It is a paradox that many of those who oppose human enhancement or indeed who oppose reproductive choices that might influence their children or future generations for the better, that might, in short, enhance, do so partly out of fear. This fear takes a number of forms. One is fear that because some may wish to use enhancement or reproductive technologies to avoid disability or to make better children this will lead to discrimination against people with disabilities. Another is that exercise of these sorts of choices may somehow lead to denying people the freedom to have unenhanced children or even children with disabilities if that is what they want to do. In this chapter we will examine arguments that suggest that eliminating disability is an illicit form of discrimination against people with disabilities. If it is, then it is possible that enhancement might be an even more dramatic form of the same wrongful discrimination.
The idea that selecting against disability somehow constitutes a form of discrimination against those with disabilities is the most plausible1 of the arguments adduced against reproductive liberty and the exercise of the democratic presumption in considering the question of whether it is legitimate to attempt to make better people.
A thesis of this book is that all persons are equal and none are less equal than others. No enhancement however dramatic, no disability however slight, or however severe, implies lesser (or greater) moral, political, or ethical status, worth, or value. This is a version of the principle of equality.
However, the following three fallacies occur in many discussions of the ethics of choices concerning disability which suggest that reproductive liberty or enhancements involve the denial of the principle of equality; they all involve misunderstandings concerning the equality principle.
• Choosing to repair damage or dysfunction or to enhance function implies either that the previous state is intolerable or that the person in that state is of lesser value, or indicates that the individual in that state has a life that is not worthwhile or not thoroughly worth living. None of these implications hold.
• Exercising choice in reproduction with the aim of producing children who will be either less damaged or diseased, or more healthy, or who will have enhanced capacities, necessarily violates the principle or equality. It does not.
• Disability or impairment must be defined relative either to normalcy, “normal species functioning,” or “species-typical functioning.” It is not necessarily so defined.
The rest of this chapter is devoted to exposing these fallacies.
Is it morally wrong to attempt to eradicate or indeed to minimize disability? Does such an attempt constitute discrimination against people with disabilities?2 These questions are of very general importance. They are also intrinsic to the debate about enhancement since, as I have argued, there is a continuum between treating dysfunction and enhancing function. These same questions are of course also questions about enhancement, not simply because of the continuum between therapy and enhancement but because enhancing the functioning or welfare of persons with disabilities will pro rata minimize, or even possibly eradicate, the disability. Moreover, as will be obvious, the very same interventions which in injured, sick, or impaired individuals can help to restore function may, if applied to healthy people or individuals within a normal range of functioning, actually enhance normal or normally healthy functioning.
The question of whether attempts to eradicate or minimize disability or indeed to treat illness or injury constitute some sort of discrimination against people with injuries, illness, or disabilities, or whether such attempts imply that the sick or impaired, injured or disabled are somehow unacceptable as people or citizens is of course of crucial importance.
To address the question of possible discrimination against people with disabilities we will first need to distinguish two prior questions:
• Is it wrong to prefer a nondisabled person to a disabled one?
• Is it wrong to prefer to produce (or even to prefer to be) a nondisabled individual rather than a disabled one?
These questions are often confused. Without arguing for it I will here simply assert and accept that the answer to the first question is an emphatic “yes.” I will assume that it is wrong to show preference for a nondisabled person over a disabled one in any way that denies that both are equally entitled to the same concern, respect, and protection as is accorded to any citizen. For such preference would imply that the disabled person was somehow less than an equal in moral and/or political terms.3 We are of course only talking of preferences which carry this implication. Thus, a preference to be operated on by a brain surgeon who is not suffering from Parkinson’s disease is not a preference which assaults the dignity of those with this damaging condition.
The crucial question is the second one. Is it wrong to prefer to produce or to prefer to be a nondisabled individual rather than a disabled one?4 Would such a preference violate the principle of equality implicit in the first question and accepted by this author?
To try to resolve the question of the ethics of attempting to prevent disability, we might well begin by examining a series of questions which look at the different means by which we might make this attempt to see what light this throws on the ethics of different courses of action. I will list them first and then discuss each briefly.
Is it wrong to prefer to produce a nondisabled child and attempt to achieve that preference
• by wishing and hoping?
• by behavior modification?
• by postponement of conception?
• by interventions, therapeutic or enhancing (including gene therapy)?
• by selecting between preimplantation embryos?
• by abortion?
Is it wrong to hope and wish that one’s child5 will not be disabled in any way? I mean is it wrong to wish this full-heartedly, knowing that the making of the wish, perhaps publicly, might be thought by some to constitute some sort of “criticism” or devaluing of people with disability? And if it is not wrong to wish for the healthy child in this full-hearted sense, would it be wrong, if we had the power, to play fairy godmother to ourselves and grant our wish? Well, of course, in wishing that my child will not be disabled I am not committing myself to the view that should it nonetheless be born disabled it would then have a life not worthy to be lived. I am saying that it is better that my child be not disabled, but not that if it is disabled, a nondisabled child is a better child. These are, of course, different senses of “better.”
Now reverse this suggestion. What would we think of someone who wished that her child be born disabled rather than healthy? Would a decent person wish to have a disabled child? Would a decent person try to grant their own wish? Some apparently decent deaf people do in fact wish their children to be deaf like them and resist therapies to improve the hearing of their children.6 They suggest that there is a distinctive deaf culture which is in some senses better than that available to those with hearing. Perhaps the test here is whether or not we would feel a deaf parent justified in deliberately taking steps to ensure that any future child would be conceived with deafness genetically guaranteed in order to ensure that it had secured to it the benefits of deaf culture. Would we accept that this was a morally neutral piece of “medical” intervention (perhaps like male circumcision—if that is in fact morally neutral?) or rather a deliberate disabling or “mutilating” act? And suppose such a parent were fortunate enough to succeed in having the deaf child they desired, but suppose also that this form of deafness could be successfully removed with medical treatment. Would the parent be justified in denying the child the relevant therapy? We will return to this question in due course.
Suppose a woman is contemplating attempting to conceive and she knows that if she continues her consumption of alcohol or cigarettes, she is likely to disable her child in some way. Should she stop these things and modify her behavior so as to maximize the chances of her child not being thereby injured? Again I believe she should and that she would be wrong not to: wrong because to fail to modify her behavior would be to deliberately risk injuring her child.
Let’s look at postponement of conception and gene therapy together. The same arguments would apply. Suppose a woman could, by therapy in utero, remove disability; should she do so? It is difficult to imagine how one might defend the actions of a mother who would not treat illness or disability, or impairment in her child if the required process carried an acceptable level of risk given the benefits. Now suppose she is affected by a condition which will disable any child she conceives now, but if she postpones conception and takes a course of treatment she can conceive normally. Ought she to postpone conception in order to avoid having a disabled child? Again it looks strongly as though she should act so as to avoid having a disabled child. This will be true even where the child she will have after treatment will not be “made better” by the treatment and will not be the same as the child she would have had but for the treatment. In other words, we still believe that she would be right to act so that she has a healthy rather than a disabled child although it involves choosing between possible children rather than making one child well.7
Suppose, as is in fact normal practice, a woman using in vitro fertilization (IVF) techniques has had five eggs fertilized and now wishes to use her embryos to become pregnant. Normal practice has up to now been to insert two embryos in the hope of achieving one healthy birth.8 Suppose preimplantation screening had revealed two of the embryos to possess disabilities of one sort or another. Would it be right to insert the two embryos with disability or to choose randomly which embryos to implant? What would justify the suggestion that it would not be wrong to implant the two embryos with disability and thus deliberately choose to have a disabled rather than a healthy child?
But notice that in the justification for declining to implant particular embryos disability plays no role at all. The mother would be entitled to decline to implant even healthy embryos. Her reason for not implanting these particular embryos may be that they are disabled, but her justification is in terms of her entitlement to decline to implant any at all, disabled or not. For example, a woman’s reason for choosing an abortion may be that she does not want to run risks to her health but the justification must be that the moral importance, the moral status, of the embryo is not such as to require those risks of her.9
The conclusions we have so far reached are unsurprising. Of course, they are predicated on the idea that disability is somehow disabling and therefore undesirable. If it were not, there would be no motive to try to cure or obviate disability in health care more generally. If we believe that medical science should try to cure disability where possible and that parents would be wrong to withhold from their disabled children cures as they become available, then we will be likely to agree in our answers to the five questions raised on p. 89, above.
The answer to the question, What is disability? is of more than semantic importance. I have defined disability as a condition that someone has a strong rational preference not to be in and one that is moreover in some sense a harmed condition.10 I have in mind the sort of condition for which if a patient presented with it unconscious in the emergency room of a hospital and the condition could be easily and immediately reversed, but not reversed unless the doctor acts without delay, a doctor would be negligent were she not to attempt reversal. I call this “the emergency-room test.” Or, one in which, if a pregnant mother knew that it affected her fetus and knew also she could remove the condition by simple dietary adjustment, then to fail to do so would be to knowingly harm her child.11 It will be clear that on this account of disability it would not be a disability to be born a Jew or a gipsy or black in Germany in the 1930s because whereas someone might well have a strong rational preference not to be in any of these “conditions” in the stipulated circumstances, they are none of them in any sense “harmed conditions.” However, as we have seen (in chapter 4), to be born with the possibility of living only a normal life span when others can live substantially longer, and when the individual in question could have been enabled to live longer, would count as being disabled to some degree because rational people would want the chance of a longer life (remember they don’t have to accept that chance). Equally, if they were denied such a chance, they would be left in a harmed condition relative to those with longer life expectancy. Short life expectancy would surely meet “the emergency-room test.”
On this view a harmed condition is defined relative both to one’s rational preferences and to conditions which might be described as harmful. Disability then is defined not relative to normal species functioning but relative to possible alternatives. This is very important because so many of those who write about disabilities not only persist in the fallacious view that disability, impairment, or indeed illness must be defined relative to normal species functioning, or species-typical functioning, but seem unable to contemplate clear alternative accounts. Normal species functioning cannot form part of the definition of disability because people might be normal and still disabled.12 Suppose that, due to further depletions to the ozone layer, all white-skinned people were very vulnerable to skin cancers on even slight exposure to the sun, but brown- and black-skinned people were immune. We might then regard whites as suffering substantial disabilities relative to their darker-skinned fellows. And if skin pigmentation could easily be altered, failure to make the alterations would be disabling. We will return to the issue of enhancements later. For the moment it is sufficient to note that in such circumstances whites might have disabilities relative to blacks even though their functioning was quite species-typical or normal.
It is of course difficult to spell out exactly what one would and should call a “harmed condition.” Harms can be quite slight but still be harms. I have suggested that a harmed condition is one for which if a patient was brought unconscious into the ER department of a hospital in such a condition and it could be reversed or removed, the medical staff would be negligent if they failed to reverse or remove it. So, although the loss of the first joint of the little finger would be a small harm to bear, if someone came into hospital with the little finger severed at the first joint and it could be sewn on again, the staff would be negligent not to do so; they would have harmed the patient by failing to restore the finger.
These points are crucial because it is sometimes said that while we have an obligation to cure disease—to restore normal functioning—we do not have an obligation to enhance or improve upon a normal healthy life, that enhancing function is permissive but could not be regarded as obligatory. But what constitutes a normal healthy life is determined in part by technological and medical and other advances (hygiene, sanitation, etc.). It is normal now, for example, to be protected against tetanus; the continued provision of such protection is not merely permissive. If the AIDS pandemic continues unabated and the only prospect, or the best prospect, for stemming its advance is the use of gene therapy to insert genes coding for antibodies to AIDS, I cannot think that it would be coherent to regard making available such therapy as permissive rather than mandatory.
This is not an exhaustive definition of disability but it is a way of thinking about it which avoids certain obvious pitfalls. First, it does not define disability in terms of any conception of normalcy. Second, it does not depend on post hoc ratification by the subject of the condition: it is not a prediction about how the subject of the condition will feel. This is important because we need an account of disability we can use for the potentially self-conscious—gametes, embryos, fetuses, and neonates—and for the temporarily unconscious, which does not wait upon subsequent ratification by the person concerned.
One of the best and most sensitive discussions of disability occurs in Jonathan Glover’s wonderful new book Choosing Children.13 We will be returning to Glover’s ideas later but for the moment it is important to note a reservation he has over my own account of disability just discussed:
For Harris, anyone in any disadvantageous condition is harmed by whoever caused him or her to be in that condition. Because all of us have some disadvantages, we have all been harmed by the parents who caused our birth. To Harris, Philip Larkin’s gloomy conception of the role of “your Mum and Dad” must seem a huge understatement, as Larkin thought they started to “fuck you up” only after birth. I salute John Harris’s cheerful espousal of the even gloomier view, but will not follow him.14
I enjoy salutations, especially from Jonathan Glover, but he has not got me (or it: the argument) quite right in this case. True, on my account our parents are causally responsible for the genetic condition we are born in; how could it be otherwise? In that trivial sense they have harmed us, if harms attach to our genetic constitution, as some almost always do. However, they are surely not morally responsible: they haven’t deliberately “fucked us up” to the extent of the harms, unless they were, first, aware that they were likely to transmit those harms and, second, aware of a better alternative child, or a better possible alternative child, and could, realistically, have produced that child instead.
Here there is not space to argue the point, but there are powerful reasons to respect the “right to found a family” or, for those with an interest-based theory of entitlement, to respect the impulse and interest in founding a family. So long as the life of the child you will produce will be highly probably worth living, it is in that child’s interests to be born and hence you will benefit and not wrong that child15 by bringing it into existence. So long as it is not possible to produce a healthier, and probably happier, alternative child there are still good moral reasons to produce children so long as their lives are predictably well worth living. I have argued that, although there are good reasons to avoid bringing children into existence who will have lives that are predictably harmed in any way, the interest in having a child is a powerful one.16 So long as it is in that child’s interests to be born, which means so long as that child will predictably have a life worth living, then that child (though it may be born in a harmed state) is not wronged by being brought to birth. Unless of course that child is wronged because someone could reasonably have made her life more worthwhile and deliberately failed to do so. Indeed, if, despite low probability of this happening, a child turns out to have a life that is not worth living, then still she is not wronged because the expected utility of her life is positive. In Wonderwoman and Superman I suggested that
[w]e have recognized the powerful desire and the strong interest that people generally have in having children. Just as this desire should be exercised responsibly, we should also be careful not to frustrate it without good reasons.
If children are wanted, it is better to have healthy children than to have disabled children where these are alternatives, and it is better to have children with disabilities than to have no children at all.17
The proviso of course is that the children with disabilities will have lives that are worth living. Where this is reasonably predicted to be the case, even if disabilities or other harms are also predicted, it is in the child’s interests to be brought to birth.
We must now turn to the last two questions on our list, which concern selection between embryos where the embryos not selected are not implanted and abortion for disability.
It is often said by those with disability or by their supporters (who should of course include us all) that abortion for disability, or failure to keep disabled infants alive as long as possible, constitutes discrimination against the disabled as a group, that it is tantamount to devaluing them as persons,18 to devaluing them in some existential sense. Alison Davis identifies such talk with utilitarianism and comments further that “[i]t would also justify using me as a donor bank for someone more physically perfect (I am confined to a wheelchair due to spina bifida) and, depending on our view of relative worth, it would justify using any of us as a donor if someone of the status of Einstein or Beethoven, or even Bob Geldof, needed one of our organs to survive.”19 This is a possible version of utilitarianism of course, but not I believe one espoused by anyone today. On the view assumed here and which I have defended in detail elsewhere,20 all persons share the same moral status whether disabled or not. To decide not to keep a disabled neonate alive no more constitutes an attack on the disabled than does curing disability. To set badly broken legs21 does not constitute an attack on those confined to wheelchairs. If choosing to create children without disability is some sort of slight against people with disabilities, then why isn’t treating curable illness some sort of slight against (or unfairness to) those with incurable disease? To prefer to remove disability where we can is not to prefer nondisabled individuals as persons; to treat illness where we can is not to exhibit a preference for the healthy as persons—it is not the demonstration of what we might call an “existential” preference. To reiterate, if a pregnant mother can take steps to cure a disability affecting her fetus, she should certainly do so, for to fail to do so is to choose to handicap her child. She is not saying that she prefers those without disability as persons when she says she would prefer not to have a disabled child.
I have said that the decision to abort for disability no more constitutes an attack on the disabled than does curing disability. I believe this to be true, but its truth depends upon the moral status of the fetus being the same as that of the embryo and the gametes and not the same as human individuals who have developed the capacity to value their own existence—persons properly so-called. This argument I have developed in detail on a number of occasions22 and for present purposes I will simply summarize it, for the conclusions I want to draw depend not upon the truth or cogency of the argument but rather on the shared morality of which the argument (whichever side of it is taken) is a part.
If it is wrong deliberately to implant, say, severely disabled preimplantation embryos rather than healthy ones, or if it is permissible to abort a fetus in order to save the life of or preserve the health of its mother, then there must be a morally significant difference between the moral status of the embryo and the fetus and that of the mature adult. Most people believe that there is some such difference and no one could accept abortion under any circumstances (save randomly, where either the mother or the fetus can live but not both23) without accepting some version of the thesis that there is a morally significant difference between the fetus and its mother. My own suggestion is that the moral status of the embryo, the fetus, and indeed any individual is determined by its possession of those features which make you or me morally more important than cats or canaries. At no stage of its development does the human embryo or fetus possess features that relevantly distinguish it from cats and canaries, save two. They are species membership and potential. Species membership, however, is devoid of moral significance; species preference is, like race or gender preference, simply a prejudice. Potential is no more helpful: whatever potential is possessed by the human embryo is also possessed by the unfertilized egg and the sperm and so the argument that we have an obligation to realize human potential becomes the exhausting and unattractive ethic of maximal procreation.24
It is sometimes claimed that because fertilization occasions the formation of a new personal identity the gametes lack the potential that the new individual, the zygote, possesses. But personal identity has nothing to do with this argument. Consider that the zygote has a potential, namely the potential to become a glorious full person like you and me. Well, something or -things must have had the potential to become the zygote. If the zygote has value because of its potential to become a person, then whatever has the potential to become a zygote shares whatever importance the zygote has in virtue of its potential to become a person.
On my account, persons properly so-called are individuals capable of valuing their own existence. This view, making features which depend upon the capacity for self-consciousness and a minimal rationality central, is like that of John Locke and many philosophers since.25 The important point is that a view like this distinguishes persons with such capacities from embryos, fetuses, and neonates not on the grounds of presence or absence of disability but on the grounds of presence or absence of the capacities that make for moral significance.
So much for the summary of the argument. It is of course just that: a summary and not itself an argument. It will not convince those who disagree. The important point for present purposes, and one which bears repeating, is that the moral difference between the embryo, the fetus, and the neonate depends at no point and in no part on possession or absence of disability. If preimplantation embryos may be destroyed, if fetuses may be aborted or neonates allowed to die, the justification must be in terms of their moral status. Those, like myself, who argue that the neonate is not morally significantly different from the unfertilized egg on the one hand, and from cats and canaries on the other, owe an account of why this is so.26 Those who deny it also owe an account of why it is not so. I do not believe that disability is relevant to any of these accounts, whether from one side of the argument or the other.
That this is so can be seen from the other side of the argument. Alison Davis is a prominent defender of the rights of the disabled as we have already noticed. But her defense is from a “pro-life” perspective. On the pro-life view defended by Davis, abortion is never justifiable, not even to save the life of the mother, or however disabled the fetus is and the child which it will become will be. On this view the mother’s life is of no more importance than that of the fetus and both must be equally respected. On such a view abortion will be ruled out whether or not the fetus is disabled. In particular, and dramatically, abortion is ruled out if the fetus will have no chance of being carried to term and even if the mother will die if it is not aborted. The individual who takes a view like this must argue that there is no justification for killing one morally important being to save the life of another where both are of equal status.27
In the justification of a position like that of Alison Davis, handicap and disability play no role at all. Nor do they, nor need they, in the justification of views from the other side. The moral status of no individual, whether embryo, fetus, neonate, human adult, cat, or canary, is altered one jot by the existence or absence of disability.
The notion of a life not worth living or a life not worthy to be lived is often invoked in discussions of disability. I do not believe that this notion plays any role at all in the justification of decisions not to produce a disabled child in the sorts of circumstances identified above. No one, I believe, would say that the lives of most people with disability are not worth living. All that is claimed is that it would be better not to have a disability: if it would not, then it would not be a disability. Certainly, none of the decisions not to produce a disabled individual depend on making the judgment that that individual’s life would be not worth living or that disabled individuals are not worthy to live.28
If, say, I were to lose the use of my legs and become disabled to that extent (or for that matter to succumb to some mental disability or illness), I would regard it as a severe misfortune, perhaps even a tragedy, but I would not have become less valuable in the “existential” sense or less morally important on that account. My life would be no more or less subordinate to those not disabled than it was before. I hope I would find life still worth living and, if I did, that this would not change my views about the rightness of wishing for a child who was not paraplegic (or, for example, brain damaged29) nor on the rightness of acting on such a wish if I were able so to do.
I have a rational preference to remain nondisabled, and I have that preference for any children I may have and indeed for humankind30 in general. To have a rational preference not to be disabled is not the same as having a rational preference for the nondisabled as persons.
I have tried both to explain that we should try to eradicate disability and to show why this view in no way implies or involves discrimination against handicapped people. I believe that the rightness of choosing not to produce disabled individuals in the list on p. 89 is so clear that it would be an embarrassment to any view to have to differ.31 Intuitions over the cases of abortion or infanticide are likely to be more divergent. I hope I have said enough to show that disagreements over the legitimacy of aborting disabled fetuses (permitted by legislation in most countries of the European Union) are disagreements about the legitimacy of abortion and not about attitudes to disability. Infanticide, more problematic certainly, involves an extension of the same argument. Those who argue that it should be permitted do so because they see no morally relevant difference between neonates and fetuses; those who disagree must show what morally relevant differences obtain. But again these differences will have nothing to do with the presence or absence of disability.
A practical example can help us here. The United Kingdom Human Fertilisation and Embryology Act 1990 permits abortion to prevent fetal handicap up to birth. Since there can be no difference, moral or physical, between a fetus killed “en ventre sa mère” at 27 weeks, 6 days, 23 hours, and 59 minutes, and one killed as a neonate five minutes later, it cannot be a great leap of morality to at least question whether, if the abortion is morally legitimate, the infanticide might not also be morally legitimate. The same minute difference also shows that the operative justification for killing the fetus but not the neonate had in fact nothing to do with the level of disability or even the presence of disability, but rather involved prior acceptance of the legitimacy of abortion rather than infanticide (however ethically confused such acceptance might be). That is to say, the moral justification for accepting fetal handicap as a reason for abortion right up to term depends upon the judgment that abortion is permissible, justifiable, in a way that infanticide is not; justifiable, that is, in a way that admits of the consideration of a reason. The judgment that abortion can be justifiable is thus prior to the consideration of particular reasons for abortion in a given case. The fact of handicap or disability plays no role in that prior judgment. The reasons for abortion in the particular case are only considered because a judgment has already been made that abortion is permissible. In that prior judgment disability plays no part. This is shown by the fact that in the case of infanticide for disability, though the reason (the disability) is as strong as before, the justification for infanticide is clearly felt to be absent.
I have attempted to explain how abortion and even infanticide for disability are extensions of the legitimate, perhaps imperative, ethic of combating disability, and, in particular, that it is on a continuum, unbroken by any distinction of ethical significance, with attempts to eradicate disability by wish fulfillment or by the implantation of nondisabled embryos. The significant distinction is that persons are morally important in a way that no other sorts of creature are. Persons can be unjustly discriminated against in ways that nonpersons cannot. The only reason not to select healthy embryos or not to abort disabled fetuses is not because this would be unjust to the embryos or fetuses but because it might be offensive to those disabled persons who felt it either disvalued them as persons or threatened their equal standing in some way. The fear is here that the selection of embryos that do not have disabilities is somehow an expression of what Jonathan Glover has called ugly attitudes toward people with disabilities.
There are two types of indirect costs to the disabled of combating disability in the ways outlined here. There are what might be termed “subjective costs”; that is, costs in terms of the feelings of being disvalued aroused by attempts to prevent the existence of people like them. Then there are also more “objective” indirect costs in terms of the ways in which a policy of combating disability in the ways outlined might play some causal role in leading people with disability to be less valued by the community at large and consequently become the victims of discrimination.
While both these sorts of costs should be limited so far as is possible, they each present different problems. So far as what I have called subjective costs are concerned, if, as I have suggested, they are irrational or misconceived, then we must ask a pertinent question. Can there be an obligation to protect some people against inappropriate feelings that they may have at the cost of real harm and possibly pain and suffering to those who must continue to be born with disabilities just so that existing disabled people be protected from inappropriate feelings of rejection? As we have noted, these feelings might be and perhaps are aroused not simply by attempts to eradicate disability in future people but by therapies for disability in their fellows.
The second, “objective,” sorts of harm are easier to deal with. We should certainly combat such unjust and unjustified discrimination against disabled people by all means at our disposal, including legislation.
Jonathan Glover has provided an extensive discussion of what he calls “some ugly attitudes towards people with disabilities and disorders.”33 Glover notes that the “decision not to have a child with a disability may be an expression of ugly attitudes towards people with disability. But equally it may not.” Minimizing the danger of people with disability suffering any damage from ugly attitudes is obviously the objective of any decent person. While emphasizing that he accepts that, other things being equal, it is good if the incidence of disabilities is reduced by parental choices to opt for potentially more flourishing children, Glover outlines three strategies for achieving this:
To do this, we need to send a clear signal that we do not have the ugly attitudes to disability. It is important to show that what we care about is our children’s flourishing: that this, and not shrinking from certain kinds of people, or some horrible project of cleansing the world of them, is what motivates us. To think that a particular disability makes someone’s life less good is not one of the ugly attitudes. It does not mean that the person who has it is of any less value, or is less deserving of respect, than anyone else.
There are two ways we can show this. One is by making the comparison with other medical programmes. We want to defeat cancer, not because we lack respect for people with cancer and want to rid the world of them, but because of what cancer does to people.…
The second way of reducing the harm requires us to see one of the implications of our view. We want parents to have the choice of having a child without a disability because disabilities reduce the chance of flourishing. But disability is only one way in which flourishing is impaired. Poverty, bad housing, or child abuse can do so at least as much. If we single out disability among the obstacles to flourishing, the ugly attitudes may seem to be lurking there. We have to take the other obstacles just as seriously.34
I have said, and I repeat, that having a rational preference not to become disabled oneself and not to have children with disability is not the same as having a rational preference for the nondisabled as persons.
Many people talk as if the disabled are simply differently abled and not harmed in any way by so-called disability. Deafness is often taken as a test case here. Insofar as it is plausible to believe that deafness is simply a different way of experiencing the world, but by no means a harm or disadvantage, then of course the deaf are not suffering from any disability. But is it plausible to believe any such thing? For example, both Tom Koch and S. D. Edwards sometimes talk as though deafness were not a harm or a deficit.35
Imagine a child whose deafness could have been successfully treated saying the following to the parents who denied her the treatment: “I could have enjoyed Mozart and Beethoven and dance music, and the sound of the wind in the trees and the waves on the shore; I could have heard the beauty of the spoken word and in my turn spoken fluently but for your deliberate denial.” In response Koch suggests that “one may acknowledge the joy [that these things] bring others without insisting that the inability to perceive them is a harm or a deficit. After all, many persons are ‘deaf’ to the pleasures of classical music (or jazz, or reggae, or rap, etc.) and yet none assume their limits of comprehension reflect a deficit or harm.” In similar vein Edwards suggests: “I suppose it may be said that a moderately intellectually disabled person misses out on those dimensions of experience which require considerable intellectual acumen.… And it may be said of those without musical ability that they miss out on that dimension of human experience.”36
But to be “deaf” to the pleasures of classical musical is to be deaf in inverted commas, not really deaf. Musical taste can be educated, but not so hearing for the profoundly deaf. Edwards’s point is rather different. The intellectually disabled do miss out on some dimensions of experience which are closed to them in the way that music is closed to the deaf. And this is a disability. It may be a moderate or even a slight disability. Life may well be not only tolerable but truly excellent with such a disability.37 Like the loss of the end joint of a little finger, the point is not that life is not worth living without such things but that we have reasons not to start out in life with any unnecessary disadvantages, however slight.
Would the statement “I have just accidentally deafened your child; it was quite painless and no harm was done so you needn’t be concerned or upset!” be plausible? Or suppose a hospital were to say to a pregnant mother, “unless we give you a drug your fetus will become deaf, since the drug costs £5 and as there is no harm in being deaf we see no reason to fund this treatment.” But there is harm in being deaf and we can state (and have stated) what it is.
We are now in a position to return to the main question: is it better to avoid bringing people with disabilities into existence where possible?
Neither levels of impairment, nor suffering, nor normal functioning are the issue when it comes to reproductive choice. We are asking the wrong questions about disability if we think that the ethics of reproductive choice turn on degrees of disability or the subjective experience of disability. If we ask “what would justify the prevention of this life or a life like this?” or “what impairments or levels of impairment or deviation from the norm would justify abortion or selection of embryos?” we beg the question. This is because if we ask such questions, the loss of a little finger or even deafness seem doubtful candidates for reasons to prevent the existence of a person who will nonetheless have a good life.
Concentration on justifying abortion fogs the issue with irrelevant prejudices about what it takes to justify abortion. Discussions turn often on what sorts of features of existence or disabilities would justify abortion. And this is seen (wrongly) as the same question as asking what features of existence are so bad that it would be better never to have lived rather than live in such a condition. And of course we never know in advance what our embryo would grow up to be like; all we have are statistics about embryos like him or her. An example is the following:
I feel that it (testing) gives the ordinary person (my neighbour, my friends and family, the nurses and other medical professionals who may care for me) the impression that I, as a genetically disabled woman, have a duty to abort an “abnormal” foetus. I challenge this. If others see it as my duty to abort a child of mine simply because it is like me, surely according to their logic, I have no right to live either.38
Instead we should concentrate on reproductive choices and in particular the least morally problematic of such choices. Let’s start with preimplantation genetic diagnosis (PIGD). Suppose a woman has six preimplantation embryos in vitro awaiting implantation. PIGD has revealed that three have various genetic disorders and three seem healthy. Which should she implant? Does she have any moral reasons to avoid implanting those with genetic disorders? Notice two features of this case. The woman is under no moral nor any legal obligation to implant any of the embryos. The decision to implant some or none is entirely within her unfettered discretion. She doesn’t have to offer legal, moral, or any other justifications to anyone if she decides to implant none of the embryos. Under English law she may only implant up to three without a special medical reason for implanting more. Which three should she implant? Can she say, “It is a matter of moral indifference whether or not my resulting child has a genetic disorder and therefore I have no reason to select the healthy embryos”? This seems implausible. Since none of the embryos has a right or an entitlement to be chosen rather than the others, since none is a person, nor yet a moral agent, none has begun the sort of biographical life that would give it interests, her choice is relatively free. She has a reason to do what she can to ensure that the individual she chooses is as good an individual as she can make it. She has a reason therefore to choose the embryo that is not already harmed in any particular way and that will have the best possible chance of a long and healthy life and the best possible chance of contributing positively to the world it will inhabit.
If on the other hand she chooses to implant an individual destined to suffer an illness, she will have created that illness and any harm that it will do. This woman has the same reason to select against an embryo with a genetic disease as her sister, who is told that if she conceives immediately she will have a child with a genetic defect but that if she postpones pregnancy and takes a course of treatment she will have a healthy child.
The question we should ask is: what reproductive choices would be legitimate and which, if any, reproductive choices would be wrongful? Before exploring further why this is the appropriate question, we should look at what Tom Koch has to say:
Finally, the assumption of future harm as a basis for eugenic selection is difficult to justify and difficult to apply to conditions [like] …ALS/MS (amytrophic lateral sclerosis/multiple sclerosis), familial Alzheimer’s, Huntington’s chorea, etc.… To eliminate the person who might develop these conditions in midlife or later would be to deprive society at large of people like physicist Stephen Hawking (ALS), former U.S. president Ronald Re[a]gan (Alzheimer’s) or singer Woody Guthrie (Huntington’s).39
While there are obviously different degrees of regret appropriate to the idea of depriving society of some of the individuals identified, the point is that the idea that eugenic selection has any of these effects is absurd. We are here being offered the famous “aborting Beethoven” fallacy.40 To choose not to have a child with inherited syphilis is not to decide that the world would be better off without Beethoven. It is as senseless to bemoan the fact that we have elected not to create “a Beethoven” as it would be to celebrate the fact that, by practising contraception, we have just prevented the birth of “a Hitler.”
Consider the question, should John Harris have been born? (I am sure that a number of people have asked themselves this question.) Suppose my parents had been told in the year in which I was conceived that by postponing conception and taking a liter of orange juice every day for three months they would get a cleverer, healthier, longer-lived child. Had they chosen this “optimizing strategy,” three obvious questions arise:
• Would they have done wrong?
• Would they have wronged me or people like me?
• Would I have had any grounds for complaint?
I cannot see that my parents would have done anything wrong or blameworthy had they made this choice. There is no one they would have wronged or harmed. And even if they had chosen to abort “me” rather than postpone conception with the result that “I” never existed, the same would have been true. Had they done so they would not have been depriving the world of anyone with particular features or skills or who lacked particular features or skills. Society would not have been “deprived of” John Harris nor would it have been “protected from” him—he (I) simply would never have existed.41 Those people who, like me, defend abortion know that as a result both healthy fetuses and some with genetic diseases will never become persons.42 That does not mean that we deprive society of people like Einstein or Ghandi or people like Stephen Hawking or Woody Guthrie. Nor does it mean that we discriminate against such people nor against people like them.
It might of course be suggested that the mere existence of disabled people is good for society, for the rest of us, that we all benefit from their being among us. Of course we do! This is not at issue. What is fundamental is that, once we have the choice as to whether to create people with disability or not, we have to decide whether we are entitled to impose disability on some in order for others to reap the benefit of their presence among us. This seems doubtful, not least because if such benefits would justify reproductive choices that result in disability, it is difficult to see how they would not justify the deliberate disabling of some existing people to get the same benefits.
Choosing between existing people for whatever reason always involves the possibility of unfair discrimination because there will, inevitably, be people who are disadvantaged by the choice. Choosing which sorts of people to bring into existence or choosing which embryos or fetuses to allow to become persons can never have this effect because there is no one who suffers adversely from the choice.
My parents were under no obligation to attempt to conceive in any particular month. If they had conceived in any month other than the one in which I was conceived, I would not have existed. Not only are none of my possible siblings, who have been irrevocably harmed by this choice of my parents, complaining, I can assure you that had my parents chosen not to attempt to conceive that month (or had their attempt, if that is what it was, been unsuccessful) you would never have heard me complain about it.
Suppose IVF and PIGD had been available to my parents and I had existed in a petri dish.43 Suppose my parents had been informed that there were other embryos with a better genetic constitution than mine who would probably live longer and healthier lives and they had acted to optimize the life chances of any children they would have. Would I have had any grounds for complaint? Would that have constituted discrimination against people with my genetic condition? I don’t believe so. It is simply a fallacy to think that choosing between preimplantation embryos or choosing to terminate pregnancies of embryos because other embryos would have a better chance in life constitutes unfair discrimination.
This fallacy can clearly be seen if we consider again not the issue of disabilities or impairments but rather the issue of enhancements. Which brings us nicely back to the theme of this book, for enhancements show us precisely why selecting against some embryos or in favor of others carries with it no implication or judgment that the individuals selected against have lives that are in any sense not worth living or not worthy to be lived. Suppose some embryos had a genetic condition which conferred complete immunity to many major diseases—HIV/AIDS, cancer, and heart disease, for example—coupled with increased longevity. We would, it seems to me, have moral reasons to prefer to implant such embryos given the opportunity of choice. But such a decision would not imply that normal embryos had lives that were not worth living or were of poor or problematic quality. If I would prefer to confer these advantages on any future children that I may have, I am not implying that people like me, constituted as they are, have lives that are not worth living or that are of poor quality.
Most disabilities fall far short of the high standard of awfulness required to judge a life to be not worth living. This is why I have consistently distinguished having moral reasons for avoiding producing new disabled individuals from enforcement, regulation, or prevention of the birth of such individuals. This is why I have specifically and repeatedly said (and feel I must say again now) that for those who can only have children with disabilities, having such children may well be morally better, for the parents and for the children, than having no children at all.