Can ethics keep up with the emergent possibilities of genetic engineering? Prof. Teresa Blankmeyer Burke, a bioethics specialist and member of the Deaf community, helps the LMTF team to challenge popular understandings of what it means to perfect our genome, as we discuss the stakes it represents for the Deaf community, hearing majority, and society at large. Recorded March 18, 2018.
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LMTF Episode 20 (Season 2): Genetic Engineering and Deafness
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PROFESSOR TERESA BLANKMEYER BURKE: What does philosophy look like when we do it with our hands?
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PROF. BURKE: To think about this kind of human exchange possibly being extinguished in the next hundred years or so is a dismal thought.
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SARA THELEN: Our guest this week is going to amaze you. Not only did we have an intense conversation around the ethics of genetic engineering, we had it with an eminent professor of philosophy – a Deaf professor who accessed the dialogue not through our audio but through a sign language interpreter’s hands. We spoke, the interpreter beside her signed our words, and she led us through a seamless dialogue that we hope will challenge your view of what ‘disability’ means. Enjoy.
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WELCOME TO LET’S MAKE THE FUTURE!
THIS EPISODE’S FUTURE TREND DISCUSSION TOPIC:
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GENETIC ENGINEERING AND DEAFNESS.
WITH PROFESSOR TERESA BLANKMEYER BURKE.
SARA THELEN: Welcome to Let’s Make The Future. My name is Sara Thelen. We’ll start by introducing some of the current debates around genetic engineering, then move on to discuss the stakes of these issues facing the Deaf community and society at large.
Joining us today is Professor Teresa Blankmeyer Burke, associate professor of philosophy at Gallaudet University in Washington, D.C., who specializes in bioethics and is currently finishing up her monograph, Out of Hand: Deaf Bioethics in the Genomic Age.
Professor Burke, thank you so much for joining us today.
PROF. BURKE: I’m so delighted to be here. Thank you so much for inviting me to talk with you.
SARA THELEN: Would you mind giving us a picture of how you got interested in this field of research?
PROF. BURKE: So I’m a philosopher, and when I was an undergraduate I was trying to think about what I wanted to do with my life, and I knew that I loved philosophy and I also liked biology an awful lot, so I ended up doing an internship in bioethics and it just felt like the questions in this area of philosophy were compelling not just because they were age-old questions that we as human beings will ask ourselves, but that they had some very practical implications, and later when I was searching around for a PhD topic I was trying to think of a way that I could integrate my interest in a signing Deaf community where I was working.
As a member of the signing Deaf community I did a lot of stuff related to peer advocacy and peer education in the healthcare setting, and my work in philosophy and in bioethics and this topic, genetics and bioethics related to the Deaf community, was something that came up for me as a conference at Gallaudet University, where I now work, but at the time I was living in New Mexico working on my doctorate. So I just went ahead and started reading around and thinking through it, and realized that I had something to share, particularly because of my vantage point as a member of the signing Deaf community.
So much of what has been written and said comes from bioethicists and philosophers who are hearing people, most of whom don’t know any sign language, and don’t live in the community that I inhabit.
SARA THELEN: That’s great. We’re really excited to hear your insight about that today.
I did read your article about clause 14 of [the] UK’s 1990 human fertilization and embryology act, and in that article you argued in favor of the right to positively select deaf embryo donors. And I wanted to ask you to describe the opposing positions in that debate, and maybe you can enlighten us on similar debates that affect citizens of the US or other countries.
PROF. BURKE: Sure. So one of the things that I think is important to remember is this conversation came up in a particular context, and that was around the kinds of services that will be provided through the National Health Service in the United Kingdom, and particularly services related to reproductive technology. So in looking at this bill as it was proposed initially, one of the concerns that many people had who argue for reproductive liberty was that it constrained, as it was initially written, the rights of Deaf people to use reproductive technologies in order to reproduce.
And [laughs], I mean that sounds silly, but what I mean is that the reproductive technology options—so take something like in vitro fertilization. I’m not even talking now about selecting an embryo that would be most likely to have deafness as a character trait, a biological trait. I just refer to in vitro fertilization. The way that the law was originally proposed was that if you had any sort of abnormality—and this is paraphrasing because I don’t have the text of the law in front of me—you would not be permitted to reproduce because of fear that you would pass that on.
So our initial response was wait a minute, this is discrimination, and we need to be sure that we argue for the right of Deaf people to use in vitro fertilization if the only way that they can bear biological children means that they will have deaf children. And of course genetics and deafness is very complicated, there are hundreds of different genes that are associated with deafness, but in some cases, depending on the kind of gene that it is, you might only be able to have Deaf children. In other cases with the recessive gene, perhaps, it’s a roll of the dice and there’s a 25% or 50% chance of having a Deaf child, but we wanted to be sure that we put forth an argument that would protect the rights of all deaf people to seek reproductive services.
SARA THELEN: I see, so it wasn’t even necessarily against Deaf parents trying expressly to have a Deaf child, but then being part of the donor list at all. They were seen as a risk in that sense, is that what you mean?
PROF. BURKE: Yeah, I think I would be careful with the donor characterization because I think that can be used in a couple different ways. So what I’m thinking of, imagine this: you have a—let’s take a fairly uncontroversial case—you have a couple, let’s say a straight married couple, and they wish to have children, but it is not possible without using IVF. Each person contributes a gamete—an egg, a sperm—but there is no possible way that they can bear any hearing children. So it’s not an outside donor in this case, we’re just talking about a couple who wish to have children biologically, and they need to seek in vitro fertilization in order for that to happen. We argued that just as hearing people have this right under the National Health Service so ought Deaf people to do it. Now, it can get a lot more complicated when you start talking about different donors whether that’s mitochondrial DNA that’s being inserted, or a sperm donor, or an egg donor, and I do want to admit that there are a lot of different ways you can formulate that, but the context that we were thinking about, and the context that we were putting forth initially, had to do with the fact that as the law was originally written and proposed, including the guidance and the—there was a footnote that specifically spoke to deafness that was added a comment by Baroness Deech that was—she spoke out about being opposed to letting Deaf people choose to have Deaf children, so there were a couple of different pieces in this debate.
Then you asked about the other points of contention, or how this may be playing out elsewhere, and I think it might be a good time to mention that in 2016, the end of 2016, there was an international summit on human gene editing and the United Kingdom, China, and the US had participants of the various national academies of sciences. And this group, they met for several days, and they came up with four different points of guidance, and the first one was that human gene editing, if it’s used in research, initially those modified cells should not be used to establish a pregnancy, so the suggestion was to hold a hard line against the research and the reproductive pieces of it. And there’s also a difference between, when we talk about human gene editing, there’s a difference between somatic gene editing, that is the genes of an individual like you or me living in the world today, and changing our genes, and then it stops with us, and that’s contrasted with germline gene editing where you could make an alteration to an individual that would not only change that individual’s genetic makeup, but would conceivably be transmitted through all of that individuals’ descendants. Now it’s a little more complicated than that—I’m giving you the thumbnail sketch of it—but the big picture is germline gene editing impacts that person and their descendants, somatic gene editing impacts that person alone. And so if you think about this with germline gene editing it has enormous consequences for what human beings could become without having to stop with each one and do a particular genetic intervention. So after this was, this international summit was released, and the fourth point for that was the need for an ongoing forum so the importance of continuing the conversation not just stopping there a few months later February 2017 a report was issued by an international committee here in the US through the National Academies of Sciences and the National Academies of Medicine that suggested in certain particular instances it was permissible or acceptable to do human gene editing as a clinical trial and so that created the sack and forth between the International summit folks were saying we need to be really careful and slow down and have a lot of conversations including public conversations about this and the insiders science and bioethicists group who were saying well alright let’s just move on and in certain instances make this permissible and I think that’s one of the things that I really want to stress today is how important it is to have these conversations again thank you for inviting me to talk with you and to think through these are topics carefully and examine our assumptions identify our assumptions and have a thoughtful conversation not just today but continuing into the future.
MICHAEL CURRIE: I find that line of argument fascinating, professor, because in all the years of hearing about eugenics and the idea of genetic engineering humans I always thought of it in the context of trying to engineer “superior” humans with intellectual or physical characteristics that are better in some absolute sense but to use genetic engineering with the objective of having one’s progeny remain within the group that you are a part of actually in some sense seems more relatable or seems to make more sense if you understand how parents think.
Just look at all kinds of groups. Any parent of course will teach their children their own religion. The children of a Christian parent will be Christian; the children of a Muslim parent will be Muslim; the children of an Amish parent will be Amish and will live an Amish lifestyle. So it certainly makes a lot of sense if the culture that you’re in is something that requires or is dependent on having certain physical characteristics. It seems like maybe one of the wonderful things that modernity can provide for those cultures is a mechanism to propagate that culture into the future. So it’s a fascinating idea. But I just [wanted] to make that observation, and ask a question:
Because, of course, eugenics for a lot of people has very negative connotations. It has negative connotations from Nazi Germany. And I wonder: what would be the academic and political standing of the eugenics movement today if it hadn’t had its reputation tarnished by association with the pseudo-scientific justifications of genocide and other horrors coming out of Nazi Germany?
PROF. BURKE: That’s such a great question as a philosopher we think about thought experiments all the time and so this question of would we have a different response to the concept of eugenics had the horrific egregious harms of the late 19th and 20th century not occurred. And of course I’m no prognosticator, so I don’t have an answer about, that but I have some thoughts.
And one thought is that I think for as long as we have been human beings we have in some way sought out or selected our mates if you will and selected certain traits or been attracted to traits and there’s a hardwiring in our biology for things like facial symmetry and youth and signals for fertility or quantity but I’m thinking also of how we will select people within our cultural group for example I might select someone who speaks English and ASL because those are two languages that I use and of course there are ways that we value traits and want to see those traits or characteristics in our children so you might a select a mate who has that trade let’s take an example of two musicians and two musicians might have a very strong preference for a child who will also be musical and anyone who’s a parent will know that sometimes you can have strong preferences and high hopes for your child and things turn out very differently and I think that’s true even if the child has a particular talent but we do have a gene for a perfect pitch that’s been identified and to musicians let’s say you have a gay couple and they are looking for a surrogate who also has that perfect pitch gene maybe a surrogate is also the egg donor and so there are ways that you might want to think about how we as human beings as parents shape our children and how we have been doing this for a very long time the technology granted is shifting and changing but I think our preferences and our choices have been a long part of this history of reproduction now also with eugenics I think we have a number of concepts that need unpacking or assumptions maybe is a better way to put it so one is what kinds of lives are best and who gets to decide what’s best what measurements do we use what kinds of lives are worth living how do we construct society to favor certain kinds of lives over others whose testimony should get the most warrant who do you believe the deaf person who gives an account of her life as fully flourishing or the hearing person who doesn’t know any sign language and doesn’t know any deaf people their perception of what it might be like to be a deaf person do we dismiss certain narratives out of hand and say well it’s kind of the sour grapes thing they just don’t know any better and if we do that on what grounds might we do that so I think it’s a fascinating question to ask about how we might respond to eugenics if we did not have the particular history that we have and it also leads us to asking fundamental questions about what values are embedded in our notion of eugenics Thanks as a philosopher can you identify some also assumptions or maybe faulty logic that you’ve seen that you think might hinder the productivity of a debate like this one of the buzzwords they’re both phrases actually that gets thrown about in this conversation about deaf people wishing to have deaf children is this idea of cultural genocide now that’s not my phrase that’s a phrase that I think is first put forth by Harlan Lane who’s a distinguished professor of psychology at Northeastern University and that tends to trigger all kinds of heated responses back and forth so most deaf children are not born to deaf parents they’re born to hearing parents over 90% of them and hearing parents by and large don’t know sign language and they have onset of different responses for their children in conjunction with what they view might be the best possible life for their child and every parent has a vision of what that best possible life is job for hearing parents deaf or hearing children if the parent opts to go down the route of a cochlear implant and spoken language that’s one option another option might be to expose the child to a sign language and learn sign language as a family and then there may be yet another option of learning a sign language and giving the child a cochlear implant and having a broader more inclusive sense of how that child can move forward in the world so it doesn’t have to be an either/or choice and I think often it’s framed that way and I will acknowledge that we have always constraints on our time on our resources whether those are economic resources or access to health insurance or access to a health insurance plan that provides support for a cochlear implant or does not or access to deaf education depending on where you live if you live in a very rural part of a state you may have fewer options than if you live say in Washington DC where there is an enormous equal mass of signing deaf people so one I think thing to think about is all these different options and how it really isn’t an either/or choice another one is to consider assumptions about suffering and if social suffering is similar to physical suffering if you suffer because of social structures that support institutionalized discrimination whether that is sexism racism religious discrimination ableism then what’s your next move do you change society do you acknowledge that for certain kinds of embodiment you will have certain social effects and then even and this is kind of talkative but our discrimination and oppression always bad do they always have bad effects we know that in some cases people acquire grit and resilience which we hold up to be good traits through these experiences of discrimination or oppression so maybe another way to think about this is to ask the question should we focus on changing society to be more inclusive or changing our bodies to fit our current society or perhaps both.
Michael Currie: Hmm.
SARA THELEN: You mentioned the argument that sometimes comes up about cultural genocide, and I read your article “hearingsplaining,” which made me laugh so I appreciate the style of the article, it was very fresh… and I saw that you were talking about a conversation you had had where you mentioned that you don’t necessarily buy the idea of a deaf culture, or at least one that was put forward by Padden and Humphries. And so I wanted to know if I understood correctly from that that you characterize the deaf community in a different way than a culture, or if you could expand on what you meant by that?
Professor Burke: So that article I guess or it was originally a blog post and then it got picked up and published by Word Gathering, which is a creative writing online journal related to disability… I wrote “hearingsplaining” because I was very frustrated with the kinds of experiences I had had as a new academic philosopher in professional contexts like conferences. And early on I was usually taken for a staff member training interpreters and not taken for a philosopher. Now maybe part of this is because I don’t have a beard and I don’t wear tweedy jackets with elbow patches… and as the first signing deaf woman philosopher, I upend a lot of stereotypes and the irony of course is that we’re trained as philosophers to question assumptions and to examine our biases and identify them, but we’re human and sometimes we just sort of fold into our heuristics and operate from those. So my comment about Carol Padden’s and Tom Humphreys’ account of Deaf culture was part of this imaginary dialogue in the piece, and I wrote it to illustrate a point. And that point was that as a brown female deaf philosopher, I am frequently treated by other philosophers or at least I was initially, as an exotic specimen rather than a member of the philosophical tribe. So I threw that comment out because I wanted to flag my expertise and also signal to the hypothetical clueless philosopher that I have substantive views that I want to be engaged with.
So now Deaf culture: I think that the move Paden and Humphreys made was brilliant. And they proposed this deaf culture analysis in the late 1980s. So this question of the Deaf culture leads us to a couple other questions. One is: What is culture, exactly? That’s a deep philosophical question. Anthropologists have a working definition of this, but they argue about it as well. And who belongs to a culture? How do you get to become a member of a culture? Are you born into it? Are you somehow enculturated later in life? Do you have to have certain physical traits in order to be a full-fledged member? All of these questions I think come up from the framing of Deaf culture. And is it a necessary condition that you must be deaf or hard-of-hearing to be a full-fledged member of the culture? Is it just a sufficient condition? And then how do you account for people like me who move between a signing deaf cultural community and a spoken, many spoken language communities in my case– I hop around between spanish-speaking community, an english-speaking community, and then when I was a child some of my family members spoke Arabic, so I was exposed to that, though my Arabic is terrible and I basically only have kitchen Arabic and a few swear words… So I just want to circle back around to the point about deaf culture being as much a flag about saying, “hey please engage me as a philosopher, as your philosophical equal,” as it was challenging this particular notion of what it is to be a deaf person or a Deaf community.
SARA THELEN: That makes sense. I think it might be a good time to move to the part where we talk about the kind of future we want to make, especially as it considers everything we’ve talked about with bioethics and genetic engineering in this short time.
I wanted to throw the question to everybody all the panelists today. If you were to opt for gene therapy, would you feel you have particular responsibilities in the way you apply it and, if so, towards whom?
HOSSEIN: Sara can I, uh…
PROF BURKE: Who is this?
HOSSEIN: Oh, uh…
PROF. BURKE: Can you tell me who is speaking? I don’t have a sense of who’s speaking.
HOSSEIN: Okay. So my name is Hossein. I’m the Microsystems engineer at Michigan State and I would like to ask a question. Do you hear me well?
PROF. BURKE: Yes I do, thank you. Or, I see you, through the interpreter; he hears you.
HOSSEIN: So I would like to give some background: I [was] born in Iran and raised in Iran, and then went abroad for graduate studies and then, here I am in the US.
Since I was a child in Iran, I was frustrated with the culture around me that suppressed freedom to preserve itself in exchange with international cultures and other countries. And that was always frustrating for me. And eventually the career I chose as an engineer, I made it my agenda to [maximize] sensorial experiences by human beings. I became a free radical trying to say even having five senses is not enough – we need more senses as human beings to sense the universe. We need infrared perception, we need [every perception possible].
And the more I read about history the more I saw the arrow of history that always… I saw this pattern that human beings always maximize their connectivity. So they started from the small tribes, and then they had a larger myth, and they could unify in larger and larger groups, and we were going towards globalism and Internet.
So, from that background and this perspective I have, I’m really intrigued. When I heard about the parents positively selecting deafness for the children I was fascinated to see a conflict. I was like, “here we go; I really want to engage in this conflict.” I want to learn the opinion of the other side, and reading one of your articles, “Gene Therapy: A Threat to the Deaf Community,” I face this sentence that you said “deaf children [who] receive gene therapy to treat their deafness lose this choice permanently”, and that sparked a question: How is that the case? Why would a child lose that choice permanently? That’s one big question I have [for] you.
And I also want to make a comparison to see if that’s a feasible comparison for you. So I imagine that then we positively select for deafness we eliminate the possibility for the children to interact verbally without interpreters later in their lives. And what if hearing parents were able to genetically modify their child’s embryo to eliminate a linguistic ability to learn sign language? Would you see that as different from selecting for deafness? I would really love to hear arguments on that side, thank you.
PROF. BURKE: Thank you so much. There’s a lot there so I’m going to try to remember to speak to all of the big points but if I’ve missed one, let me know.
So, in listening to your description, it reminded me of the “transhumanist movement.” Where, there’s this movement – a social movement – to conceive of human beings as having the right if you will to maximize human capabilities and whether that might be to add another sense and who knows what those senses might be or to augment the sense so that now you’re not only able to see as we do now, but you add infrared capacity to that, or super ear technology where you have the capacity to hear within species-typical range and then you extend that, so maybe you are able to hear things like dog whistles…
So this question of transhumanism I think is one it goes to both a question of freedom and how much choice do we have for ourselves and also how much choice ought our parents to have over their children, potential children’s, traits? And I don’t know if I went over this, but it’s important to say when we talk about selecting for deafness what I’m talking about here is two different things. There is selection of gametes, that is, a sperm and an egg that already have certain DNA (specific, particular DNA) already embedded, and then those two join to become a fertilized egg and that’s like a zygote, one certain embryo and so on and so forth, and that particular human being is born with a specific kind of DNA that hasn’t been altered. And if both parents contribute genes that eventually encode for deafness, that embryo would have been born deaf, not hearing.
And then you have, let’s take the same instance and you could say, have two hearing parents who are really uncomfortable with the idea of having a deaf child and they say: “let’s alter the genes of this particular embryo so that we have a hearing child and not a deaf child.” Or conversely, perhaps you have two deaf people who do not have genes that are compatible with the production or creation of a deaf child and they wish to have a deaf child, so they want to “flip the switches” if you will, and have the deaf child.
So when we talk about selection there’s a couple of different ways that this can happen, right? There’s the selection, of this is the genetic material you have, let’s select the embryo that’s deaf rather than the one that’s hearing, or you have an embryo and you change it. If we’re talking about changing it, I think that we have a different set of moral considerations, and I haven’t fully worked out my views on this, even though I’ve been thinking about it for about 15 years [laughs] because I have this intuition that resists these changes in terms of safety and what kinds of biomedical consequences might ensue. We don’t know a lot about genetic engineering, we’ve had some experiments in clinical trials where things have gone very badly, and I think we want to proceed extremely cautiously here.
I think too that going back to this question of losing a choice and my impact ethics article – I hope I’m remembering the right one – so a child who is born deaf has choices made for her, usually by her parents, and these choices might be: which language do you get exposed to, what is your education like… and these are choices that usually just happen without a lot of thought, I mean, the language one in particular I think is very rare, although we do have a case of a parent who wishes to teach their child Klingon, it’s usually the case that the child will learn the language that is the immersion experience; what language is our language is being used around that child, what is that child picking up. In the case of deafness, because it is possible to just naturally acquire a sign language, and it is very difficult without other intervention could naturally acquire a spoken language, deaf kids who get exposed to a sign language just respond like hearing kids do; they just learn the language. And you don’t have all of this additional time and energy devoted to teaching language.
Now you have time and energy devoted to teaching how to read English or how to speak it. If you add (and I’m using English as a stand-in for spoken languages) but this question of modality, and by modality I mean what form is a language take– is it a signed language? is it a spoken language? and then with both sign and spoken languages you also have written languages as a corollary. So if the modality is sign language, then you just automatically have full access as a deaf person to whatever conversations are going on. If the modality that’s chosen for a deaf child is spoken language, you will have partial access and sometimes that partial access is pretty good and sometimes it’s not. And I elsewhere– I don’t think I published this yet, but it’s coming out pretty soon– have made the argument that an important part of human flourishing is to have the experience of full access and full inclusion of language.
And this is one reason why I’m sure some listeners might be wondering given the quality of my speech why I ought to advocate so strongly for the signing deaf community. And part of the reason I do this is because I get something from the signing deaf community that I don’t get from the hearing world with spoken language. I get full access to communication, and you can’t put a price on what that means.
Now, you might be thinking: “well, then just make everyone hearing, and this problem goes away.” But I would like to report the idea that there are things we learn about what it is to be human when we look at different modalities, whether it is writing, or signing, or speaking. And so, to eradicate a thriving, flourishing, signing deaf community seems just, on the face of it, wrong to me.
MICHAEL CURRIE: Michael [did] you want to ask a question?
MICHAEL OLORUNNIWO: Sure. Thank you, Teresa, for that explanation. This is a very interesting topic for me.
So my question is, I wanted to learn about: what is the current state of eugenics? We’re coming from the early phase where we’ve started using selective breeding. Then we also have the [unintelligible], stuff like that. Today, in what ways is eugenics being used?
And then the follow up to that is, is there anything like a responsible use of eugenics? And to what extent [do they balance] the right of the parent for [those] of the children?
PROF. BURKE: I didn’t catch all of that, but I’m taking your question to ask: let’s talk about eugenics today and how is eugenics being used today.
I think it depends on how we define that term, right? So eugenics is a way of selective breeding and selecting who you wish to have a child with. Certainly we have instances of eugenics when people are looking for, say, sperm or egg donors. Often they get a list of different characteristics and traits. Some of those may be biological, but some of them also may be things like, “enjoys music” or “very introverted” and there’s so much we don’t know about genes and genetics and environment, and how this all comes together. So we do have certain default practices that I think have eugenic notions embedded in them.
I’d like to talk a little bit about the assumptions and biases that we, “we” meaning the larger society as a whole, not me specifically, have about disability. So disability is typically taken to be a bad thing, it’s intrinsically bad, and I don’t agree with that conception. And it’s complicated, but there’s a marvelous book out by the philosopher Elizabeth Barnes–the book is called, The Minority Body: a Theory of Disability, and what she does is she proposes that disability is a mere difference (and she’s confining her argument to physical disability– (fair of me to mention that) and because it is a mere difference rather than this intrinsically bad thing, this can influence how we think about policy and how we think about social practices and norms. And I think that framing disability as a mere difference, and let me pause here to say that I’m very aware that within the signing deaf community there is a debate over whether deaf people ought to be considered disabled or not, and I think even that debate carries with it certain normative judgments about the goodness and badness of disability that some people wish to shy away from. But if we’re looking at disability as a way of describing just a lot of different kinds of bodies, that’s very different than looking at disability as a bad thing that you ought to or want to avoid.
And if we’re now talking about this transhumanist movement where maybe you want to as an individual shape what your body is — and, leaving aside shaping the bodies of your offspring– then you might opt to have certain things augmented, certain things shifted, certain things absent…. and because, not absent because you don’t want that experience, but because of what that experience brings. So, this is going back to that full and partial access to language piece: I get something. I’m a poet and I’m a philosopher. I get something from having partial access to communication. It isn’t just that that’s a bad experience, but it’s part of my experience as part of what makes up my flourishing life. And I think to talk about human flourishing means that we’re going to be talking about a lot of different views of what a good life is, what a flourishing life is, what a bad life is… and this pluralist approach is important to keep talking about.
DANIEL VALENZUELA: You mentioned a couple times this transhumanism movement, and you said that in this movement, basically one feature is that you can decide for yourself whether you want to make intrinsic changes about your body. With eugenics obviously it’s different. It’s one of the things that parents decide with their more long-term perspective, something about their children.
If technology evolves in such a way that we can maybe change many of these disabilities by our own choice, do you think that physical disabilities will be something that will always exist, or [will physical disabilities] naturally go away?
PROF. BURKE: With disability I think it’s or to remember how context-dependent that is and one way of thinking about this might be to imagine that you will all come to visit me at Gallaudet University which is a bilingual space. We use American Sign Language for our face-to-face communication and written English is our written modality. And so in that context the people who have full access are people who know sign language and in particular people who have the ability to use sign language in a couple of different ways.
I haven’t talked about tactile American Sign Language which is..there’s the pro-tactile movement which has to do with signing to deafblind people and having actual physical contact with the signer, the person who’s receiving the sign is touching the person who is making or producing the sign. And so if you’re in an environment where the environment is built and constructed for a particular kind of body, then the question of disability in many ways falls out. And what I’m talking about here is what scholars often refer to as the social model of disability. There are also questions that go along with that. So you have people who talk about children having a right to an open future. And I think that’s a little bit of a misnomer, because we all have constraints on our future that have to do with where we are born, who we are born to, what bodies we are born with, when we are born, and all of those pieces come together to make certain things if not impossible, very, very, difficult. And I think it’s an odd thing that we don’t attend to that, but that leads us to very complicated questions about political and social environments and resources, and who gets what.
And then you have questions like the condition and exit. Should you only have children or modify your children so that if they wanted to, they could exit that cultural community to which they are born? And some interesting examples that this might be religious community, and sometimes you do have bodily modifications as a condition of membership… I’m thinking that male circumcision as one example. And if you have constructed your life to be a part of a certain cultural community and raised your child in that cultural community, and that child at age… I don’t know sixteen or eighteen or twenty-five says, “I want out,” do they have the resources to exit that? And ought they to be given those resources, and what does that even look like? So now…and I don’t have answers to these questions. Philosophers are really good at asking questions and kind of following through on a dialogue. And that leads to the question about the future of bioethics.
So I’m worried about not just the future of bioethics, but I’m worried about the future of wide-ranging, open-ended, philosophical and thoughtful dialogue, something that we’ve been doing today and for which I’m really grateful with this podcast. And I’m worried about that because I think we’re all aware that there are trends certainly online towards shutting people down and chilling people so that there’s this chilling effect that happens and I had some trepidations about even participating in this podcast because of certain kinds of feedback I’ve had from certain groups who don’t just want to engage with me — I’m happy to engage with anyone about my ideas, respectfully — but who wish to threaten me and make all sorts of moves that make me worried about my personal safety and the safety of those I love. And yet I opted to do this, and I will be speaking up and continuing to speak up, because if I go silent then “they” — big ambiguous “they” — win. And that to me seems to be a huge threat to the future of bioethics the future of social discourse. And I think philosophers and bioethicists have a special role to play in this because the role of philosophy in the world is to be engaged, to ask hard questions. To be the gadfly, sometimes to be charged with corrupting the youth and then be sentenced to death and drink hemlock, or to escape and entertain that idea and not do it, and stand for an ideal… and it’s to train people to think carefully, and to think critically, and to have hard discourse – but not to close it off.
SARA THELEN: Professor Burke, I really hope you have enjoyed this conversation as much as we have [inaudible sounds of assent from other panelists] because it’s been really fascinating. Is there any question you’d like to leave us with that you maybe wish we would have asked or that you feel you don’t get asked often enough that we can reflect on as we close the podcast?
PROF. BURKE: I will throw something out because it’s part of the project that I hope maybe people will be learning more about in the fairly near future.
So there are as many ways to do philosophy– to think philosophically–as there are people, as there are languages, as there are cultural communities. And for the last several years, I have been fascinated with this question and idea of: what is it to do philosophy as a deaf person?
I have this project that I call “deaf philosophy,” and that project looks at two different things. It looks at how does the experience of deafness shed light on and inform some of our oldest most persistent, enduring philosophical questions. But also there’s a very practical aspect to it, and that is: what does philosophy look like when we do it with our hands, and our faces, and our bodies, a way that just isn’t the larynx and some gestural moves? How do you shape an argument in a sign language? Where you put the premises and the conclusion? What does the sequence of logic look like? And that’s a bit of far from the bioethics but it really isn’t, because I think when we start to talk about what it is to be a deaf person in the world and what it is to have a flourishing life, those are philosophical questions, and they’re questions that I have with my signing, mostly deaf and hard-of-hearing students and colleagues at Gallaudet University every day. And to think about this kind of human exchange possibly being extinguished in the next hundred years or so is a dismal thought. And I think that by talking about how we in the deaf community can do philosophy in a sign language, it is a way to show that there are many things that this deaf community – these deaf communities, plural – have to contribute to the question of what is it to be human.
SARA THELEN: Is there a place we’ll be able to access your work on that particular project if we want to read up on it in the future?
PROF. BURKE: So I’m working on a couple of pieces that are likely to appear in popular media and I don’t want to say any more than that, but once those are out I’d be happy to send you that information.
SARA: That would be great. Thank you again so much for your time and for sharing your thoughts and experience with us, and thank you all of the panelists for joining us today-
DANIEL: Yeah, thanks very much!
MICHAEL: Thank you very much.
HOSSEIN: Thank you very much Professor Burke for coming to our podcast I truly enjoyed.
MICHAEL O: Thank you for Professor Burke for joining us this was a very enlightening and wonderful podcast. Much appreciated.
PROF. BURKE: Thank you. And I wish to also extend thanks to you for making sure that I had full communication access. Our interpreter Mr. Adam Bartley has done a fantastic job, and I just want to call attention to that unseen labor. I’ve seen it very much but it’s not visible to you and that is the hallmark of excellence.
DANIEL: Yeah, actually I’m super surprised how little delay there was, because you were introducing the possibility of delays in the beginning, but really I did almost not feel anything.
PROF. BURKE: Yeah, Adam’s fantastic. [Laughs] And if I may I have a quick question: how did you hear about me?
SARA THELEN: Well we’ve had this podcast and I was looking to connect considerations of the future technologies that everyone was talking about with my experience. And so myself as an interpreter, and someone who works in the deaf community, I knew about this debate but felt like my knowledge of it was really superficial, so I just went to the Gallaudet website, and did research on the professors I could find there.. and you were an obvious great choice!
PROF. BURKE: Oh well thank you, thank you. Thank you so much and I will look forward to taking a look at the transcript and seeing the finished product.
ALL: Bye … bye everybody.
[theme music fades in]
[announcer with deep, sonorous voice resembling Don LaFontaine]
SPECIAL THANKS TO SIGN LANGUAGE INTERPRETER ADAM BARTLEY FOR FACILITATING THIS BILINGUAL EXCHANGE.
LET’S MAKE THE FUTURE.
FEATURING THE VOICES OF SARA THELEN, HOSSEIN KOUHANI, DANIEL VALENZUELA, MICHAEL OLORUNNINWO, AND MICHAEL CURRIE.
MUSIC AND EDITING: KRISTIAN PELTONEN.
VISIT US ONLINE AT LETSMAKETHEFUTURE.COM.
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