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Disabilities and How to Live with Them
WHEN a boy, I was often to be found where no other boys had been before. It was at the age often that I climbed onto a flat roof to play, and a sudden thunderstorm made me seek cover. I slipped and fell some twenty feet. After a short period of acute pain there seemed little ill effect. It was some months later that I began to experience acute bilateral hip joint pains, especially after exercise. In an Asian country, and in the aftermath of war, there was little that could be seen on X-ray and the pains in my joints persisted. Thus it was that, after a series of medical and surgical misadventures, I found myself at the age of nineteen emerging from hospital with bilateral ankylosis of both hips and knees. The most immediate problem was that of trying to regain mobility and the associated difficulties of reconciling my degree of disability with a determination to continue my disrupted medical training. Some mobility was possible by pelvic swinging, but this slow and ungainly method of locomotion was inadequate to keep up with the normal pace of my contemporaries. It also failed to meet the need to climb steps and stairs. The environment seemed to be full of steps and stairs that I had previously not been conscious of, and I found myself cut off from so many places which it was essential to get to. The lecture theatres and laboratories were at the top of stairs. The roads seemed very wide indeed and every car hurtled by, intent on endangering life and limb. It was by trial and error that I evolved a reasonably effective method of locomotion. By spinal flexion it is possible to lift both feet offthe ground and swing forward on crutches and so achieve a "step" of almost normal length or height. I remember most vividly the first time I was able to climb a step in this way. The world suddenly became a more accessible place. However, climbing stairways without handrails remains
hazardous procedure. Living as I do in outer London, I need to use the Underground. The escalators are both a blessing and a nuisance. It is not always easy for me to swing onto the moving surface and to adjust my feet, so that they are clear of the join in the stairway, before the step is formed. Failure to do this has resulted in my being tipped over backwards when going up. The rush-hours pose a particular challenge, with the pushing and shoving that is a normal part of city life. The London bus has an entry platform at a considerable height, a
3. Slone D, Shapiro S, Miettinen OS. Case-control surveillance of serious illnesses attributable to ambulatory drug use. In. Colombo F, Shapiro S, Slone D, Tognoni G, eds. Epidemiological evaluation of drugs. Amsterdam. Elsevier/North Holland Biomedical Press, 1977: 59-82 4 Miettinen OS. Estimability and estimation in case-referent studies. Am J Epidemiol 1976; 103: 226-35 5 Mantel N, Haenszel W Statistical aspects of the analysis of data from retrospective studies of disease. J Natl Cancer Inst 1959; 22: 719-48. 6. Armitage P. Statistical methods in medical research. New York: John Wiley, 1971. 7. McMichael AJ, Potter JD, Hetzel BS. Time trends in colo-rectal cancer mortality in relation to food and alcohol consumption: United States, United Kingdom, Australia and New Zealand. Int J Epidemiol 1979; 8: 295-303. 8. Elwood J, Cole P, Rothman K, Kaplan S. Epidemiology of endometrial cancer. J Natl Cancer Instit 1977; 59: 1055-60.
9. Joly DJ, Lilienfeld AM, Diamond EL, et al. An epidemiologic study of the relationship of reproductive experience to cancer of the ovary. Am J Epidemiol 1974; 99: 190-209. 10. Schmidt W, de Lint J. 171-85.
Causes of death of alcoholics. Quart J Stud Alcohol 1972; 33:
especially if the driver does not get near the pavement-a fairly common occurrence. Permanently extended lower limbs on public transport act as a most effective obstruction, tripping up fellow passengers who look indignant if they fail to see the crutches lying on the floor. I now tend to stand in the rush-hour as an act of self-protection. It is in situations such as this that one also sees the kindness of human nature. I have been offered a seat by skinheads and little old ladies alike, and I have been helped across roads which I had not really intended to cross. Using crutches to bear total body weight makes me very conscious of the weather and the seasons. Rain, snow and ice, and wet autumn leaves all make rapid movement difficult. Falls do occur, even when I take care, and can only be seen as portents of possible future accidents when bones grow more brittle with age. Mobility over any distance requires motor transport of some description. Most cars are designed, understandably, for the average motorist. Knees and hips that do not bend require a degree of leg room not readily available in many cars, and the installation of special controls adds 5 to 10% to the cost ofacar. The higher insurance premium and the items of cover that are lost are penalties which are part of the price of disability, irrespective ofa motorist’s record of many years of claim-free and accident-free driving. The greatest limitation is in choice of car, which is determined by ability to sit in it rather than by more usual purchase criteria. The ubiquitous disabled person’s parking permit is often abused, but is a very helpful aid, especially in town where double yellow lines, which prohibit parking at all times, abound. I hope very much that abuse of the parking permit, real and imagined, will not devalue it in the eyes of the
.
motoring public. Life insurance cover is also affected, and the "special premium" seems to be added without too much regard to life expectation. Once the premium is paid, every change in policy or the purchase of additional cover is similarly loaded and medical examinations are required to protect the insurance company. I feel sure that my life expectation is related
to
that of my peer group rather than
to
my obvious
disability. The purchase and use of clothing is complicated by disability. Since I use my upper limbs extensively, my coats are subject to very severe wear and tear and show signs of this long before the trousers. Use hypertrophy of the upper limb muscles alters the proportions of the upper body to the lower limbs and makes it impossible to buy suits off-the-peg, although I am of average height and weight.
11. Monson RR, Lyon JL. Proportional mortality among alcoholics. Cancer 1975; 36: 1077-79. 12. Klatsky AJ, Friedman GD, Siegelaub AB. Alcohol and mortality A ten-year Kaiserpermanente experience. Ann Intern Med 1981; 95: 139-45. 13. Nicholls P, Edwards G, Kyle E. Alcoholics admitted to four hospitals in England. II. General and cause-specific mortality. Quart J Stud Alcohol 1974; 35: 841-55. 14. Adelstein A, White G. Alcoholism and mortality. Population Trends London. HM Stationery Office, 1976; 6: 7-13. 15. Lyon JL, Klauber MR, Gardner JW, Smart CR. Cancer incidence in Mormons and non-Mormons in Utah, 1966-70. N Engl J Med 1976; 294: 129-33. 16. Phillips RL. Role of life-style and dietary habits in risk of cancer among Seventh-Day Adventists. Cancer Res 1975; 35: 3513-22. 17. Breslow NE, Enstrom JE. Geographic correlations between mortality rates and alcohol, tobacco consumption in the United States. J Natl Cancer Inst 1974; 53: 631-39. 18. Tuyns AJ. Epidemiology of alcohol and cancer. Cancer Res 1979; 39: 2840-43. 19. Lieber CS, Seitz HK, Garro AS, Worner TM. Alcohol-related diseases and carcinogenesis. Cancer Res 1979; 39: 2863-86. 20. Williams RR. Breast and thyroid cancer and malignant melanoma promoted by alcoholinduced pituitary secretion of prolactin, TSH, and MSH Lancet 1976; i: 996-99.
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Motor disability has other consequences. The search for work was initially the most daunting task. I was fortunate indeed in making my first application for a pre-registration post to quite a small hospital in Yorkshire. I remember with affection and gratitude the two consultants who were willing to give a trial to a strange and untested young colleague with an obvious disability. I can only hope that other young doctors in my circumstances will be equally fortunate in meeting senior members of the profession who are willing to give them a chance to show their capabilities, without, of course, putting patients at risk. With a proven record of experience changing jobs becomes less difficult, although I had to get used to the rather varied expressions of surprise and curiosity that are only too apparent on first contact. Equally amusing, though sometimes trying, is the almost universal experience of at first being greeted in hospital as a patient. Most people are very kind and helpful, although I occasionally get an image of the institution which is not really the one best projected to patient or public alike. While much I have said concerns the personal effects of disability, there are effects on my family too. The care of the garden, the do-it-yourself activities, so necessary around the house, are all too often undertaken by my most supportive and understanding wife. Even going out for a walk tends to be at a pace either too fast for me or too slow for her. Holidays can be rather hit or miss since there is no real way of knowing exactly what to expect at the destination. I have always been interested in working with handicapped
children and their families. Personal experience of disability gives an insight into the problems that face the child and the parents who work so hard to develop the full potential of their handicapped offspring. An obvious disability in the doctor seems to provide a degree of empathy which I hope is of value to them. I have been impressed too by the effect of disability on both professionals and lay people alike. On the whole, a high profile disability (i.e., one that is obvious) brings with it a greater desire to help. This is especially the case if the disability is one that is understandable and there is no gross disturbance in speech and behaviour. On the other hand, low profile disabilities, which are as often associated with considerable loss of function, or disabilities which give rise to communication problems, produce a negative response. It is too much to expect that the International Year of Disabled People will have radically altered public understanding of disability, despite a greater degree of media coverage than at any time I can remember. A public and a profession that have a greater understanding of the true nature of disability and of the value of care, if not of cure, are prerequisites to enable those with disabilities to achieve their full potential and to play their part in the life of the community. Disability may alter lifestyle-it does not make it sterile. In describing the experience of disability it is only too easy to highlight some of the difficulties experienced and so give the impression that life is circumscribed by problems. For me this would be a distortion of reality. RICHARD BEAVER III
Round the World From
our
correspondents
India CHOLERA VACCINE TROUBLES
A 1978 controversy of which many in high places would rather have heard nothing more rumbles on in Calcutta. It stems from complaints by members of the Scientific Workers Association employed at the Cholera Research Centre. (In 1979 the centre changed its name to the National Institute of Cholera and Enteric Diseases.) In 1975 Indian newspapers acclaimed a successful new cholera vaccine developed and investigated by the C.R.C. in cooperation with the Indian Council of Medical Research and the West Bengal Government. N.I.C.E.D. is one of the World Health Organisation’s collaborating centres for diarrhoeal diseases and for a time W.H.O. was also interested in supporting the vaccine project. The scientists claimed that the trial vaccine, with its aluminium phosphate adjuvant, had not been tested properly in the laboratory before it was given to man and that the population studied, who lived in Calcutta’s slums, were not asked to consent to the experiment. 200 000 people were vaccinated, including 60 000 children; the vaccinators are said to have been inexperienced and to have been instructed by the C.R.C. authorities to say, if asked, that they had come to administer the conventional cholera vaccine which, from time to time, the City of Calcutta makes available to the poor of the city. The doubts were not just about the ethics of the study. The follow-up seems not to have been rigorously scientific, to put it mildly, and there were no controls. Despite the claims made, nowhere is this vaccine in use today. The scientists’ complaints led to a commission of inquiry in 1978, but this was rendered impotent when the High Court in Calcutta overruled the commission’s chairman, Mr Justice Sarma Sarkar, who had ordered officers of the C.R.C. to appear before him. Dr A. K. Ghosh, assistant director of the centre and president of the Scientific Workers Association at the C.R.C., claimed harassment, both personal and scientific, and in
he was fired. Among five senior scientists who the affair and the victimisation that ensued was Dr Amit Chauduri. Late last year the headlines returned. In the Bengali weekly Parivartan of July 1, 1981, N.I.C.E.D.’s director, Dr S. C. Pal, reported that a committee of scientists had exonerated the centre from charges of unethical behaviour, and the Minister of State for Health said the same on Sept. 17. The report of this inquiry-like that of the cholera vaccine trial itself-has not been published, and on Oct. 4 Sunday (Calcutta) reported on the membership of this committee. One member was from the N.I.C.E.D.’s scientific advisory committee which had earlier greeted the outcome of the vaccine trial with acclaim. Another was the deputy director-general of the Indian Council of Medical Research, one arm of which is the cholera institute. The Medical Council of India was not represented and there was no lawyer.
January, 1979, resigned
over
United States THE CHEESE MOUNTAIN
There was a big change in the tactics of the Administration just before Christmas when the President signed the new Farm Support Bill, which had just squeaked through the House of Representatives by a narrow margin. No wonder, for it seems unsatisfactory to all parties; it is claimed that it will bankrupt or impoverish many farming families and provide unnecessary surplus funds to others. Peanut and sugar farmers are among the favoured. It will cost more than the President wished, less than many critics asked for, but it may dispose of the cheese mountain. Through loans, direct payments, and purchase commodity price support the security of many farmers has been underpinned. Dairy farmers have been making more money by selling their products to the Governmeht than by selling on the open market. So as a result, we have a cheese mountain, growing rapidly and now large enough to provide every citizen with 2 pounds of cheese, which is not improving in the Government’s warehouses. So our needy citizens will get a slice of cheese free and without loss of benefits under the food stamp programs. Some 30 million pounds of cheese will be released and distribution has begun.