What does the term “child abuse” mean to you? Most people would think immediately of emotional or physical abuse. Sexual abuse. Neglect. What else? Well, how about allowing a deaf baby to be born?
This isn’t my question, but one asked aloud in an interview published in Saturday’s Guardian, with scientist Sharon Moalem, who has written a book about the dilemmas posed as it becomes easier for people to find out about their genetic inheritance – the disabilities or illnesses they might pass on to their children.
Moalem said: “Imagine if it turned out [my wife and I] were carriers for deafness and we could have had a child who was born deaf. What would we do? Is it child abuse to bring into the world a child who has that kind of condition?”
Over the weekend, many Deaf people expressed their concern at this statement on Twitter, and since then, Moalem has sought to clarify what he meant in the article, saying that he values human diversity and was expressing concern about the dangers of genetic testing:
@Deaf @guardianfamily we were speaking about the dangers of positive eugenics that can happen with increased genetic testing.
— Sharon Moalem (@sharonmoalem) April 6, 2014
@paula_garfield @Deaf absolutely sorry for any misunderstanding whatsoever. I believe that all human diversity is precious, deaf and all.
— Sharon Moalem (@sharonmoalem) April 6, 2014
However he meant it, what Moaelm expressed in his article was exactly the kind of question that might be asked by parents in the future as genetic testing becomes more commonplace. And the way they might look at the prospect of having a deaf or disabled child really concerns me.
What we’re talking about here is a child is deaf to some degree, which means that means their parents will have to adapt in order to communicate effectively with them.
Surely it’s pretty clear by now that deaf children are able to communicate equally as well as hearing children when their parents give them the opportunity (just take a look at this viral video of a two year old deaf girl, who has signed from birth, communicating with her mother at the dinner table).
So, my question to people who might consider the idea of bringing a deaf child into the world as being somehow cruel is this: what exactly are you saying the problem would be? The fact your child might be deaf? Or that you wouldn’t be able to learn their communication method? That you wouldn’t be able to find them the right school, and support them in their lives? Because, as the parent of a deaf child, you’d have that choice.
From my experience, with the right support, deaf people can become almost anything they want (even though we have to work harder to achieve it). My wife is deaf and she’s a teacher. My friend is deaf and he produces TV programmes. I know deaf people who lead charities and businesses. I know deaf actors and stand-up comedians.
I’ll go further than that. The most interesting, warm and communicative people I know are deaf. Yes, life isn’t always easy but in many cases, it’s actually that struggle, the journey they’ve been on, that adds to who they are, the story they have to tell, and their outlook on the world.
Whether you think something is ‘wrong’ with being deaf or not depends on how you look at it. Helpfully, in the deaf world we have these models. They’re ways of seeing deafness. The ‘medical model’ basically sees deafness as a negative, something that’s undesirable.Then we have the ‘social model’, which says that it’s the wider world and the way it presents barriers that’s disabling. And then there’s the ‘cultural model,’ which looks at Deaf lives and culture in a positive way.
To put this into practice, what do you think the problem is in this scenario: a deaf person who uses sign language goes to the doctor’s surgery. But they struggle to communicate with their doctor and leave with the wrong diagnosis. Is the problem that the person was deaf, or is it that the surgery didn’t book a sign language interpreter for the appointment (whether in person or online)?
Like I said, it’s all about the angle you approach the problem from. The social model would say it’s the approach of the doctor’s surgery that is ‘disabling.’
While we’re here, let’s also look at what might constitute some form of cruelty to a deaf child.
I know some profoundly deaf people who spent much of their education being forced to try and hear, and to learn to speak, and were not allowed to sign in the classroom. They now feel that they missed out on an actual education, on learning about things – rather than trying to do something they found impossible.
This might sound unbelievable, but I know people who had parents who didn’t know how to fully communicate with them. I mean communicate properly, through an in-depth conversation, not just “do you want a cup of tea?” The parents didn’t learn to sign, or acquire deaf awareness skills like speaking clearly and facing their child while speaking (so they could lipread them). This is why Nina Raine’s play Tribes (which I wrote about here), which dramatises a deaf boy being left out at home, made such an impact.
You could also look at the way that right now, decisions are being made in government and local authorities that are making deaf children’s lives much harder in areas like education, audiology, transport, social care, benefits and equipment (see the National Deaf Children’s Society’s cuts map here).
These are just some of the barriers deaf children can face. But crucially, they’re barriers in the hands of the rest of society – parents, educationalists, and politicians. They’re things that are in society’s power to change. And they’re not reason enough – anywhere near reason enough – to suggest that a deaf life might not be worth living.
Because deaf people, despite those barriers, keep achieving. In education, at work, on a social level, as parents, as friends, as a community. Just think what more we could achieve as more of those barriers – that many are currently campaigning against – come down.
The prospect that in the future, as genetic testing comes in, an unborn deaf baby could be terminated because of deafness – that a parent would throw away a chance to bring that child up and learn to adapt fully to them and in doing so, experience every ounce of joy they could with a non-deaf child – to me, that’d be a long long way from common sense.
It’d be truly wrong.
Charlie Swinbourne is the editor of Limping Chicken, as well as being a journalist and award-winning scriptwriter. He writes for the Guardian and BBC Online, and as a scriptwriter, penned the films My Song, Coming Out and Four Deaf Yorkshiremen.
The Limping Chicken is the UK’s independent deaf news and deaf blogs website, posting the very latest in deaf opinion, commentary and news, every weekday! Don’t forget to follow the site on Twitter and Facebook, and check out our supporters on the right-hand side of this site or click here.
Arista Haas
April 8, 2014
Agreed with the article… this has made me think… The idea of genetic testing to eradicate the deafness does upset me in some ways. Maybe because I am disgusted that people are looking to improve life by eradicating deafness and disabilities after they have proved to be viable citizens of the society or their nations? Being a sports fan and an administrator in the Deaf Sports, I have witnessed many triumphs and challenges in different sports on all levels. As a citizen of Canada, I live among the people of all races, cultures, disabilities, and so on. I do have a good job within the government that allowed me an opportunity to supervise. I also witnessed many of my deaf colleagues achieve greater than I have (Masters, PhDs, medical doctors, etc).
I am approaching this issue with a double edged sword… On one hand, I am looking at the use of science to live longer and better; and on the other hand, I am wary of how the use of the science control the outcome. Several government, religious, societal, and cultural issues come into the play.
Look at China and India for example, genetic testing is helping them identify the sex of fetus. Having sons is a must in their society… (due to governmental influence in policies e.g. one child policy in China, dowry laws in India). It is like “having hearing children is a must” in our society. I am now wondering what the government’s role is now that the genetic testing is becoming more prevalent in the world. That is what bothers me… There has to be a line to be drawn somewhere on how we live on earth… the government’s influence, the societal influence, religious influence, cultural impact…
Andy. Not him, me.
April 8, 2014
It’s overthinking again, in my view. We probably know as much about genetics as the doctor knows about deafness. Scientists are notorious for taking an objective rather than a humanitarian view, but then scientists are paid for doing that. So it’s hardly a surprise when a scientist makes a factual statement that is lacking in humanity.
According to Dr Ladd’s research about 10% of Deaf people are born deaf and the rest acquire it in some way afterwards. So we are talking about a tiny minority of deaf people who will probably have deaf children. Well there is no harm in that because they will be brought up in a community of other people just like them. No problem.
But what about the 90%? Well in the eyes of the world being deaf is right up there with being badly disabled or having a syndrome that needs endless care. But the reality isn’t like that. It is perfectly possible to live your life as a deaf person and be a rounded and fulfilled individual. But the hearing world don’t believe that.
Imagine however if we were talking about Downes syndrome or severe autism?
These are genetic and there can be no doubt that people who are severely affected need lifelong care. I believe there are instances of such babies being terminated already. This is a matter for the parents alone, only they can know if they are capable of bringing the baby up.
John David Walker
April 8, 2014
Just correcting an untruth: actually 65% of deafness is hereditary. Even the later onset of deafness can be caused by a gene. What can not be genetic is deafness caused by illness, such as measles.
Andy. Not him, me.
April 8, 2014
This is my information source. What is yours?
Only 10% of Deaf people are born to Deaf parents. Those 10% grow up with BSL as their first language rather than having to wait until they have contact with other Deaf children, which is the experience of the other 90%. Consequently, they have access to Deaf culture from their parents and from the other Deaf adults they are exposed to from an early age at the Deaf clubs. There are also multigenerational Deaf families-some living today are of the eighth generation-that is, they can trace their Deaf inheritance back to at least the 1820s.
Ladd.P “In Search Of Deafhood”.
Please don’t accuse people of falsehoods unless you have proof of this.
John David Walker
April 8, 2014
There is the other question about what we would lose if we didn’t have deaf children. The fact that we have sign languages has helped us to understand how the brain works and how languages develop. Technology such as vibrating alerts, video conferencing and instant messenger would not have existed without deaf people pushing for them.
Just yesterday, I saw a piece of software that allows people to search video archives through their subtitles. If it wasn’t for the subtitles, it would be very difficult to search videos for a specific phrase or name. The very same subtitles that were originally created for deaf people.
Society, technological innovation and science would do far worst if deaf people did not exist. So why discard the deaf foetus.
But still, why would a foetus have to have ‘value’ in order to be born? That value is entirely subjective and dependent on the cultures people come from. I feel this era of medical science dictating the value of disabilities is outright dangerous because it boils down to whether the foetus has the correct set of functions, without any understanding of the wider social impact.
Helen Grote
April 8, 2014
Thanks for this interesting link. I’m a deaf doctor, and previously worked as a specialist in clinical genetics before re-training in mu current speciality of neurology. As someone has been deaf since birth (albeit not from genetic causes), I’ve always felt uncomfortable with the idea that anyone would wish to terminate an otherwise healthy baby simply for having terrible hearing. We now a live in an age where early diagnosis is possible, and cochlear implants can be fitted into babies as young as six months, thereby mitigating some of the impact that a later diagnosis and access to amplification has on child development and speech.
The reality however, is that the liberal abortion laws in this country mean that women have the right to choose to terminate a pregnancy before 12 weeks because their baby will be deaf, or indeed, simply because they’ve decided that they don’t want a baby, whether deaf or hearing.
Furthermore, for a lot of hearing families who have never encountered a deaf child, the prospect of negotiating the minefield of cochlear implants, speech therapy (or BSL), schooling, plus in some cases, additional problems (e.g. blindness in Ushers syndrome) can be very frightening indeed. Some prospective parents genuinely feel that ending a pregnancy where the baby will be deaf is the kindest thing to do.
As deaf people who have somehow survived – and in some cases- thrived- the challenge is how best to support parents faced with the difficult decision about whether to continue a pregnancy for a deaf baby. Certainly, there’s a role for education from deaf children and adults about what can be achieved with the right support.
A group of children and adults with Down syndrome recently gave a touching message of hope to a future Mum.
http://m.youtube.com/watch?v=Ju-q4OnBtNU
Perhaps it’s time for us and the NDCS to do the same?
Helen Grote
Helen Grote
April 8, 2014
And to show that these decisions work both ways… 2% of deaf people surveyed in this study from the Journal of Medical Genetics would choose to to have prenatal diagnosis in order to terminate a hearing baby in preference to a deaf one…
http://jmg.bmj.com/content/39/6/449.full.pdf
Tim
April 8, 2014
Good article and good timing too Charlie, as we have been bombarded with medical model language and attitudes – it’s oppressive. Great to see a bit of balance.
Caden
April 8, 2014
Why dont people focus on curing cancer, cystic fibrosis, parkinsons disease, etc and leave us deaf people alone?