A lot of noise over silence

Sharon Duchesneau was deeply hurt when her father told her that, if she ever had children, she should check with a geneticist to assess the risk that the baby would be deaf, like her. “I felt put down, like it would be bad if my child was deaf, or it was a negative thing to bring a deaf child into the world,” she says. “I took it personally.”

The personal has now become political. Duchesneau and her female partner, Candy McCullough, who is also deaf, are at the centre of an ethical storm over their decision to conceive children using a deaf sperm donor to increase the chance of the children being deaf. To many hearing people, it sounds like one of those stories that could only come from America, that land of the free and home of the bizarre.

But the chairman of Melbourne IVF, John McBain, says a Victorian deaf couple approached his service three years ago wanting help to conceive a deaf baby. “They didn’t have a fertility problem, they just wanted to maximise the possibility of having a deaf child,” he says. “We couldn’t help them . . . We didn’t know how to increase their chances of that. We were able to take the coward’s approach and say there was nothing we could do.”

To many deaf people, the media debate about Duch-esnau’s choice is offensive because it implies that deaf people are defective. The issue for them is not designer-disability but designer-difference. They do not see themselves as people with a disability but as members of a minority cultural group with its own language (auslan), values and community.

Simon Andersson, a deaf man who is an actuary and secretary of the Victorian Council of Deaf People, says: “I get the feeling that people who object to a deaf couple having a deaf baby are objecting to deaf culture. There’s nothing wrong with being deaf. Deaf is fine. Deaf is OK.”

That is not a new concept to ethicists, who have been debating for some years cases like Duchesneau’s. Several examples of deaf children deliberately conceived through embryo selection have been reported overseas, says bio-ethicist Nicholas Tonti-Filippini. But for the wider hearing community, Duchesneau’s stand is confronting. Is it arrogant for “normal” people to assume their lives must be better than the lives of people who lack hearing or sight or mobility? Or has the rebadging of “disability” as “difference” turned into denial, making Duchesneau’s children victims of what one British columnist called “parental psychosis” and “genetic imperialism”?

The case also throws up new questions about reproductive autonomy in an era where lovemaking can be separated from babymaking. Until now, the fear has been that pre-natal selection would be used to try to create high-achieving, near-perfect children. Now we must ask, does the right to choose include the right to choose disability/difference? Do parents have a responsibility to maximise their child’s potential?
Duchesneau had a 25 per cent chance of bearing a deaf child if she conceived with a hearing donor but a 50 per cent chance if she used a deaf donor. When American sperm banks refused her request, she turned to a deaf friend who had several generations of deafness in his family. Five years ago she gave birth to a deaf daughter, Jehanne, and last November she had a son, Gauvin, who is profoundly deaf in one ear but has some hearing in the other. The two women have decided he will not be fitted with a hearing aid unless he wants it himself when he is older. Their story caused an uproar when published in an American newspaper last week.

Andersson’s wife, Karli, who is also deaf, trained as a counsellor with McCullough at an American university for the deaf. Karli says Duchesneau “seemed a very warm, responsible and caring mother”.

Karli is surprised by the media response. Like Andersson, she believes the problem for deaf people is not lack of hearing but the way it is treated by the mainstream community. “I understand (Duchesneau and McCullough’s) decision, and I think they were discriminated against when they went to sperm banks to ask for a deaf donor,” she says. “What’s the difference between that and a black person asking for a sperm donor that was also black?”

Andersson uses a similar analogy when asked about deafness as disability. He returns to his insistence that deafness is not an innate problem and only becomes difficult because of discrimination, just as “women are discriminated against, but being a woman is fine”.

Tonti-Filippini says Duchesneau’s choice is a logical consequence of allowing prenatal selection. “If an IVF team is prepared to do selection in order to eliminate a child who has some kind of difference like dwarfism, on what principled basis could they reject a parent who wanted to use IVF to have a child who was deaf? Either they say they are governed by choice, or they must admit that the only ethical principle should be a eugenic one, to eliminate genetic abnormalities and difference.”

He says he finds Duches-neau’s decision horrific, but not because it was used by deaf people. “I condemn out of hand the fact that selection is allowed for anybody,” he says.

Julian Savulescu, an ethicist with the Murdoch Children’s Research Institute and professor of ethics at Melbourne University, disagrees with the women’s choice to have a deaf child but supports their right to do so.

“There are two principles that you need to apply here,” he says. “Has the child itself been harmed by what they did? No. If they had had a hearing sperm donor, then some other child would have been born. This child can’t complain that he wished they’d used a hearing donor because then he wouldn’t have been born . . .

“The second principle relates to how we should control or regulate reproduction. I personally believe that it’s better to be hearing than deaf . . . so I think what this couple has done is the wrong thing. I personally think you should try to have a child that’s going to have the best opportunities in life. But the fundamental principle that I think should operate here is one of respect for procreative autonomy, respect for people’s own decision about the kind of children they want to have.”

He says he used to believe deaf couples should not use IVF to make a deaf baby but has now changed his mind. He also thinks that, ultimately, parents should be permitted to choose traits such as intelligence or sex, and he agrees with some disability groups that selection only to eliminate abnormality is discriminatory. “You either allow genetic testing for whatever couples think is a relevant characteristic or you don’t allow anything . . . The downside is that sometimes people will choose in ways that you disagree with. That’s the price you have to pay for freedom.”

Savulescu says ethicist Peter Singer, currently in America, disagrees with him. “I asked him about this. He thinks couples should be prevented from using IVF to do this because he thinks it reduces the amount of wellbeing in the world; the world is better off if the child is better off . . . I think that’s based on an arrogance about knowing what’s best for people.”

Rosemary Robins has taken that principle and extended it to a more extreme scenario for her students in history and philosophy of science at Melbourne University. She asks them to debate the question: “Should a deaf couple be permitted to terminate a hearing child?”

“It’s fascinating what the students make of it,” she says. “Mostly they start out saying, ‘Absolutely no way; you shouldn’t terminate the child, there’s nothing wrong with it’. But then they start to think about why we privilege our (hearing) culture over another culture. We allow abortion for social reasons all the time. I can go and have an abortion just because it’s inconvenient for me now because I don’t have a partner; there I am, terminating a healthy foetus. How is it different?”
Since the 1980s, many members of the deaf community in America and Australia have been galvanised by the idea of deafness as a cultural identity involving pride and self-acceptance rather than a medical disability. They call themselves Deaf, with a capital D, and often reject attempts to turn them into “broken hearing people” with the use of hearing aids or cochlear implants.

Lynn Gillam, a lecturer in health ethics at Melbourne University, has been researching the attitudes of deaf people to the termination of deaf foetuses. They do not condemn it, but are puzzled by it because they feel their lives are happy and fulfilled. She says only a minority of deaf people, usually those born deaf, believe deafness is a valuable part of their identity in the capital-D way. Such attitudes are not restricted to deaf people – she knows a wheelchair-bound person and a blind person who both say they would not want to be cured – but she says that deaf people’s separate language has made the phenomenon stronger in their community.

She is not surprised that Duchesneau and McCullough decided against a hearing aid for Gauvin. “If you have chosen to have a deaf child, you are clearly not going to augment what hearing is there because then you are going back on the decision you have made.”
Savulescu says society tends to overestimate how badly disability affects a person’s life, but that some disability groups try to underestimate its impact. He believes Gauvin should get his hearing aid because he should be given every chance to interact with the hearing world. “I don’t accept this view that you’re either in the deaf culture or the hearing culture. I don’t think you have to exclude other cultural influences to maintain your own culture,” he says.

It is something that Karli and Simon Andersson, who grew up as deaf children with several deaf relatives, are starting to come to grips with. Their 10-month-old baby, Bernhard, can hear.

“Having a hearing baby was a little bit of an issue for me, as we have to work hard to ensure that his hearing culture needs are met,” Karli says. “My husband jokes that he is a special-needs child as he requires things that deaf children don’t, like, for example, music; we bought a Mozart CD for him.

“Still, I love him, and I can’t imagine loving him any differently than a deaf baby. Every child is special in their own way.”

First published in The Age.