The case of the deaf couple who deeply wanted to have a deaf child, and were pleased when it turned out that they did, may set ethical alarm bells ringing in some people's minds. How can it be right to want your child to be disabled? To many, that's just obviously wrong, obviously a dreadful thing to hope for.
What the deaf couple in question say about this is that being seriously deaf isn't being disabled at all, it's just being different, and talking a different language from that used by hearing people, but an equally worthwhile one. This in itself is a contentious claim. Many people would be quite prepared to acknowledge that Sign is an entirely legitimate language, and also that there may be real compensations for lack of hearing, real experiences and competences which are more available to deaf people than to hearing ones. Nonetheless, a strong intuitive feeling remains that there are some losses - central aspects of music, for example - which are so significant that they warrant the claim that profound deafness, at any rate, is a genuine disability.
However things may stand on the question of whether deafness is rightly thought of as a disability, there's an opposing claim that can be made about the desire to have a disabled child, a claim on the other side, so to speak, from those deaf parents, and this claim also turns out to be contentious. It arises in cases where the child in question is unarguably disabled, where the facts of the matter don't really leave much room for arguments about mere difference. In such cases, we're inclined to think that it's wrong to hope for (and even more wrong to choose to have) a disabled child, because that would involve wishing or choosing to harm the child. The thought here is that having a disability involves being harmed. And this is the thought which surprisingly turns out to be more contentious than it looks.
If a child who is born without any disabilities later acquires one, then in most cases there's no question but that she's been harmed. But where a child is born with a disability which is genetic in origin, and which though disabling still leaves her with a life worth living (which most disabilities do, of course), then it's not so clear that we can say that she's been harmed by having a disability. The reason is that for that child to have been born, she has to have those genes, including the one(s) coding for the disability. As our biotechnological knowledge stands at the moment, the only way those parents could have prevented that child being born with the disabling gene is to have ensured that she didn't get conceived, or if conceived, then to have ensured that she wasn't brought to term. There are only two choices available with respect to that particular child: either she's born with a disability, or she doesn't get born at all. And if she's going to have a life that's worth living, as most disabled people do, then how can we say she's been harmed by the disability? Being harmed means being made worse off than you would otherwise have been. But this child's only alternative to having been born with a disability is not to have been born at all. Why would that be preferable for her? In what way is being born, and having a life worth living, worse than never being born at all?
It seems that it just must be the harm to the disabled child herself that's the basis of our disapproval of parents who want to have a disabled child. But in cases of genetic disability it's actually hard to show this; and that's because it's hard to show that being disabled has harmed that very child, has made her worse off than she would otherwise have been.
Perhaps the real locus of our disapproval is elsewhere. Perhaps we feel that parents who don't experience the usual parental hope that the newborn child is healthy are heartlessly ready to bring more suffering into the world than there need be, and that's what we object to. But that's a very general worry about overall totals of suffering, whereas the view that it's wrong to deliberately hope for, or choose to have, a disabled child does seem (from the inside, so to speak) as if it has something to do with the welfare of this particular child. It's a widespread moral feeling, but it's difficult to justify. Many of the great debates in bioethics are like that: we find that we have strong moral views, but can't always see what (if anything) is sustaining them. The issue of choosing disability shares with the issues of euthanasia and abortion and genetic engineering the capacity to evoke powerful moral responses for which it's sometimes hard to provide adequate reasons. How are we to make sense of this?
[An attempt to answer that question is contained in a joint paper by myself and a colleague, to be published in The Monist in October 2006.] (Eve Garrard)