In the face of AIDS - this new, unheralded global crisis - should spare thoughts for the healthworkers who

lthworkers who will toil

we should all be humble. But we should be resolute. We courageously over them - often with no drugs, always with
should think of the many who this day will become no cure. Learning from past errors of cruel and inefficient
infected and those who will learn of their infection. We laws we should resolve, this time, to do better. Stigma
should think of their families, parents, lovers, friends. We should have no dominion.

Hysterectomy in the mentally handicapped.

An abridged version of the statement issued by PARYAY.
(?34RYAY is a group fostering hrrmane alternatives to hysterectomy) in the mentally handicapped. Members can be contacted c/o Aalochana,
Cedar ‘, Kanchan Galli, QJTLaw College Road, Pune, 411 004, INDIA.1

We oppose the decision on hysterectomy in severely mentally the ovaries has. little or no long-term health
retarded women in the asylum run by the government. The consequences for the woman. This is not true. ‘Operative
action was unjustified and unethical for the following Gynaecology’ by Telinde and a number of gynaecology
reasons: books, state that 3-5 % of all women undergoing hysterec-
tomy may need a second operation - the removal of their
A. The operation was not medically indicated ovaries. Part of the blood supply to the ovaries is through the
uterine artery. As this supply can be compromised by
1. Menstruation, even in the mentally handicapped, is not a hysterectomy, ovarian function may be impaired. This results
disease to be eliminated. Hysterectomy has been carried out in the Residual Ovary Syndrome - a painful adnexal mass in
for the convenience of the caretaker institutions and not for the pelvis, general pelvic discomfort and pain during sexual
the health of the mentally handicapped women. Would a intercourse. (We must not forget that one of the reasons for
‘normal’ woman undergo this operation just to get rid of the hysterectomy is to prevent pregnancies after forced
‘trouble of menstruation’, even after the completion of intercourse). .
childbearing?
3 Even if the ovaries are left in, their function often recedes
Since excreta from bowel and bladder need attention in the after hysterectomy, lowering the levels of estrogen in the
severely mentally handicapped, similar care can be provided body. This may lead to cardiovascular disease and,
for the outpourings of the uterus. How can hysterectomy be osteoporosis. Subjecting young girls to the operation ,
justified on the argument that it is the removal of a ‘useless therefore has severe and long term consequences. The fact
organ’? The utilitarian principle involved in advocating this that these operations are performed on healthy women
operation has the sinister implication ofjustifjing mercy compounds the risk.
killing of ‘useless’ people.
4 Such hysterectomy is not recommended by any standard
2.Hysterectomy is major surgery with a mortality rate of l-2 textbook of gynaecology or psychiatry. An extensive search
per 1000 operations and an even higher complication rate. through Medline and Popline shows that it is not an accepted
There is a widespread misconception, even among practice in developed countries. Most of the literature
doctors that removal of the uterus, without removal of discusses tubectomy and even this operation is approached

6
cautiously, with paramount stress on the welfare of the complex than that in when she is a ward of the State. There
woman and not the convenience of the caretaker institution. is no State support to parents of the handicapped in India.
The mother of the handicapped child firnctions under severe
5 No academic body in India has discussed the ethical physical and emotional stress as even routine housework is
aspects of such hysterectomy or recommended it. Some not shared between men and women. The mother performs
experts (such as Dr. S.D.Sha’rma, Director of the Institute for numerous tasks and looks after the mentally handicapped
Human Behaviour and Allied Sciences in Delhi) have child. She faces the double stigma of not only having
opposed the practice. Many Indian institutions for the produced a daughter but one that is retarded. The general
mentally handicapped (Sadhana School and Asha Daan in attitudes towards girls, menstruation, non-marital pregnancy
Bombay, and the low-budget rural school Jeeyan Vardheeni and the mentally handicapped aggravate the dilemma of the
in Saswad) do not favour it. If adequate care and training are parents. The decision to permit hysterectomy in their
provided to the mentally handicapped, hysterectomy is daughter is made to provide a partial solution to the parents’
unnecessary. seemingly endless problems.

B. The State haifuiled in it’s duty D. 'Paryay ’ suggests the following alternatives

1. India can afford minimum facilities for the care of its 1. Increasing personnel, financial and infrastructural support
handicapped people. This is ‘not possible’ todav. because the to the State-run institutions for the mentally handicapped.
government spends too little on health and social welfare. In
the ‘Health For All’ Declaration of Alma Ata (1978), India 2. Qualitatively and quantitatively improving the number of
agreed that 5 % of the Gross National Product be spent by homes for the mentally handicapped.
the State on health care. The Indian government spends
1.17 o/o of it’s GNP on health! India’s health budget has 3. Provision of physical, intellectual and psychological
decreased over the years. To conduct hysterectomy on the stimulation to mentally handicapped children without
mentally handicap&d on the escuse that there are no fimds preconceived biases.
,
is adding insult to injury.
4. Training mentally handicapped children in personal
2. The human rights of persons in State custody need to be hygiene (including menstrual care) through repeated and
strengthened, not weakened. Removal of an healthy organ innovative inputs. Providing adequate undergarments and
without even providing basic care and fadilities erodes their menstrual padding to all girls in State homes.
human rights.
6. Changing the form and content of training for teachers and
3. Women in some State-run institutions for the mentally caretakers so that biases against women’s bodies and
handicapped are not given underclothing as ‘they may menstruation are countered.
strangle themselves with the garments’. Whilst men are
provided shorts, the only clothing that women wear at all 7. Providing security to children from sexual and physical
times (even when menstruating) is a smock that goes abuse in all the homes for the mentally handicapped.
over their heads. The other reason stated was that rural
women are not used to undergarments. Is it surprising that 8. Increasing the health care budget for the handicapped in
women handle their menst rxal flow? absolute terms and as percentage of the Gross National
Product.
c‘. Purents’ diIemma
9. Providing financial support, creches, day care centres,
We are aware that the issue of hysterectomy for the family counseling services, rest and recreational support to parents
looking after a mentally handicapped daughter is more of the mentally handicapped.