British Journal of

Learning Disabilities
The Official Journal of the British Institute of Learning Disabilities

ORIGINAL ARTICLE

‘My great hope in life is to have

a house, a family and a
daughter’: relationships and
sexuality in intellectually
disabled people
Susana Rojas, Ignacio Haya and Susana La
zaro-Visa, Department of Education, University of
Cantabria, Avda. los Castros, s/n, Santander, 39005, Spain (E-mail: rojass@unican.es)

Accessible summary • Relationships and sexuality are important for disabled people.
• Through the voices of 16 intellectually disabled adults, this paper shows what they
consider to be important in areas such as education or personal relationships.
• Most of the people interviewed would like to have a partner and live together as a
couple.
• Intellectually disabled people encounter many barriers to obtain certain basic
rights.

Summary This study starts from the premise that we are sexual beings, and therefore, sexuality
is part of our lives and defines us as human beings. This is also true with regard to
intellectually disabled people. Within the framework of broader qualitative research
carried out in Spain, some partial results of an ongoing study aimed at finding out
what a group of adults see as important in different areas of their lives are presented
here. Through the personal narratives of 16 intellectually disabled people, this paper
explores some of their ideas and demands about sexuality and their sexual lives.
Most of the people interviewed expressed their desire to have a partner and to live as
a couple. There is no doubt that many intellectually disabled people have greater
control over their lives and the decisions that affect them, but as they tell us, the
presence of old ideas can hinder them from securing their fundamental rights.

Keywords Full citizenship, sexuality, social and educational barriers

education and religion) and different interests (care, pro-

Introduction
Nobody disputes the fact that we are emotional and sexual
beings. However, when we are dealing with disabled and
more specifically intellectually disabled people, then this
notion is questioned. From different contexts (family,
tection, regulation or suppression), attempts have been
made to control this aspect of the lives of disabled people.
This means that for a great deal of time, people with
intellectual disability have seen how a fundamental part of
their lives has been condemned to oblivion as noted by

doi:10.1111/bld.12110 ª 2014 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 44, 56–62

some authors (Anderson & Kitchin 2000; Brown 1994;
McConkey & Leavey 2013).
There are two recurring ideas in the scenario that we have
just described that are still relevant today. The first idea is that
people with intellectual disability are asexual beings (with no
interest in exploring their own body or that of another
person, in having relationships or in having children). The
second idea attributes their sexuality to abnormal and
maladjusted sexual behaviour. Both ideas, especially the
latter, feed the deficient explanation of the ‘other’ and some of
the stereotypical presumptions surrounding sexuality and
disabled people (Shakespeare et al. 1996).
Furthermore, the sexuality of intellectually disabled
people has not featured prominently in academic contexts.
We have found some key studies from the nineties (Booth &
Booth 1994; McCarthy 1999; Shakespeare et al. 1996), which
explored different issues within the complex construct of
sexuality and which also helped to question some of the
misconceptions or existing myths surrounding this subject.
Other more recent research (Fitzgerald & Withers 2013;
Goodley & Lawthom 2011; McCarthy 2010) offers us, from
different theoretical approaches, a more complex view of
the subject under discussion. Nevertheless, as McCarthy
(2010) and Schultz (2009) point out, studies related to this
topic remain scarce.
In Spain, the situation is different. For just over a decade,
relevant studies can be found addressing the sexuality of
people with physical disabilities or diverse functionality
(Allu
e 2003; Guzm
an & Platero 2012). That is, studies based
on sexuality as a social construct that question and analyse
the way determined types of relationships with people with
disabilities operate and are legitimised. However, very few
studies can be found addressing the subject of sexuality in
people with intellectual disability (Amor 2000; L
opez 2011).
In other words, studies, which from an expert approach,
demonstrate the need to inform and train people with
intellectual disability, their families and professionals about
relevant aspects of human sexuality.
As Shakespeare et al. (1996) argued, over nearly two
decades ago, in their work, Sexual politics of disability: untold
desires, it is necessary to listen to the voices of disabled
people. Getting closer to their personal experiences enables
us to rethink the dominant culture and the kind of policies
and practices that have been developed with regard to
sexuality and disability as well as promoting social com-
mitment towards disabled people (family, professionals and
administration). Furthermore, listening to one another, on
this occasion to people with intellectual disability, is an
activity that recognises the person being listened to and the
value of their contributions.
This work sets out to reveal some of the questions raised
about sexuality by a group of 16 intellectually disabled
people. Within the framework of a study entitled ‘Being alive
and people with learning disabilities’ in which we explored the
ª 2014 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 44, 56–62
Sexual relations in intellectually disabled people 57
views and demands of a group of men and women, we see
the emergence of ideas about couple relationships, and in
particular, some of the difficulties they encounter to enjoy
relationships satisfactorily.
There is no doubt that many intellectually disabled
people now have greater control over their lives and the
decisions that affect them, as well as a greater say in their
emotional and sexual relationships. However, as they
explain, there are old ideas that delay or repress desires or
projects in this regard. We believe that it is fundamental to
listen to what people with disabilities think about the
questions that they feel to be important and bring their
demands to light.
Method
This exploratory study adopted a qualitative approach. The
need to achieve an in-depth understanding of the subjective
experiences of the participants makes the qualitative-
hermeneutic research paradigm the most suitable for the
development of our study (Denzin & Lincoln 2012).
Recruitment
Participants were eligible to take part in the study if they
had a diagnosed intellectual disability and had current
involvement with the adult learning disability service.
Considering it a positive aspect of our work that the
participants valued their rights, we contacted different
professionals from associations that support the develop-
ment of programs promoting self-determination and self-
advocacy for people with intellectual disability.
Firstly, we report on aims of research and the method-
ological strategies that we would use. Professionals from
these associations presented this research to their groups.
Consequently, 16 adults agreed to participate in the study.
Once the associations had put us in touch with people
interested in participating in the study, the research team
explained the participants the social value of the research,
highlighted some issues related to the ethics of the research
and sought their participation. Besides, we formally
requested permission to interview them and to record the
contents of the interviews. Before obtaining their informed
consent, we explained that we would respect their desire to
remain anonymous, and if this was the case, to remove
questions, they were uncomfortable with or to discard
information if they felt this was necessary after the inter-
view had been made. For two people, this process was
subject to the express authority of a legal guardian.
Participants
The research study group comprised a total of 16 intellec-
tually disabled people in Spain. The 10 men and 6 women
58 S. Rojas et al.
were between the ages of 18 and 39 years. Most of the
participants (11) lived in a family home or in an alternative
residence (3), and two lived outside the family nucleus.
None of the other participants lived with a partner.
Practically, all of them were in training or in supported
employment. We consider it important to point out that care
was taken over the language used, so that all participants
would feel free to talk about their sexual orientation or
interests. We created an easy-to-read document in order to
ensure access to information and complete understanding of
the aims of the research. However, this document was only
used by three participants.
Ethical statement
The research follows the Code of Good Scientific Practices of


CSIC (Comit
e de Etica del CSIC 2011). Moreover, the study
has received formal approval from the Department of
Education of University of Cantabria.
Methodological approach
This study aimed to raise awareness about what is impor-
tant for the disabled people who participated in the
research. As Rapley (2014) points out, the consideration of
the people taking part in the study as ‘participants’, in
contrast to ‘research subjects’, demonstrates the concern for
their rights and places the researchers in a more equal
position, leading to more informed and consensual deci-
sion-making with those involved in the research. Their
histories enabled us to understand the complexity and
subtlety of their experience in addition to helping us
approach the social and cultural context in which this takes
place.
Information was collected by means of semi-structured
interviews and images, which were used for initiating
conversations. Both were conceived as flexible resource.
This allowed us to incorporate the decisions of the partic-
ipants in the development of the interview and to ensure
that none of the participants were excluded from the
research (Rojas et al. 2013). The interviews were conducted
in accessible and private places. Each interview lasted
between an hour and a half and 2 h. Some people requested
a copy of the transcripts of the interview.
Data analysis was developed using a thematic coding
process (Gibbs 2012). This process consisted of differentiat-
ing units of meaning (fragments of texts with similar
subjects) to which a code was assigned (e.g. personal project
or personal barriers in couple relationships). The code
catalogue was developed in a deductive–inductive way
given that while the first version was a result of the
theoretical framework of the research, its final version was
enriched by the codes that emerged from the data collected.
The comparative analysis of all the texts grouped together
ª 2014 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 44, 56–62
under the same code generated the results presented below.
The findings presented here are drawn from a larger
qualitative study. We are going to return the final report
to participants shortly.
Results
Couple relationships
While sexual relations are an important issue for the 16
people with whom we spoke, not all the participants were
personally interested in this matter as can be seen later on.
For most of them, this subject is closely related to the idea of
living as a couple. This fact is a key issue in their lives and is
present from the very outset of the interview. As the
following extract illustrates, having a partner is a priority
when they are asked about three important things in their
life, what they do not have and what they would like to
have: ‘Well, for me the most important thing is to have a
steady job and to live with my partner in the future’ (Albert
33 years old).
We are dealing here with an important matter for those
people who have had a partner for some time and also for
those who for different reasons are alone. Without excep-
tion, all of them imagine and define couple relationships as
being close, and based on trust and mutual respect. It is a
question of ‘having respect, sensitivity, and understanding
the other person. And I don’t know. . . sincerity, being
sincere with that person’ (Javier, 30 years old). Those who
have had a partner for some time raise some of the
difficulties that occur in any relationship. For example,
there is the need to understand one another, to adapt and to
make decisions that affect each other in a broader relational
context.
Sexual relations
Precisely, it is the complicity that is established with the
other person that leads them to justify that they prefer sex
within a couple relationship. Except for one of the women,
all of those interviewed state that sometimes it is possible to
have sexual relations with other people, sporadically and
outside a committed relationship. However, in the words of
Gabriel (30 years old) ‘when you have sexual relations with
your partner you share something with her that you do not
share with somebody else’ and that this is difficult to have
in a sporadic relationship. Both for those with a partner for
some time and for those who wish to have a partner in the
future, sex is important but what is more important is
having a relationship that they define as being mutual and
providing companionship.
Other studies have highlighted the difficulties that
women experience when talking about their feelings and
sexuality (Fitzgerald & Withers 2013; McCarthy 2010).

However, not all the women we interviewed were uncom-
fortable in this respect. The younger women who had never
had an intimate relationship with another person appeared
to be more reticent when answering some questions,
something which did not occur with the two women who
have been in a couple relationship for some time and who
talked about their personal relations in the same way they
talked about any other subject of the research. We believe
that it is important to highlight the differences in gender
experience. That is, none of the men had any difficulties
when talking about personal relations with others, whether
they had experienced them or not. In addition, there are
differences in the importance that some participants placed
on personal relations compared to others. As demonstrated
by some of the studies carried out on women in the nineties
(McCarthy 2010), the female participants understand sex to
be something secondary, which is necessary to do in order
to satisfy men and to prevent relationships from deterio-
rating. However, for the male participants, sexual relations
are fundamental to maintain couple relationships.
Without exception they believe that for nondisabled
people it is easier to have sexual relations and to find a
partner than for disabled people. They reiterate that they
can all have sexual relations or find a partner if they do not
have one, but they believe that the standards of beauty that
prevail and the existing stereotypes of disabled people are a
barrier in their emotional relationships, especially for those
people who require more support. This is how Joan
explained the difficulties that he has for starting a relation-
ship with a girl:
Joan I don’t know, for me, I can tell you, it’s really
embarrassing telling a girl that I like her and all
that, and asking her out.
Susana And who do you think it is easier for?
Joan I don’t know, for people who are more attractive,
slimmer, that’s the way I see it.
Susana And why do you think it’s easier for better
looking, slimmer people?
Joan I don’t know, because I have been turned down
lots of times.(29 years old)
Access to occasional sexual relations or sexual relations
with a partner is for some of them a desire. Except for one of
the young people who reminds us that his disability is not
noticeable, which has allowed him to do the same as his
friends, the others admit that they started their couple
relationships when they were about 30 years old, and some
have never had a sexual relationship.
Both accounts express how the ‘ableism’ discourse oper-
ates in the definition of what is possible or imaginable for
people with disability. As Goodley (2014) notes, ‘ableism’s
psychological, social, economic, cultural character norma-
ª 2014 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 44, 56–62
Sexual relations in intellectually disabled people 59
tively privileges able-bodiedness; promotes smooth forms of
personhood and smooth health; creates space fit for
normative citizens’ (p. 21). The similarity with the proposed
normative of a beautiful and able body enables Zelatan to
relate to other people, disabled or not, without self-restraint.
However, for Joan it is an obstacle at the start of relation-
ships with other people, especially intimate or couple
relationships. As the accounts show it is not only a female
concern (Loja et al. 2013; McCarthy 2010), relationships in
the public sphere are conditioned by the set of ideas that
they have internalised in their relationships with nondis-
abled people.
Always in preparation, also when we talk about
feelings
While we were carrying out the research, some people –
M
onica (22 years old) and Maria (23 years old) – stated that
it was not the time to consider this issue and for others –
Javier (30 years old) and Gabriel (30 years old) – it was a
matter that had started to become important because they
had already achieved previous goals. This is how Javier
replied when we said that we were going to talk about
sexual relationships:
(. . .) as I have to focus solely on my studies and then the
other one (he refers here to a civil service entrance
examination) well the truth is that. . . I have never had a
relationship in a couple.(30 years old)
Sexual relationships and living as a couple are the
rewards for other accomplishments such as having studied,
getting a ‘steady’ job and being independent. Life can be
seen as going down a path that has been designed by others,
in which you have to pass different challenges or tests that
finally give you the opportunity to live alone, in a couple or
to have a family, as Asier says:
The way things are at the moment, with the crisis, well
it is difficult, but the important thing is to get a good
grounding and once you have, you need to find a job,
you have to find a way to make a living.(18 years old)
However, once some goals have been accomplished,
others appear to limit the means to living as a couple.
Intellectually disabled people ‘hit a wall’ of endless diffi-
culties that are hard to overcome. These are demands that
are rarely considered by nondisabled people, and they force
us to ask a number of ethical questions. These are: ‘What are
we doing to the lives of many people?’, ‘What type of
society are we building in which some people spend their
lives being forced to be part of an unattainable standard?’.
The two youngest people refer to some of the relation-
ships to tell us that they are in no hurry and that although
they are alone now this does not bother them. However, for
some of the men who have not had sexual relations or just
very occasional ones, the subject is core to their interests and
60 S. Rojas et al.
of great priority to them. For Ismael, it is the most important
aspect in his life project, ‘(. . .) because I want (to have a
partner), and I see that in my family they are married and
have children and all that. . . well it makes me cry, but my
great hope is to have a house, a partner and to have a
daughter’ (21 years old).
The role of families and professionals
Families are for some the greatest support and for others,
the greatest barrier. Zelatan (18 years old) states that his
mother always tells him that he should not worry about his
relationship with girls (‘you can achieve what you want. If
you look, you will find it. Never wait, you’ll find what you
are after’), and he admits that he has never had to look
because he is good-looking. However, and as we have
mentioned previously, for many others, the topic is not a
priority until they raise the subject with their families or
legal guardians. The subject becomes especially complicated
for some women, even when they have been in a long-term
relationship for some time:
Luna My father doesn’t think that in the future I will be
ready to live with a partner, I don’t know, he sees
it as being difficult for me.
Susana Why?
Luna That is what I ask myself all the time. Well
because he is here, he thinks that perhaps I am not
capable of living with my partner (. . .) In other
words, he is really on top of me. Ok! He is my
legal guardian, my father, I love him a lot but I
don’t know why he doesn’t allow me to take that
step. I have told him many times that I am
37 years old.
Some studies point out that delaying or putting off
decisions in this area may be related to the fear of sexual
behaviour appearing (Tissot 2009) or the desire to avoid
possible arguments that may awaken a greater interest on
the part of the disabled person (Nelson 1995; quoted in
Shandra & Chiwdhury 2012). Other authors refer to the fear
of parents when talking to professionals about the sexuality
of their children. Families are worried about the behaviour
of their children, which may be judged as being deviant, or
they worry that the sexuality of their children may be
pathological (Goodley & Lawthom 2011). In any case, and as
some have pointed out, once the subject is broached, the
answers are rather worrying for many people, as they do
not receive the responses they had hoped for. Oriol
(39 years old) explains that some people he knows ‘don’t
have a partner because their parents don’t let them, and
they give them rules so they can’t be with a partner’. Joan
(29 years old) states that occasionally he has talked to a
friend about the subject but not with parents as ‘they don’t
ª 2014 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 44, 56–62
like to talk about these things’. M
onica, for her part, has
looked for alternatives to the ‘imposition’ that she cannot
have a boyfriend. She has created an imaginary profile on
Facebook in which she appears as being married with two
children.
In addition, the disabled people interviewed encounter
other social and professional barriers: the normative
approach, the lack of information and training, and control
by professionals. As we have pointed out, the hegemonic
approach (heterosexual, independent, private and ideally
reproductive) is painful for many people and conditions the
kinds of relationships that they feel they can establish.
Gabriel (30 years old) states that the way some people look
at them is offensive, ‘because sometimes I go down the
street and I get the impression that people are looking at me
as if I am strange and I don’t consider myself as being
strange’. As far as Mia (37 years old) is concerned, she states
that for disabled people it is more difficult to establish and
maintain certain kinds of relationships with others because
they must be more careful, especially with nondisabled
people (‘we ourselves don’t have anything to do with them
so that they don’t hurt us’). Other stories illustrate the sense
of social rejection towards any kind of sexual relationship
between intellectually disabled people and a nondisabled
person:
You can tell that the girl has told her parents and they
have said to her: Can’t you see that he is disabled! And,
what may happen when you are older is that you have
to look after him or when you have kids they could turn
out dumb. Naturally, that made me sick!(Zelatan
18 years old)
Limited training and the kind of information received on
sexual relationships are a barrier for people with intellectual
disability (Fitzgerald & Withers 2013). Everybody without
exception describes that at a particular moment they have
attended a talk in school or at the training centre about
sexuality. The subjects tackled were always the same: the
reproductive organs, sexually transmitted diseases and
contraception. The participants valued this basic information
positively. However, while for some, it was sufficient, others
felt it necessary to examine other areas. Those who said it was
sufficient said that when they need further information then
they can go to the youth information centre or speak about
the matter at home. The latter group would like other
knowledge, attitudes and skills to be tackled:
Susana Were there things you missed out on?
Tesa Yes
Susana What exactly do you miss? What would you like
to talk about with people?
Tesa Well, when you know you truly like someone,
I don’t know, for example, how to carry out a

relationship, I mean as I have never tried it I don’t
know how to go about it.
Susana But don’t you normally talk about this?
Tesa No (30 years old)
The participants also consider other barriers, on this
occasion, related to the professionals who work with them
and the control they exert over them. Family protection is
accompanied by other rules that control the running of
services used by people. As Garbutt (2010) stated, lack of
privacy appeared as an important issue for some people.
Luna explained that her partner was forbidden from going
to her house and that breaking this rule would mean her
losing her right to live in a group home and having to go
back to the residence. She feels that she is unable to enjoy
her relationships as she pleases.
Susana So, when you want to be alone. . .
Luna We can’t.
Susana But, you have told the social worker that you are
having sexual relations?
Luna They ask me why I take pills, I take these really
small pills.
Susana Ok! So you are taking contraceptive pills and
people imagine that you are having sex.
Luna Yes, yes, in fact one day I came downstairs with. . .
I mean, when I was at the residence, I was already
living in the house, I came downstairs all red in
the face and they said to me. . . Hey Luna, what
have you been up to?’ and I said ‘Nothing’ and
the monitor said ‘Nothing? Well, have a look at
your face, sweetheart’.
Susana How do you manage?
Luna As best as we can. (37 years old)
Shakespeare (2000) argued that the separation between
what is private and public was key to understand the
abandonment of sexuality and identity within disability
policies. Fourteen years later, some people with intellectual
disability see this as if part of their lives has been
amputated.
There are situations under social control that are less
explicit, even hidden, but no less painful or with worse
consequences. Thus, Oriol expresses his reluctance to talk to
his partner about the idea of forming a family. He would
like to have children, but he does not know whether his
partner was sterilised, and he is worried about how to
broach the subject:
Nacho Have you talked about having a family?
Oriol Kind of.
ª 2014 John Wiley & Sons Ltd, British Journal of Learning Disabilities, 44, 56–62
Sexual relations in intellectually disabled people 61
Nacho What do you mean by kind of?
Oriol Kind of. . . because she, I told her that we can
adopt if she. . . I don’t know if she has had an
operation or not . . . Do you know what I mean?
(39 years old)
For Mia, there are clear consequences of the control that
professionals exert over her. Given that she had to ask for
permission to participate in this research, she knows that the
barriers would be greater if we were dealing with a matter
of such importance as going to live as a couple:
Susana (. . .) if you could choose between living like you
live now and living perhaps with another person,
with your partner, with. . .
Mia Listen, I would like to, but with my disability.
Rosa lives alone. Rosa can do it; she is not under a
legal guardian, which is what I am talking about.
(. . .) Like now, I have to sign, you know, I have to
sign a paper saying that I have come here to tell
you everything (. . .) and it’s only a simple
interview, imagine!(37 years old)
Conclusion
Changes are necessary in current culture, policies and
practices related to disability and sexuality. Some people’s
accounts show that the obstacles go beyond the power or
not to have a private space. They appear to be related to the
normative view that makes a person with disability doubt
themselves and their ability to feel, share, desire or love.
It is essential to visualise the demands of intellectually
disabled people and look for spaces where they can share
their needs and projects with the people they live with.
Sexual relationships, living as a couple or having a family
must not be considered as being just another mirage of
inclusion (Welsby & Horsfall 2011).
Many intellectually disabled people seem to be in a state
of constant preparation in which they suffer the postpone-
ment or suppression of rights such as the possibility to live
on their own, to start and maintain sexual relationships, or
to have children. As Brown (1994) points out, they are given
support to live alone or even in small groups, but they are
rarely allowed to live as a couple. This situation is more
acute in the case of women for whom it is still much harder
to broach certain subjects than for men with intellectual
disability. Being aware of the work that some associations
for people with disability and self-governing groups have
carried out (e.g. Changepeople.org) and sharing with them
the difficulties that people with intellectual disability and
those that support them frequently encounter is one way of
breaking away from outdated misconceptions about sexu-
ality and the emotions of people with disability, a resource
which could be used to establish new partnerships.
62 S. Rojas et al.
We believe that future work in this area should increase
the sample of the study to include intellectually disabled
people in different personal and social circumstances. It
means that we should also include narratives from intellec-
tually disabled mothers and fathers. This would help to
highlight some of their achievements as well as their
experiences of resistance. Besides, we should pay heed to
look into the specific demands and obstacles that young
people may face in different areas of their lives.
Lastly, new lines of research could be defined to explore
other issues important to intellectually disabled people.
Some of them have been briefly outlined in this research,
that is: studying the importance of the body in the
construction of personal identity, the role of the media in
the definition of the other as an ‘desired subject’ or the
importance that social networks play in personal relation-
ships.
Acknowledgements
Authors would like to express their very great appreciation
to the participants during the planning and development of
this research work.
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