Any doctor, regardless of her speciality, can expect to have patients with special needs. People with disabilities have all the normal problems that take the rest of us to a doctor. They get sore throats, conjunctivitis, heart attacks and stomach aches just like anyone else. People with handicaps who seek medical advice expect and have a right to receive the same kind of treatment that any other person gets. Having a visual impairment, a hearing loss or a physical disability does not mean they cannot be told the doctor’s diagnosis or that they cannot be trusted to get the right medicines.
Too often, people with disabilities are treated as children when they seek professional help. The doctor tends to talk about them to whoever has come in with them, as if the person himself is incapable of understanding or offering information. The only time this is justified is when the person has a mental handicap. Even then, however, every effort should be made to make the person feel comfortable and included in the discussion. In some situations, it may be preferable to have the entire discussion separate from the mentally handicapped person to allow the parents or caregivers the chance to decide how much should be shared with him. No one should ever assume that a person with a mental handicap cannot understand anything.
While it is true that all doctors will have some patients with special needs, certain specialities will have a greater percentage than others. Obstetricians and pediatricians, as the first professionals a baby is likely to meet, have an extremely important role to play in the diagnosis and rehabilitation of the child with disabilities.
Obstetricians get to know babies even before they are born. Because certain abnormalities are detectable during pregnancy, obstetricians can help the parents prepare for their baby’s problems early on. They are also trained to identify high-risk pregnancies which often result in difficulties for the baby: prematurity, a family history of congenital defects, poor nutrition, alcoholism or drug use in the mother and a host of other problems. At the birth itself, they are the first doctors to actually see the new baby. Although many disabilities are not apparent immediately, many are, and it is the responsibility of the obstetrician to inform the parents and to assist them in their adjustment to the news.
This is, of course, easier said than done. It is extremely difficult to be the person who has to break such painful news to the parents. But it is far worse to leave them in ignorance. The earlier rehabilitation is begun, the better off the baby will be. At the very least, if the obstetrician does not feel capable of telling the parents, she should put them in touch with someone who will.
That someone will, more often than not, be a pediatrician. Most parents, whether or not they suspect that their baby has a problem, will take the child to the pediatrician. Routine check-ups, immunizations and all the normal illnesses of a baby’s first year guarantee numerous opportunities for difficulties to be identified and diagnosed. It is essential that the pediatrician take this responsibility seriously. Early intervention is the single most important factor in how well a child with disabilities will do. The sooner the difficulties are identified, the sooner treatment can begin. Pediatricians can make all the difference in how parents react to the news that their baby has a handicap. If the diagnosis is given with sensitivity and compassion and the hopeful aspects of the child’s future are highlighted, chances are much better that the parents will accept the child as she is.
Here in India, many pediatricians prefer not to tell parents the truth because there is so little that can be done about it. What is the use, they ask, of telling parents their child needs speech therapy and a special school if the nearest speech therapist is a six hour journey by bus and the only special school in town has a two year waiting list? It’s a fair question. But until parents know what their child needs, how will they go about finding it? The world is full of institutions that were created by parents who were determined their child would get the life he or she deserved.
Other pediatric specialities include Neonatology, (doctors who take care of babies in the neonate period: i.e. for the first month after birth) Developmental Pediatrics (doctors who specialise in normal and abnormal development of children) and Pediatric Surgery (surgeons who are specially trained to operate on babies and small children).
Orthopaedicsurgeons deal with limb and joint deformities and can intervene in cases of polio and cerebral palsy.
Plastic surgeons don’t just do nose jobs and breast implants. They frequently reconstruct the hands (by separating fused fingers, for instance) and faces (by repairing cleft lips and palates) of people born with these disabilities.
ENT specialists deal with speech and hearing impairments.
Ophthalmologists deal with eye deformities and injuries, as well as other visual impairments.
Psychiatrists deal with people with emotional and behavioural problems from a medical perspective, by using a combination of medication, counselling and psychotherapy.
Neurologists specialise in neurological disorders responsible for a range of disabilities from paralysis to mental retardation.
To be effective, it is essential that medical professionals work closely with the other rehabilitation professionals involved as a closely coordinated multidisciplinary team.
The point must be made here, however, that we are aware of no medical program in the country which gives a positive disability perspective to its students. While the need of the hour is for a new generation of doctors who truly understand the nature of disability, the importance of early intervention and full integration into the community, the fact remains that conventional medical training does little to prepare doctors to be useful to their patients with disabilities. It is perhaps up to students to demand the expertise they need to serve all of their patients.