Tomato Lichy and his partner, Paula Garfield, are deaf and have a 3-year-old deaf daughter. Now they want to have another child using in vitro fertilization, hoping the newborn will be deaf, too.
But fertility legislation under debate in the U.K. Parliament could make it illegal for such couples to use embryos that have a known genetic flaw when healthy embryos are available.
The human embryology and fertilization bill would allow parents to decide whether to have their embryos screened before implantation into the womb.
If they don't, Lichy and Garfield could take their chances in the hopes that a deaf one is chosen. If they do, they will have to opt for the "normal" embryos over the others.
In response to what they believe is a discriminatory bill, Lichy and Garfield are determined to challenge the traditional concept of disability. Rather than seeing deafness as an impairment, they perceive it as the key to a different world with its own language, its own culture and its own history.
They consider themselves part of a minority group, like any other that might have perceived flaws or disabilities. Yet, as Lichy puts it in an interview with ABC News, "that doesn't mean we must kill off anyone who is not a straight white male Christian."
Lichy and Garfield, Londoners who communicated with ABC News via e-mail and text messaging, said they lead a perfectly normal life.
She runs a theater company that regularly produces plays in sign language, and he is a governor at their daughter's school, as well as a lecturer at the Tate Modern museum. They go to see Shakespeare and Pixar films at the local cinema, with subtitles. They pick up their daughter at school and get stuck in traffic jams, just like everyone else. "I can't see where our life is stunted," Lichy said.
They claim that the bill doesn't acknowledge their normality, believing it implicitly states that deaf people are not equal to people who hear.
This is a concept they also refuse to accept for the sake of their daughter, Molly.
She is a child growing up in the belief that deaf is good and normal, Lichy and Garfield said. She is perfectly at ease with sign language and is learning how to speak. Her parents say it would be hard to explain to her that she can't have a deaf sister or a brother because the law says that deaf embryos shouldn't be knowingly accepted.
Lichy and Garfield accuse the state of deliberately shaping the biological quality of its citizens and of treating deaf people as second-class citizens.
"We've always said the point is that the government wants to impose state-enforced eugenics upon us," Lichy told ABC News. "For us, personally, we would love a deaf baby, but fundamentally, what we want is the same rights as hearing people."
They are not the only ones making such claims. In an open letter about the bill, Francis Murphy, chairman of the British Deaf Association, said that "motivations for prohibiting genetic selection should be carefully evaluated for eugenic bias preferring certain physical characteristics." On the other hand, though, the concept of deliberately picking a deaf embryo looks like eugenics to many hearing people.
Luca Mazzarella, a biology researcher at the Imperial College in London, told ABC News that once the embryos are screened and checked, a eugenics process is already taking place, regardless of the parents and their preferences.
Giving up the screening and the testing is an option that Lichy and Garfield are not happy to consider. They said it sounds more like a punishment, as it might cause problems for the child later on.
The debate over the deaf embryos is raising controversial questions, and many don't agree with the couple's stance. Some say a child shouldn't have to bear the consequences of a serious disability, such as deafness.
Sophie Scott, a professor at the Institute of Cognitive Neuroscience of the University College London argued in an interview with ABC News that deaf people do less well than hearing people. "For example, because of deafness, it will take them more time to get to read, in a mainly hearing society that is not tolerant at all. Deaf people have been forced in history to stop learning the sign language as a way to integrate."
Others stress that there is a social cost in raising a deaf child.
"In a free-for-all national heath system, a deaf person might represent a higher cost than a hearing one," Mazzarella said. "More so if it is a congenital deaf [person] who is usually mute and might have even more serious problems during... physical development. Of course, considering only the economic and scientific side of the issue would be absolutely reductive. Whether society wants to bear this cost is not a scientific but a moral issue."
The point that Lichy and Garfield are raising concerns a small minority. According to the BBC, research carried out at Leeds University found that the majority of deaf people would be happy with either a deaf or a hearing child. Considering that in vitro births make up only 1 percent of all deliveries in Great Britain, in vitro fertilization parents who are deaf and desire a deaf child may not even add up to a case a decade, experts said.
But Lichy and Garfield don't seem discouraged. When asked if he would rather be born deaf or sound sensitive, Lichy said, "Would a proud black person, full of black spirit and black history, rather be white? If I was hearing right now, what would I hear? London traffic, airplanes overhead, the dog next door, Britney Spears, people nagging each other? Do I want to be sound-sensitive and never have a moment's peace for the rest of my life? You must be flipping joking!"