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Correspondence

Annotation
M Blackburn
Community Paediatric
Research Unit
Academic Department of
Child Health
Charing Cross and
Westminster Medical School
Chelsea and Westminster
Hospital
London SWio 'Sexuality, disability and abuse: advice for life . not just
UK
for kids!'*

M Blackburn
Community Paediatric Research Unit, Academic Department of Child Health, Charing Cross and
Westminster Medical School, Chelsea and Westminster Hospital, London, UK ,

Accepted for publication 31 May 1995

Summary

This annotation addresses the debate about the availability, taboos, choices and
risics concerning the sexuality and abuse of young disabied people, it highiights
the vuinerabiiity of some disabied young people and discusses the diiemmas of
maintaining the disabied person's dignity, safeguarding his/her independence
and recognizing the need for appropriate sex education while providing protec-
tion from abuse, it is suggested that statutory agencies as well as iegisiation
shouid assume greater responsibiiity for protecting and safeguarding the inter-
ests of disabied youngsters, some of whom may risi( physical, emotional and
sexuai abuse beyond childhood. The manner in which sexuality and abuse are
dealt with often ref iects the way disabled peopie are regarded by the society. This
paper attempts to address some of the iegai and conceptuai issues surrounding
this area.

Keywords: sexuality, disability, abuse, independence


Child: care, health
and development

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NUMBER J
*Disclaimer The author is aware that some of the language used within this text may appear
pejorative and demeaning of disabled people. This is not intended. Some of the terminology is taken
1995
from Statutes and health care literature.
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Introduction
Recently, there has been a surge of interest in the sexuality as well the abuse of
disabled young people (Sobsey et al. 1991; Westcott & Clement 1992; Westcott
1993). There are a number of studies which suggest that people with disabilities
may be impoverished in social experience and interpersonal relationships
(Domer 1977J Blackburn 1993J Appleton et al. 1994). Such impoverishment
may lead to diflSculty in establishing meaningful relationships and curtail
development of essential social and emotional skills in adult life. (Thomas et al.
1989; Blackburn 1993). Domer (1977) noted that denying disabled 'people
access to information and opportunities to have sex does not necessarily
suppress sexual feelings. He examined the sexual knowledge and interest in 63
adolescents with spina bifida and reported that only 57.1% had received sex
education in school. In our study of young disabled adults, 80% had received
sex information at some stage of their lives from a variety of sources^ mainly
schools, parents and audio-visual aids (Blackburn 1993). Information was not
always consistent or appropriate to their particular disability. One man reported
that he had been asked to leave the sex education class and go to the
hydrotherapy pool 'as the sex education class would be irrelevant to his needs'.
Sexual interest clearly increases with maturity and the absence of appropriate
sex information may in future result in displays of inappropriate sexual
behaviour such as excessive demands for affection from carers or masturbation
by a disabled person in public.
There is still a paucity of research concerning the abuse of young disabled
adults (Brown & Turk 1992J Westcott 1993). Recent research (Westcott 1993^ Craft
1994) suggests that various factors may contribute to the increased vulnerability
of disabled young people. Current literature challenges and refutes pre-
viously held notions that disabled people cannot be abused although
estimates of the prevalence of sexual abuse of disabled children and adults with
learning disabilities within the UK vary (Marchant 1991; Westcott 1993).
In a study of young disabled adults we found a 10% retrospective disclosure
of abuse (physical, emotional and sexual^:) (Blackburn, Bax & Strehlow 1991).
Although this particular study did not specifically aim to elucidate 'abuse'
information, disclosure was freely volunteered during interviews. We believe
Child: caie, health reports might have been higher had the study included specific questions about
and development
abuse. Brown and Turk (1992) investigated the incidence and nature of sexual
VOLUME 21 abuse of yoimg people with learning difficulties. They reported that 23% of the
NUMBER 5
women interviewed had experienced 'non-contact' sexual abuse (e.g. indecent
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i Department of Health: Working Together; (1991) Guidelines. Definitions of Abuse.
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exposure) and a large percentage, contact abuse. It seems likely that the
estimated incidence of abuse will be higher in studies which primarily seek to
obtain such information.

Provision of appropriate sex eduoation

Equal opportunities and the international framework

The concept of equal opportunities in sex education is relatively new. Until


recently, the notion of disabled people wanting information about sex was
deemed unthinkable (Blackbum 1993). English and Welsh Law generally seeks
to protect the disabled person's physical and emotional well-being within a
framework of multidisdplinary support, without always paying due consideration
to the requests of the disabled person. The Children Act (1989), however, does
acknowledge the importance of involving young people in decision-making. The
child's/young person's needs are considered to be paramount. Although the
Children Act encapsulated many principles of modem welfarism concerning the
rights of yoiing people, it paid only lip service to the specialist needs of disabled
people in section 17 of the Act. Ensuring access to sex information to protect them
from potentially harmful situations is not specifically addressed within this Act.
The United Nations Conventions on the Rights of the Child, contains recommen-
dations concerning the rights of all young people. The convention aims to bring
uniformity of government response and reaffirm a whole spectrum of rights —
civil, social and ciiltural — within an atmosphere of freedom, dignity and choice
for all young people.
The European Convention on the Rights of the Child strove to eradicate abusive,
inappropriate exploitation of young people, particularly in relation to child
pornography and potentially abusive and harmful situations.
In the United Kingdom, the recent multiconsortia Child Health Rights (1995)
document 'aims to promote good practice and translate the contents of the UN
convention into everyday examples and to highlight its importance in everyday
health care' for health professionals working with young people. Regrettably,
this first edition does not address the specific rights of the disabled person.
Child: care, health
and development

VOLUMB 21
Sex education curriculum
NUMBER 5

The curriculum should be adapted to the individual needs, chronological age,


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cognitive and physical status of the young person. Clearly many questions and
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requests for sex information may not be raised xintil the child leaves school
(Blackbum 1993). Access to individual counselling and 'sex' information should
be available in colleges of further education, residential and sheltered housing
units and the workplace throughout life for both the disabled person and his/her
carer. The school sex education curriculum will vary depending on the specific
needs and religious beliefe of the institution as well as the chronological and
cognitive ability of the young person. The Education Act 1993 now reqiiires all
secondary schools to provide sex education in their curriculum. Governing
bodies may regulate the content and parents must approve the ciirriculum and
have the right to withdraw their child from such classes. As increasing rights are
being given to the child, the young person should soon be able to challenge such
parental decisions before the oflScial age of consent.
Findings from our research indicated the importance of designing individual-
ized sex education programmes for disabled people although exclusion from
programmes for able bodied people was not advocated (Blackbiim 1993). Only
18.4% of our sample stated that their school curriculum included information
about sexuality and disability. The young people requested specific infonhadon
about puberty growth differences, urinary and bowel management in sexual
relationships as well as information about peer relationships, conception,
genetic risks, childbirth, comfortable positions for love-making and other
methods of sexual fulfilment without necessarily having penetrative sex. There
is a need to take account of both cognitive impairments and the possibility that
some disabled people may be unable to learn, encode and retrieve information.
This has implications for curricula design.

Protection of vulnerable children and adults


Child protection provision up to 16 years
There is sometimes a gulf between the child who can and the child who is unable
to express him/herself clearly. A child who has the ability of self expression will
hopefiilly talk to a responsible adult to ensure that he/she is protected from
Child: care, health significant harm, although this may not be easy. Where self expression is limited
and development or absent, the carer's responsibility to detect and protect the disabled child from
VOLUME 21
possible harm can be onerous. The child with an 'intellectual impairment' who
NUMBER 5 frequently displays aggressive or disturbed behaviour and cannot articulate
his/her fears or experiences may be particularly vulnerable to abuse. Abuse
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disclosure maybe disbelieved by carers (Marchant 1991). The 'Ashworth
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Hospital Inquiry* (1992) alluded to the difSculties in identifying abuse among


those with 'intellectual impairments.'
The Children Act (1989) enables the Court to make an order in favour of a local
authority if: (a) the child concerned is siiffering, or is likely to suffer, significant
harm; and that (b) the harm or likelihood of harm, is attributable to (i) the care
given to the child, or likely to be given to him if the order were not made, not
being what it would be reasonable to expect a parent to give to him; or (ii) the
child's being beyond parental control' (Section 31(2)).
Sexual abuse is dearly 'harm' if one considers the definition of ill-treatment
or 'impairment* of health (s 31a Children Act 1989). The Court also has to be
satisfied that the 'harm' is 'significant'. The Court may therefore have the
di£5cult task of deciding whether the abuse is in fact 'significant'. When
considering the care which one could reasonably expect of a parent, an objective
position must be taken. A 'reasonable' parent is not defined under the Children
Act (1989) but might be described as:

An individual who has properly exercised his or her responsibilities in the


duty of caring for his/her child until he/she reaches adulthood (18 years) or
until such time as deemed necessary after 18 years). Such a parent will then
be considered to have acted in the young person's best interest.

The Courts must always be satisfied that it is in the best interests of the child
to make an Order (the Principle of Non-intervention). A parent does not
necessarily lose his/her responsibilities as a resiilt of a Care Order being made,
but retains parental responsibility. The Local Authority will assume the
decision-making of a parent in attending to the physical, intellectual, emotional,
social and behavioural needs of the child. It wiU also assume responsibility for
the child's residence and those with whom the child has contact.

Protecting disabled people after 18 years

Cxirrently (Walsh & Blackbum 1994) there is no legislation which protects and
safeguards vulnerable adults in the way that English Law protects children.
There is often ambiguity between the official age of consent, generally held to
Child: care, health be 16 years in English Law, and the limit of statutory service provision for
and development children, generally considered to be 18 years (^Children Act 1989). This is
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compounded by variations between agencies' duties, budgets as well as incon-
NUMBER 5 sistencies in providing specialist health care, education, finance and protection
after 18 years (Morgan, Blackbum & Bax 1995).
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'Persons imder Disability' are defined in law as a patient or a minor (i.e. a
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child iinder i8 years). The Children Act (1989) states that 'a person with a
disability qualifies for services before and after the age of 18 years'. Most children
by this age are considered adults and can legally choose and make most decisions
independently. The Act offers no recommendations for more vulnerable adults
who have attained the chronological age of consent (16 years) but may be
younger in terms of their social,emotionalj sexual and cognitive maturity. There
is no comprehensive legal definition of physical impairment. Mental disorder is
defined by the Mental Health Act (1983) as:

'mental illness, arrested or incomplete development of mind, psychopathic


disorder and any disorder or disability of mind si(2)'.

Statutory definitions are provided for two forms of arrested or incomplete


development of mind; 'severe mental impairment' and 'mental impairment'.
'Severe mental impairment' affects intelligence and social functioning and
may be associated with abnormally aggressive behaviour or serious misconduct
on the part of the individual concemed. 'Mental impairment' diminishes
intelligence and social functioning but may not necessarily severely impair the
mind. The law assumes that all individuals, irrespective of age or physical disability
have 'mental capacity' until the contrary is proven. While a medical or psychology
assessment may determine capacity, the courts are obliged to judge both
professional and lay evidence in both civil and criminal proceedings. The statutory
jurisdiction of the management of the affairs, safety and well-being of individuals
is conferred by the Mental Health Act (1983). This is exercised where a judge
considers it necessary to safeguard and protect the interests of vulnerable
individuals. The courts, in the absence of a suitable relative or fiiend, will
appoint the 'Official Solicitor' as guardian ad litem to protect the patient's rights
and his/her person. A care order will not be made in respect of a young adiJt
over the age of 17. It may be inappropriate for a local authority to institute care
proceedings even when abuse has resulted in 'significant harm', except in the
most serious of cases. Clearly the disabled adult who falls short of the definition
of 'a patient' is treated as an adult irrespective of his/her mental age. No
consideration is given to particular physical disabilities. Where adults continue
to require health and statutory service provision well after their 16 chronological
years, these service providers should also have a duty to be concemed about
Child: caie, health
and development potential 'abuse'.

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NUMBER 5
Sexuality, disability and the law
J995
The Sexual Offences Act 1956 (14) and the Sexual Offences Acts 1967, s i, as
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well as the amendments 1976,1985 and 1993 are still the bench-marks of sexual
criminal law, which are applied by the covirts in England.
Section I4(iv) of the 1956 Act, as amended by the Mental Health (Amend-
ment) Act 1983 defines a 'defective' as when s/he has a

'state of arrested or incomplete development of mind which includes severe


impairment of intelligence and social functioning'.

A woman who is a 'defective' cannot in law give any consent which would
prevent an act being an assault for the purposes of this section. A person is only
able to be treated as guilty of an indecent assault on a 'defective' by reason of
incapacity to consent if that person knew or had reason to suspect her to be 'a
defective'. It is therefore possible to conceive of a case where a woriian with
moderate to severe intellectual impairment, who is fully physically developed,
cannot give reliable evidence concerning her alleged rape because of her
'disability'. It is likely that no charge would stand against the defendant if the
man could argue that he was unaware of her 'learning impairment' at the time
of sexual intercourse. Frequently the parameters applied by the Courts relate to
consensual sexual behaviour which would be applied to the person with 'normal'
intelligence. For example, in the case of DPP V Morgan T975 AT T. F.R ^^^7 the
defendants were culpable for failing to ensure that their able-bodied victim was
consenting to sexual intercoiirse. This case concerned three oflBcers who were
invited to have sex with a fourth oflScer's wife, a Mrs Morgan. Mr Morgan
thought his wife would agree to have sex with the other three men. The three
men forcibly restrained Mrs Morgan, without her consent and individually had
sexual intercourse with her. The trial jury were told that the prosecution had to
prove that the accused intended to have intercourse with Mrs Morgan without
her consent. If they felt she had consented, the ofiBcers would not have been
found guilty.

Sexuality and professional accountability


While it is important to consider the rights of disabled people to receive
Child: care, health appropriate information, sexual fulfilment and opportunities to discuss their
and development sexuality. It is also essential that the carer who in his/her professional capacity
may be required to assist a disabled person with routine 'intimate care'
procediires, such as phjrsiotherapy, toileting, bathing, dressing, does not
subsequently face the risk of criminal charges. To be a victim of sexual abuse or
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rape is appalling, but so is to be a victim of unwarranted allegations.
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Two important questions arise in this discussion

1 What is considered acceptable, legitimate sexual behaviour for disabled


adults, particularly those living in residential care?
2 Are current 'sexual policies' adequate and do they safeguard and protect
the interests of both carers and disabled people?

Many disabled adxilts over 18 are supported by relatives at home or in


residential care. Advances in medical treatment over the last 25 years now enable
many children with complex disabilities to survive into adulthood and to have
the same desires for sexual relationships as their able-bodied peers (Morgan,
Blackburn & Bax 1995). Ensuring that disabled people receive sex education
throughout life, and not just in childhood, which is appropriate to the particular
physical and/or cognitive ability is therefore of paramount importance (Black-
bum 1993).
Although sexual intercourse may prove physically difBcult for a disabled
person, carers rhay sometimes be asked to advise about other forms of sexual
fulfilment and relief, such as masturbation. The importance of teaching
masturbation within a clearly defined and zoeU monitored programme has been
suggested by Carson (1987) and Guim (1991; 1993). They argue that agencies
may fail in their 'duty of care' in not intervening to help people who may require
such assistance. The authors recognize such programmes require vigilant
supervision but have sought to increase the awareness of the sexuality of disabled
people (Gimn 1993; Law Commission 1995).
A manager recently asked my assistance in preparing a 'sexual policy' for staff
working in a residential unit. This initiative followed a request by a 25-year-old
man with spastic quadraplegia who asked for a prostitute to visit the centre. The
man had an IQ of about 120, but was unable to arrange this service inde-
pendendy. He had never had a sexual relationship and was eager to have one.
The manager questioned her own professional and moral responsibilities in the
light of the following.

1 Should she respond to the request in order to alleviate the man's apparent
Child: care, health sexual frustration?
and developinent 2 Would procuring the services of a prostitute be condemned by other
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colleagues or residents and breach the institution's religious or moral
NUMBER 5 code?
3 Could this establish a precedent with similar requests being made by other
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disabled adults?
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4 How does this request differ from a carer assisting with routine 'intimate'
daily care, such as physiotherapy, toileting,bathing and dressing, which
may also provide sexual pleasure for some (disabled) people?
5 What other important factors should be considered? The man's chrono-
logical age, implications for safer sex, the risk of sexually transmitted
disease, abuse, or inappropriate sexual behaviour?
6 What are the issues and implications for both civil and criminal law?
7 Would arranging a prostitute be seen as procurement?

The manager would be advised to carefully examine the particular religious,


cultural norms and practices of the centre and scrutinize existing regulations
particularly concerning impropriety and conduct on the premises. If this man
had lived independently, within his own home and contacted the prostitute
personally, arguably the circumstances might have differed. In Holland there is
greater openness and willingness to address specific sex education and sexual
needs of disabled people. Indeed procuring and engaging the services of a
prostitute for a disabled adult is not necessarilyfrownedupon in Holland where
there are specialist agencies who provide such services. Staff receive specialist
training about their client(s) particular disability(ies) and appropriate methods
of providing sexual fulfilment.
None of the above questions are easily answered but equally cannot be
ignored. If 'carers' and their managers have any doubt about their responsibili-
ties, the best advice is to avoid any activity which might lead to unwarranted
allegation of abuse by the carer. However, such scenarios are not unique, as has
been demonstrated by an increasing number of requests from various institu-
tions throughout the UK for clearer sexual policy guidelines. An increasing
number of agencies (Bamardos 1993) are now preparing Sexual Policy guide-
lines which aim to protect and safeguard the interests of both disabled adults
and their carers.

Conclusion
Child: care, health The sexuality of disabled yovmg people has been neglected for too long. Denying
and development disabled young people the right to sexual fulfilment, independence and restrict-
VOLUMB 21
ing choice may increase their poor self- image and esteem, and thus make them
NUMBER 5 more vulnerable to abuse (Thomas et aL 1989). Society is often 'retarded' in
accepting the physical and emotional needs, as well as the autonomy and worth
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of disabled people. If we deny disabled young people opportunities to learn
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about and engage in relationships they may become more vulnerable in adult
life. Equally, sheltering disabled children from life's challenges ill prepares them
for some of the hazards they may inevitably encounter in adulthood. Current
child protection provision for disabled children may still require review. The
absence of a complementary framework which recognizes autonomy but
safeguards and protects the physical, emotional and sexual vulnerability of some
disabled adults needs urgent consideration and action. The need for reform is
now recognized by the Law Commission in recent consultation papers (1993,
1995)- However, not all of the issues addressed in this debate are under
consideration for reform. In the meantime a greater awareness is required of
both the sexual needs and vulnerability of an under represented and frequendy
ignored section of the young population.

Acknowledgements
The author would like to thank the following: Dr Martin Bax, Senior Research
Fellow, Chelsea and Westminster Hospital; Geoffrey Dearing, Solicitor, Brachers,
Maidstone, Kent. 'The Association foi: Spina Bifida and/or hydrocephaius'
(ASBAH). Written while a student of Law at the University of Westminster.

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