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CHAPTER
13:SEXUALITY AND PEOPLE WITH LEARNING DISABILITIES
MEERA ROY
Sexuality relates to how people express
themselves as men and women. This is culturally defined and influenced by
family, peers, religion, the law, customs , knowledge and economics. Sexual
maturity is a biological process which happens to almost everyone, including
people with a learning disability (the exceptions include people with syndromes
affecting sexual maturation). Heshusius (1987) reviewed literature on
perceptions of sexuality by people with learning disabilities and found that “
at least for most part, sex is desirable ,an essential part of life pleasurable
and adding warmth and excitement to living - not unlike the meaning it
carries for most people”. In this chapter, we will examine how society has
responded to people with learning disabilities expressing their sexuality and
the particular issues which face them in the areas of sex education, abuse,
contraception and in being parents.
HISTORICAL
OVERVIEW
Expression of sexuality by people with a
learning disability has caused unease in the society in general and carers in
particular from very early times. Until recent years, the response has been to
lock them away in institutions where the practices allowed little scope for
appropriate sexual behaviour. Eugenics is the term applied to theories and
practices ostensibly designed to improve human condition from the point of view
of genetics. But identification of desirable human traits is a subjective
matter. References to eugenic ideals appear in the Old Testament and Plato’s
Republic idealises a society in which there is a constant selection for the
improvement of human stock.
In the United Kingdom, the Eugenic Education Society
was set up in the early part of the 20th century, drawing its
membership from the middle classes and it was most concerned by the growing
problem presented by the “feeble minded”. In response to the growing
pressure, a Royal Commission was set up under the Chairmanship of the Earl of
Radnor in 1904, which deliberated
for 4 years. The Commission came to the conclusion that heredity was an
important factor in “mental deficiency”, the “defectives” were often
highly prolific and that other social problems such as delinquency and
alcoholism were aggravated by the fact that so many “defectives” were
allowed complete freedom of action in the community. But they were not willing
to consider sterilisation as an option and insisted that the main criterion for
certification should be the protection and happiness of the “defective” than
the purification of the race. In 1910, the members of the Eugenic Society and
the National Association for the care of the Feeble-Minded lobbied the
candidates for the General Election, asking them to support prevention of
parenthood for the feeble minded. But the Mental Deficiency Act of 1913 did not
deal with the issue of sterilisation.
A joint committee of the Board of Education and the
Board of Control under the chairmanship of A.H. Wood in 1924 was asked to
determine how many “feeble minded” people there were and how to deal with
them. Their conclusion was that the
real criterion of “mental deficiency” was social inefficiency and not
educational subnormality and laid down principles of care. They recommended
segregation and sterilisation for the elimination of those with “primary
amentia”. A Department of Health Committee chaired by L.G. Brock in 1934
recommended sterilisation for the “mentally defectives” with third party
consent, but this was not acted upon.
In the United States, The American Eugenics Society
was founded in 1926 by men who believed that the white race was superior to
other races and that the upper classes had superior hereditary qualities that
justified their being the ruling class. Sterilisation and segregation of
“defective” people was thought to be the best way to improve society. By
1931, sterilisation laws had been enacted by 27 states in the U.S. and by 1935,
similar laws had been passed in Denmark, Switzerland, Germany , Norway and
Sweden. In most cases the purpose was
clearly eugenic, though some laws tacitly permitted sterilisation for social
than genetic reasons.
Following the atrocities in Hitler’s Germany during
the Second World War, the Eugenic movement fell into disgrace. In 1942 in
Skinner v Oklahoma the US Supreme Court ruling was “ the right to procreate is
a basic constitutional one”, demonstrating a diametrically opposite view from
that expressed by Oliver Wendell Holmes 1927 in the same court, in Buck v Bell
which was that “ three generations of imbeciles are enough”.
Sterilisation
and people with learning disabilities
Once the Eugenic argument is put aside, there still
remains family or carer issues which impinge on sexual rights of this group of
people. Adults with learning disability are often looked upon as children and
therefore asexual. Alternatively, they may be regarded as people with an
excessive sexual drive and with poor personal control. Parents give a variety of
reasons for seeking to have their children with learning disabilities sterilised.
Some feel that irresponsible behaviour on the part of their daughters will lead
to their sexual exploitation. Others dread the possible emotional and economic
burden of bringing up a child resulting from such a sexual encounter. There is a
common belief that their daughter’s disability would be transmitted to the
next generation. Some parents favour sterilisation, believing that it would
result in a lowering of sexual drive. Others do so because they fear the social
stigma which would result from their daughter becoming pregnant and the
possibility of this being attributed to
insufficient control and supervision on their part. Most requests for
sterilisation come not from
women with learning disabilities but from their parents, who feel that
they have a right to be free from worry about
their offspring beyond a certain age. Parents sometimes also cite their
grandchildren’s right to be born without disabilities.
In the recent years, such cases have come into public
domain leading to the clarification of the legal situation in England and Wales.
In the case of minors, such an operation should only be carried out with the
leave of the High Court Judge obtained in Ward ship proceedings. In case of
adults over the age of 18 years who cannot consent , the operation should be in
their best interests and should be in accordance with the responsible body of
medical opinion. The doctor performing the operation must consult all the
relevant professionals and family members and should apply to the Court for a
Declaration that under facts of the case, the operation would be lawful
(Whitfield, 1989 ).
In Scotland, the law is different as childhood is
divided into two following the Roman Law classification of persons. There are
pupils protected and controlled by tutors (normally the parents), who have full
control (subject to the Welfare principle), over the pupil’s property and
person and there are minors (between the ages of 12 or 14 and 18), protected by
curators who only have control over the child’s property. A tutor has the
right to decide on medical treatment for the child and a tutor dative can be
appointed by the Sessions Court to consent to medical treatment for an adult as
long as it is in his or her best interests ( McK. Norrie, 1989 ).
Today, in the United States, there appear to be three
different approaches to sterilisation in the different states. In some states,
the operation cannot be performed on a person who cannot consent. In the second
group, the Court can evaluate cases for sterilisation and authorise the
procedure if it is considered to be in their best interests. The third approach
is to leave the decision to members of the family and their physician with out
resort to the courts (Annas, 1981). In Canada, the Supreme Court concluded that
“non-therapeutic” sterilisations cannot be authorised by a Court( McK.
Norrie, 1989). In Australia, in the state of Victoria, all sterilisation
operations have to be referred to the Guardianship tribunal (Carney and Singer,
1986).
SEX EDUCATION
Sterilisation of people with a learning disability
may be seen as an extreme reaction to their sexuality. In the last few years ,
it has been viewed more positively and there has been an increasing public
awareness about the right of people with learning disabilities to be treated
like others with out such disabilities, by the pioneering work by Wolfensberger
in the context of normalisation or social role valorisation. In 1979, the United
Nations adopted a Declaration of the Rights of the Mentally Handicapped, which
states that “the mentally retarded have the same basic rights as other
citizens of the same country and same age”.
Craft (1987) believed that people with learning
disabilities have six main rights with regard to their sexuality:
1. The right to grow up and to be treated with the
respect and dignity accorded to adults. This is often compromised due to their
need for some level of support. All too often the support given has the effect
of encouraging dependence.
2. The right to know. To have access to
as much information about themselves
and their bodies and those of other
people, their emotions, appropriate
social behaviour, etc. as they can assimilate.
3. The right to be sexual and make and break
relationships.
4. The right not to be at the mercy of the individual
sexual attitudes of different care givers.
5. The right not to be sexually abused.
6. The right to a humane and dignified environment.
In the last decade, there have been improvements in
the provision of sex education for
the general population and people with learning disabilities. The attitudes of
staff in residential settings have become more progressive towards an acceptance
of a socio-sexual life for the people in their care ( Heshusius, 1987 ). Those
who receive sex education appear to benefit substantially in terms of knowledge,
growth and self confidence( Robinson, 1987). With out this, they will not be
able to develop meaningful relationships .
As the majority of people with learning disabilities
live with parents or paid carers, such carers have an important role to play in
the development and expression of sexuality. In planning sex education, it is
important that parents and carers are consulted at an early
stage. Training staff to deal appropriately with
sexuality is essential to prevent traditional repressive reactions.
Training has to be at least on two levels. All staff need awareness training -
awareness that individuals with a learning disability have needs and rights in
relation to their sexuality. They also need information on a range of issues
such as local services, availability of educational materials, pregnancy etc. At
a second level, a small number of staff may want to obtain further training to
work as teachers and counsellors themselves. Various organisations e.g. British
Institute of Learning Disabilities , the Association to Aid the Personal and
Sexual Relationships of People with Learning Disabilities and the Education and
Training Department of the Family Planning Association run such courses(Craft
and Brown,1994). There are training packs, e.g. Not a Child Anymore by the Brook
Advisory Service which can be used to give people with learning disabilities,
sex education.
An important prerequisite for effective sex education
is an awareness and understanding of one’s own attitudes, beliefs and
practices regarding sexuality and towards people with learning disabilities.
Those providing the service must be sensitive to the needs of minority groups
such as asians and african carribean people and guard against negative
stereotypes such as black people and those with learning disabilities have
strong sexual desires (Baxter, 1994).
PEOPLE WITH
LEARNING DISABILITIES AS PARENTS
In 1942 the US Supreme Court stated that the right to
procreate was a basic constitutional right. Sterilisation would forever deprive
a person of this right, which is
fundamental to the existence and survival of the human race. The Law Lords in
1987 considered that the presence of physical
and mental disability in a girl rendered her incapable of ever exercising that right or
enjoying that privilege.
Andron and Tymchuk reviewed a large body of
literature on people with learning disabilities functioning as parents. The main
drawbacks of the studies were that (1) they concerned deinstitutionalised people
necessitating caution in generalising the findings to people raised and living
in the community, (2) the parents studied were not representative
of the general population as they had been referred by the courts and (3)
there was a general lack of sophistication with a lack of comparability of
methodology. There appeared to be no clear evidence to suggest that people with
learning disabilities predominantly had children with learning disabilities.
However, as many of these people lived in impoverished environments, it is
difficult to determine the effects of poverty as opposed to being brought up by
parents with disabilities. Gillberg (1983) however found that
women with learning disabilities had more children than the general
population and that they had more children with learning disabilities. Women
with learning disabilities who do well as mothers have the following traits:
Adequate reading and comprehension abilities to use traditional sources
of information such as parenting manuals, IQ above 60, no concomitant emotional
disturbance, no concomitant medical disorders, low stress, adequate self concept
and adequate motivation. Good
outcome is also associated with the following environmental factors:
there being only one child in the house, having a younger child, having a
child without medical or other problems, having a partner without an emotional
disorder, criminal behaviour or behaviour problems including abuse of spouse,
having sufficient supports (social, health, financial, vocational, psychological
and legal) not having been institutionalised, having had own appropriate role
models during own upbringing, having adequately trained professionals,
availability and appropriateness of materials used in training, continuity of
agency involvement and having a single agency providing multiple services and or
co-ordination (Tymchuk 1990).
Normal intelligence does not guarantee good parenting
skills. Conversely, presence of learning disabilities does not preclude the
ability to be a good parent. If a person with learning disabilities is to be a
parent , he or she should be assessed to find out their strengths and areas
where they are likely to need help. Under the current legislation , the
child’s needs have to be paramount. Early assessment and planned intervention
is essential to ensure that there is as little disruption as possible for the
child and the parents with learning disability. Parenting skills can be assessed
in family centres where people with learning disabilities can also receive
training in child care. Psychologists and psychiatrists working in the field of
learning disability may be called upon to give expert opinion on cognitive
abilities and presence of psychiatric disorders which may affect the ability to
parent. There should be close liaison between community learning disability
teams supporting the person with learning disabilities, child care teams, family
centre staff , partners, the person with learning disabilities and any involved
family member. . If the decision is that the individual can cope, the next step
is to put together a comprehensive package to cover the period leading up to
delivery and the post natal period. The parent with learning disabilities may
need help and support over a long period of time, to help them deal with the
child’s developmental stages. However, if it appears that the person is likely
to put the child at risk either during the initial assessment or any time later,
it will be necessary to implement child care proceedings.
In their book, Parenting Under Pressure, Tim Booth
and Wendy Booth (1994)describe
their work with parents with learning disabilities. They suggest that much
remains to be learned in this field , particularly on achieving a balance
between the welfare of the children and the rights of the parents. All too often
the balance is tipped against the parents. While children must be protected, it
is important that the parents with learning disabilities are not abused by the
system. Prosser (1992) defined a number of characteristics of “system abuse”
of parents, based on their perceptions of the treatment that they had received
at the hands of child protection agencies. These include actions that harm the
people that they are supposed to help; snap judgements taken on the basis of
inadequate evidence; failing to involve people in decisions affecting them;
adding to the problems already facing them; seeing people in isolation from
their close relationships; and treating people as ciphers. Booth and Booth
suggest a set of guidelines for practitioners working with parents with learning
disabilities which are useful to adopt to
reduce prejudicial attitudes and misconceptions. It is important that workers in
child protection agencies have a good understanding of people with learning
disabilities if latter are to have a chance of succeeding as parents.
But even practitioners who are sympathetic find themselves trapped by the
system into taking actions or decisions which oppress them. This suggests that
there may be a need to change the service system itself.
CONTRACEPTIVE
OPTIONS
In the main, people with learning disabilities have
the same range of contraceptive options as
the general population and the choice of a contraceptive depends on the
person’s individual circumstances.
Natural family planning methods such having
intercourse only in the safe period require motivation
knowledge and planning on the part of the users. This is not a fool proof
method for most people including those with learning disabilities.
Barrier methods (such as condoms) may be suitable for people with mild
learning disabilities who are motivated to have good contraception with out
having to take tablets. Absence of co-existing personality disorders with poor
impulse control and physical disabilities which compromise manual dexterity
would increase the success rate of these methods.
Intrauterine
devices (IUDs) are highly effective, have no metabolic side effects and only a
single act of motivation is required for long term use. Once in situ, they only
need to be checked annually. They are often used by women who have borne
children, as side effects such as pain during periods and heavy loss occur less
often than in nulliparous women. Devices containing progesterone are said to
cause less loss during periods. Intra uterine devices are suitable for women
with mild learning disabilities who may have problems remembering to take the
pill everyday. This is often the reason why ordinary women chose to use IUDs.
They may also be suitable for women with severe learning disabilities who are
unable to take oral contraceptive pills because of the side effects. However,
heavier menstruation may exacerbate any hygiene-related problems and a general
anaesthetic may be necessary, both for the insertion and annual checks. In view
of the risk of removal by the woman or her partner, shorter threads on the
device and more frequent checks may be advisable. The use of IUDs is generally
inadvisable in nulliparous women due to the increased risk of pelvic infection
and infertility.
Oral contraceptive pill would be the method of choice
for women with mild learning disabilities who are motivated to have a safe
efficient system of contraception. It can also be used by women with more severe
degrees of learning disabilities who are given their medication by their carers.
A higher dose of the combined (oestrogen and progestogen) pill may be necessary
if the woman is concurrently taking an anticonvulsant which induces liver
enzymes. Injectable depot preparations of progesterone may be useful for women
with mild learning disabilities for short periods of time if compliance is poor
and IUD not appropriate. It may also be useful for women with severe learning
disabilities for whom a general anaesthetic may be unsuitable due to other
physical problems. Amenorrhoea, which frequently occurs with long term use, may
be beneficial. Careful counselling is required to ensure that the woman is able
to give informed consent.
Sterilisation (consisting of tubal ligation for women
and vasectomy for men) is a safe and permanent method of contraception.
Voluntary sterilisation of either partner is the most frequently used method of
fertility regulation in the world. Men and women with mild learning disabilities
who have completed their families and are able to give informed consent can make
use of this option. Women with severe learning disabilities who are unable to
consent but are sexually active and unable to use other options such as the pill
or IUD because of side effects can also have sterilisation as long as the doctor
performing the surgery has followed the guidelines outlined earlier in the
chapter. The relatively permanent nature of sterilisation
and the issue of informed consent are the main drawbacks.
Consent
Informed consent is an essential prerequisite for any
treatment. The various components are:
* it must be voluntary and obtained without
misrepresentation or fraud
* the act performed must be consistent with the act
for which consent was obtained
* the act must not in itself be illegal
* the person must be given sufficient information
regarding the purpose, nature and consequences
of the proposed treatment in order to arrive at a reasoned decision
regarding whether to accept or reject the treatment
* the person must have the legal capacity (age and
mental competence) to give consent
Mental competence is defined as the intellect’s
ability to meet a challenge. In people with learning disabilities it can be
difficult to ascertain the degree of competence, to know if a reasoned decision
has been reached and if it is truly voluntary.
When the learning disability is severe there is often a total incapacity to
communicate and give consent. In these circumstances third party consent has
been obtained in the past, from parents or guardians, and from a court in the case of children. This
is acceptable in situations in which the person’s life is at risk, but becomes
untenable when the issue is potentially irreversible control of fertility. The
current legal status is that parents, guardians or the court can consent on
behalf of a person with learning disabilities up to the age of 18 years for
treatments excluding those which would interfere with fertility. Beyond this
age, no one can give consent on behalf of another. The law regarding
sterilisation has been discussed earlier in the chapter.
SEXUAL ABUSE OF
PEOPLE WITH LEARNING DISABILITIES
Like other people with disabilities, those with
learning disabilities also have been shown to experience greater risk for sexual
abuse. Browning and Boatman (1977)
found that fourteen percent of incest victims had intellectual disabilities.
Elvick et al (1990) physically examined 35 girls and women (ages 13-55)
with mental retardation and found thirty seven percent had clear physical
evidence of sexual abuse, an additional six percent had known history of sexual
assaults and another six percent were found to have sexually transmitted
diseases.
People with learning disabilities have an increased
vulnerability to abuse because of the dependence on other people for personal
care; an imbalance of power between the person being cared for and the carer;
difficulties in communication; lack of sexual knowledge and assertiveness; and
guilt and shame at being disabled( Sinason, 1993a,b).Turk and Brown(1993) in
their study found that the victims were usually women and the perpetrators
usually men and that the perpetrator was often known to the victim. Many
perpetrators abuse more than one victim.
The victim of abuse may present with changes in
personality or behaviour, sexually inappropriate behaviour, withdrawal, sleep
disturbance, loss of skills or reduced level of functioning, loss or reduction
in speech, self injurious behaviour or symptoms of post traumatic stress
disorder. To date , there have been very few successful prosecution against
perpetrators. Many cases do not get to Court as the Crown Prosecution Service or
the Police consider a person with learning disabilities to be an unreliable
witness (Cooke& Sinason,1998).
Children and adults with mental and physical
disabilities face particular difficulties when trying to tell of abuse.
They are more likely to be disbelieved or even ignored.
Their communication problems are exploited by their abuser who is subtly
aided by many of the unthinking networks in which they exist.
The therapists are often disadvantaged too as they may not have skills in
the field of learning disabilities. The
communication problem may be further compounded by the emotional trauma of abuse
for the person with learning disabilities.
Body language may be used to communicate sexual abuse e.g. excessive
masturbation or eroticised inappropriate behaviour (Sinason 1994).
Various psychotherapeutic approaches have been
modified to treat the victims of abuse. Psychiatric illness precipitated by
sexual abuse, e.g. depression , should be treated with appropriate medication.
Defects in cognitive functioning may make it difficult to process memories and
emotions induced by the abuse, leading to chronic psychological dysfunctioning
(Cooke & Sinason, 1998). Professionals
working in the field of learning disability should be aware of sexual abuse.
It is recommended that health and social service units should have
procedures to deal with alleged sexual abuse.
People with
learning disabilities as sex offenders
It is commonly agreed that deviant sexual behaviour
is similar for disabled and non-disabled offenders ( Sinason, 1993,b). Such
offenders can be more violent and more likely to find male victims. They are
less likely to reach the courts and therefore less likely to receive treatment.
Re-offending is common in sex offenders with learning disabilities (Day, 1993) .
He found that majority had
committed more than one type of sex offence, 20% had committed both heterosexual
and homosexual offences and 50% had offended against children. The offenders had
suffered adverse psychosocial factors including parental violence, sexual abuse
and multiple family pathology. He differentiated between those who had committed
sex offences only as opposed to those in whom the sexual offence was part of a
larger context of offending behaviour and suggested that the former were more
amenable to treatment.
Various therapeutic interventions such as individual
and group therapy have been used with sex offenders with learning disabilities.
Sometimes it may be necessary to use antilibidinal agents such as Cypropterone
Acetate to reduce the sexual drive.
CONCLUSION
Sexuality of people with a learning disability is
clearly a complex area. Cares, statutory agencies and the legal system impact on
this area of their lives which is a private one for most others. It is important
that any intervention is thought out carefully and implemented sensitively if
these people are to feel valued.
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Sterilisation of the mentally retarded: a decision for the Courts. The
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Baxter, C. Sex education in the multiracial society
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Booth, T. , Booth, W. ( 1994 ) Parenting Under
Pressure: mothers and fathers with learning difficulties. Open University Press,
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and Inkelis, S.H. (1990) "Sexual abuse in the developmentally disabled:
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McK. Norrie, K. (1989) Sterilisation of the Mentally
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Robinson, S.M. Experiences of Sex Education
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Mental Handicap and Sexuality: Issues and Perspectives, Tunbridge Wells,
Costello. 1987.
Sinason, V. Working with sexually abused individuals
who have a learning disability in Craft, A. (ED) Practice issues in Sexuality
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Sinason, V. (1993,a) Mental Handicap and Human
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Sinason, V. (1993,b) The vulnerability of the Handicapped Child and Adult. In Clinical
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Sobsey, D. Sexual abuse of individuals with
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Tymchuk, A. Yokota, A. and Rahbar, B (1990)
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FURTHER READING
Gunn, M.J. Sex and Law: a brief guide for staff working with people with learning
difficulties. London: Family Planning Association.
Jones, K. Mental Health and Social Policy 1945-1959,
Routledge and Kegan Paul, 1960.
Mental Handicap and Sexuality: Issues and
Perspectives, Craft, A. (Ed), Costello, Tunbridge Wells, 1987.
Practice Issues in Sexuality and Learning
Disabilities, Craft, A. (Ed), Routledge, London and New York, 1994.
Roy, M., Corbett, J.A., Newton, J., Roy, A. (1993)
Women with a learning disability referred for sterilisation, assessment and
follow up. Journal of Obstetrics
and Gynaecology, Vol. 13, No. 4, 270-75.
Roy, M., Corbett, J.A., Newton, J., Roy, A. (1993)
Referrals of persons with a learning disability for fertility regulation.
A regional survey. Journal of Obstetrics and Gynaecology, Vol. 13, No. 5
361-64.
Roy, M., Corbett, J.A., Newton, J., Roy, A. (1993)
Assessment of fertility regulations in persons with a learning disability -
antecedents. Journal of Obstetrics and Gynaecology, Vol. 13, No. 6, 473-80.
Roy, M., Roy, A. (1988) Sterilisation for girls and women with mental handicap. Some ethical and moral considerations. Mental Handicap Vol. 16, 97-100.
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