Choosing Flourishing:Toward a More "Binocular" Way of Thinking about Disability
There is a long-standing debate between people who can seem to be arguing "for" and "against" disability. Those arguing for have often been disability scholars and those arguing against have often been utilitarian philosophers. At least since the mid-2000s, some on both sides have sought to move beyond that debate, but that has proved difficult. Here I seek two small steps forward. One step is critical, and is aimed at we who line up "for" disability. Specifically, I suggest that the phrase "choosing disability" is misleading in at least two ways. First, when someone argues that she should be able to gestate a child who is, e.g., deaf, she does not view deafness as a disability, but as something more like an enhancement. Second, when someone else argues that no one should selectively abort fetuses with traits like deafness, she is not arguing for choosing deafness, but against making a choice based on the presence of a disabling trait. The other step is constructive, and aimed at those lined up on both sides. I suggest that we should adopt a more "binocular" approach to thinking about disability: one which, using the social and medical "lenses" on disability, helps us see it in more depth. If we get better at having a conversation about what disability is, rather than arguing for or against it, we can get better at promoting the flourishing of people with disabilities.
It is hardly news to readers of this collection that in bioethics there has been a long-standing debate between people who can seem to be arguing "for" disability and people who can seem to be arguing "against" it. Those who have argued for have often been disability scholars (Garland-Thomson 1996; Lane 1999) and those who have argued against have often been philosophers of a utilitarian bent (Harris 2001; McMahan 2005). At least since the mid 2000s, some disability scholars (Shakespeare 2006; Scully 2008) and some philosophers of a utilitarian bent (Glover 2006; Kahane and Savulescu 2009) have sought to move beyond that debate, [End Page 135] but achieving that aim is harder than it sounds. In this essay, I want to take two small steps to try to help move us ahead.
One step is critical, and is aimed at we who tend to line up on the side "for" disability. Specifically, I want to critically reflect on the phrase "choosing disability," which I will suggest is misleading in at least two ways. First, when someone argues that she should be able to act to ensure that she gestates a child who is, for example, deaf, she does not view deafness as a disability, but as something more like an enhancement. Second, when someone else argues that no one should use a technology like prenatal genetic testing to selectively abort fetuses with traits like the inability to hear, she is not arguing for choosing deafness, but against making a choice based on the presence of a disabling trait.
The other, more important, step is constructive, and is aimed at those who line up on both traditional sides of the debate. Specifically, I want to suggest that we should adopt what I will call a more "binocular" approach to thinking about disability. This approach, which requires using the social and medical models of—or "lenses" on—disability, can help us see disability in more depth. My thought is that, if we can get better at having a conversation about what disability is, rather than arguing for or against it, we can get better at promoting the flourishing of people with disabilities. Since each of us either has—or loves someone who has, or, if we live long enough, will ourselves have—a disability, this is a conversation about the flourishing of us all.
THE ENHANCEMENT DEBATE AS BACKGROUND
As I explain at length elsewhere, I am a veteran of the enhancement debates (Parens 2015). I came to those debates as someone who is most comfortable as a critic of enhancement. When I first heard the idea of a drug that would make people feel "better than well" (Kramer 1993), I immediately thought of Aldous Huxley's fictional drug Soma, which gave people a feeling of contentment in the absence of engaging in the sorts of activities that human beings usually need to engage in to have such a feeling. That thought filled me, and continues to fill me, with dread.
In those days, when I first started engaging in the enhancement debates, it didn't occur to me to me say out loud a word like comfortable. Using that word, and acknowledging my partiality to a particular set of ethical intuitions, didn't seem academically appropriate. Instead, I set about trying to show why my criticism of enhancement was right and why the enthusiasts' enthusiasm was wrong. Over time, though, I came to notice [End Page 136] that there were insights on both sides, and that in trying to win the argument I was failing to do what I always fancied myself as caring most about: comprehending the matter at hand in as much depth as I could.
As I participated in the debates more and more, it became ever clearer how frequently critics and enthusiasts were each emphasizing one pole of some fundamental conceptual binary, and speaking as if recognizing the pole they were most comfortable with required ignoring the other. When, for example, enhancement enthusiasts would talk about the nature of human beings, they would emphasize that we are, by nature, creators. They observed that, as humans, it is our job to creatively transform ourselves and the world; only in shaping ourselves and the world do we fulfill our natures. When critics talk about the nature of human beings, they would emphasize that we are, by nature, creatures. We have been thrown into the world by forces that we have not made, and it is our job, as humans, to learn how to accept, or affirm, or appreciate how we are; only in accepting and affirming how we have been thrown into the world can we fulfill our natures. In a word, enthusiasts are partial to the attitude or stance of shaping and critics are partial to the attitude or stance of acceptance.
When, for example, enthusiasts talk about the feasibility of using technology to "enhance" ourselves, they emphasize the way in which human bodies are like machines, which work in predictable ways. If you want to fix or upgrade the machine, all you need to do is remove the broken or outdated part, and replace it with a new one. When critics talk about the feasibility of using technology to enhance ourselves, they emphasize the way in which human bodies are like ecosystems, which are fragile and work in unpredictable ways and resist our efforts at shaping.
Enthusiasts and critics emphasize opposed insights regarding the nature of technology as well. When enthusiasts talk about the nature of technology, they emphasize that it is a tool that we can put to whatever purposes we see fit. On their view, technology is value-neutral. When critics talk about the nature of technology, they tend to emphasize that it is a frame, which shapes our experience of the world. On their account, technology is value-laden.
The list of binary oppositions goes on, but those are enough to make my point: we should not have to choose one pole or the other. We should not have to choose between thinking that human beings are by nature creators or creatures, that our bodies are like fixable and stable machines or like fragile and dynamic ecosystems, nor that technology is value-neutral or value-laden. Each pole contains an insight. [End Page 137]
THE METAPHOR OF BINOCULARITY
As I came to notice that in my comfort as a critic I was agreeing to make conceptual choices that were at odds with my ambition to comprehend the matter at hand in depth, I encountered Jonathan Glover's metaphor of "binocularity" (Glover 2003). As Glover observes, people with two well-aligned and working eyes are able to perceive depth, to see in three dimensions, because their brains can integrate two slightly different sets of information about the same scene, which arrive by way of their two eyes.
Specifically, Glover was talking about comprehending what persons are "in depth," and with his metaphor he was inviting us to learn to integrate significantly different sets of information about what persons are. Essentially, he suggested that we need to see ourselves through two lenses, which can at first seem utterly incompatible.
Through one lens, persons are "objects." If, for example, you want to comprehend the words that you are reading at this moment, it could help you to have an account of the exceedingly complex network of causes that gave rise to them. Such a causal account could include, for example, how my genes were being expressed when I wrote them, how my neurons were firing, which microbiota resided in my intestines, how I was reared, where I went to school, what country I grew up in, how my written and spoken interactions with the editors of this collection went, etc. Because I am an "object" it is, at least in principle, possible to explain why I wrote the words you're reading.
Through the other lens that we need to comprehend persons in depth, however, we can see persons as "subjects." If you want to understand what it is like for me to be me, you will need to ask me, and you will need to listen to what I say. If you only explain why I am saying what I am saying, if you don't also try to understand how I experience being in the world, you will fail to comprehend me in depth, and thereby you will fail to show me the respect that I, as a person, deserve.
If, to take a different sort of example, I exhibit symptoms of depression and you are my doctor, it may sometimes help you to help me if you see me as an object, and it may sometimes help me if you see me as a subject. To be maximally helpful, you will oscillate between the lenses. Because you can see me as a subject, you can inquire about what I think are the reasons for my symptoms. What do they mean to me? What experiences do I think have given rise to them? As a subject, I can give reasons, and sometimes the giving of, and listening to, reasons can improve my mood. Because you can also see me as an object, you know that some of the [End Page 138] reasons I offer are exaggerations, or off-base, or beside the point, and you might help me understand the unconscious—whether "psychological" or "bodily"—forces that are driving what I'm saying. Because you are attuned to bodily forces that might be influencing my mood, you might prescribe a medication, which might improve it. Medication also might make me better prepared to hear your interpretation of the "psychosocial" forces that are giving rise to my mood, which might also help. The point here is that, if we want to help each other, we have to be able to oscillate between seeing each other as subjects and as objects. If you lapse into using the one lens that you are most comfortable with—if you lapse into "monocularity"—you will not be able to help as much as you say you want to.
Having said all of that, I do not think that we can actually achieve perfect conceptual "binocularity" any more than we can see Wittgenstein's figure of the duck–rabbit as a duck and as a rabbit at the same time (Wittgenstein 1953). Instead, we have to settle for oscillating between seeing the figure as a duck and seeing it as a rabbit; we have to be able to shift our attention, from using one lens to using the other. When we see the figure as a rabbit we can remember that we need to see it as a duck, and vice versa. When we see someone as an object we need to remember to see him as a subject, and also the other way around. Even if achieving perfect binocularity isn't possible for animals like us, we can aspire to integrate the significantly different sets of information about, the different insights regarding, what we're talking about, at least if what we're talking about are issues like the nature of persons, or the nature of disability—or the nature of enhancement. And, again, for me, it was after being swept up in the "enhancement" debate for several years that I encountered the metaphor of binocularity and found it to be such a useful tool for helping to resist the undeniable pleasure of trying to win a point in the debate for or against enhancement. It was then that I started, instead, to try to engage in a conversation about enhancement, a conversation that could draw on the insights from both sides.
Now, when I say that we can have a conversation about what enhancement is, I am assuming that no one is against what we might call a true enhancement—where by "true enhancement" I mean an intervention that will promote someone's flourishing as she, upon reflection, understands it (Parens 2015). With the word flourishing, I am trying to get at something close to what Aristotle was getting at in the Nichomachean Ethics with the word eudaimonia. (Often-used alternative translations are happiness and well-being.) I take flourishing to be what we want, not for the sake of [End Page 139] something else, but for the sake of itself: the experience of being engaged in activities in the world as it truly is and as we truly are.
Critics are against what we might call fake or putative enhancements: interventions that are advertised as promoting flourishing but that in fact thwart it. They are not against Huxley's Soma because it is an enhancement, but because it isn't (Harris 2007). They are against it because it gives people a feeling of flourishing in the absence of engaging in the sorts of valuable activities that human beings usually need to engage in to have that feeling—activities like working and loving.
Two Lenses Can Help Create In-Depth Comprehenson of Disablity
I started with the assertion that bioethics can appear to pit people who are for disability against people who are against it—with disability scholars featured prominently on the side for disability and philosophers of a utilitarian bent featured prominently on the side against. For the sake of developing my suggestion regarding the value of taking a more "binocular" approach, I need to say a few words about the insights that I take to be at work in the models of disability that each side emphasizes.
To articulate the disability-positive view, disability activists have long appealed to one or another version of "the social model" (Shakespeare 2014). It is hard to exaggerate the power and profundity of this lens, which has done so much to bring into view the difference between what people with disabilities think about their lives and want for themselves, and what people (temporarily) without disabilities have assumed about the lives and needs of people with disabilities.
Of course, one of the fundamental insights at work in the social model is that, contrary to the assumptions of temporarily able-bodied people, people with disabilities usually do not experience their disabilities as "bad." More often, if not always, they experience their disabilities as "mere" features of their lives (Barnes 2014). Living with a disability can be for a person with a disability as mere a fact about her life as being short or female can be for someone who lives with one of those features. Life with disability can be as full and flourishing as life without it.
Moreover, as the social lens helps us to see, these features are sometimes not merely "mere," but good. One frequently offered example is a blind person who can be better at listening to or performing music than most sighted people, or who might not be distracted by the appearance of others the way that sighted people can be. [End Page 140]
A complementary insight at work in the social model of course is that what is difficult about life for people with disabilities does not have to be. Trying to get around in a wheelchair in a city without curb cuts can make life difficult. Getting around in a wheelchair in a city with curb cuts can be no more difficult than, and sometimes preferable to, getting around in the more typical way. The difficulty associated with disability isn't inherent in the trait, but is a product of a given social system's failure to accommodate this natural form of diversity.
And to articulate what the social model is, it has been useful to contrast it to "the medical model." In this model, which is assumed by the sorts of philosophers that the disability scholars argue against, disabilities are, by definition, limitations on one's ability to engage in an activity that is typical for members of the species, and thus are bad. According to the medical model, if disabilities were not bad, we would have no reason to encourage doctors to try to eliminate them and would have no reason to object to parents who wanted to try to create them (McMahan 2005). According to the medical model, we seek to eliminate disabilities wherever we can because we think that, all else being equal, life without a disability is preferable to life with one.
Notice that, at least in these debates, disability scholars tend to have in mind cases where all else is not equal. They have in mind cases of human beings who are already in the world, and who are getting on with their lives. The disabling trait is one among myriad traits, which, taken together, interact to constitute a life. These scholars are right to remind those who invoke the medical model that it is an epistemic and ethical mistake to let one trait stand in for, or represent, a whole person. To let one trait stand in for a whole person is, in the language of Adrienne Asch and David Wasserman, to commit the "sin in synecdoche" (Asch and Wasserman 2005). Indeed, all else is not equal for anyone already among us. Each of us is constituted by a unique set of traits, and each of those traits closes off and/or opens up opportunities.
By contrast, scholars who invoke the medical model tend to begin from contemplating a reprogenetic choice about what sort of persons to bring into the world. They are contemplating, for example, the preimplantation or prenatal contexts—which involve choices whether to selectively discard an embryo or selectively abort a fetus. In these cases, there is a sense in which all else is equal, if only in the sense of equally unknown. That is, at least up until very recently, with the advent of more powerful technologies that allow ready access to information about many traits at once, the [End Page 141] decision whether to implant this embryo or abort this fetus has been based on knowledge of a single trait. It is in these "traditional" reprogenetic contexts where the sin of synecdoche looms especially large and poses a danger we need to acknowledge.
Specifically, we have to grant that our views about embryos or fetuses with disabling traits can infiltrate and contaminate our views of persons already among us with disability traits. But those of us who support a woman's right to choose think that embryos and fetuses on the one hand and persons on the other are different in kind. It is not incoherent to say that, on the one hand, persons with muscular dystrophy or spinal bifida or Down Syndrome deserve social resources and can have marvelously flourishing lives, and to say on the other that, if all we knew about two embryos was that one had muscular dystrophy and the other didn't, some reasonable people would choose the one without. Some reasonable people might choose the one without the disability on the grounds that the person it developed into would have one fewer known limit on her opportunities to flourish. As the medical model reminds us, it is because we believe that disabilities are, when all is equal, limiting that we invest resources into trying to prevent, cure, or otherwise eliminate them. Again: we really can accept the way in which things are never equal for people already in the world, and the way in which they can be equal for prospective parents contemplating an embryo or fetus that has not already become a person in the world.
Of course, the model or lens that lets us see some essential features of any given phenomenon keeps us from seeing others. When philosophers of a utilitarian bent—and others (Stramondo 2016)—use the medical lens, they see the difficulty that can inhere in disabling traits, but they can miss the ways in which social accommodation can make much of that difficulty disappear, and they can miss how some of that difficulty can actually become a source of strength and fulfillment. At least in part because they can miss seeing what life is really like for people with disabilities, they are at increased risk of failing to take people with disabilities at their word. When those who wield the medical lens hear people with disabilities say that their lives are as flourishing as anyone else's, they can move much too quickly to invoke the Marxist notion of "false consciousness," according to which someone believes something false about her situation because some internal or external force makes it impossible for her to see or acknowledge the painful truth of the matter (Parens 2015). Alternatively, those who wield the medical lens can invoke the more contemporary notion [End Page 142] of "adaptive preferences," according to which one says that she prefers her current situation but really has just adapted to it because she can't change it (Schermer 2013). The notions of "false consciousness" and "adaptive preferences" can both get in the way of listening to and respecting what people with disabilities say about what it is like to be them. Those notions can get in the way of remembering that we all have to adapt to the unique set of traits and limits that we're thrown into the world with, and that if we do so successfully, it's called being resilient.
When, however, disability scholars use the social lens, in addition to seeing much that is profoundly important, they can also fail to see or remember, as the disability scholar Eli Clare has put it, "the daily reality of our bodies" (Clare 2001). Jackie Leach Scully (2008) and Tom Shakespeare (2014), among other disability scholars, have made the same point. Ignoring some difficult features of people's experience of disability can't in the end advance the flourishing of people with disabilities. To do that, we need to comprehend the whole experience, which we can get better at if we oscillate between the medical and social models. It strikes me that Tom Shakespeare has it exactly right when he writes:
Social modellists would claim that so-called "medical modellists" assume that "people are disabled by their bodies," whereas they say instead that "people are disabled by society, not by their bodies." I would argue that "people are disabled by society and by their bodies."(2014, 75)
Yes, the way we construct our societies can thwart the flourishing of people with disabilities. And the bodies of people with disabilities can also thwart their flourishing. We don't need, and should not try, to choose just one lens to comprehend disability. And to be fair, as I mentioned at the start, it is not only "disability scholars" like Jackie Leach Scully and Tom Shakespeare who have recommended, if in different language, the sort of "binocularity" that I am recommending. Philosophers of a utilitarian bent like Guy Kahane and Julian Savulescu have also, using different language, made a similar move (2009).
Nor do we need to choose between the stances or attitudes that, as I mentioned earlier, have plagued the debates about enhancement for so long. We don't have to choose between the attitude of accepting the bodies we've been thrown into the world with and the attitude of shaping them. Sometimes accepting the fact of disability will be wise, and sometimes exercising our creativity to change it will be. If we aspire to help human beings to flourish, we need to be able to oscillate between honoring our capacity for acceptance and our capacity for shaping. [End Page 143]
Finally, then, I can explain how the phrase "choosing disability" can be misleading. To see this, I want to focus first on the term disability and then on choosing. At least sometimes, when people speak of "choosing disability," they have in mind the example of a couple of Little People who want to use preimplantation genetic diagnosis (PGD) to choose an embryo that will become a Little Person (Sanghavi 2006). The idea is that, for parents of short stature, having a child of short stature would make it easier to inhabit the same space and would facilitate the day-to-day activities of childrearing. It would facilitate the family's flourishing. Though this hypothetical example has been widely discussed, I acknowledge that I am not aware of a case where Little People have taken the step to use PGD in that way.
The most commonly offered example of "choosing disability" is of a couple seeking to have a child who is deaf. Partly this is because of the well-known case of the lesbian couple, Candace McCullough and Sharon Duchesneau, who identified as members of the Deaf community, and who, in their effort to ensure that their child would be deaf, sought a sperm donor who was. As we all know, the couple wanted to welcome their child into a culture with a language and institutions and tradition that they take to be rich and beautiful (Sanghavi 2006).
By contrast, none of us has heard anyone make the case for using PGD or sperm donation to ensure the birth of a child with, say, muscular dystrophy or spina bifida. This, I think, is because there are no good reasons for prospective parents to think that muscular dystrophy or cystic fibrosis will facilitate a child's flourishing. Children with those disabilities can of course flourish, but no parent would seek them out for the sake of promoting their child's flourishing. (One might think that the reasons of the parents who want to select for deafness or short stature aren't good enough to warrant the intervention, but that is a separate issue.)
My point is simple. When people speak of choosing deafness or short stature, they are not choosing those traits because they take them to be disabilities. They are choosing those traits because they take them to be enhancements, where by "enhancement" I mean an intervention that will facilitate a child's or a family's flourishing, as they understand it. They are choosing flourishing, not disability.
To see the second way in which "choosing disability" can be misleading, it helps to focus on the first word in the phrase: choosing. Again, it helps to think of the reprogenetic context. Perhaps more powerfully than [End Page 144] anyone else, Adrienne Asch sought to dissuade parents from using prenatal genetic testing to select against disabling traits. As I mentioned above, she thought that, insofar as selective abortions were based on the knowledge of a single trait about the fetus, they committed the sin of synecdoche: a single trait was allowed to stand in for and thus obscure the view of the whole person to be. This sin, she thought, was rooted in ignorance of what life with disability is really like. It embodied the erroneous, hurtful view that disabling traits make it impossible for people with disabilities to flourish. Moreover, she thought that selective abortion was an ethical mistake because it revealed a problematic attitude toward being a parent and having a child. Specifically, she thought that good parents needed to learn to accept their children as they were—not as they wished they would be. Good parents had to exhibit an attitude of openness to the surprise that every child is (Asch 1989). Pregnancy was the time, she thought, to begin exhibiting the capacity for unconditional love, for openness to the child's own way of being. It was the time to relinquish the fantasy of being in control, to start practicing the art of acceptance and letting things be.
Because Asch opposed selective abortion, one might interpret her to be for "choosing disability." But one would be wrong. She didn't want people to choose "ability" or "disability." She wanted them to stop exhibiting the "selective mentality" (Parens and Asch 1999) in the context of procreation. As I said a moment ago, she wanted people to stop trying to impose their choices on the shape of their children.
Asch wanted us to cease being preoccupied with anatomical traits, which she took to be ethically irrelevant distractions (Asch 1998). She thought that investing attention in whether someone was blind or deaf was as wrong as investing attention in whether someone was black or gay. So, for the same reason she thought that parents should not select against deafness, she thought they should not select for deafness (Asch and Wasserman 2005). She cared about the stance that parents adopted, not about the anatomical traits that the children possessed. If parents didn't adopt a stance of acceptance, she thought, neither they nor their children could flourish to their maximum potential.
All of which is to say: it is not only misleading for disability scholars to say that prospective parents choose disability; they are choosing what they take to be an enhancement. It is also misleading for disability scholars—at least those who share Adrienne Asch's view—to say that they are for choosing disability; it would be more accurate to say that they are for being more open to, and accepting of, disability. They are for recognizing and celebrating the fact that people with disabilities can flourish. [End Page 145]
HOW CAN A MORE BINOCULAR APPROACH HELP US CHOOSE FLOURISHING?
The metaphor of "binocularity" can help us think about what disability is, and it can also help us think about what persons are. If we get better at oscillating between the medical and social models of disability, and if we get better at remembering that persons are objects and subjects, we might do better in helping each other think through decisions about whether to use medical interventions in the contexts I've mentioned in this essay.
As I mentioned earlier, when I say that we are "objects," I am calling attention to the fact that our experiences, including of course our thoughts, have myriad causes. There is no ghost in the machine, no cause of our experiences or thoughts other than the causes studied by natural and social scientists. Some of those causes are conscious, but many are not. Among the usually subconscious causes of our preferences are cultural forces, which can be so powerful that we don't notice, much less question, them. Ineluctably, they influence our conception of what is and isn't necessary for someone to flourish.
What I am getting at is that, if we aim to show each other respect, at the beginning of the day, we need to challenge each other to notice the cultural forces that are bearing down on us and pushing our decision in one direction or another. Whether we are inclined to choose for or against technological intervention, there are forces that need to be brought to consciousness. I mentioned above that the notions of "false consciousness" and "adaptive preferences" can be used to dismiss or ignore what people with disabilities say about their experience. In that way, those notions can be part of disrespecting people.
Here, though, I want to recognize the way in which those same notions can be used in efforts to show people respect. Because these cultural forces are bearing down on all of us all the time, none of us is immune to suffering from false consciousness or articulating adaptive preferences. Because we know that about ourselves, one way we can show each other respect is by helping each other examine our preferences. At the beginning of the day, we show each other respect by challenging each other to notice those forces—whether one's preference is for or against intervention. So, if prospective parents say they want to use a reprogenetic technology like PGD to ensure that they will have a child who cannot hear so that that child will be assured entry into the Deaf community, they should be challenged. Insofar as such a couple is employing the social model, the medical model can help to bring into view additional insights of possible [End Page 146] value. It can require them to see, even if just temporarily, deafness as a disability, in the sense of a source of difficulty, which would limit their future child's opportunities, and thus flourishing, in ways that that child would not choose for herself. Indeed, in her new book, Laura Mauldin explains how the Deaf community's relationship to cochlear implants is evolving (Mauldin 2016).
Insofar as prospective parents who say they want to use a reprogenetic technology like prenatal genetic testing to ensure that they will have a child who is not deaf are employing the medical model, challenging them to use the social model can be a sign of respect: Are you acting out of ignorance regarding what being Deaf is like? Have you tried to understand the ways in which deafness is but one of the myriad traits your child would have, and that all kinds of children can flourish and can contribute to the flourishing of their families and communities?
If we show each other respect at the beginning of the day by treating each other as objects—in the sense that we help each other think about the forces that are determining our preferences—at the end of the day, we show each other respect by treating each other as subjects—in the sense that we defer to each other's truly informed choices. (The rare exception is when someone does not have the capacity to make an informed choice.)
CLOSING THOUGHTS ABOUT MOVING FORWARD
No one regrets the boringness of that liberal conclusion more than I. It is of some solace to know, though, that in reaching it, I find myself in the company of both Adrienne Asch and Julian Savulescu. Asch argued more persuasively than anyone that good parents should eschew prenatal genetic testing and accept the child they got (Asch 2000). Savulescu has argued as persuasively as anyone that good parents should avail themselves of PGD to ensure that their child doesn't have a disability (Savulescu 2001). But neither of them has argued for overriding the truly informed choices of parents. Both are prepared to tolerate choices they disagree with. At the end of the day, both are prepared to, out of respect for persons as subjects, defer to parents' truly informed choices.
Except in the rare case of the parent without capacity, prospective parents want themselves to flourish and want their children to flourish, and they know that those two things are inextricably entwined. If a prospective parent chooses for her child to be deaf, it is not because she thinks that deafness is a disability. It is because she thinks it is an enhancement. She is not "choosing disability." Moreover, when someone argues against [End Page 147] selective abortion for disabling traits, she is not arguing that people should "choose disability." She is speaking up for an attitude or stance of openness and acceptance, a stance that resists the temptation to control the shape of one's child. She is saying that the flourishing of parents and children depend on the cultivation of that stance.
And if someone with paraplegia says that she has found special compensations in having paraplegia and says that she is flourishing, she should be taken at her word (Barnes 2009). She has accepted and affirmed the life she has. To do so is of course a huge achievement. It is one of the greatest achievements any of us can hope to attain: learning how to flourish with the finite and unique set of abilities that constitute us. And, we also need to remember that she did not choose her disability.
It is time to get over picking the side of "the disability scholars" or the side of "the philosophers of utilitarian bent." If we want to think about disability in depth, we need to get better at oscillating between the social and medical models. If we want to promote the flourishing of people with disabilities—which, again, is or, if we live long enough, will be all of us—we need to be able to oscillate between seeing ourselves as creatures whose job is to accept our children and ourselves as we are, and as creators whose job is to shape our children and ourselves. The task is to balance those tendencies that push in opposite directions. As we try to do that, perhaps it can help to remember that, for ourselves and for our children, it is not disability, but flourishing, that we choose.
Erik Parens, PhD, is a senior research scholar at The Hastings Center and is Director of The Hastings Center Initiative in Bioethics and the Humanities. His most recent book is Shaping Our Selves: On Technology, Flourishing, and a Habit of Thinking.
The author wishes to thank the organizers of, and the participants in, the workshop on choosing disability at the University of Pennsylvania (November 6, 2015) for their helpful comments. He also thanks two anonymous reviewers. Support for the preparation of this essay was provided by the National Human Genome Research Institute (grants P50 HG007257 and R01 HG008805-01A1).