“PGD is a godsend for parents who desperately want children but know they risk of passing on a defective gene.”
In 2002, Sharon Duchesneau and Candy McCullough, a deaf lesbian couple from America, made headlines when they chose to conceive via a sperm donor. It wasn’t the procedure that drew the attention of the press, but the choice of the donor.
After eight years together, Duchesneau and McCullough approached a friend with five generations of deafness in his family with the explicit goal of having a deaf baby.
“A hearing baby would be a blessing,” Duchesneau told the Washington Post. “A deaf baby would be a special blessing.”
Thirteen years later, parents willing to put in the time and the money can enjoy a more scientific approach to choosing the sort of offspring they want, through a technology called preimplantation genetic diagnosis (PGD). As with in-vitro fertilisation (IVF), eggs and sperm are introduced to each other in a lab to produce embryos. But the goal of PGD isn’t just to try to help a couple conceive. Rather, the usual idea is to create a batch of viable embryos and then decide which to implant after checking for early warning signs of genetic disease.
PGD is a godsend for would-be parents who desperately want children but know they’re at risk of passing on a defective gene that might cause lifelong suffering. When it was first employed in the UK in 1989, the procedure could only be used to select embryos by gender, for the purpose of weeding out hereditary, male-only genetic diseases. Today, PGD is approved by the Human Fertilisation Embryology Authority (HFEA) in the UK to test for more than 250 conditions, including cystic fibrosis, Down’s syndrome, Parkinson’s and Tay-Sachs Disease. In the US, where the technology isn’t centrally regulated, parents can even use PGD to choose their future kids by gender (commonly for so-called “family balancing” – deliberately having a girl after several boys, for example). If an embryo tests positive for a marker of a condition, it can be put aside, and another of the couple’s embryos implanted in its place.
Genetic deafness is also a condition that can be screened for using PGD. But in the US, that’s led to a surprising phenomenon: deaf parents who use PGD not to avoid deafness, but to deliberately select for it. While this use of PGD was banned in the UK under the Human Fertilisation and Embryology Act of 2008, the argument in favour is that, for parents undergoing the lengthy, costly and uncomfortable process of IVF and screening in pursuit of a deaf child, Deafness isn’t a disability–it’s a culture.
Paul Redfern of the British Deaf Association, which celebrates its 125th anniversary this year, says parents going to the extreme of selecting for a deaf child are unusual. But the idea of Deafness (with a capital “D”) as a culture is something that is badly understood by people who aren’t deaf (with a small “d”, to differentiate deafness, the medical condition).
“Most of the policymakers, most of the audiologists, most of the doctors, are on the end of the spectrum [that sees deafness as a disability], because most of them have never met a real deaf person,” he says, through a sign language interpreter. “They’ve got no idea about what’s happening with other deaf people.”
“So, in [the UK] and most of the world, we have what we call the ‘oralist’ lobby, that wants deaf people to become hearing. And Deaf people are like, ‘Why? Why would you want us to be hearing? We’re OK as we are.’”
“So there’s… not a war, but tension between the two.”
While it’s still very rare for deaf parents to go to such extreme lengths as to genetically select for a deaf child (in 2006, a survey of 190 US PGD clinics found that only 3 percent reported intentionally using PGD to select an embryo with a marker for disability), preservation of Deaf culture provides a compelling reason to do so. At least 92 percent of deaf children are born to hearing parents, “And a lot of hearing parents don’t want deaf children,” Redfern says. That, combined with the more conventional use of PGD to avoid conditions like deafness, leaves the associated culture under threat.
As a hearing person, the aversion of hearing parents to having a deaf child fits into an easy narrative. Just think of all the things your child would miss if they were born without the ability to hear: music, theatre, comedy—great swathes of human experience cordoned off to them; a loss so easily avoided through the magic of modern reproductive medicine.
But talking to Redfern and the BDA’s news editor, Anna Tsekouras, about Deaf stand-up, which Redfern describes as more about stories than one-liners; Deaf theatre, supported in the UK by an organisation called Deafinitley Theatre; or Deaf music festivals like Deaf Rave or Sencity, which play music with heavy bass that’s felt as vibrations, upsets that sense of cultural privilege. It’s so easy to assume, in a society geared towards a hearing majority, where subtitled film screenings and induction loops are the exception rather than the rule, that Deaf people are just making do. Until you’re presented with, for instance, a stand-up set performed entirely in British Sign Language, and suddenly—even with subtitles—you’re literally not in on the joke.
At a Deaf stand-up night as a hearing person, you’re a tourist—with all the dangers a tourist faces in a UK comedy club. “They take the piss out of hearing people,” Redfern continues. “They take the piss out of their life experiences. I remember a sketch where John Smith, the Deaf comedian, invites people out from the [Deaf] audience to come up. [The people he invites up] are all bald. He would say to them, ‘Why are you bald?’ And they’d reply, ‘Well, I’ve got older and my hair’s fallen out.’ And he’d say, ‘No, it’s because when you were at school, every time you tried to speak the teacher would come up to you and give you a pat on the head.’”
What does the culture argument do for a prospective parent seeking a deaf child through PGD? In the UK at least, not a whole lot. The Human Fertilisation and Embryology Act states that any embryo with an “abnormality” that could cause “serious physical or mental disability” must not be chosen over an embryo without one. As far as the legislature is concerned, genetic deafness is an “abnormality” first and a culture second—deafness with a small “d,” not a capital one. The subtext is that it’s better to be born hearing than deaf, and that Deaf culture is making the best of a situation.
“If there were some [free, 100 percent effective] treatment for deafness discovered tomorrow, what would be the response from people in the Deaf community, for themselves and their children?” I finally ask Redfern.
There’s a pause.
“I think there’d be a mix,” he says. “Some people would welcome it, because life is hard sometimes. Trying to get access to healthcare, to assistance… There’s so many barriers.
“But then other people would say, ‘Well, this is destroying our culture. This is destroying the community. Where’s your commitment to diversity? What’s wrong with being deaf, anyway? I’m happy to be who I am.’”