Dr. S. Aksoy
It is hard to distinguish, from their use in writings on medicine or medical ethics, the terms handicap and disability. There are also other related words which are used widely and often interchangeably: abnormality, malformation, anomaly, defect. All of them are related in some way to a concept of normality. The word 'normal' is used in many different fields. In medicine, it is hard to give an absolute definition of being 'normal'. Although there may be some shared or general norms, every individual also has his or her own concept of 'normal'.
What is malformation? If a little girl, with six fingers on one hand, says she loves her sixth finger very much, how do we tell her she is malformed?
Blepharoptosis is a condition in which the upper eyelid droops in consequence of paralysis of muscles or nerves. But would we say that having drooping eyelids, eyes with short palpebral fissures, is a malformation? Would we not then have to say that most Chinese and Japanese have somewhat 'malformed' eyes?.
If the little girl's sixth finger causes her no impediment, except for its appearance, would it be right to think of it as a 'disability' or a 'problem'? On that criterion, obesity or anorexia nervosa could also be considered as disability. They are not only disagreeable in appearance but also impair physical and social function. Such impairment must surely be part of any definition of disability.
But this too raises a question. If an abnormality does not cause impairment of function, but only makes a person ugly, do we consider it a disability? Who will judge the level of ugliness, the individual or society? A schoolgirl with polydactylism - more than five fingers or five toes; a young man with alopecia universalis - absence at all hair, on the head and body; a teenage girl with ichthyosis vulgaris (xeroderma) - a severe skin disorder which causes an ugly appearance - if such conditions do not cause any impairment, if people have got used to seeing them, the individuals may not perceive themselves as ugly and therefore not feel distress. But if their appearance does disturb others and they feel distressed as a result, should we describe them as normal or disabled'? A little girl in a nursery school may be afraid of holding up a polydactyl hand; his co-workers may be upset by sharing a workplace with a man suffering from alopecia universalis; a hair dresser may not want to cut the hair or manicure the nails of a girl who suffers from ichthyosis vulgaris.
Plainly, clinical definitions do not define or cover disability. Sociological reflections are also important. Sometimes it is more important to ask how people around a particular individual perceive that individual, than to ask how medical science defines his or her condition.
There are situations where individuals do not feel handicapped and find their lives valuable and worth living, but people around them are upset by them and label them as disabled. In contrast to this, there are some cases, in which, the individual is considered medically 'normal', is perceived as 'normal' by society, and his or her condition does not cause any impairment, but that individual thinks that a particular part of his or her body is a problem and tries to find a 'solution' to it. These 'solutions' are an important part of the plastic surgeon's workload. It is not easy to explain the circumstances which disturb people so much that they take the risk of surgery. But we may infer another factor to define disability namely the psychological state of the individual. The individual may not have any physical abnormality but psychologically he or she feels abnormal. Hospital records abound with such cases.
Among the most difficult 'abnormalities' are anomalies affecting the newborn and congenital malformations. There are 200 such 'disabilities' (see Goodman and Gorlin 1983). Among them are Downs Syndrome, Spina Bifida and Fetal Alcohol Syndrome. The distress caused by such illnesses has led to attempts to identify cases as early as possible. In order to do this, scientists have established new prenatal diagnostic methods such as USG (ultrasound), amniocentesis, CSV (cholonic villi sampling) and photocopy. 60-65% of malformations can be diagnosed with these methods (Goodman and Gorlin, 1983, p.83). However, we must define our aims clearly to protect humankind from being victims of these improvements. Goodman (1986, pp2l4-17) suggests that prenatal diagnosis is used for monitoring the pregnancy, to localize the placenta, to detect multiple pregnancies, to know fetal age correctly, to monitor probable congenital malformation and to make studies about the genetic, biochemical and chromosomal structure of the fetus. These are all aims which are innocent and for the benefit of humankind. But, like all other new technologies, they do raise moral questions.
Before 1977, prenatal diagnosis was rare in Sweden. The number of late terminations because of fetal abnormality was 34 in that year. By the end of the 1980s, this number had reached 100 per year. 40% of these terminations were because of Downs Syndrome and 15% because of NTD (Neural Tube Defect) (Reid, 1991, p.77). Introduction of the technologies to Portugal, Greece and Germany led to new legislation on the termination of pregnancies (Reid, 1991, p.9).
Despite all measures and methods of elimination, disabled babies continue to be born. Maybe attention should be turned to treatment and rehabilitation. Although it is not always possible to correct impairment completely, quality of life can be improved through a variety of rehabilitation methods.
Almost half of handicapped newborns die in the first year of life and 80% of the rest need corrective surgery or lifetime therapy. For this reason, treatment and rehabilitation are costly options. But after the improvement of surgical sciences, especially plastic surgery in recent years, the remediability of many conditions has increased.
Remediability or irremediability of disabilities is of crucial importance in determining the treatment offered to handicapped newborns. Decisions about remediability or irremediability are made by doctors. The reasoning and judgments of philosophers, theologians, sociologists, other experts (and, of course, parents) are informed by data supplied by doctors. The objectivity of that data is not unquestionable. Dr John Freeman (quoted in Kuhse and Singer 1985, p.63) observed: 'It concerns me greatly that a given child born in Sheffield has a 75% chance of being dead; that the same child born in Baltimore...has a 95% chance of being alive. And yet this is a decision made by the parents on the advice of either Dr Lorber or myself. That is scary.'
In this discussion of the definition of 'disability', we have tried to show that it and related terms cannot be solely the domain of doctors. It is true that scientists are vital in this area but they need to be aware of societal and religious issues. We cannot leave decisions about 'disability' to scientists who worship only science.