SEMINARS I N NEUROLOGY-VOLUME
12, NO. 2 JUNE 1992
Sexuality and Mental Retardation
INCIDENCE Among the various disability groups, mental retardation is regarded as being the largest. Although the definition of mental retardation is still open to debate, and is to a certain extent dependent on psychosocial and cultural factors, a common estimate, at school age, is of 3%, with 1% being those with more serious retardation. Statistics after school age are more difficult to obtain, but the incidence among adults is considered to be less than among school children, to the extent that some observers speak of a "schoologenic factor" that plays a part in the incidence of mental retardation. It is still customary to define mental retardation by level of intelligence quotient (IQ) and divide persons with mental retardation into four categories-mild, moderate, severe, profound-the last referring to those who require nursing care. One functional division has been into educable and trainable, but the success of rehabilitation programs in recent years has blurred this distinction. The use of the term "subnormality" in England is deplored by many professional workers as having a stigmatizing quality. Some advocacy groups are in favor of changing the designation of mentally retarded persons to persons who are slow learners, so as to emphasize function and indicate potential. Although there are over 25 causes of organic mental retardation, with Down's syndrome being the largest and most prominent, the large majority of cases of mental retardation do not have a clearcut etiology. Because of better care of premature babies with very low birthweight, survival of infants and children with life-threatening conditions, and successful medical treatment of infants with severe mental retardation who have congenital anomalies
or are prone to severe infections, the incidence of mental retardation is probably on the increase. This may be offset by greater use of amniocentesis and other tests in pregnancy to identify cases of Down's syndrome in the fetus with subsequent interruption of pregnancy. There is an increasing incidence of persons with multiple handicaps, that is, retardation combined with cerebral palsy, blindness, or other congenital conditions.
REHABILITATION In the past 25 years, there has been an impressive breakthrough with regard to the successful rehabilitation (or "habilitation") of retarded persons, although not to the same extent in various countries of the world. As a result of the energetic efforts of groups made up primarily of parents, such as National Association of Retarded Citizens (NARC) in the United States and the International League of Societies for Persons with Mental Handicap, combined with the activities of primarily professional groups such as T h e Association for Persons With Severe Handicaps (TASH). In the United States and other countries and various advocacy groups including the "People First" movement, persons with mental retardation are benefiting from more integration and less segregation. The institutionalization of retarded persons in "hospitals" in the United Kingdom is considered to be an inappropriate type of care by many professionals and advocacy groups. The principle of "normalization" as advocated by Nirje' in Sweden, Bank-Mikkelsen2 in Denmark, and Wolfenberger3 in the United States has been adopted in many countries of the world. Huge, segregated institutions that inevitably lead to dehumanization are being reduced in size or
National Secretary, Israel Rehabilitation Society, Tel Aviv, Israel Reprint requests: Dr. Chigier, National Secretary, Israel Rehabilitation Society, 18 David Elazar Street, Tel Aviv 61909, Israel Copyright O 1992 by Thieme Medical Publishers, Inc., 381 Park Avenue South, New York, NY 10016. All rights reserved.
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E. Chiper, M.B. B.Ch., M.R.C.P. Ed., D.C.H.
emptied. Retarded children are often in special classes or receive special educational attention in a regular school. As adults, they have better opportunities to benefit from vocational training, work opportunities, living in small group homes, or in private apartments, and from more social clubs, leisure time, and sport activities than ever before. The success of community-oriented rehabilitation has resulted in a change with regard to sexual behavior of retarded persons. For instance, on the one hand it is now recognized that excessive masturbation of retarded persons living in institutions may be related more closely to general lack of opportunities to do anything than to an excessive sexual drive. On the other hand, more humanistic opportunities for living in the community have raised the question of sexual opportunities for retarded persons, as well as increasing the risk of sexual exploitation o r abuse.
SEXUAL RIGHTS
130
In 1972, I had the opportunity to make a plenary presentation on Sexual Rights of Disabled Persons at the 12th World Congress of Rehabilitation, as the basis for the development of a sexual rehabilitation a p p r ~ a c h . ~ The following rights were presented: 1. The right to be informed. All people have the right to receive information about the biologic and sociopsychologic facts of sex behavior. Today, few people believe in withholding information from adolescents and adults in order to maintain the mystery of sex and to avoid "undesirable" sexual arousal. The fact that retarded persons have difficulties in learning and understanding does not justify a policy of not providing information, but calls for careful preparation of appropriate educational programs. 2. The right to be educated. Education of the young in sexual behavior is an objective of society, whether it be done through family o r religious or educational settings. Not providing the guidance that is needed is a negative form of education. Young persons and many of the adults who are responsible for them are often confused as to what is the right way to handle sexual issues. Retarded persons, because of cognitive limitations, especially when living in an open society, are even more confused and are more in need of clear-cut guidelines about sexual behavior. 3. The right to sexual expression. If, in a particular social environment, it is accepted that young persons of both sexes can indulge in
VOLUME 12, NUMBER 2 JUNE 1992
self-pleasure through masturbation, there is no reason that this should not be considered acceptable behavior in retarded persons. Friendship with the opposite sex, dating, and sexual intercourse are too often regarded as being dangerous for retarded persons, and this may be the case when there is no good guidance and counseling. What is called for is not restriction of sexual expression, but provision of good counseling services. 4. The right to marry. This is a controversial issue with regard to retarded persons, especially those with moderate to severe retardation. With greater provision of homelike facilities, better guidance programs, more social adjustment training, better provision of sheltered care, and more adequate use and availability of contraceptive care, it is not too far-fetched to consider the possibility of a retarded man and woman living together as a married couple under sheltered conditions, with extra provision with regard to sexual relationships, including contraceptive use, and thus benefiting from the social companionship and intimacy acquired through living with a partner. Undoubtedly, there are many problems with this kind of setup, but at present the first problem is the emotional feeling about it, which can be present among professionals as much as among the general public. 5. The right to become parents. This is a universal right which, in some societies, has been extended to permit motherhood for single women and parenthood through adoption for homosexual or lesbian persons. The right of a retarded person to become a parent, however, may clash with the right of a newborn child to receive adequate care, maintenance, and guidance from a parent. Not all retarded persons are incapable of providing adequate care to a child, especially when one parent is not retarded. In a society in which abuse and neglect of children by parents who are not retarded is on the increase, automatic exclusion of the right to parenthood for retarded persons is not justified, but should be carefully assessed in each case. Also, the possible lack of capacity to care for children should not be justification for disallowing marriage. 6. The right to receive services from the community. With the complications of modern society, we have acknowledged the right, in principle, if not always in practice, of people to receive services from the community with regard to sexual behavior, including premarital counseling, genetic counseling, marital guidance, family planning, and help with problems such as
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SEMINARS I N NEUROLOGY
MENTAL RETARDATION AND SEX-CHIGIER
MYTHS CONCERNING SEX AND MENTAL HANDICAP Views about sexuality and mental retardation range from considering retarded persons to be sexually depraved to regarding them as sexual innocents. Craft and Craft5 have listed the following myths, and presented evidence to indicate that they are myths: 1. T h e myth of national degeneracy and propagation of the unfit 2. T h e myth of fertility 3. The myth of degeneracy: handicap among offspring of mentally handicapped parents 4. T h e myth of inability to provide child care 5. T h e myth of sexual irresponsibility 6. T h e myth of sexual offenses Their conclusions are that what mentally handicapped people lack is not self-control but learning experience. "Where conditions preclude socially approved sexual behavior, 'deviant' responses become the norm. "Society has altered considerably since the days of the colonies for the mentally deficient. Myths take longer to ~ h a n g e ! " ~
MAJOR PROBLEM AREAS In 1979, the American Association of Sex Educators, Counsellors and Therapists listed five major areas of special problems, existing to some extent o r another among physically handicapped person^.^ In my opinion, they are even more pertinent and relevant in the case of persons with mental retardation: 1. Impaired body image 2. Low self-esteem 3. Sexual identity and sex role difficulties 4. Difficulties in decision-making and responsibility
5. The extent and nature of sexual experience as a problem area, particularly sexual exploitation
PROVISION OF SEX EDUCATION It is difficult to believe that in the year 1992 sex education for children and adolescents can still be a controversial issue in North America, while at the same time it has long been accepted in principle, and to an increasing extent in practice, in Scandinavia, Holland, and Israel. Winifred Kempton6, a pioneer in sex education for retarded persons, has indicated some characteristics of retarded persons that especially call for educational intervention: 1. They frequently overrespond to attention, and give affection indiscriminately in return 2. Their judgment may be poor, and their reasoning ability limited 3. Retarded persons often d o what is asked of them without question and stand in danger of being used and exploited sexually 4. Most retarded persons d o not have access to accurate information 5. Retarded persons are likely to be confused and frightened by myths and half-truths, because they find it difficult to distinguish between reality and unreality. The challenge to provide sexual education for retarded adolescents has been met, and specific programs, which have proven themselves, have been developed in the United States, Canada, and elsewhere. These usually contain the following components, to some degree o r other: 1. Practical, clear-cut information, in suitable language, advising appropriate educational aids, with regard to the physical and biologic facts about sex. 2. Direct advice, training, and counseling about matters such as menstruation, wet dreams, masturbatory behavior, and appropriate body contacts. 3. Emphasis on understanding differences between behavior in private and public places; for example, masturbation or changing clothing is acceptable in private places, but not in public places. 4. Practical training in ways and means to avoid sexual exploitation, including use of rote-playing games. 5. Teaching appropriate ways and means of communication-visually, verbally, and physically-that enhance emotional relationships. 6. Training in understanding and use of contraceptives.
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abortion, sterility, sexual dysfunction, lack of sexual responsiveness, and deviant behavior. With regard to disabled persons, and especially retarded persons, a "Catch 22" situation often exists. If the general and professional public does not accept the expression of sexuality by disabled persons as it accepts the behavior of those who are not disabled, then the services just mentioned, geared for specific limitations and needs, will not be provided. In the absence of such services, problems of sexual behavior may occur, which are then attributed to the presence of retardation, rather than to the absence of appropriate services.
7. Coping with anger, disappointment, rejection, jealousy, and Essentially, the problem is not absence of educational materials, but rather the absence of a recognized policy of acceptance of sexuality as part of the behavior of retarded persons, training of teachers and counselors, and provision of opportunities for adolescent and young adult retarded persons, including financial allocations for good educational services.
PROVISION OF COUNSELING FOR PARENTS AND PROFESSIONALS "The history of education on sexuality in our country [United States] is that in the end the parents have had to scream for help, all the while the authorities were diffident because they predicted that parents would resist!"1° The training of professionals, including physicians, is vital in order that parents and professionals can talk openly on the suject, avoiding crossed messages. Retarded children, especially if the retardation is severe, are considered, unconsciously, by parents and many professionals as being "sexless, and perpetual children," until they reach adolescence. Then, almost suddenly, parents and caregivers are confronted by the realities of sexual changes in the adolescent, together with the evidence of sexual arousal, and realize that they have to cope with a retarded young man or young woman. Counseling parents on sexuality and retardation therefore is an important part of the rehabilitation program."" A teaching program should include the following points: l 2 1. Normalcy of masturbation. 2. Requirement of privacy for sexual behavior involving genitals 3. Understanding of sexual intercourse and the use of contraceptives 4. Avoidance of sexual exploitation o r abuse 5. Understanding that sexual contacts can contain an element of risk, but that the right to take reasonable risks is part of growth and development in both retarded and nonretarded persons
USE OF CONTRACEPTION Although it may require hard work by caregivers, oral contraception can be used by female retarded persons who are sexually active. After all, neurologists have succeeded in ensuring that re-
VOLUME 12, NUMBER 2 JUNE 1992
tarded persons who have epilepsy will receive or take anticonvulsant medication daily. Good counseling, rapport, good follow-up, and, above all, a clear-cut policy with coordination and mobilization of family and professional resources can result in successful contraception in many cases. For those with difficulties, side effects, or contraindications with regard to oral contraception, long-acting systemic contraceptive medication, such as medroxyprogesterone acetate, can be used. There is a school of thought that considers it advantageous to halt menstruation in severely retarded females through depot injections, so as to avoid the inconvenience, but this is controversial. Many rehabilitation workers consider menstruation as part of the normalcy of a woman, whether she is retarded or not, and view its elimination with disfavor. Intrauterine devices can also be utilized. The higher risk of possible pelvic infection in the adolescent female needs to be weighed against the risk of pregnancy and subsequent abortion in certain retarded women who are unable to manage with an oral contraception regimen. Retarded men can be taught to use condoms, in theory. In practice, this may be difficult, and reports on the use of condoms by retarded men have not appeared in the literature. Sterilization of females with mental retardation continues to be a highly controversial subject, which involves many ethical issues. With more efficient contraception being available and the development of a more humanistic approach to persons with mental retardation, the indications for sterilization have been considerably reduced.13
FERTILITY, MARRIAGE, AND PARENTHOOD Mildly to moderately retarded persons have the same fertility patterns as nonretarded men and women. Fertility in men with Down's syndrome is, however, considered nonexistent. A number of women with Down's syndrome have given birth, although this is not common. A high percentage of children born to mothers with Down's syndrome will also be affected, but a certain percentage will be normal. T h e figures are too small to allow for any definite conclusions. There are reports concerning marriages in which one or both partners have mental retardation to a greater or lesser degree. Craft and Craft5 carried out a survey in Wales of 25 marriages. Despite the assumption that retarded persons with normal partners would do better, it was found that
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SEMINARS IN NEUROLOGY
MENTAL RETARDATION AND SEX-CHIGIER
The issue of parenthood, however, is still controversial. Also controversial is use of sexual surrogates to assist disabled persons, including those with retardation, in obtaining sexual e ~ p e r i e n c e . ' ~ . ' ~
CONCLUSION When considering sexuality and disability, especially mental retardation, we are dealing with a double sensitivity-the sensitivity about sex and the sensitivity about "abn~rmality."'~ Neurologists and development physicians, despite their medical knowledge, are no different from other people with regard to this double sensitivity, which may color the way they treat sexual issues involving retarded persons and their families. Since what physicians, such as neurologists, say to parents and "patients" or clients, carries a special and weighty significance because of the prestige that accompanies their expertise, it is incumbent on them to avoid any prejudgments to consider each situation on an individual basis, and to be fully updated with regard to recent knowledge and experience in the achievement of independence and rehabilitation by retarded persons, including those with severe retardation. For centuries, professionals have grossly underestimated the potential of retarded persons for growth and development in the fields of independence, responsibility, and relationships when they are provided with good services. Sexual education and counseling programs that have proved their worth are available in almost all Western co~ntries,l'-'~ but the training of professionals to provide the education and counseling that is so much needed is still a minimal and sporadic process, which could be significantly accelerated if neurologists would provide the initiative, guidance, and support.
There could be no better way to sum u p than the following excerpt from Michael and Ann Craft: Can those with mental handicap love like other people? Do they experience the depth of feeling we associate with falling in love? No research programs can quantify the amount of love one person feels for another; the mixture of emotion, commitment, self-interest and selfdenial is indeed a tangled web. We know that behavior is conditioned by life experiences, and we know that many mentally-handicapped people lead socially abnormal lives, brought up in large groups, with ever-changing authority figures. Others are over-protected by parents. So what are their chances of loving wisely, or foolishly, of forming strong bonds of attachment? How far does intelligence play a part in this? We would say that it plays very little, for it is a human capacity to give and receive love, and being handicapped with the 47 instead of 46 chromosomes of Down's syndrome, or having an I.Q. well below average, does not seem to alter this need. But it is worth restating the point: the way we love, the way we behave towards the person we love, largely follows from what we have experienced in the past.5
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there was little or no correlation between the degree of handicap and success of partnership in either subjective or objective terms. Support provided varied from total (2) to hostel care (3) to independent with support (14); five couples were independent and without support. Of the 14 children in six families, all were being cared for by their parents, and none showed any evidence of retardation. Most of those interviewed said they were happier and more settled now that they were married. Companionship overcame loneliness and was a source of great comfort. The authors concluded, "In this major respect, marriages between those we call 'mentally handicapped' and those we call 'normal' differ not at
REFERENCES 1. Nirje B. Toward independence. Paper presented at the 1lth World Congress of the International Society for the Rehabilitation of the Disabled, Dublin, Ireland, 1969 2. Bank-Mikkelsen NE. Normalization, social integration and community. In: Flynn RJ, Nitsch KE, eds: Baltimore, University Park Press, 1980 3. Wolfenberger W. T h e principle of normalization in human services. Toronto: National Institute of Mental Retardation, 1972 4. Chigier E. Sexual adjustment of the handicapped. Proceedings of the Twelfth World Congress of Rehabilitation International, Sydney, Australia. 1972;224-7 5. Craft M, Craft A. Sex and the mentally handicapped: a guide for parents and carers. London: Routledge and Kogan Paul, 1985 6. Kempton W. Love, sex and birth control for the mentally retarded: a guide for parents. Philadelphia Planned Parenthood Association of South-Eastern Pennsylvania, 1972 7. Gendel ES. Sex education of the mentally retarded child in the home. Arlington, TX: National Association for Retarded Children, 1968 8. Rolett K. Organizing community resources in sexuality, counseling and family planning for the retarded: a community worker's manual. Chapel Hill, NC: Carolina Population Center, 1976 9. Kempton W. Guidelines for planning a training course on human sexuality and the retarded. Philadelphia Planned Parenthood Association of South-Eastern Pennsylvania, 1973 10. Noley D. A view point from a parent: on sexuality in mental handicap, human relationships, sexuality. International League of Societies for the Mentally Handicapped, 1976:68-70 11. Calais S. Staff attitudes towards sex relations between mentally retarded at institutions. Paper presented at the 3rd International Congress of International Association for Scientific Study of Mental Deficiency (IASSMD). The Hague, Netherlands, September 1973
133
SEMINARS I N NEUROLOGY
16. Chigier E. Sexuality of physically disabled people. Clin Obstet Gynecol 1980;7:325-42 17. Fischer HL, Krajicek MJ, Borthick WA. Sex education for the developmentally disabled: a guide for parents, teachers and professionals. Baltimore: University Park Press, 1973 18. Perske R. Psychosexual development and sex education for the mentally retarded. Chapel Hill, NC: University of North Carolina Press, 1973 19. Monat RK. Sexuality and the mentally retarded. Boston: College Hill Press, 1982
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12. Gordon S. Symposium on sex education. J Spec Educ 1972;14:351-81 13. Gonzales BL. Medico-legal aspects of sterilization for mentally disabled persons. In: Carmi A, Chigier E, Schneider S, eds: "Disability" Medico-Legal Library. Berlin: Springer-Verlag, 1984 14. Greengross W. Entitled to love: the sexual and emotional nee& of the handicapped. London: Malaby Press, 1976 15. Pearlman P. Sexual surrogate therapy for disabled persons. International Seminar on Sexuality and Disability, Tel Aviv. (to be published in "Sexuality and Disability, 1992)
VOLUME 12, NUMBER 2 JUNE 1992
12, NO. 2 JUNE 1992
Sexuality and Mental Retardation
INCIDENCE Among the various disability groups, mental retardation is regarded as being the largest. Although the definition of mental retardation is still open to debate, and is to a certain extent dependent on psychosocial and cultural factors, a common estimate, at school age, is of 3%, with 1% being those with more serious retardation. Statistics after school age are more difficult to obtain, but the incidence among adults is considered to be less than among school children, to the extent that some observers speak of a "schoologenic factor" that plays a part in the incidence of mental retardation. It is still customary to define mental retardation by level of intelligence quotient (IQ) and divide persons with mental retardation into four categories-mild, moderate, severe, profound-the last referring to those who require nursing care. One functional division has been into educable and trainable, but the success of rehabilitation programs in recent years has blurred this distinction. The use of the term "subnormality" in England is deplored by many professional workers as having a stigmatizing quality. Some advocacy groups are in favor of changing the designation of mentally retarded persons to persons who are slow learners, so as to emphasize function and indicate potential. Although there are over 25 causes of organic mental retardation, with Down's syndrome being the largest and most prominent, the large majority of cases of mental retardation do not have a clearcut etiology. Because of better care of premature babies with very low birthweight, survival of infants and children with life-threatening conditions, and successful medical treatment of infants with severe mental retardation who have congenital anomalies
or are prone to severe infections, the incidence of mental retardation is probably on the increase. This may be offset by greater use of amniocentesis and other tests in pregnancy to identify cases of Down's syndrome in the fetus with subsequent interruption of pregnancy. There is an increasing incidence of persons with multiple handicaps, that is, retardation combined with cerebral palsy, blindness, or other congenital conditions.
REHABILITATION In the past 25 years, there has been an impressive breakthrough with regard to the successful rehabilitation (or "habilitation") of retarded persons, although not to the same extent in various countries of the world. As a result of the energetic efforts of groups made up primarily of parents, such as National Association of Retarded Citizens (NARC) in the United States and the International League of Societies for Persons with Mental Handicap, combined with the activities of primarily professional groups such as T h e Association for Persons With Severe Handicaps (TASH). In the United States and other countries and various advocacy groups including the "People First" movement, persons with mental retardation are benefiting from more integration and less segregation. The institutionalization of retarded persons in "hospitals" in the United Kingdom is considered to be an inappropriate type of care by many professionals and advocacy groups. The principle of "normalization" as advocated by Nirje' in Sweden, Bank-Mikkelsen2 in Denmark, and Wolfenberger3 in the United States has been adopted in many countries of the world. Huge, segregated institutions that inevitably lead to dehumanization are being reduced in size or
National Secretary, Israel Rehabilitation Society, Tel Aviv, Israel Reprint requests: Dr. Chigier, National Secretary, Israel Rehabilitation Society, 18 David Elazar Street, Tel Aviv 61909, Israel Copyright O 1992 by Thieme Medical Publishers, Inc., 381 Park Avenue South, New York, NY 10016. All rights reserved.
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E. Chiper, M.B. B.Ch., M.R.C.P. Ed., D.C.H.
emptied. Retarded children are often in special classes or receive special educational attention in a regular school. As adults, they have better opportunities to benefit from vocational training, work opportunities, living in small group homes, or in private apartments, and from more social clubs, leisure time, and sport activities than ever before. The success of community-oriented rehabilitation has resulted in a change with regard to sexual behavior of retarded persons. For instance, on the one hand it is now recognized that excessive masturbation of retarded persons living in institutions may be related more closely to general lack of opportunities to do anything than to an excessive sexual drive. On the other hand, more humanistic opportunities for living in the community have raised the question of sexual opportunities for retarded persons, as well as increasing the risk of sexual exploitation o r abuse.
SEXUAL RIGHTS
130
In 1972, I had the opportunity to make a plenary presentation on Sexual Rights of Disabled Persons at the 12th World Congress of Rehabilitation, as the basis for the development of a sexual rehabilitation a p p r ~ a c h . ~ The following rights were presented: 1. The right to be informed. All people have the right to receive information about the biologic and sociopsychologic facts of sex behavior. Today, few people believe in withholding information from adolescents and adults in order to maintain the mystery of sex and to avoid "undesirable" sexual arousal. The fact that retarded persons have difficulties in learning and understanding does not justify a policy of not providing information, but calls for careful preparation of appropriate educational programs. 2. The right to be educated. Education of the young in sexual behavior is an objective of society, whether it be done through family o r religious or educational settings. Not providing the guidance that is needed is a negative form of education. Young persons and many of the adults who are responsible for them are often confused as to what is the right way to handle sexual issues. Retarded persons, because of cognitive limitations, especially when living in an open society, are even more confused and are more in need of clear-cut guidelines about sexual behavior. 3. The right to sexual expression. If, in a particular social environment, it is accepted that young persons of both sexes can indulge in
VOLUME 12, NUMBER 2 JUNE 1992
self-pleasure through masturbation, there is no reason that this should not be considered acceptable behavior in retarded persons. Friendship with the opposite sex, dating, and sexual intercourse are too often regarded as being dangerous for retarded persons, and this may be the case when there is no good guidance and counseling. What is called for is not restriction of sexual expression, but provision of good counseling services. 4. The right to marry. This is a controversial issue with regard to retarded persons, especially those with moderate to severe retardation. With greater provision of homelike facilities, better guidance programs, more social adjustment training, better provision of sheltered care, and more adequate use and availability of contraceptive care, it is not too far-fetched to consider the possibility of a retarded man and woman living together as a married couple under sheltered conditions, with extra provision with regard to sexual relationships, including contraceptive use, and thus benefiting from the social companionship and intimacy acquired through living with a partner. Undoubtedly, there are many problems with this kind of setup, but at present the first problem is the emotional feeling about it, which can be present among professionals as much as among the general public. 5. The right to become parents. This is a universal right which, in some societies, has been extended to permit motherhood for single women and parenthood through adoption for homosexual or lesbian persons. The right of a retarded person to become a parent, however, may clash with the right of a newborn child to receive adequate care, maintenance, and guidance from a parent. Not all retarded persons are incapable of providing adequate care to a child, especially when one parent is not retarded. In a society in which abuse and neglect of children by parents who are not retarded is on the increase, automatic exclusion of the right to parenthood for retarded persons is not justified, but should be carefully assessed in each case. Also, the possible lack of capacity to care for children should not be justification for disallowing marriage. 6. The right to receive services from the community. With the complications of modern society, we have acknowledged the right, in principle, if not always in practice, of people to receive services from the community with regard to sexual behavior, including premarital counseling, genetic counseling, marital guidance, family planning, and help with problems such as
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SEMINARS I N NEUROLOGY
MENTAL RETARDATION AND SEX-CHIGIER
MYTHS CONCERNING SEX AND MENTAL HANDICAP Views about sexuality and mental retardation range from considering retarded persons to be sexually depraved to regarding them as sexual innocents. Craft and Craft5 have listed the following myths, and presented evidence to indicate that they are myths: 1. T h e myth of national degeneracy and propagation of the unfit 2. T h e myth of fertility 3. The myth of degeneracy: handicap among offspring of mentally handicapped parents 4. T h e myth of inability to provide child care 5. T h e myth of sexual irresponsibility 6. T h e myth of sexual offenses Their conclusions are that what mentally handicapped people lack is not self-control but learning experience. "Where conditions preclude socially approved sexual behavior, 'deviant' responses become the norm. "Society has altered considerably since the days of the colonies for the mentally deficient. Myths take longer to ~ h a n g e ! " ~
MAJOR PROBLEM AREAS In 1979, the American Association of Sex Educators, Counsellors and Therapists listed five major areas of special problems, existing to some extent o r another among physically handicapped person^.^ In my opinion, they are even more pertinent and relevant in the case of persons with mental retardation: 1. Impaired body image 2. Low self-esteem 3. Sexual identity and sex role difficulties 4. Difficulties in decision-making and responsibility
5. The extent and nature of sexual experience as a problem area, particularly sexual exploitation
PROVISION OF SEX EDUCATION It is difficult to believe that in the year 1992 sex education for children and adolescents can still be a controversial issue in North America, while at the same time it has long been accepted in principle, and to an increasing extent in practice, in Scandinavia, Holland, and Israel. Winifred Kempton6, a pioneer in sex education for retarded persons, has indicated some characteristics of retarded persons that especially call for educational intervention: 1. They frequently overrespond to attention, and give affection indiscriminately in return 2. Their judgment may be poor, and their reasoning ability limited 3. Retarded persons often d o what is asked of them without question and stand in danger of being used and exploited sexually 4. Most retarded persons d o not have access to accurate information 5. Retarded persons are likely to be confused and frightened by myths and half-truths, because they find it difficult to distinguish between reality and unreality. The challenge to provide sexual education for retarded adolescents has been met, and specific programs, which have proven themselves, have been developed in the United States, Canada, and elsewhere. These usually contain the following components, to some degree o r other: 1. Practical, clear-cut information, in suitable language, advising appropriate educational aids, with regard to the physical and biologic facts about sex. 2. Direct advice, training, and counseling about matters such as menstruation, wet dreams, masturbatory behavior, and appropriate body contacts. 3. Emphasis on understanding differences between behavior in private and public places; for example, masturbation or changing clothing is acceptable in private places, but not in public places. 4. Practical training in ways and means to avoid sexual exploitation, including use of rote-playing games. 5. Teaching appropriate ways and means of communication-visually, verbally, and physically-that enhance emotional relationships. 6. Training in understanding and use of contraceptives.
Downloaded by: Universite Laval. Copyrighted material.
abortion, sterility, sexual dysfunction, lack of sexual responsiveness, and deviant behavior. With regard to disabled persons, and especially retarded persons, a "Catch 22" situation often exists. If the general and professional public does not accept the expression of sexuality by disabled persons as it accepts the behavior of those who are not disabled, then the services just mentioned, geared for specific limitations and needs, will not be provided. In the absence of such services, problems of sexual behavior may occur, which are then attributed to the presence of retardation, rather than to the absence of appropriate services.
7. Coping with anger, disappointment, rejection, jealousy, and Essentially, the problem is not absence of educational materials, but rather the absence of a recognized policy of acceptance of sexuality as part of the behavior of retarded persons, training of teachers and counselors, and provision of opportunities for adolescent and young adult retarded persons, including financial allocations for good educational services.
PROVISION OF COUNSELING FOR PARENTS AND PROFESSIONALS "The history of education on sexuality in our country [United States] is that in the end the parents have had to scream for help, all the while the authorities were diffident because they predicted that parents would resist!"1° The training of professionals, including physicians, is vital in order that parents and professionals can talk openly on the suject, avoiding crossed messages. Retarded children, especially if the retardation is severe, are considered, unconsciously, by parents and many professionals as being "sexless, and perpetual children," until they reach adolescence. Then, almost suddenly, parents and caregivers are confronted by the realities of sexual changes in the adolescent, together with the evidence of sexual arousal, and realize that they have to cope with a retarded young man or young woman. Counseling parents on sexuality and retardation therefore is an important part of the rehabilitation program."" A teaching program should include the following points: l 2 1. Normalcy of masturbation. 2. Requirement of privacy for sexual behavior involving genitals 3. Understanding of sexual intercourse and the use of contraceptives 4. Avoidance of sexual exploitation o r abuse 5. Understanding that sexual contacts can contain an element of risk, but that the right to take reasonable risks is part of growth and development in both retarded and nonretarded persons
USE OF CONTRACEPTION Although it may require hard work by caregivers, oral contraception can be used by female retarded persons who are sexually active. After all, neurologists have succeeded in ensuring that re-
VOLUME 12, NUMBER 2 JUNE 1992
tarded persons who have epilepsy will receive or take anticonvulsant medication daily. Good counseling, rapport, good follow-up, and, above all, a clear-cut policy with coordination and mobilization of family and professional resources can result in successful contraception in many cases. For those with difficulties, side effects, or contraindications with regard to oral contraception, long-acting systemic contraceptive medication, such as medroxyprogesterone acetate, can be used. There is a school of thought that considers it advantageous to halt menstruation in severely retarded females through depot injections, so as to avoid the inconvenience, but this is controversial. Many rehabilitation workers consider menstruation as part of the normalcy of a woman, whether she is retarded or not, and view its elimination with disfavor. Intrauterine devices can also be utilized. The higher risk of possible pelvic infection in the adolescent female needs to be weighed against the risk of pregnancy and subsequent abortion in certain retarded women who are unable to manage with an oral contraception regimen. Retarded men can be taught to use condoms, in theory. In practice, this may be difficult, and reports on the use of condoms by retarded men have not appeared in the literature. Sterilization of females with mental retardation continues to be a highly controversial subject, which involves many ethical issues. With more efficient contraception being available and the development of a more humanistic approach to persons with mental retardation, the indications for sterilization have been considerably reduced.13
FERTILITY, MARRIAGE, AND PARENTHOOD Mildly to moderately retarded persons have the same fertility patterns as nonretarded men and women. Fertility in men with Down's syndrome is, however, considered nonexistent. A number of women with Down's syndrome have given birth, although this is not common. A high percentage of children born to mothers with Down's syndrome will also be affected, but a certain percentage will be normal. T h e figures are too small to allow for any definite conclusions. There are reports concerning marriages in which one or both partners have mental retardation to a greater or lesser degree. Craft and Craft5 carried out a survey in Wales of 25 marriages. Despite the assumption that retarded persons with normal partners would do better, it was found that
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MENTAL RETARDATION AND SEX-CHIGIER
The issue of parenthood, however, is still controversial. Also controversial is use of sexual surrogates to assist disabled persons, including those with retardation, in obtaining sexual e ~ p e r i e n c e . ' ~ . ' ~
CONCLUSION When considering sexuality and disability, especially mental retardation, we are dealing with a double sensitivity-the sensitivity about sex and the sensitivity about "abn~rmality."'~ Neurologists and development physicians, despite their medical knowledge, are no different from other people with regard to this double sensitivity, which may color the way they treat sexual issues involving retarded persons and their families. Since what physicians, such as neurologists, say to parents and "patients" or clients, carries a special and weighty significance because of the prestige that accompanies their expertise, it is incumbent on them to avoid any prejudgments to consider each situation on an individual basis, and to be fully updated with regard to recent knowledge and experience in the achievement of independence and rehabilitation by retarded persons, including those with severe retardation. For centuries, professionals have grossly underestimated the potential of retarded persons for growth and development in the fields of independence, responsibility, and relationships when they are provided with good services. Sexual education and counseling programs that have proved their worth are available in almost all Western co~ntries,l'-'~ but the training of professionals to provide the education and counseling that is so much needed is still a minimal and sporadic process, which could be significantly accelerated if neurologists would provide the initiative, guidance, and support.
There could be no better way to sum u p than the following excerpt from Michael and Ann Craft: Can those with mental handicap love like other people? Do they experience the depth of feeling we associate with falling in love? No research programs can quantify the amount of love one person feels for another; the mixture of emotion, commitment, self-interest and selfdenial is indeed a tangled web. We know that behavior is conditioned by life experiences, and we know that many mentally-handicapped people lead socially abnormal lives, brought up in large groups, with ever-changing authority figures. Others are over-protected by parents. So what are their chances of loving wisely, or foolishly, of forming strong bonds of attachment? How far does intelligence play a part in this? We would say that it plays very little, for it is a human capacity to give and receive love, and being handicapped with the 47 instead of 46 chromosomes of Down's syndrome, or having an I.Q. well below average, does not seem to alter this need. But it is worth restating the point: the way we love, the way we behave towards the person we love, largely follows from what we have experienced in the past.5
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there was little or no correlation between the degree of handicap and success of partnership in either subjective or objective terms. Support provided varied from total (2) to hostel care (3) to independent with support (14); five couples were independent and without support. Of the 14 children in six families, all were being cared for by their parents, and none showed any evidence of retardation. Most of those interviewed said they were happier and more settled now that they were married. Companionship overcame loneliness and was a source of great comfort. The authors concluded, "In this major respect, marriages between those we call 'mentally handicapped' and those we call 'normal' differ not at
REFERENCES 1. Nirje B. Toward independence. Paper presented at the 1lth World Congress of the International Society for the Rehabilitation of the Disabled, Dublin, Ireland, 1969 2. Bank-Mikkelsen NE. Normalization, social integration and community. In: Flynn RJ, Nitsch KE, eds: Baltimore, University Park Press, 1980 3. Wolfenberger W. T h e principle of normalization in human services. Toronto: National Institute of Mental Retardation, 1972 4. Chigier E. Sexual adjustment of the handicapped. Proceedings of the Twelfth World Congress of Rehabilitation International, Sydney, Australia. 1972;224-7 5. Craft M, Craft A. Sex and the mentally handicapped: a guide for parents and carers. London: Routledge and Kogan Paul, 1985 6. Kempton W. Love, sex and birth control for the mentally retarded: a guide for parents. Philadelphia Planned Parenthood Association of South-Eastern Pennsylvania, 1972 7. Gendel ES. Sex education of the mentally retarded child in the home. Arlington, TX: National Association for Retarded Children, 1968 8. Rolett K. Organizing community resources in sexuality, counseling and family planning for the retarded: a community worker's manual. Chapel Hill, NC: Carolina Population Center, 1976 9. Kempton W. Guidelines for planning a training course on human sexuality and the retarded. Philadelphia Planned Parenthood Association of South-Eastern Pennsylvania, 1973 10. Noley D. A view point from a parent: on sexuality in mental handicap, human relationships, sexuality. International League of Societies for the Mentally Handicapped, 1976:68-70 11. Calais S. Staff attitudes towards sex relations between mentally retarded at institutions. Paper presented at the 3rd International Congress of International Association for Scientific Study of Mental Deficiency (IASSMD). The Hague, Netherlands, September 1973
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16. Chigier E. Sexuality of physically disabled people. Clin Obstet Gynecol 1980;7:325-42 17. Fischer HL, Krajicek MJ, Borthick WA. Sex education for the developmentally disabled: a guide for parents, teachers and professionals. Baltimore: University Park Press, 1973 18. Perske R. Psychosexual development and sex education for the mentally retarded. Chapel Hill, NC: University of North Carolina Press, 1973 19. Monat RK. Sexuality and the mentally retarded. Boston: College Hill Press, 1982
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12. Gordon S. Symposium on sex education. J Spec Educ 1972;14:351-81 13. Gonzales BL. Medico-legal aspects of sterilization for mentally disabled persons. In: Carmi A, Chigier E, Schneider S, eds: "Disability" Medico-Legal Library. Berlin: Springer-Verlag, 1984 14. Greengross W. Entitled to love: the sexual and emotional nee& of the handicapped. London: Malaby Press, 1976 15. Pearlman P. Sexual surrogate therapy for disabled persons. International Seminar on Sexuality and Disability, Tel Aviv. (to be published in "Sexuality and Disability, 1992)
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