When a child is diagnosed as deaf (generally by their GP or health visitor), parents often feel shocked, upset, confused and fearful for their child. Very often they have never met a deaf person and do not know what to expect of their deaf child. If parents are familiar with deaf people, these feelings are lessened because they feel more positive about their deaf child's future.
Health professionals will do their best to reassure parents that, with the appropriate treatment (e.g. hearing aids, speech therapy), their child will be able to hear or will be able to function in the hearing world. Depending on the area in which the family live, they will be given a variety of options. Some areas provide better information than others.
Sometimes professionals only encourage families to go down the oral/aural route of hearing aids, cochlear implants, speech therapy, etc. Children are labelled as 'hearing impaired' and in need of support, which gives false hope to parents that their children will be 'normalised'.
Many families do not get the opportunity to meet deaf adults and mix within the deaf community. Hearing parents of deaf children will find invaluable help, support and advice if they make contact with organisations supporting deaf children. They have deaf staff and promote all available options – including oral/aural options – but they also provide information about sign language.
Education and support
There are two prevailing models surrounding the education and support of deaf children.
- Medical Model: Deafness is a disability which needs treatment with hearing aids, speech therapy, cochlear implants, special education, etc. It focuses on what the child lacks or is deficient in and seeks to correct the situation through treatment and 'normalisation'.
- Social Model: Deaf people belong to a separate linguistic minority group, which has its own culture, community and language. Equal access and participation should be the responsibility of the wider community through the provision of interpreters, equal opportunities, etc.
The medical model has dominated the health and education provision for the last century and marginalised many deaf people. However, things are starting to change with provision for deaf children developing in some areas of the country.
A number of different areas have now accepted that sign language and deaf adult role-models have a place in the support and development of deaf children. It is hoped that this attitude will become more common throughout the UK. Providing children and parents with all available information is the best way to secure a child's future.
Sometimes parents think the support they have already received is sufficient for their needs. However, it can soon become apparent that they have not been given full information on the positive and negative aspects of all the options open to deaf children and their families.
Very often they have not been given information about deaf culture, deaf identity and most importantly the deaf community. Some parents are aware of sign language and would like their child to learn it. They should be given the opportunity to do so as it would benefit both themselves and the child.
Oral/Aural or British Sign Language?
The biggest issue parents will have to face is that of the communication option they want to adopt. The option preferred by health and education professionals tends to be oral/aural. However, the best approach is the child-centred one which acknowledges any option that meets the needs of the individual child.
The option which should be encouraged is the one which makes it easier for the child to communicate and relate to the world and people around them – this could be just sign language, just speech and lip-reading, or a combination of the two through Signed Supported English, bilingualism, etc.
It may be that deaf children use a variety of communication modes and this is fine as long as children can function successfully through them, sharing as well as receiving information.
Whatever the choice made on behalf of the deaf child, children will make their own decisions once they leave school and start mixing in both the deaf and hearing worlds. Some who have had a purely oral/aural education and communication system get involved in the deaf community in adulthood and soon adopt a signing communication/language option.
Another sensitive issue is that of cochlear implants. The deaf community are opposed to cochlear implants because it is seen as another way of denying a child's deafness and therefore their cultural identity. It has been promoted by the media as a 'miracle cure', but there is no real evidence for this yet.
The hearing achieved by the cochlear implant, although significantly better than a hearing aid, is not of the same quality as that experienced by 'normal hearing'. Therefore it is not the 'miracle cure' it is sometimes proclaimed to be.
A cochlear implant has to be surgically implanted in the skull, under the skin, and for deaf people this makes it a very invasive operation. Should the implant not work, or the child choose not to use it, it cannot be easily undone without another operation to remove the internal device.
Deaf people are also opposed to the fact that children are not really involved in the decision-making process, which denies the right of the deaf child to choose for themselves. A common question that parents ask is ‘Will a cochlear implant make my child hear?’ My response is to clarify just what parents know about cochlear implants and whether they are aware of both the positive and negative aspects of their child having one.
There are a number of families who have considered giving their children a cochlear implant. Some have chosen to proceed with the implant and adopt a purely oral communication method. Others have had the implant but carried on using sign language. Others have decided against the cochlear implant.
Families still going through this decision making process are put in touch with families from all these groups so they can share their experiences, concerns, reasons why they did what they did. Then parents are able to make the decision themselves.