Volume 187 - Issue 11
The deaf and doctors: a shepherd’s two flocks
Author: Bruce D Shepherd
Med J Aust 2007; 187 (11): 678-680. || doi: 10.5694/j.1326-5377.2007.tb01473.x
Published online: 3 December 2007
Published online: 3 December 2007
Working on behalf of deaf children and for the independence of the medical profession
As I rose to speak at a seminar of two or three hundred people in 1967, I could feel my heart thumping and a throbbing pain in my lumbosacral region. They had assembled to discuss ways of enabling deaf children to become integrated into the hearing world. I felt my Batson plexus was about to explode.
My late wife Annette and I were the parents of two profoundly deaf infants, very new to the game, and on a steep learning curve. We had visited a number of schools for the deaf in the United Kingdom, the United States and Australia. In those days, deafness in a child was seldom recognised before the age of 2 years, frequently later. The usual advice given to grieving parents was to send the child to a dedicated school for the deaf, most often as a boarder.
The seminar was attended by educators, bureaucrats, and parents and relatives of deaf children, many of them with years of experience in education. How was I, as a relative newcomer, going to convince them that my belief was correct, that the main obstruction to integration of deaf children and adults into the hearing world was the fact that their education was segregated?
In those days, a profoundly deaf child might be sent to a boarding school in a capital city and taught to sign and finger spell, thus becoming a relative stranger, not only to the hearing world, but even to his or her own family.
Being a far from gifted speaker, I doubt that I convinced many people on that day. It is hard to change the status quo, especially so in this case, in which many years of planning, building and educating had been directed towards segregated teaching. Fortunately, after establishing a number of centres for the education of preschool deaf children, incorporating the principle of teaching these children in the company of hearing children, we managed to establish the principles of early intervention and integration. These principles seem so obvious today, yet they were extraordinarily difficult to institute, even by example.
At that time, hearing aids were relatively rudimentary. Graeme Clark’s miraculous invention — the cochlear implant — was not yet available, so teaching a profoundly deaf child to communicate orally was sheer hard work. My research indicated that deaf adults in that era, no matter how intelligent they were, seldom, if ever, broke out of the mould of being an employee at the level of a printer or a panel beater. This certainly motivated us. With the help of many wonderful people, we managed to achieve our aim of giving the gift of speech, together with the ability to move comfortably with their hearing peers, to our own children. A multitude of cousins of similar ages helped tremendously in the integration process.
With our children fully integrated into hearing schools, Annette and I felt that the only way to convince the educators of the deaf was to set up our own education program. That was in the late 1960s. We formed our first centre, at the University of Sydney, which opened in 1970.
On 14 February 1972, Annette, my wife, had her first stroke. (This was at a meeting where we were planning to find a candidate to stand for the Australian Senate, with the objective of improving the lot of people with disabilities.) How the Shepherd Centre survived in those years I don’t know. Annette recovered sufficiently to continue her work with the Centre. This was done with great difficulty for her and those around her. In 1981, she suffered a cerebral haemorrhage and suffered the locked-in syndrome until she died in 1986. During her illness, my respect for my colleagues rose to even greater heights and reinforced my conviction that medicine must be for patients and independent of commerce and governments.
In the late 1990s, we funded a pilot study and then managed to persuade the New South Wales Government to bring in an early-diagnosis program for congenital deafness: in August 2000 we handed over screening equipment during Hearing Awareness Week. Now, every child born in NSW is tested at birth for deafness (we have achieved a 97% testing rate), and over 93% of our children, no matter how deaf they are, go on to normal-stream education, many to university. It could reasonably be said that NSW is the best place in the world to be born deaf. Other programs have taken up our methods, and recently I received a promise from the Prime Minister that he would make it part of the next Medicare agreement that all children throughout Australia would be tested at birth for deafness. Our cochlear implant program, in association with Sydney Children’s Hospital, is titled “First Sounds”.
At our Shepherd centres, we have at any one time 180 deaf children (about a third of whom have cochlear implants) in our care. We regard parents as the main educators, so they are all very involved in our work. Our head centre is at the University of Sydney, with centres in Canberra, Liverpool, Wollongong, Roseville and Bathurst. Children attend from the time of diagnosis, which may be when the infant is just a few weeks old, to the age of 5.