The sexual experiences and sexual abuse of women with learning disabilities in institutional and

256 Pages·2009·13.42 MB·English

learning disabilities in
The
sexual experiences and sexual abuse of women with
institutional
and community settings.
for
in fiilfilment
A thesis to NEddlesex University partial of the requirements
submitted
degree Doctor Philosophy
the of
of
I
Michelle McCarthy (B. A. Hons., B. PH., M. A. )
School Social Work Health Sciences
and
of
Mddlesex Urýversity
March 1997
ABSTRACT
leaming disabilities,
Using in-depth interviews this research
with seventeen women with
is both
focuses how their Attention paid to their
on the women experienced sexuality.
consented sexual experiences and sexual abuse, as well as to other related matters such as
health.
contraception and sexual
The main findings of this research are that only a small minority of the women were very
in deciding for
lives. Ile lacked terms of
positive about their sexual majority control
how. Most
do, the
themselves what they wanted to with whom, when and of women
A lack
of sexual pleasure
experienced exclusively or predominantly penetrative sex.
by In high
the addition very
generally, and orgasm specifically, was reported all women.
discussed in
The findings the
levels of this research are
of sexual abuse were reported.
in learning disability field, the
the and other research on
context of other relateA work
sexuality and sexual abuse of non-disabled women.
few
One important findings is that, few there were very
the with a exceptions,
of most
differences in lived, had Hved in hospitals, compared to
the experiences of women who or
women who lived in community settings. The quality of the womeds experiences were
had
directly determined by the the they with men; whether men
more nature of relationships
levels
towards them; the womerfs of self-esteem and
were abusive or aggressive
assertiveness; the availability of sex education and support.
increasing
Policy to womeiYs sexual
and practice recommendations are made which relate
justice if have been the
in lean-dng disability they abused; changing
safety services; achieving
content of sex education to include much more of an emphasis on womerfs sexual pleasure,
in
for
their
choices, and consent. Recommendations are also made supporting men sexual
relationships with women.
ACKNOWLEDGMENTS
following
My
thanks go to the people:
learning disabilities
the seventeen women with whose experiences and views are
learning disabilities have
represented here, and to all the many other women with who
information
shared personal, and sometimes painful, with me;
the Sex Education Tearn, who not only supported me and my work
my colleagues on
I but back I left and who thus made the
whilst was there, who welcomed me after
instrumental in
David Thompson
completion of this research possible. was not only
final draft for
but he the of the thesis,
providing this support, also read and commented on
I
which am extremely grateful;
Jeanne Gregory for
Helen Cosis Brown their encouragement and expert supervision
and
thanks.
over the years many
-
77ze
sexual expefiences wd sexual ahuse of women with learning disahilities in insiftutional
wid
community setlings.
CONTENTS
PAGES
CHAPTER ONE RTMODUCTION
1-5
-
CHAPTER TWO NIETHODOLOGY AND NETHODS
643
-
CHAPTER THREE LITERATURE REVIEW
-
Perspectives
on sexuality and
sexual violence 44-68
CHAPTER FOUR LITERATURE REVIEW
-
Lean-dng disability
ideologies
and sexuality 69-107
CHAPTER FIVE FINDINGS
108-174
-
CHAPTER SIX DISCUSSION
175-196
-
CHAPTER SEVEN RECOMMENDATIONS
197-221
-
APPENDIX INTERVIEW QUESTIONS
222-225
-
BEBLIOGRAPHY
226-252
1
CEUPTER ONE INTRODUMON
-
learning disabilities (Williams 1992: 149). This fact, it
Women too'
with are women and
implications, important has been the forefront
now so obvious and to me, not always at of my
mind. From the mid- to late-1980s, I was either working full time with people with learning
disabiliýies or training to be a social worker, with a view to returning to the learning disability
in
field. During I involved
this time, was closely with a small group of other women setting up
in I for local
town. the
and running a rape crisis service our was also part of a support group
issues
Women's Aid At I
refuge. that time considered my work with women on of violence
learning disabilities, be
to two
and sexual abuse, and my work with people with completely
interest. Nobody I knew, I that time,
separate areas of nor anything read at suggested
However, I facilitated first for learning disabilities,
otherwise. once my group women with my
fact had
eyes were opened to the that, particularly with regards to sexual abuse, those women
in From I began to
much common with other women. that point on, see many connections
(and differences) ffe During I
some and my working changed. my social work practice,
became increasingly interested in learning disabilities in
their
supporting women with personal
led
and sexual relationships and this to me taking up a post which was solely concerned with
issues to learning disabilities. By the time this began in 1992,1
related sexuality and research
had been for Team Leader
employed three years as the of a small specialist sex education team
for learning disabilifies. Ile based, in
team three
people with was and worked predominantly,
'
big hospitals for learning disabilities in in S. E. England.
people with a shire county
Nevertheless, (in 1992
the team their time this
members spent a significant proportion of was
25%) learning disabilities in
approximately working with people with community settings, such
homes, hostels day
as group and services.
The Sex Education Team (with founding in 1989,
was set up me as a member) originally with
focus HIV It initially funded by Regional Health Authority's IRV
the
a on prevention. was
Prevention budget by local Health Promotion Urk It later became integral
and managed a an
the NHS Learning Disability Trust in it based.
part of which was
As I for individual
the only woman on the team, was responsible all and group work with
learning disabilities. My broad issues
to
women with work covered a range of related sexuality,
such as: safer sex education; support and counselling regarding relationships and sex; sexual
2
for had been
abuse prevention work; counseUing and support women who abused; as weU as
in
sex education the commonly understood sense of the term.
My direct based it
the team,
work experience on and a small piece of academic research on
(McCarthy 1991) had insights into how learning disabilities
given me some good women with
fives. However it body
their that the
were experiencing sexual was noticeable growing of
literature learning disability did describe
regarding sexuality and not explore or the reality of
literature 'about
actual sexual experiences of actual women and men; rather the was sexuality'
in
In four I have in
a more abstract sense. chapters three and of this study, set my own work
the the literature lean-dng disability, in
context of on sexuality and as well as the context of
research and thinking on sexuality issues more broadly. The motivation for this research, then,
to fill the in knowledge, but fill in 'knowledge' in
was gaps my own also to the gaps a wider
sense.
I decided I investigate
that would thoroughly the sexual experiences and sexual abuse of a
learning disabilities. My ideally
sample group of women with that time
position at was suited
to the task, because it integral job individual lean-dng
was an part of my to talk to women with
disabilities in hospital
fives. However it is important
and community settings about their sexual
to that the 1993,1 jobs. I focus
note at end of changed took up an academic post where the of
the learning disabilities, but I had less
my work was still sexuality of people with where much
direct
lean-dng disabilities
I
contact with people with themselves. managed to negotiate a
situation whereby I returned to the sex education team for 1/2day or I day per week for a two
I interviews Only interviews in
year period and continued my that way. three of the seventeen
in
this study were conducted the area I moved to for the new job. This is because there are
difficulties in
for individuals learning
considerable gaining access research purposes to who use
disability
it
services : with a subject matter as sensitive and personal as sexual experiences,
difficult for
proved very me to gain entry to services and those people who use them.
I it benefit
was very aware at the outset of the research that would probably not the
themselves in direct However is in it is
respondents any way. this not unusual research and not
long both
necessarily problematic or unethical, as as the researcher and researched are clear
it:
about
I
3
[.. ] it be if has little impact fives
that the
should noted even research on of
included in it, it be important for
those may the category of persons they are
taken to Thus, housing be
represent. work on rape, or women's problems may
late directly involved in it, but
too to the those
alleviate suffering of can
legislation, behaviour in
contribute to policy or the of agencies ways which
later
the (Maynard 1994: 17).
enhance experiences of others
Although it is involved in
true that the this
seventeen women research will probably not profit
in
from it, I benefit from
any way the end results of nevertheless was confident that they could
the I being intrusive
process. was also anxious to avoid the situation of overly with relative
(bearing in investigation). I
strangers the the therefore that
n-dnd nature of made a commitment
I learning disabilities for
would not talk to any women with purely research purpos es. This
I interviews in
that
meant arranged all seventeen to take place the context of my providing the
issues. There is full
women with educational or counselling support on relationship/sexuality a
discussion in two how I
chapter on attempted to get the methodology right.
Using in-depth interviews, I have information from
serni-structured obtained seventeen women
learning disabilities' following
in;
with on the areas: the range of sexual activities they engage
their dislikes in knowledge bodies; decision
preferences and relation to that; their about their
forced
making and control over sexual activity; coerced or sexual activities; their sex
their impressions fives; health
education; of other people! s sexual their sexual and reproductive
including
their The I devised did include
use of contraception. original set of questions not
how felt how
questions about the women about their appearance and they rated their
One Helen Cosis Brown,
attractiveness. of my supervisors, pointed this omission out to me
because I important in
and agreed that they
were considerations any exploration of womerfs
sexuality, they were then added. However it meant that the first woman interviewed was not
these (See for
asked questions, although the subsequent sixteen women were. appendix
interview )
questions.
The is I have how
political context of this piece of work one whereby tried to make explicit
learning disabilities have, by large, been invisible in human
women with and rendered two
have
rights struggles, where they a righffW place: namely the womens movement; and the
towards / for learning disabilities. In
movement normalisation social progress people with this
research study I have sought to rectify these ornissions. In chapter three I argue that it is due
4
feminist
to it is
activism, research and scholarship that possible to recognise and challenge the
However I fen-dnist
sexual oppression of women. also argue that much analysis and many
feminists have ignored learning disabilities.
traditionally the It
very existence of women with
has fallen
to those learning disability field
of us who work within the and who are also
feminists,
'mainstream! feminists
to learning
make the
aware of experiences of women with
disabilities. Encouraging facilitating lean-dng disabilities for
and women with to speak out
has been important
themselves
this
an part of process.
In four I
chapter that the living have
argue although principles of normalisation and ordinary
been
importance in for learrdng disabilities, have
of enormous services people with they tended
to inequalities (and indeed inequalities based
obscure pre-existing gender
on race, sexual
Sexual have had fairly in
orientation, class). rights rightly a prominent place the general
demand for for learning disabilities. My (and has
rights people with work that of others)
demonstrated
the necessity of recognising the gendered sexual fives that people tend to five
has
and spelt out what the implications of this are for many women with learning disabilities.
These highli in
five
are ghted chapters and six.
One important
of the theoretical contributions; of this work then, is that I have used a
methodology which makes analyses along the axes of both gender and disability. This is
important because it has been
that:
argued
intersection
the feminism disability has been least
of and studies one of the
..
because dominance disability
explored of the of as the primary category of
the feminist include disability in
analysis and avoidance of studies to their
difference. This disabilities have
categories of process, whereby women with
Men
through the defmition, has
gaps of theory, and consciousness,
(Chenoweth
manufactured a silence around them and their experiences
1996: 394).
In this I learning
research study wanted to avoid an analysis of the experiences of women with
disabilities
which suggested that any oppression stemmed purely from their gender. I also
wanted to avoid some of the familiar traps of some research from a disability rights
being firmly in,
perspective: unproblematically accepting a male norm; and
rooted and relating
exclusively or primarily to, the disabilities.
experience of people with physical
This has during
piece of research taken time in for
place a of considerable change services
learning disabilities in
But has been far
people with the the
and wider context. change process
5
from The large institutions for learning disabilities have
smooth. people with continued to
but based
be In has
close, community provision continues to under-resourced. addition there
been introduction
the of the'internal market'in the NHS and the development of NHS Trusts.
Care Management have been introduced in
and asse ssment also the social care market, which
has become increasingly fragmented.
Far is
more research needed to monitor the effects of the
various social policy changes upon the lives of individuals with learning disabilities. There is a
widespread assumption that all aspects of He are fundamentally different depending
on
fives in large institution based
whether a person a or small community setting, with the
being
institution. A between
community always assumed as superior to the comparison
institutional
has been feature
and community settings an explicit of this research and my
findings
fife,
suggest that with regards to one aspect oý namely sexual experiences of women
with learning disabilities, there are far fewer differences than have been
might expected.
Despite this, I in discussion (chapter (chapter
am very clear my
six) and recommendations
this finding be in for
seven) why particular should not used any way to argue the continued
hospital based
provision of services.
Working from feminist
(integral is belief
a perspective to that
which a many sexual problems
I
are a result of socially constructed gender roles and expectations) anticipated that any
fi7om be in
recommendations resulting this research would the realm of the social or political,
individual
than the Indeed is has
rather or private sphere. this transpired:
what whilst some of
in
the individual learning
recommendations chapter seven suggest changes that
women with
disabilities be
might enabled to make, most of the recommendations involve steps to dismantle
forms
the face.
wider, structural of oppression that the
women
6
CHAPTER 2- METHODOLOGY AND METHODS
In this I briefly
chapter will outline some of the major principles and practice guidelines of the
different
three
research perspectives which are most relevant to my work: ethnography,
disability
feminist I discuss how
research methodology, and research methodology. will my
work both relates to, and departs from, these how it is, in fact,
perspectives and
an
from An be
amalgamation of elements all three. examination will also made of some of the
particular considerations involved in researching sensitive topics. In the final section I will
the
outline actual research methods used and why they were chosen.
Methodology
Ethnography
Ethnography is be
to the describing (Spradley 1979). Through
often said work of a culture
a
documentation interviewing,
possible mixture of participant observation, analysing and the
be describe
ethnographer aims to able to one group of people to another. Ethnography also
describes behaviour in its
The be
natural setting. ethnographer should not aiming to remain
from her/his (even if
completely objective the subjects of research this were possible) nor to
becoming
in fives, descriptions
so enmeshed their that them
any of are completely subjective.
Ethnography is interpretive.
essentially
Consequently,
much traditional terminology the lot
research misses point of a of what goes on
in
hypotheses, independent
ethnographic studies: generating
control groups and variables may
be irrelevant
is describe interpret
the task to Agar
when
and a society or part of a society.
that 'the language just does fit details
suggests of the received view of science not the of the
if doing 0985: 12). However, if is it
research process very well you are ethnography' this true,
does
that there is it is
not mean that
no research process and simply a matter of observing and
Fielding (1993)
behaviour,
reporting. states that to understand social the researcher needs to
the 'symbolic! i.
understand subject's the to their
world, e. meanings people apply own
The
do, far
experiences. researcher must try to see things as the subjects adopting, as as
their This is introspective, Weber
possible, perspective. the
empathetic process called
'verstehed (1947).