loss narrative.
The model that I’ve just offered raises a number of philosophical questions about epistemology (e.g. what is it to have knowledge of hearing as a deaf person?), ethics (what is the best way to educate a deaf child?), meaning of life (what is a flourishing deaf life?), and more. Years ago, I started labelling the area of philosophy that I work on as Deaf philosophy — a term that works well in ASL, but is a little awkward in English. Now, I think that part of the reason the term is awkward in English is due to the underlying attitudes and beliefs that shape our language use — for example, we use “philosophy of race” to describe an area of philosophy that examines philosophical inquiry about race, and “feminist philosophy” to describe philosophy that examines gender. So why not call this “philosophy of deafness” or “Deafist philosophy”? The former to me seems to have far too much of a medicalized concept built in, and the latter seems to require further explanation. (Notwithstanding the difference in etymology between the Old English “deaf” and the Latinate “feminine,” roots of origin that still govern how we affix suffixes in English.) Plus, Deaf philosophy comes from the ASL, is easily translated between languages, and prioritizes those who likely have the most interest in these questions.
In my many discussions with Black women philosophers, they have shared with me some of the ways they have been negatively marked within the field of philosophy. I am thinking here in terms of how they are not assumed to be the professors of their own courses, how they have been framed as reservoirs of experience without theory, or how they have been hypersexualized or even had their philosophical voices erased within feminist theory. Talk about how as a Deaf BIPOC woman in philosophy, you have had to negotiate multiple sites of exclusion in philosophy.
This is a difficult topic to reflect on, and yet I’m appreciative of the opportunity to do so. At the start of my career as a graduate student teaching courses at a primarily Hearing university (that is, a university that operates almost exclusively in spoken and written language, e.g. English), I had numerous instances where I would show up to class on the first day as the course instructor of record with an ASL-English interpreter, and students would be confused. I could mitigate that somewhat by opting to use spoken English. (I have voice privilege and choose to use it, which is not the case for all Deaf people — either the choice or the voice privilege.) I also had similar experiences at philosophy workshops and conferences, where philosophers assumed that I was training interpreters. The idea that I could be a Deaf (Brown woman) philosopher was not something they entertained. Interestingly enough, when I shared this with my Deaf white male middle-aged colleague at Gallaudet, he was quite surprised to learn about my experience. The late professor Jim Haynes is believed to be the first signing Deaf person to earn a doctorate in philosophy. He was also a bearded Deaf man who wore tweed jackets and smoked a pipe.
The more concerning and challenging experiences I had early on were with colleagues. I remember attending American Philosophical Association meetings as a young graduate student in a border city and having a senior colleague hand me his empty cup of coffee to take away. I was wearing all black to highlight the contrast of my hands when presenting in ASL, and it wasn’t until then that I noticed that the hotel staff were dressed similarly, and most of them were also olive-skinned with dark brown hair and eyes. While that could be chalked up to the stereotyped attitudes of an older generation, a more concerning incident at the same conference made me change some of my conference practices regarding ASL/English interpreter gender.
After a talk, about six philosophers had gathered in a group to continue the conversation, including the two ASL/English interpreters I was working with. One interpreter was male, the other female. The man was working to interpret the conversation, with the woman providing support for her team, which is a common practice. I tried to chime in to add my (spoken) voice to the conversation, but was repeatedly ignored. After about five or so instances of this, I decided to sign my contribution, asking the male interpreter to add his voice. Even though the context of my observations was unchanged, the addition of a sonorous male voice shifted the dynamic, and people started paying attention to my words, now mediated through a spoken male voice! When I signaled to my interpreter that I was ready to start speaking again (I wanted to make some particular philosophical points and the interpreter did not have the knowledge to do this in the way that I could with my disciplinary expertise), one of the men in the group stepped in front of me, visually blocking me from the interpreter and signaling with his expression that my contribution was not welcome. I wish I could say that this was a one-off, but this was not a rare occurrence.
When I started, academic philosophy weighed academic pedigree heavily — I think this has changed somewhat. One of the challenges for me in graduate school was figuring out how I was going to access the spoken language content of philosophy courses, which were all run on a seminar model. I’ve written about this elsewhere, but the work of developing an ASL lexicon for academic philosophy while providing ASL/English interpreters with sufficient background to interpret this context was daunting. Unbeknownst to me, I happened to end up at a university that was renowned for its Ph.D. program in ASL linguistics, which serendipitously shared a floor with the philosophy department. The bulk of the interpreters I worked with were Ph.D. students in linguistics, who had academic interests that overlapped with mine. By the time we had figured out the lexicon and the other practices that worked for me as an MA student, I was ready to apply to Ph.D. programs. After considering that it would take at least 2-3 years to train interpreters, plus there was no guarantee that any interpreters at another Ph.D. program would have the academic background my current interpreters did, I decided to stay where I was, despite the lower prestige of the institution. I sometimes wonder if this has impacted my career trajectory. It would have been interesting to have the opportunity to think and write in ways that a research institution offers, not that I regret the unique bilingual teaching institution where I have ended up!
I entered my Ph.D. program assuming that no university would hire me because I was deaf. But I wanted to study philosophy. My plans were to continue the work in deaf social services that I’d been doing all along and apply my philosophical knowledge when I could. One memorable instance of this was being asked to teach about capitalism to a group of newly arrived deaf Cuban immigrants, who did not know ASL or English, but Cuban Sign Language and Spanish. It was a memorable experience that sharpened the contrast between the two worlds I straddled — in graduate school I was reading and teaching texts in political philosophy by Hobbes, Mill and Marx, and at work I was wracking my brain trying to figure out how I would teach the practical aspects of capitalism using gesture, written Spanish and visual images to Deaf Cuban immigrants. I like to think that this experience made me a better teacher; I definitely think that having no illusions that I would be hired as a Deaf philosophy professor gave me a sense of freedom as a philosopher, including in what I wanted to write about for my dissertation, even though I was told by several people that my topic was not philosophical enough.
I would argue that most people who have no concern with issues of disability justice or disability studies would say that having a disability constitutes a loss. In this case, being deaf would mean that somehow you have suffered a profound loss. While not conflating the two, there is a sense in which to be Black is a form of “loss” vis-à-vis being white. As we know, certainly within the context of white supremacy, the discursive framing of such terms as “deficient,” “loss,” “inferior” and “deviant” are predicated upon a normative white hierarchical structure that creates the constitutive outside. The “outside” is deemed a site of loss. Discuss how we might rethink deaf and hard of hearing persons not in terms of loss, but fecundity.
The idea of loss can be considered as a change of states of being — one loses something and one has an experience of before and after the loss. Certainly, some people have this experience with hearing loss, but this does not apply to everyone. Some of us do not share this experience at all, but only know what it is to be in our bodies as they have always existed.
There is a body of scholarship in Deaf studies about Deaf Gain, which flips the tables on the disability-as-loss narrative. Two of my colleagues in Deaf studies, professors Joseph Murray and H-Dirksen Bauman, developed this approach, later editing an anthology on Deaf Gain to which I contributed a chapter titled “Armchairs and Stares: The Privation of Deafness,” the title of which subverts the notion of loss associated with being deaf into a notion of loss some of us Deaf people ascribe to being a hearing person who cannot experience the world as we do. This is not to say that I am dismissing the value that hearing people ascribe to their experience — rather, I am raising the question that the experience of having the sense of hearing may have other valences.
Your question flags the positionality of our experience as outsiders. For many hearing people who later learn to sign and adopt the cultural mores of a signing Deaf community, the experience of entering a Deaf-centric space triggers a similar sense of being an outsider. For Deaf people, the experience of being Deaf in a larger hearing-centric society raises perspectives that nonsigning hearing people may not have thought about. For example, the buildings that we live and work in have largely been designed to fit the needs of people who are sighted and who use an auditory language. Sometimes these needs are not met, such as when hearing people who rely on spoken communication eat a meal at a fine dining restaurant with acoustics that run counter to the experience of sharing a lively conversation over a meal.
The duality of sustained eye contact with everyone we converse with (not just close family and friends) is a different way of being in the world.
At Gallaudet University, where I work, I have been fortunate to sit on several building committees that were charged with providing input on proposed new buildings, which were designed according to the principles of DeafSpace. This includes such features as diffuse lighting (people who are backlit with windows behind them are hard to understand when they are signing), wide hallways that allow for side-by-side conversations in ASL, choosing wall colors that contrast well with all shades of skin, and considering how barriers such as hallways with sharp corners can impede conversation, yet curving hallways allow the conversation to wrap up more fluidly as one is walking away.
Deaf Gain is about more than physical space, of course. Here’s another example that might seem kind of obvious. Sighted people who use a signed language must look at each other when they are in a dialogue. If I close my eyes, I will miss everything that my interlocutor is expressing. When people communicate with one another in ASL, we are not just looking at each other’s hands and arms, but we are looking at each other’s face in order to catch the grammatical markers, and also to check for understanding. The experience of communicating in a signed language is intimate in a way that the experience of communicating in a spoken language is not — and I say this as someone who has spent a lifetime speechreading!
The duality of sustained eye contact with everyone we converse with (not just close family and friends) is a different way of being in the world. As those using spoken language fix their eyes to attend to other matters such as looking at a screen and simultaneously processing that visual content while holding a spoken language conversation, the difference between the conversations in these two language modalities sharpens. What can we learn from the human experience of consistent eye contact during communication? How does this shape who we are as human animals? Some of these questions are best suited to psycholinguists and other scientists, yet the empirical information we acquire through these inquiries may shape our answers to evergreen philosophical questions, such as: What is a flourishing human life?
The motif of loss has implications regarding being “fixed.” There seems to be a terribly problematic assumption that all forms or configurations of being disabled imply that something has been “broken” and thereby must be fixed. As a bioethicist, as someone who is deaf, you bring critical attention to the issue of being “fixed” and its implications for, in this case, Deaf communities. In your article “Gene Therapy: A Threat to the Deaf Community?” you write:
This bias of Hearing culture can be seen in the normative claim that it is better to be a member of the dominant, mainstream Hearing cultural community than to be a member of the non-dominant Deaf cultural community. This claim is frequently stated but rarely argued for. The usual approach begins with a reference to species typical functioning and then relies on assumptions about the “obvious” value of that which is typical. Yet this assumption about the typical being more valuable than the atypical is problematic and it requires examination.
Discuss how you understand gene therapy within the context of Deaf communities and within the context of questions of self-determination.
Over the past two months, gene therapy clinical trials for a rare type of childhood deaf gene (OTOF) have generated a lot of conversation in the signing Deaf community and elsewhere. In some ways this conversation has similarities to the concerns shared by the signing Deaf community in the early 1990s when cochlear implant surgery became a medical option for young prelingually deaf infants and toddlers. Some of the concerns raised over cochlear implant surgery and the current OTOF gene therapy include the ethics of informed consent by surrogates (usually parents), bodily autonomy and the existential threat to the signing Deaf community as a whole.
Before I take these issues on, I think it is important to pay attention to how deeply embedded our normative attitudes are in the language of medicine, which you note at the beginning of your question. Take the phrase “gene therapy,” which implies that a therapeutic (that is, helpful) genetic intervention is necessary. Yet the valence of the therapeutic need and what ought to count as therapy is not consistent across all human cultures and communities. The medical view of disability implies that something is variant with the individual that needs to be repaired — this is the mainstream view.
What is thought to need repair is not always a matter of species typicality, which varies considerably across the lifespan, across genders, and in numerous other ways, but can be socially and culturally determined. Societies categorize individuals according to biological variation, and some of these categories are socially disadvantaged. Additionally, within some of these groups there have been historic efforts to medicalize human variation. This is often the case with disability, but historically it has also included race and gender. The unexamined assumption is that there is a socially medicalized norm or standard to which others’ bodies ought to correspond, and gene therapy is the fix. But suppose we were to substitute the language of gene therapy to follow more neutral language, such as genetic alteration or genetic modification (as is used for practices of changing one’s body) — would that shift the way that we talk about this topic?
Like many disabled communities, the signing Deaf community has a complicated relationship with social institutions that have historically aimed at cure or assimilation. Education, medicine, law and religion have all played a role in shaping the landscape of signing deaf communities and as these are all primarily institutions led by and populated by hearing individuals, the question of whose best interests are at the forefront is always present. Gene therapy can be seen as the latest attempt to fix deaf people. What makes this such a complicated topic is that we generally provide a lot of latitude to parents or potential parents in supporting their freedom to shape their child according to their conception of a flourishing life for their child.
For members of the signing Deaf community, the sticking point has always been the concern that hearing parents of deaf children may not have a well-conceived notion of what a good flourishing life can be for their deaf child in a signing community, and an overly robust notion of what it is like for a deaf child to acquire spoken language and their experience of living solely in a spoken language community. Factors that can impact well-being and flourishing don’t always make it into the early discussions, such as the “solitaire experience,” the effects of mild language deprivation on sociability, including “dinner table syndrome” and more. Recent endeavors in the arts and humanities, including the Academy Award winning film CODA, and Sara Nović’s New York Times bestselling novel, True Biz, have raised awareness about deaf lives, which can be helpful in the moral imaginings of parents as they consider future paths for their deaf child.
Genetic modification, such as that being used in the current OTOF clinical trials, has some sobering implications for continued existence of the signing Deaf community. While the OTOF gene incidence is rare, occurring in just 1-3 percent of deaf children, other genes, such as GBJ2 occur much more frequently in this population. Unlike most other medical interventions, gene therapy has the potential to transform a person from deaf to hearing, thereby removing them from the possibility of joining the Deaf community, and also, with heritable human genome editing, changing this trajectory for the individual’s descendants. Up to this point, genetic screening has played something of a similar role, but many deaf children are born to hearing parents who carry recessive genes for deafness who had no idea about this potential outcome.
Who we value most in our society is reflected not just in our laws and policies, but also in our social practices, including those at the smallest social unit of the family. Raising a child who is deaf is harder for hearing parents, and the social resources provided are currently insufficient. Given this, is it not surprising that gene therapy may seem to be the solution to parents who are wondering how they will raise a deaf child.
As someone who cherishes the signing Deaf community for the richness it has brought to my life, it saddens me to think that someday there may no longer be a critical mass of signing Deaf people to sustain this vibrant language community. I think this will be a significant loss for the human community.