[Update at the end]
Eve Garrard has a very interesting and thought provoking post on normblog (HT: Pajamas Media) called Choosing disability in which she raises some very difficult ethical issues:
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.
She struggles with trying to understand why people have such a powerful reaction to the story and concludes that:
... 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?
I will not directly address the moral and ethical issues here (though it is implicit) because the psychological dimensions are highly enlightening and may have some more general implications.
The original article in the Guardian is unintentionally revealing of the key parental conflicts that are involved in the question. In 'I hoped our baby would be deaf' the mother is quoted:
This is how Paula Garfield, artistic director of the London-based theatre company Deafinitely Theatre, felt when she was expecting her baby daughter, Molly. "When I was pregnant I did hope the baby would be deaf. Obviously, I would have loved a hearing baby equally, but inside, I really hoped she would be deaf like me." [Emphasis mine-SW]
The first point here is that, like any parent, the mother desires a child who will be like her. This reflects the narcissistic investment a parent has in her child. A source of concern in her statement is that most parents consciously desire that their child will surpass them.
[The unconscious competitive conflicts of parents toward their children, who are younger, filled with possibilities, and soon to replace their parents, have been written about many times. The concept of a Laius complex may be unfamiliar to many people but is germane. Laius was Oedipus's biological father who sent his infant son away to be abandoned and die, for fear the child would one day kill him as predicted by the Oracle at Delphi. When the rejected son, who loved his adoptive parents but didn't know of his provenance, fled because of the same prophecy, upon his return to Thebes he had a confrontation with Laius, neither knowing their relationship to the other; Oedipus killed Laius, and the rest of the story entered the Psychoanalytic lexicon more than 2500 years later.]
The Guardian story also includes some further, interesting comments about deafness and the community of the deaf. The father, Tomato Lichy, says,
"Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in. We're delighted that that is something our daughter can share as she grows up."
There is a fine line between compensating for a disability and idealizing the disability, and Lichy is approaching it. He proceeds to leap across the line in the next section of the article:
For the couple, it is very much Deaf with a capital D, denoting their identity within a cultural group, rather than a medical aggregate of people with less hearing than the majority. To them, deaf, like "black", is not purely a description of a physical attribute but an expression of a cultural identity. British Sign Language, with its own complex vocabulary, regional dialects and syntax, is one aspect of this culture. And deaf people aren't lonely, lifeless individuals who lie awake at night lamenting the tragedy that they can't hear the birds sing....
"Most people's impression of deaf people is that they have no life and are missing out on lots of things," says Garfield. It's partly a result of how it is presented: "When people have written about deafness in plays, films and the media, they always say we 'suffer' from deafness, or we live in a 'silent' world. But our world isn't silent. That's rubbish. We're the noisiest people on earth!"
In Lichy's view, deafness is not about loss, it's about gain. "If only people knew about the deaf community, our rich culture and history, our parties and the closeness and pride that we feel in our shared identity. Our language is so colourful, so alive. That's our sound, that's our music."
This is the idealization of a defect. Not only do they deny that being deaf is a loss, they insist it is really a gain.
It is commendable that deaf people have been able to develop a language and culture that offers many compensations for their disability, and it is understandable that as part of a process of coming to terms with one's disability that there should be some over-compensatory idealization of the disability; this is natural, but problematic.
If a normal person becomes deaf (or loses any of their faculties), the initial reactions of denial, shock, and grief, must give way to a process psychologically akin to mourning. It is necessary to work through the pain of losing an ability; only then can the person free up the emotional energy they will need to begin the often arduous process of rehabilitation. This is necessary and will continue to be necessary until our burgeoning bio-tech industry develops ways to repair and replace lost function.
Already we are seeing deaf parents refusing cochlear implants for their hearing impaired children. Although the desire to spare a child surgery can be commendable, the suspicion that these parents are fearful that their child will become more distant from them by virtue of an increasing ability to navigate in the hearing world is warranted.
It seems to me that the ethical questions raised by Garrard's post are premature. Presumably by idealizing their deaf state, the parents can avoid the pain of their own deafness and the narcissistic injury of having an impaired child. The real problem will occur when the parents are faced with the choice of allowing their child to grow up deaf or allowing them to gain hearing through the magic of modern medicine.
The story of King Solomon's wisdom is instructive:
Although Solomon was young, he soon became known for his wisdom. The first and most famous incident of his cleverness as a judge was when two women came to his court with a baby whom both women claimed as their own. Solomon threatened to split the baby in half. One woman was prepared to accept the decision, but the other begged the King to give the live baby to the other woman. Solomon then knew the second woman was the mother.
In this case, the first woman put her narcissistic needs in front of those of the child. The baby was treated as if it were her possession and her interests were paramount. The second woman put the welfare of the child first, and by this was known to be the real mother. One wonders if in the service of idealizing their defect as a way to avoid the psychic pain of having a disability, the deaf parents are able to separate what is best for their child from what is best for them.
Update: Sigmund,Carl & Alfred points out that the same kind of idealization of disability that is at work in these people can be seen in many other places.
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