The right to be deaf

12:30pm Friday 4th April 2008

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Should we selectively breed humans to get rid of all disabilities? Health Editor Barry Nelson meets a deaf North-East academic who has her doubts

YOU could say that for Jackie Leach Scully, music is one of the pleasures of life. As well as enjoying classical concerts at The Sage in Gateshead she is an enthusiastic amateur saxophone player.

On the face of it, it seems hardly surprising that Jackie is so keen on music.

After all, her partner for many years conducts orchestras for a living.

But anyone meeting Jackie might struggle to understand how she can get such a kick out of music when she is completely deaf in one ear and about 95 per cent deaf in the other.

This lack of understanding and empathy about a deaf person's experience of life is something that Dr Scully - a lecturer in bioethics at Newcastle University - would like to do something about.

She also has misgivings about advances in science which could mean that parents-to-be who have assisted conception treatment would be legally obliged to discard embryos carrying genes which would make them deaf - in effect breeding out' traits for deafness.

It's not even as if Dr Scully inherited her deafness. She lost most of her hearing when she contracted meningitis at the age of eight.

This means that her speaking voice sounds pretty normal and - combined with what seems to be faultless lip-reading - Dr Scully would pass for a hearing person in casual conversation.

But she still feels very uneasy that society might be moving towards a situation where e m b r y o s which carry genes which cause deafness will simply not be allowed to live.

R e c e n t l y she was moved to write a letter to a national newspaper by the extraordinary tale of deaf couple Paula Garfield, a theatre director, and her partner, artist Tomato Lichy.

The couple's first child, Molly, now three, is deaf like her parents but far from being concerned about this situation, Paula and Tomato are very happy.

In fact, so keen are the couple to have another deaf child that they have strongly criticised aspects of the Government's Human Fertilisation and Embryology bill, which is due to go through the House of Commons this spring.

The couple are outraged that the legislation will prevent them positively discriminating in favour of a deaf embryo if they have in vitro fertilisation treatment.

They are hoping that a second child will be born naturally, but because Paula is now in her early 40s, the couple might need help to conceive.

If clause 14/4/9 of the bill becomes law, embryos found to have genes which cause deafness will not be selected and it is the ruthless finality of that clause which concerns people like Dr Scully.

"It is a cornerstone of modern society and law that deaf and hearing people have equal rights," Tomato Lichy told The Observer newspaper. "If hearing people were to have the right to throw away a deaf embryo, then we as deaf people should also have the right to throw away a hearing embryo."

The idea that they could not use IVF positively to select a deaf child makes him pretty angry.

"I find this shocking, detestable and utterly inhuman. I'm a governor at a school for deaf children some will be artists, some will be accountants, some may go to Oxbridge if they had been conceived via IVF and detected as deaf at that stage then all would have been aborted before birth."

It was after hearing Tomato Lichy being interviewed by John Humphrys on the BBC Radio Four Today programme that Dr Scully felt moved to write to The Guardian. She was angered that John Humphrys seemed to think that but you can't hear Beethoven' was the last word on the issue In her letter she wrote: "It's true I can't hear Beethoven like you do', but then you can't experience music like I can either - and what I do hear is arguably closer to what Beethoven heard. What infuriates many deaf people more than anything is the absolute refusal by hearing people to imagine that our experience may be not just a depleted version of theirs, but worth something in its own right."

Back in her office, overlooking the university campus, Dr Scully explains her strong feelings.

"I don't think, when the big discussion about prenatal selection comes up, that many people predicted that somebody would want to choose in favour of impairment,"

she says.

Dr Scully argues that some deaf people would argue that it is not a disability at all. "It is actually such a minor disability and deaf people have the potential to have experiences that hearing people can't have," she says. "Some of it is visual. Sign language can be incredibly expressive and powerful. Some deaf people also have a highly developed tactile awareness.

"Of course, there are certain advantages in not being able to hear in certain circumstances. I can't imagine not being able to turn the volume down, sometimes.

"If I was on a long flight surrounded by five noisy kids I reckon I would be the only one getting a good night's sleep," she laughs.

The academic just wishes hearing people would try to be more imaginative.

"Ask deaf people what it is like to be them. Try to get some idea of what it is like to live as a deaf person," says Dr Scully, who worked as a microbiologist before moving into the world of bioethics. "Individuals need to know what it is like to live as different people before making sweeping generalisations."

The lecturer explains that she can appreciate music because she can pick up the vibrations produced by many instruments, including the cello, the double bass and the bassoon, not to mention percussion. "In my spare time I play an alto sax at home. The sax sits on my hip and when I am playing I can feel the vibrations made by the different notes through my body," says Dr Scully.

Her partner will usually tell her if she is sharp or flat, but Dr Scully thinks she is no worse than any other beginner who took up the sax at 40.

When she is not playing, she teaches and lectures in the university's sociology department. Later this year she is planning to bring out a book, Disability Bioethics, which will tackle some of the issues raised by the embryology debate.

"My research is about the need for everyone to understand the experience of disabled people. People need to understand that there are degrees of impairment.

Some impairments are irredeemably bad, others can be lived with."

We need to have these debates if we are talking about breeding certain traits out of existence, she adds.

Meanwhile, she will continue to defy convention and enjoy being a deaf saxophonist.

"So far I have never had any complaints from the neighbours."