Not a disability

Gilles was born on Feb 15, 1998, and before he was 1 month old we were told that he was profoundly deaf. At that time, we didn’t know anything about deafness, its consequences, or how to deal with them, and as such we thought that our son was abnormal and handicapped. Gilles is now 3 years old and attends school (figure). We no longer think of him as having a disability, though this change of opinion was not brought about by talking to anyone in the medical profession; doctors maintain that deaf children need to be “repaired”. This reconstructive approach refuses to acknowledge the deficiencies that a deaf child has, and it perpetuates parents’ illusions that deafness is temporary. Furthermore, proponents of this approach fail to recognise the importance of teaching children with hearing difficulties, and those around them, how to live with their deafness, though they too must understand that despite the treatment advances and the benefits of prostheses, including cochlear implants, a deaf child remains deaf. Refusal to acknowledge deafness for what it is serves only to accentuate the handicap and to increase the helplessness of the parents. Reparative treatment can also damage a child’s balance. People seem to find addressing ideas from outside the reconstructive paradigm difficult; however there are a couple of issues that deserve our attention. First, we should consider the existence of a deaf culture. People who are deaf belong to their own community with its own sensitivities, roots in society, and consequently, its own culture. Second, if deafness is properly managed, that is to say that if the deaf have the means to access knowledge and are given opportunities to use their intelligence, a person’s life need not be hampered by their inability to hear. People in the deaf community are legitimately happy and even proud of their identity; deafness is an essential characteristic of this identity. Most, therefore, believe that the efforts made by the medical world to fight what is thought of as a disorder are pointless. We have learnt to appreciate a deaf person’s milieu. Our son is deaf, and, whatever progress is made in science, he will always be physically deaf. We believe that energy spent by specialists servicing the illusion that deafness can be cured, would be better spent in helping people with hearing difficulties to experience the pleasures of learning and knowledge, despite their condition. A deaf person’s natural language is sign language. Sign language is recognised by modern linguists as a language in its own right, and it is the only language that allows a deaf child to understand ideas and to enjoy structured communication without conscious effort. Despite this fact, most professionals are reluctant to grant sign language a full role in the education of the deaf child, since they belief, mistakenly, that the use of sign language dissuades the use of oral and written communication. A deaf child is, therefore, forced from a young age to stare at the lips of the person they are talking to. Reparative treatment requires many visits to specialists, often to the detriment of school work and always at the expense of leisure time and family harmony. Although speech therapy sessions are useful, all the necessary check-ups and assessments render a deaf child a file full of numbers and audiometric curves; he or she becomes a constantly observed sick person rather than a healthy child who needs trust and a normal life to thrive. We recall some good advice from a faith healer, who we visited during the first helpless weeks after Gilles’ diagnosis. Although he couldn’t make the news any easier to bear, he counselled us to always think of Gilles as a normal child. He assured us that if we did this, Gilles would develop well. We have never forgotten this advice, not because it helps us to deny our son’s deafness, but because, apart from making some environmental adaptations, treating Gilles as a normal child gives him the best chance to realise the same goals as a child with good hearing. We believe that there is an urgent need to reconcile the medical and paramedical professions with deafness, and we have the conviction that this goal is possible. Prostheses improve a deaf or hearing-impaired person’s access to the world of sound, and, consequently, improve their abilty to reproduce and express orally what they hear. As such, prostheses, including cochlear implants, are part of the treatment of choice. However, such reparative treatment, presented as a scientific gold standard, jeopardises the normal development and education of the deaf child and is, objectively and subjectively, a cause of pain in the heart of the deaf community Above all, deaf children are normal children