We were told our son was deaf when he was 22 months old. Immediately after diagnosis we were propelled into the audiology, medical and sensory support systems. Confusing, scary places for parents of a young child, desperate to do the right thing for him and not knowing what that right thing is. We were given hearing aids but our son still couldn’t access all of the sounds needed for speech. Eventually we decided to go down the cochlear implant route. Cochlear implants were introduced as an option for profoundly deaf children in the UK in 1989 amidst much controversy, viewed initially either as a ‘cure’ for deafness or a eugenic tool for the eradication of the Deaf community. Whilst increasing numbers of deaf people are choosing cochlear implants and the Deaf community is increasingly open to the use of this technology, there is still significant opposition to parents choosing cochlear implants for young children rather than waiting for them to reach the age where they can make their own decision.
Messages from academic writers in Deaf Studies and Disability Studies are still almost wholly negative. There are two main streams to the arguments against the cochlear implantation of deaf children. Arguments about cultural assimilation hinge on the parallel drawn between the Deaf community and other minority linguistic communities and view cochlear implants and oralism more widely as a form of ‘ethnocide’. In Contours of Ableism, for example, Campbell (2009) describes cochlear implants as a way for the hearing world to oppress the minority Deaf community, creating hybrid children who are neither deaf nor hearing and exist in a ‘twilight zone’ and destroying the Deaf community. Normalisation arguments, similarly, focus on the attempt to make abnormal, imperfect, or tragic deaf children and adults normal through surgery, thus allowing them to become productive members of the majority hearing world. Proponents suggest that deafness is not a disability or abnormality but simply a different way of being. It is not difficult, when viewing the cochlear implant debate from this standpoint to see why some members of the Deaf community are so against cochlear implantation. If deafness is an integral part of Deafness and Deafness is a positive state, then cochlear implants are simply unnecessary and risk making it more difficult for deaf children to become Deaf.
So where does that leave us as the hearing parents of a deaf child? Have we created a hybrid child destined to live in the twilight zone out of an unconscious desire to destroy the Deaf community? Unsurprisingly, this is not my take on the argument. Most deaf children (90%) are born to hearing parents. They are not born into, brought up in, or surrounded by, the Deaf community or native speakers of British Sign Language. Deaf children of hearing parents may join the Deaf community if they attend deaf schools or youth clubs but there is no automatic right of passage for these children. Joining the Deaf community may actually be quite difficult as parents need to actively seek out the Deaf community, which can present practical and emotional challenges. As a hearing parent you are asked to seek out a community for your child that separates them from the one in which you live and into which they were born, and is a community into which you, as a non-d/Deaf parent, cannot easily fit.
If we had been given more information about the Deaf community and opportunities to learn British Sign Language, would it have altered the choices we made? Our son is profoundly deaf. He has two cochlear implants, age appropriate oral/aural language skills and attends a mainstream primary school with a statement of special educational needs. Despite his cochlear implants and spoken language he remains deaf and always will be. We, as a family, are in the process of learning British Sign Language to use alongside spoken English both for when he is not wearing his implants or is unable to hear sufficiently (in background noise) and because we believe it is important that he has access to British Sign Language as a deaf person. We have adopted the approach that he should be given access to both oral/aural and signed language to enable him to make his own choice when old enough to do so. This seems an entirely reasonable stance maximising the opportunities available. To suggest, however, that we are depriving the Deaf community of a future member by giving our son the chance to develop oral/aural language and that we should put the need to secure the future of the Deaf community before the need to maximise the opportunities available to our son seems less reasonable. Our position is not one held in ignorance. We are well aware that cochlear implants do not give our son normal hearing. We are also aware that he works considerably harder than his hearing peers to access sound and communicate using oral/aural language (for a brilliant overview of what it is like to live with a cochlear implant see Helen Willis’s film ‘Hearing…but not as you know it’). Whether he chooses to continue with oral/aural language, to use BSL and or to use a combination of the two, we have tried to give him the best foundations from which to make that decision.
About the Author: Sasha Scambler is a medical sociologist based at King’s College London. Her main research interests are disability and long term conditions, inequality, social theory and old age.