Intellectual Disability and the Right to a Sexual Life

A Continuation of the Autonomy/Paternalism Debate

Simon Foley

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351810562
• Edition: 1
• Topic: Sozialwissenschaften
• Subtopic: Behinderungen in der Soziologie

One of the perennial political/philosophical questions concerns whether it is ever justifiable for a third party to paternalistically restrict an adult's freedom to ensure their own, or society's, best interests are protected. Wherever one stands on this debate it remains the case that, unlike their non-impaired contemporaries, many intellectually disabled adults are subjected to a paternalistic regime of care. This is particularly the case regarding members of this population exercising more control of their sexuality.

Utilizing rare empirical data, Foucault's theory of power and Kristeva's concept of abjection, this work shows that many non-disabled people – including family members – hold ambivalent attitudes towards people with visible disabilities expressing their sexuality. Through a careful examination of the autonomy/paternalism debate this is the first book to provide an original, provocative and philosophically compelling analysis to argue that where necessary, facilitated sex with prostitutes should be included as part of a new regime of care to ensure that sexual needs are met.

Intellectual Disability and the Right to a Sexual Life is essential reading for scholars, students and policy-makers with an interest in philosophy, sociology, political theory, social work, disability studies and sex studies. It will also be of interest to anybody who is a parent or a sibling of an adult with an intellectual disability and those with an interest in human rights and disability more generally.

1 The who, the what and the why

Research methodology

I had several objectives behind the research I embarked on for this book. Firstly, and most importantly, it gives voice, via the use of semi-structured interviews and the focus group method, to members of two populations who remain woefully underrepresented in the ‘relevant literature’, namely, mothers of adults with Down syndrome living in the parental home and their respective sons and daughters. To this end, it

1 Garners insights into the mind-set of the mothers I spoke to regarding whether their behaviour facilitates or presents obstacles to their intellectually disabled offspring entering a sexual relationship.

2 It elicits their views regarding whether they would consider availing of the facilitated sex mechanism for their intellectually disabled sons and daughters. Facilitated sex in this context refers to paying a third party (prostitutes/sex workers) to engage in sexual activities with their sons and daughters.

3 It establishes whether the sample of adults with Down syndrome I spoke to believe they are subjected to a paternalistic regime of care that limits their freedom to do what they want when they want.

4 It establishes whether they are, have been, or aspire to be in a sexual relationship.

Secondly, because this book is an exercise in applied critical analysis, the data findings will be used to explore the explanatory reach of the conceptual frameworks—the Foucauldian and the psychoanalytical—being utilised to offer a sociological and philosophical reading as to why the respondent’s replies take the form it does. Finally, this data will also be used as important premises to ground my argument that facilitated sex represents a rational secular liberal solution to the problems expressed by both sets of respondents regarding the difficulties that prevent many intellectually disabled adults from having sex.

The research populations

The research participants, referred to by pseudonyms, consist of two overlapping populations. These are made up of ten adults with Down syndrome living in the parental home, and their mothers. The average age of the adults with Down syndrome is thirty, whereas the ages of the mothers fall into the 55–65 age range. The mothers are self-selected as each replied to a leaflet I designed and only made available at a public meeting in Dublin convened to discuss the nature of the sex education classes provided by the major Irish disability services.

Due to the nature of this recruitment process, the fact that all the parents are mothers can be explained by reference to practical considerations. For example, some fathers, and indeed father and mother couples, did approach me expressing an interest in participating in the study. However, because of scheduling issues, I decided that such involvement was simply not feasible. This pragmatic decision not to include fathers in this study was also bolstered by prior research that suggests that Irish mothers play an important role in the socialisation of the next generation, especially regarding the emotional/affective domain (Inglis, 1997).

In socio-economic terms, the mothers and their families can be considered middle class—this was also the self-description they offered when asked—with all the mothers (in addition to their husbands) working in a professional capacity, or having worked in a professional capacity and now being retired. Regarding those mothers who are still in full-time employment, Sofia and Angela are both secondary school teachers, Claire is a medical doctor, Aileen is a psychiatrist employed by one of Ireland’s biggest disability service providers, and both Mary and Katy work as lecturers in academia. Meanwhile, the other four mothers have all retired from jobs in the Irish civil service (Jennifer and Susan), accountancy (Eimer), and the advertising sector (Rebecca).

In addition to this shared socio-economic status, another common feature that unites all the mothers is that they are involved in campaigning for the rights of people with Down syndrome—and have been since their sons and daughters were very young. This phenomenon of political activism on the part of the mothers is one which reflects a common theme in the literature on mothering, care, and disability. Thus, although instances of mothers acting as advocates for their children is not an unusual one, regarding mothers of disabled children, research suggests that this role is typically more intensive, longer lasting, and different in kind from the form such care takes when the relationship concerns mothers and their non-disabled children (Ryan and Runswick‐Cole, 2008). The nature of such sustained engagement with challenging the status quo can be explained by reference to several factors that are unique to parenting a disabled child, particularly one with an intellectual impairment. These include the nature of the impairment, society’s response to the impairment, and the role played by the network of health and medical professionals who actively intervene in the lives of people with disability (Cuskelly et al., 2006). Consequently, as with the mothers I spoke to, mothers of disabled children often “become involved in interactions with other mothers of disabled children and this frequently happens through ‘self-help’ groups and support networks” (Ryan and Runswick-Cole, 2009:45). Such activism can be subsumed under what’s known as the ‘crusadership’ model of parenting—a typology that overlaps closely with the normative agenda propagated by normalisation/Social Role Valorisation (Darling, 1979). The philosophies propagated by these frameworks will be fully explained in the following chapter.

In relation to the adults with Down syndrome I spoke to, all of them are working part-time in the service sector (for example, working in supported employment at relatively menial jobs in shops or cafes). When not at work, their time is either spent at home (mainly watching TV) or out socialising. Such socialising is typically spent in the company of family members or other intellectually disabled adults. When with the latter, the social interaction that ensues—which usually takes the form of bowling or a trip to the cinema—occurs in a supervised setting under the aegis of the disability service provider they are affiliated with.

My use of semi-structured interview was informed by Kvale’s contention that: “if you want to know how people understand their world and their life, why not talk with them”? (1996:1). According to Flick (1998), such interviews are more flexible than alternative approaches in that they allow the researcher the freedom to react and to adapt the interview accordingly. For example, the use of semi-structured interviews allows participants to deviate from the script, so to speak, to follow up on an unexpected remark, to pursue a line of reasoning that emerges organically from the interaction between interviewer and interviewee—one which may otherwise have remained unexpressed and or unthought-of. These characteristics are clearly of crucial importance when talking to respondents about their attitudes towards their own sexuality or that of the sexuality of their adult children with Down syndrome. When such sensitive subjects are under investigation, the need to seek clarity on a given answer, to ask ‘what do you mean’ or ‘why do you think that way’ can essentially be predicted before embarking on the fieldwork in question.

Another advantage of using this research method is it allows the “respondents to answer in their own terms” (Bryman, 2008:145). Given both the subject matter and the nature of the populations taking part, this benefit is an important one to note. For example, while alternative approaches, such as the use of questionnaires, can help alleviate the embarrassment some people may experience while talking about issues of sexuality, they run the risk, especially when dealing with people with intellectual disabilities, of ‘language working through them’. That is, respondents may give answers they do not truly understand to questions they do not fully comprehend. While in no way fool-proof—no research method is—semi-structured interviews do allow the researcher to interact with his interviewee on a more ‘human’, more natural level in the sense that the face-to-face conversation is the method of choice that adults with Down syndrome, in common with most of us, employ when conversing with family and friends.

This emphasis on treating adults with Down syndrome in as normal a fashion as possible also corresponds to my own ethical sensibilities regarding the nature of the research design one should employ when doing research seeking the views of intellectually disabled people. This is the belief that members of this population retain the right to bear witness to their own lives via the medium of a one-on-one conversation as opposed to being subject to the ever-increasing panoply of so called ‘innovative research methods’ that utilises picture and other visual aids to facilitate ‘better communication’ (Booth and Booth, 2003). As an addendum to this principled position, the reader might be interested to know that in my capacity as a professional academic, I have seen such innovative research methods in action, and whatever merits they may have for people with severe communication problems, for people with mild to moderate to levels of Down syndrome, they are from my experience typically a source of embarrassment for the people with Down syndrome who are subjected to their use.

Staying with the pragmatics of employing semi-structured interviews, another benefit of this approach is that it lends itself to both interviewer and interviewee building a relationship of mutual trust between the two of them which in turn facilitates “the free flow of information” (Spradley, 1979:78). Such rapport, built upon how the researcher and respondent initially connect with each other on their initial pre-interview meeting, can be facilitated by the researcher explaining his motivation for conducting the research in question and a willingness to act as an engaged interlocutor—someone who is open to answering questions from the respondents themselves. As already stated, this was the stance I adopted. In addition, and as I alluded to earlier, because I have a sibling with Down syndrome, such an affinity seemed to be present from the outset. Apropos of this claim, it should be noted that many of the mothers informed me in our pre-interview conversations that had I not had a sibling with Down syndrome, they would not have agreed to participate in the research to begin with. Hence, I believe that this sense of a shared connection limited the levels of suspicion as to why someone would want to talk to the interviewees about the sexuality of their sons and daughters with Down syndrome in the first place. In addition, from my reading of how the respondents interacted with me, and based on the quality of the data collected, this belief that everyone involved had something in common went some way in transforming me from the subject position of ‘official inquisitor’ to that of sympathetic listener.

The semi-structured interview has been used with much success in previous interviews with people with intellectual disabilities (Griffin and Balandin, 2004) and its advantages have been discussed in much depth by McCarthy (1999). This method has moreover been chosen by many people with intellectual disabilities as their preferred method when taking part in research projects. For example, during a series of interviews with people with a range of intellectual disabilities, Kitchin states:

there was strong support for qualitative methods of research, particularly those of interviews because they allow respondents to express and contextualise their true feelings, rather than having them pigeonholed into boxes with no or little explanation for contextual explanation.

(Kitchin, 2000:43)

A final benefit to note in using semi-structured interviews is the fact that they help to equalise the otherwise asymmetrical relationship that can sometimes exist between researcher and respondent. The semi-structured interview retains this facility because it allows respondents more room to direct discussion in that they retain the power to regulate the accounts they decide to proffer (Bryman, 2008).

My original intention was to interview each member of both populations twice. The rationale behind doing two interviews with each respondent was based on the belief that the relevant issues that arose in the first interview could then be addressed in more detail in the succeeding one. In relation to the population of adults with Down syndrome, the reasons for not carrying out a second interview, or indeed a focus group, were due to a combination of factors. Firstly, while this population of research respondents were willing to participate in another interview, they essentially said they would prefer to change the subject if it took place. Secondly, it was decided that the data collected during the first interviews was of sufficient quality to address both the research questions and for an applied theoretical analysis to be carried out. Finally, and as an extension of the last point, because of the nature of the questioning style I deliberately adopted, it was decided that neither a further interview nor a focus group made up of the adults with Down syndrome would yield relevant data over and above that already collected. My decision in this respect was based on the fact that while the sexuality of adults with Down syndrome is one of the key issues under investigation, I was adamant that in order to avoid any undue embarrassment, awkwardness, etc. that I would not ask sexually explicit questions of this population. Rather, the emphasis was on conducting those interviews in as sensitive a manner as possible to limit the possibility of any of the respondents getting in any way upset. Hence, questions took the form of ‘do you have a boyfriend/girlfriend?’ and ‘would you like a boyfriend/girlfriend?’ and so on rather than ‘have you ever had sex?’ and/or ‘would you like to have sex?’ and so on.

Interviewing people with intellectual disability

Because people with Down syndrome have a diminished capacity regarding comprehension and verbal expression (Cunningham, 2006) the task of interviewing members of this population raises many methodological issues over and above those that arise when embarking on semi-structured interviews with a non-intellectually disabled group. Thus, in line with Porter and Lacey’s recommendations (2003), the specific simplified questioning style applied the following principles:

1 Use of short words and sentences

2 Use of single-clause sentences

3 Use of active verbs: that is, “Did you…?”

4 When possible, use of the present tense

5 Avoidance of jargon and abstract concepts

6 Avoidance of leading questions, keeping things as neutral as possible: for example, ‘How does that feel?’, ‘Can you explain that?’, or ‘What do you mean? Can you say more about this?’

However, Porter and Lacey (2003) go on add that semi-structured interviews are by their very nature unpredictable and all eventualities cannot always be prepared for. For example, neither they nor any of the other relevant authors I reviewed could agree on how much time the interviewer should give the interviewee to respond to a given question before the former should rephrase the question or move on to another. McCarthy, meanwhile, claims that interviewing somebody with an intellectual disability “is not a fundamentally different process from interviewing anybody else” (1999:24). However, she qualifies this statement by going on to claim that while the literature around the mechanics of interviewing people with intellectual disabilities is small, there is widespread agreement that how questions are worded is of greater importance then when interviewing people without an intellectual disability. By this she means, that, factoring the impairment, it is generally the case that the likelihood of eliciting productive answers can be influenced by the kind of language used to formulate the questions and the order and frequency in which they are then put.

The focus group method

According to Morgan and Spanish, the purpose of using a focus group is to “bring together several participants to discuss a topic of mutual interest to themselves and the researcher” (1984:253). The rationale behind the use of a focus group for this book was a post facto one. As already stated, the original intention was to rely on the use of the semi-structured interviews to collect the required data. However, on reflection, I concluded that a few of the interviews with the sample of mothers were done too ‘sensitively’ in that their attitudes towards the sexuality of their adult children with Down syndrome were not pursued vigorously enough.

In addition, midway through the interviewing process, I came across a newspaper article featuring a story about a British mother of an adult son with Down syndrome who declared her intention to employ the services of a prostitute to ensure that her son’s sexual needs were met. While the issue of facilitated sex has lost some of its taboo status concerning physically disabled adults, it retains its status as a Pandora’s box where the sexuality of intellectually disabled people is concerned—see Chapter 2 for more detail. For this reason, I decided that the use of this newspaper article could act as a perfect jumping-off point to structure a more explicit group discussion dealing specifically with the mother’s views on whether they would consider utilising the facilitated sex mechanism for their sons and daughters.

The initial decision to privilege semi-structured interviews over the use of the focus group was based on the contention that that the latter had a fatal flaw. Namely, that “if the subject matter is sensitive and the participants are expected to talk about intimate aspects of their experience, semi-structured interviews may be more appropriate” (Willig, 2008:31). I was also concerned that a group setting would inhibit some of the mothers expressing their views in a way they would if the scenario was a one-to-one conversation/interview. However, on reflection, I concluded that the reason I had put myself in the difficult situation in relation to the content of some of the interviews was because I found asking such questions on a one-to-one level a little embarrassing. Based on this epiphany, I made the decision to employ the focus group approach, rather than to complete a second tranche of interviews. In relation to my embarrassment, although it may sound slightly paradoxical, the rationale behind using a focus group was based on the belief that with a larger number of people present, I could pretend the focus group was a University tutorial and behave in kind: that is, assume a more confident, more detached persona.

One of the advantages—especially apposite given the issues under investigation—is that the focus group, in bringing together a group of people facing the same dilemmas, “can help in the discussion of taboo subjects since less inhibited members may break the ice or provide mutual support” (Robson, 2006:285). A related reason behind me using this method was that unlike the semi-structured interview, where the interviewer is ever mindful of the distinction between challenging and probing an interviewee’s answer to a given question, the focus group has the potential to transform itself into a quasi-Socratic debate where the participants actively challenge their fellow respondents’ views (Robson, 2006). This process of presenting one’s own and refuting the arguments of others means “that the researcher may stand a chance of ending up with more realistic accounts of what people think, because they are forced to think about and possibly revise their views” (Bryman, 2008:348). As events unfolded, the decision to use the focus group was thoroughly vindicated. It proved to be lively and productive, with none of the respondents holding back on their opinions, while at the same time being mindful not to monopolise the conversation.

Ethical considerations

The princi...