Persons with profound intellectual disability and their right to sex

Abstract

This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.

Keywords:

• profound intellectual disability
• sex
• sexuality
• ethics
• intimacy

Points of interest

• This article analyses the sexuality and sexual rights of persons with profound intellectual and multiple disabilities.

• The views presented in this article are based on information that was acquired by spending time with these people, seeing how they were treated, and speaking to their carers.

• The article discusses the significance of one’s ability to understand and express one’s own interests as regards sexual rights. It will also discuss whether facilitation of sex is ethically justified for this group of people.

• It is argued that sexuality should be included as an important concern in the care of persons with profound intellectual disability. This should be seen to be as essential as any other matter important for human well-being (such as nutrition and healthcare).

• Finally, the article offers considerations for research that engages with the sexual needs and experiences of persons with profound intellectual disability.

Introduction

This article explores the difficult issue of sexuality of people with profound intellectual and multiple disabilities (PIMD). The need for writing this article arose from an embarrassing realization of ignorance and negligence regarding the possibility of erotic life for this group of people. This realization took place as part of the ethnographic study ‘Profound Intellectual and Multiple Disabilities and a Good Life’ about persons with PIMD, and what makes a good life for them. One of the main intellectual and ethical commitments of the project from the very beginning was to represent the lives of the research participants in their full complexity. It was only after the fieldwork that I realized the ‘full complexity’ of their lives had not included sexuality – it was not in the centre, not even on the fringes, of the initial research agenda. This article is part of the process of understanding and coming to terms with a subconscious exclusion of a crucial element of humanity from research that had the intention of providing a thorough picture of the lived experiences of PIMD.

My failure to consider the possibility of sex in the lives of these people is by no means a rare fault in disability studies, which as a research field has focused on examining various social and structural practices and mechanisms that exclude disabled people from mainstream society. Due to this social bias, individual experiences and properties, such as impairments and their role in people’s disablement, have been underplayed (Vehmas and Watson 2014). Profound intellectual disabilities have been at the margins of, or in fact virtually absent from, the disability studies scholarship probably because they involve the kinds of serious, all-inclusive impairment effects that cannot be explained merely by social arrangements (Boxall and Ralph 2011; Chappell 1998; Mietola, Miettinen, and Vehmas 2017). Since PIMD is a phenomenon virtually absent from disability studies, it is unsurprising that the sexual experiences of people with these conditions have not been given consideration.

Still, literature on sexuality with reference to ‘milder’ forms of intellectual disability does exist in relation to issues such as abuse, autonomy, consent, family planning, gender expectations, identity, inappropriate behaviour, parenthood, family and staff member views, sterilization, and vulnerability (for example, Abbott 2015; Banks 2016; Booth and Booth 2000; Desjardins 2012; Evans et al. 2009; Hamilton 2010; Hollomotz 2010; Lyden 2007; McCarthy 2014; Turner and Crane 2016; Wilson et al. 2011). The absence of people with profound intellectual disability in this research literature is striking but also unsurprising due to some serious ethical and methodological concerns. These include, for example, uncertainties about the criteria of consent and abuse as well as how to make reliable judgments about the ability to consent (Brown and Turk 1992). Apart from independent private masturbation, the almost inevitable notion regarding sex and PIMD appears to be something of an absolute no-no. At least this is the mentality that I caught myself to have subconsciously.

When I realized my unreflected prejudice of sex for people with profound intellectual disability as unacceptable, I knew it was wrong and needed to be analysed. So, what I wish to do in this article is to confront this prejudice in the light of the ethnographic observation and interview data of our research project. I will do this by using my own experiences and prejudices as a starting point and analysing them through the project’s empirical data, as well as with some reflections on the ethically justified ways to enhance sexual pleasure for this group of people. It would be far too bold to claim my method to represent autoethnography (Rogers 2009), but the personal does play a significant role in the general discussion of this article. In my view, exposing the personal in this context is only appropriate as I am in the position to produce knowledge about persons who cannot do it themselves. This kind of power imbalance needs to be acknowledged as non-disabled academics have a special responsibility ‘to pay particular attention to issues of their own identity, their own privilege as nondisabled people, and the relationship of these factors to their scholarship’ (Linton 1998, 152–153).

I will begin by introducing briefly our research project and the motivation for this article. Then I will discuss some ethical issues related to sex such as the significance of cognitive capacities as regards sexual rights, the difficulties related to the interpretation of communication, and whether the UN Convention on the Rights of Persons with Disabilities provides a way to avoid ethical and legal pitfalls of facilitating sex to persons with profound intellectual disability. After that, I will discuss briefly the ethical significance of the definition of sex. Finally, I will offer some reflections on how sexuality and intimacy should be included as part of the care of these people, and how we should consider more carefully in research ways to better understand their sexuality.

Researching profound intellectual disability

PIMD is not a clear diagnostic category with consistent terminology. It is usually agreed, however, that it involves significant cognitive difficulties, with little or no apparent understanding of verbal language, little or no ability to care for oneself, and usually associated medical conditions (Pawlyn and Carnaby 2009, 6–7; WHO 1992, 230). This definition captures only partially the complex nature of PIMD and was one criterion used when participants in our study were sought. A definition and a criterion of a more metaphorical nature were utilized as well; we were looking for people who remain mysteries to people close to them in much more profound ways than usually is the case with people close to us. This conceptualization arose from my previous discussions with some parents who described their children in those terms (some care workers in our data also referred to our research participants as ‘mysteries’). They had learnt to understand their children and their communication but they were still puzzled on a regular basis regarding what their children wanted to communicate in a given situation, what they felt or wanted.

I base my analysis on data that were produced through ethnographic observation and interviews in 2015–2016. The data were collected by two researchers (Dr Reetta Mietola and Dr Sonja Miettinen). Personally, I visited the field but I did not conduct the ethnographic fieldwork. The fieldwork was carried out in three phases, in which altogether six research participants with profound intellectual disability were followed, one at a time, individually by one researcher. The fieldwork took place in five group homes, two day activity centres, and one vocational school. The participants were also followed in rehabilitation and leisure activities on a regular basis. Each participant was observed for a period of three to four months for two days a week, four to eight hours a day during different times of the day (approximately 100 hours of observation per participant). In addition, altogether 19 interviews were carried out with family members and caring staff of the participants. For the analysis in this article, episodes representing physical affection that were not part of nursing or care were separated from the ethnographic data. My references to the data are based on these episodes as well as my discussions with Reetta and Sonja.

The ethnographic fieldwork consisted of both non-participatory and participatory observation, depending on the wishes (as the researcher interpreted them) of the research participants. The relationship and modes of interaction with each participant thus varied; sometimes the researcher mainly observed the ongoing happenings and interacted verbally with the participant, sometimes the researcher was physically involved in the interaction (e.g. letting a research participant sit on her lap), and sometimes the researcher actively took part in the daily activities (e.g. feeding a research participant). None of our research participants is capable of using spoken language or any formal alternative communication method such as signs, symbols, or communication boards. Instead, they use gestures, facial expressions, touches, and utterances. The problem with all our research participants, however, is the sporadic nature of their communication which often makes it very difficult to know for certain what they are thinking or feeling. In order to make sense of their communication, Reetta and Sonja observed closely the interaction and communication between the care workers and research participants, alongside discussing with the staff during the fieldwork the interpretation of these communication episodes. The research team also took part in an intensive interaction methods training session prior to the fieldwork. In addition to very limited cognitive and communicative capacities, our research participants also have physical impairments that restrict their mobility. Frida and Hugo, for example, are entirely dependent on other people regarding any activity; they are not capable of wheeling themselves, and their hand movements are very limited which means that they cannot feed themselves, let alone masturbate independently should they wish to do so.

Several ethical notions guided our research project from the very beginning. For example, we were committed to consider the wider implications of research especially in terms of the understanding it produces about these people. This is an especially important consideration in the case of people who are so profoundly vulnerable, devalued, and marginalized. As for recruiting research participants, we combined proxy consent with a continuous process of assent; alongside a written consent from next of kin or some other representative close to the participant, the fieldwork was supervised by a constant evaluation of our participants’ well-being. Should it seem that a participant was in any way disturbed by our presence, we would have withdrawn from observing him or her. This, however, did not prove to be necessary (Mietola, Miettinen, and Vehmas 2017). This process was preceded by an ethical review of the University of Helsinki ethical review board as well as negotiations with municipal social services, local unit managers, and finally with the care workers working with our research participants.

During my previous encounters with people with profound intellectual disability I had become aware of their expressions of sexuality but I had apparently pushed that knowledge somewhere into the subconscious. This might have been due to the inappropriateness of some of these expressions (e.g. public masturbation). Sexuality in the lives of people with profound intellectual disability apparently did not appear to me as something positive, a source of pleasure and affirmation. Rather, the positive potential of sexual pleasure for them was overrun by my own anguish. The main concern was not, in fact, to protect these people from exploitation and abuse but to protect myself from the unpleasant feelings their sexual manifestations caused to me.

This research project was initially motivated by philosophical debates about the moral status of people with profound intellectual disability. In these debates, some prominent philosophers such as Jeff McMahan (2002) and Peter Singer (2010) portray such humans as psychologically comparable to pigs and dogs, and able to reach only the level of well-being of that of ‘a contended dog’ (McMahan 2002, 153). These kinds of remarks are made in philosophical literature very casually and without any use of empirical evidence. However, there are philosophers like Eva Feder Kittay (2010) who has a daughter with profound intellectual disability, and who uses her personal experience and knowledge about her daughter to refute the claims made my McMahan and others. Thus, these philosophical debates are mostly informed by personal experience, by anecdotal evidence, or by mere gut feelings about intellectual disability. When I looked for assistance from disability studies literature, I realized that there is hardly any empirical research on adults with PIMD. As a result, I decided to form a research project that would examine, in the light of empirical data, what makes a good life for this group of people. The only way to get as close as possible to the lived experiences of these persons would be to observe them in various contexts, talk to their families and carers, and in this way construct a detailed account of their everyday lives.

Considering that the founding ethical conviction of this project was the recognition of the inalienable worth of persons with profound intellectual disability as fellow humans (Vehmas and Curtis 2017), as well as an ambition to understand what makes a good life for them, it is necessary to address the issue of sexuality – better late than never. An account that dismissed a basic entitlement such as sexuality would be defective as it would fail to do justice to their personhood, and their equal value as humans with the possibility to explore and express their sexuality.

Finally, it needs to be remembered that intimacy and physical affection are continuously present in interactions with people like our research participants because they need constant care and support in all everyday routines. In other words, they are constantly touched by other people whether it is about toileting, washing, being dressed, or being moved from place to another (only one of our participants was capable of walking independently). However, whilst their everyday lives are filled with intimacy in terms of nursing, the researchers witnessed other moments of physical closeness or affection only rarely. This may be related to the institutional culture of some group homes and day centres where the activities did not seem to be directed by any well-thought plan. Consequently, our research participants were dressed, washed, and fed appropriately, but often that was all. They spent a lot of time alone with very few opportunities to express or receive physical affection or to interact with other people.

Interpreting communication and consent

This article has been written from a secular liberal viewpoint. In terms of sex, this position implies that virtually anything done voluntarily between two or more people is morally permissible (this raises the question of extreme sex like sadomasochism SM, but that is beyond the scope of this article). The possibility to express one’s sexuality and form erotic relations with other people is seen as a fundamental entitlement to all citizens and often crucial to their well-being. Concerns about the possible naturalness or perversity of any kind of sexual activity are insignificant in this view; what matters morally is whether something that took place was in line with the preferences of those involved, and whether it brought about pleasure or suffering to them (Primoratz 1999; Soble 2002). This kind of general live and let live maxim as an ethical guideline undoubtedly leaves room for interpretation in individual situations. Especially when it comes to people whose capacity for autonomous choice is questionable, things are far from simple. Even assuming that anything done as a result of free and informed consent is permissible, various difficult questions remain. For example, how explicit and specific must consent be? Meaning, when can we infer in case of non-verbal persons with limited or no mobility that they have consented to sex, and must we know in advance exactly what kind of acts, caresses, or positions they have consented to?

All our research participants seemed enigmatic to other people. Anna, a non-verbal woman in her 20 s with very little movement, but who had recently learnt to wheel short distances by herself, was the most challenging of the research participants when it came to understanding her feelings and communication. A lot of times, she seemed to prefer to sit on her own in her wheelchair. Especially in the noisy and often chaotic day activity centre, she seemed to get distressed in the company of others which she signalled by wailing and crying. Her frequent habit of uttering wailing sounds puzzled the care workers; they could not always tell whether she was crying, perhaps due to some pain, or whether that was actually her way of taking part in the discussion. Her communication was a matter of constant and somewhat confused interpretation where the staff tried to judge whether she was reacting to the happenings around her or to some inner state. But even with Anna, there are situations when it is very clear what she wants. For example, when she wants to eat she simply opens her mouth for food, and when she wants to drink she turns her head towards a glass. On the grounds of these kinds of gestures and signs, the care workers reported knowing with certainty when she wanted, for example, to eat and drink. But due to her limited means of communication, they were less certain about other things such as to what extent she wanted physical comfort and affection. Nevertheless, they were inclined to think that Anna likes strokes and hugs.

Ella is the most mobile person in our study but she is usually made to wear the kinds of trousers and underwear that make it practically impossible for her to touch her genitalia. Reetta, who was following Ella for four months, told me that she had taken Ella’s hands away from her private parts once or twice when Ella was sitting on her lap. When I asked why she did that, she answered: ‘because Ella’s hands could’ve been on my face the next minute’. There was also another hygienic concern; while living in an institution years ago, Ella had the occasional habit of smearing with her faeces. One possible way to explain this problematic behaviour would be that of seeing it as a kind of substitute activity where Ella was expressing her sexuality; being cleaned afterwards probably was the only time her privates would get touched (Cambridge and Carnaby 2000; Kulick and Rydström 2015, 123). However, her behaviour had changed considerably for better after moving to a group home and, in any case, we did not ask whether the reason for Ella’s dress code was merely hygienic.

Ella’s carers thought that the change in her living conditions had, without doubt, contributed positively to her behaviour and well-being in general. But certainty and puzzlement blended continuously in staff’s interpretations of her actions. They were convinced that Ella clearly shows, for example, whom she likes through physical gestures (like patting or sitting on a person’s lap). But whilst being certain about the meaning of some facial expressions, utterances, and movements in some contexts, the professionals were often bewildered by Ella and what to make out of what she was trying to express, what she was feeling, or what she was thinking.

It seems that staff members’ certainty over the meaning of Anna’s and Ella’s acts and thoughts are related to two considerations. First is the self-evident nature of some acts, such as opening one’s mouth when being offered food. Second is the ethical sensitivity of the activity in question. Drawing conclusions about a person’s eating and drinking appetites is a lot less precarious than judging her sexual preferences. Interestingly, one of Ella’s carers compared her deliberation process about Ella’s wants and wishes to the relationship between mother and child: when you feel cold yourself, you tend to put more clothes on your child – the mother thus projects her own feelings onto her child. She concluded, however, that ultimately the way to learn to read Ella is through trial and error. Fair enough, but when it comes to sexuality, there should be no room for errors. Or should there?

‘Do no wrong’ equals ‘do nothing’?

The traditional and safe to way to deal with the possible erotic desires of individuals with very limited cognitive capacities, with no or very limited movement and only very limited means of communication, is to ignore them (see Kulick and Rydström 2015, 86). This kind of precautionary policy, however, conflicts with the view of sex as a right. Consider the example of Denmark analysed by Kulick and Rydström (2015). Sexuality is seen there as a positive entitlement where individuals should have the possibility to explore their own sexuality, and the professionals working with disabled people have an obligation to facilitate their access to sexual education, and should they desire it, a sexual life. In practice, this means that qualified and designated helpers (social workers with special training and competence) are obligated to ‘provide or find someone who can provide help to anyone who expresses a desire for such a help […] they help individuals have sex, but they do not have sex with them’ (Kulick and Rydström 2015, 107; original emphasis). The helper and the individual who receives the help write a written contract about the plan of action, so that both parties are in agreement of what kind of help the person receiving help wishes to have and that the helper knows what he or she is agreeing to. These kinds of plans of action are important in order to avoid abuse or exploitation. But they are also private documents which means that other members of the staff in, say, a group home only know that a particular resident receives assistance from a particular staff member, but the details of the assistance (what, when, and how) are not known by others (Kulick and Rydström 2015, 107).

These kinds of policies are progressive and worthy but they do exclude people from such help if they are not capable of communicating their sexual preferences in a reliable manner. Without reliable means of communication and mutual understanding, one cannot make an agreement. So, does this mean that it is better to do nothing? One cannot help thinking here of the case of Anna Stubblefield. She is a philosopher who was convicted of repeated sexual assault against a non-verbal man with severe intellectual disability and cerebral palsy, and was sentenced to 12 years in prison. She claimed that their sex was consensual as the man, according to Stubblefield, was capable of communication through facilitated communication. Facilitated communication or supported typing is a controversial communication method where a disabled person’s hand is held and guided by another person on a keyboard or alphabet board. Various experimental studies have shown the unreliability of the method. Despite its poor reputation, facilitated communication has persistent believers in disability studies. In this case, and somewhat unsurprisingly, only Stubblefield seemed to manage to prompt facilitated communication. Also, against previous psychological reports and his family’s testimony, Stubblefield claimed that the man was, in fact, an intellectual equal to herself (Sherry 2016).

The case of Anna Stubblefield is in many ways contentious and troubling, and as such it would seem to support a precautionary principle of refraining from any kind of facilitation of sexual pleasure to people who lack a reliable means of communication. Having said that, it would also be regrettable to submit to the kind of precautionary measures that deprive one crucial element of human well-being from persons who are unable to give informed consent in any conventional manner. One possible escape route from this ethical dead end could be an alternative, relational understanding of autonomy and legal capacity. The 2006 UN Convention on the Rights of Persons with Disabilities requires in article 12 that ‘persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’ United Nations 2006, 10. This is seen to deny any substitute decision-making procedure and to require that disabled people ‘are given access to the support they need to exercise their legal capacity in accordance with their will and preferences’ (Series 2015, 81).

Under various legislations, such as The Mental Capacity Act 2005 of England and Wales, a person is considered unable to make decisions if he or she is unable to understand, retain, or use or weight the relevant information. Legal scholars advocating the UN Convention on the Rights of Persons with Disabilities, however, argue that all human persons, regardless of their decision-making capabilities, should enjoy ‘legal capacity’ on an equal basis – that is, the right to be recognized as a person before the law, and the subsequent right to have one’s decisions legally recognized (Flynn and Arstein-Kerslake 2014, 82).

Importantly, ‘the recognition of the right cannot merely extend to the areas in which we are all comfortable, because the right to legal capacity is virtually meaningless unless it is fully recognized in all areas of an individual’s life’ (Flynn and Arstein-Kerslake 2014, 90). But how does one implement legal capacity in the case of persons like Anna and Ella introduced earlier in this article? It could mean various systems of support such as supported or facilitated decision-making. Supported decision-making takes place when one receives support from others to make a decision and communicate to others: ‘This could be through helping them to obtain and understand information relevant to the decision, talking through the pros and cons of different available options, or helping a person to communicate with others’ (Series 2015, 85). This support model might work with some persons with profound intellectual disability as they seem to understand more than is expected from them. But since their communication often lacks coherence, it is very difficult to judge with any kind of certainty what exactly they comprehend in various situations.

Another alternative would be facilitated decision-making where a third party (facilitator) makes decisions on the person’s behalf, but bases their decisions on their knowledge of a person’s narrative: ‘The facilitator’s role is to imagine what the person’s will and preferences might be and to make the decisions on this basis’ (Flynn and Arstein-Kerslake 2014, 95). Regarding persons with profound intellectual disability, this support model could perhaps imply a kind of limited and cautious facilitation of sexual pleasure. In other words, without certainty over a person’s preferences and interests, active facilitation of sex (e.g. a helper facilitates an immobile person with profound intellectual disability to masturbate) would be out of the question. However, other people may well try to find out, to the best of their ability, and keeping closely in mind this particular person’s personality and personal history, what he or she might want in terms of sex. Gradually, this kind of process could give necessary certainty over the person’s preferences so that active steps in sexual facilitation could be taken.

Along similar lines, Boni-Saenz (2015, 1236) argues for a decision-making support system that ‘does not exist to make the sexual decision as a surrogate for the person with cognitive impairments, but instead to facilitate her wishes and desires’. However, the ability to express, in a way or another, volition with respect to a sexual decision is the minimal threshold for the legal capacity for sexual consent. Without the basic level of communication of volition, one is not a legal agent, which means that in such a case the liability should flow to such an individual’s sexual partner or to institutions that have a responsibility for safeguarding her (Boni-Saenz 2015, 1235) – a consideration relevant to the Stubblefield case.

What is sex? What is fair?

There are reasons to be reasonably optimistic that the scenario outlined would be feasible. Only reasonable optimism, however, seems appropriate due to the elusiveness of the minds of people like Anna and Ella. It is important to acknowledge the many things that we do not understand about persons with profound intellectual disability and also the asymmetrical relationship between privileged and less privileged people (Young 1997). However, I am optimistic that an ethically justifiable sexual facilitation in the case of persons with profound intellectual disability who cannot masturbate themselves is possible simply because many of them do express a desire for sexual pleasure. This is most apparent with persons like Sebastian and Leo in our study. They are both adult men with very limited cognitive capacities. They are both non-verbal and have very limited mobility but are capable of masturbating, and both are provided with the privacy to do so in their group homes. It should be noted that we have no data where and how the sexuality of the women in our study manifests. This mirrors in its part the gendered nature of the issue; men tend to be seen as more sexual than women and are thus likely to be granted more opportunities to express their sexuality than women. This imbalance is represented also in the research literature on sexuality and intellectual disability where there is little research on how women with intellectual disability experience their sexual lives (McCarthy 1999, 2002, 2014).

Another reason to assume that many persons with profound intellectual disability do have erotic desires of some sort is their clearly expressed need for physical affection. Naturally, they (just like all people) are different in terms of their preferences for intimacy and affection. For people like Ella and Sebastian, physical affection is clearly important and something they actively seek. But both of them do so only in relation to some people; to ones they like or fancy, ones they have formed a relationship with, the kinds of people they seem to trust. But then persons like Anna, Frida, Hugo, and Leo are much more reserved and whilst they seem to enjoy physical affection, they do so only occasionally.

One needs to be sensitive in this context as regards what counts as sexual activity and sexual pleasure, especially for someone with profound intellectual disability. People’s sexual tastes vary greatly and it is difficult to define what in fact makes acts sexual, what kinds of acts count as sex (Halwani 2010, 123–151); for example, in Sanders and Reinisch’s (1999) well-known study, 60% of respondents did not consider fellatio as having sex and 20% did not even see penile–anal intercourse as sex. Some philosophers have argued that human sexuality is not merely a matter of pleasures of sensation but rather it is about activities that involve intentional pleasure and thoughts pertaining to it (Primoratz 1999, 22). In particular, it is about mutual recognition of arousal between persons (Nagel 1979, 39–52). These kinds of conceptions emphasizing the psychological element related to sexual pleasure may or may not be plausible, and whether they apply to people with profound intellectual disability remains an enigma. More relevant consideration in this context is the relationship between sexual activity and sexual pleasure. In some accounts, sexual acts should be understood in terms of production of sexual pleasure. This means that virtually any act is sexual if it produces sexual pleasure. But this kind of account has unfortunate implications regarding abuse because on such analysis placing the penis into the vagina would be sexual only if it produced sexual pleasure. Thus, a victim of a rape cannot claim that she was forced into a sexual activity despite the fact that intercourse was compelled on her (Soble 2002).

One could argue, however, that if there is no sexual pleasure involved in an act on either side, then it is not sexual abuse. In cases of abuse, the act must include pleasure to the abuser in order to be sexual. The rape victim can legitimately claim that she was used as a means by a person engaging in a sexual activity in virtue of deriving sexual pleasure from that activity; the victim was not participating or engaging in sexual activity because it was something that was done to her by someone who was. But this response seems inadequate. Imagine a couple that had intercourse, which ended in the other partner’s ejaculation. However, both feel that they did not, in fact, enjoy the act. Even the one who ejaculated could plausibly claim that even though he felt some physical sensations when he ejaculated, they were not pleasurable to him because of psychological reasons (e.g. the way he felt about his partner). Thus, it seems false to see sexual pleasure as something purely physical because all physical sensations are arguably interpreted sensations (at least in hindsight); we feel something, but exactly what we feel or felt is influenced by our psychological, social, and cultural consciousness.

McMahan and Singer (2017), in their commentary on Anne Stubblefield’s case, question whether the victim in this case was in fact wronged. This is because he is ‘profoundly cognitively impaired’ and was not necessarily wronged by Stubblefield simply because ‘he cannot understand the normal significance of sexual relations between persons or the meaning and significance of sexual violation’. They also argue that since the experience was apparently pleasurable for the man Stubblefield had sex with, ‘it seems that if Stubblefield wronged or harmed him, it must have been in a way that he is incapable of understanding and that affected his experience only pleasurably’ (McMahan and Singer 2017). In McMahan and Singer’s consequentialist mindset, there is no moral wrong involved in an act with individuals who cannot consent to sex unless it brings about harmful consequences to them. But conceptualizing the issue merely in terms of consequences or autonomy seems terribly one-sided in cases where the ethics of exploitation is evident. The morality of actions does not depend merely on the point of view of the one towards whom the action is performed but also on the position of the one who is performing the action, and the relationship between these two. In other words, wherever there is someone to whom an obligation is owed, there must also be someone who has an obligation (Curtis and Vehmas, 2018). So even if the man Stubblefield had sex with was not harmed in any obvious way, the interaction between them would still be morally problematic because of the unclear nature of their relationship.

Perhaps, then, it would be reasonable to conclude in this context that the relationship between sexual acts and sexual pleasure is twofold. Firstly, any act that harms no one involved but produces, or at least has the intention of producing, sexual pleasure for those involved with the act is indeed a sexual act and in itself morally good or neutral. Secondly, if the act, however, is in any way harmful in terms of a person’s integrity or well-being, and involves acts typically regarded as sexual (e.g. intercourse, fellatio, sexual touching, showing pornography), then that act is indeed sexual. Pleasure cannot be the sole criterion for sexual acts because in that case hardly any act would count as sexual abuse if it caused no particular pleasure or displeasure to the victim.

One could argue that previous speculations about the definitions of sex complicate the issue unnecessarily. Why not use a common-sense definition of sexuality as an activity that directly engages genitals, breasts, and/or anuses? That may be a reasonable response and undoubtedly practical in a policy context albeit insufficient to take into account the complexity of sexual acts and desires. But at the end of day what is crucial is to set some coherent criteria for sexual acts that would aid us to judge when an act is indeed sexual, and also when abuse is sexual.

In this context, it is crucial to return to the significance of gender. When it comes to intellectual disability and sexuality, at least in any affirmative sense, the default position seems to be male; men with intellectual disabilities are seen as agents who legitimately may seek intimacy and sexual pleasure. For women with intellectual disabilities, the reality is somewhat different; they are seen as sexually naïve, more vulnerable to sexual abuse than men and consequently in need of more protection (Young, Gore, and McCarthy 2012). This seems like a reasonable reaction to the fact that women with intellectual disabilities indeed are more likely to experience sexual abuse than men (for example, Cambridge et al. 2006; Gil-Llario et al. 2018). Especially in the case of individuals with profound intellectual disability, sensitivity to the significance of gender is undoubtedly appropriate considering the long history of sexual abuse of women with intellectual disabilities (McCarthy 2002). Perhaps men with intellectual disability in general indeed are more transparent than women regarding their sexuality (possibly because they masturbate more often than women [Kijak 2013]) and therefore perhaps enabling or facilitating their sexual desires is less precarious. However, remembering that the perpetrators of sexual abuse of women with intellectual disability are often care workers (for example, Mansell et al. 2009), there is every reason for transparency in any possible policy with an aim to enrich their sexual lives.

Bearing this in mind, there should be verifiable, cogent reasons to assume that facilitating sexual pleasure for persons with profound intellectual disability would be justifiable in terms of their preferences, well-being, and making their lives better. If a person shows no interest in expressing his or her sexuality, ‘then there is no justification for trying to make him or her interested just because most other people find sexuality one of life’s blessing’ (Carson 1992, 86). In other words, there is every reason to exhibit epistemic modesty (Kittay 2010) but, despite that, other people do need to make judgments about the preferences of people with very limited cognitive and communicative capacities.

What does seem clearly important to many persons with profound intellectual disability is an entitlement to physical and emotional affection (Wilson et al. 2011). Just as they have the right to proper nutrition, living conditions, and health care, they should have an equal right to flourish emotionally and sexually. In fact, all of the aforementioned are crucial elements of well-being and a good life and thus matters of social justice, and would remain so regardless of one’s particular metric of justice. Whether one defines justice in terms of primary goods (Rawls 1971) or capabilities (Nussbaum 2006), it would be reasonable to argue in either case that sexual and emotional well-being are matters of entitlements and, accordingly, people with profound intellectual disability have the right to receive responses for their needs for physical affection and emotional attachment. That is clearly what people like Ella want and need, and that is what they are entitled to. There is of course divergence to the extent persons in this group are interested in forming emotional ties to others, or in experiencing sexual pleasure. But since many of them have such interests, the minimal threshold for a life with dignity for them is one in which this capability is acknowledged and facilitated rather than denied and prevented (Boni-Saenz 2015; Kulick and Rydström 2015, 286-287).

Conclusion: how to move forward?

It would be hazardous to come up with precise instructions on how exactly intimacy and sexuality should be enhanced for persons with profound intellectual disability. This is simply because of the great variety of characteristics and capacities among this group of people. But what does seem safe to suggest is a general ethical claim to include sexuality as a concern in their care as valid as any other matter usually seen as important for human flourishing. The caring staff working with persons with profound intellectual disability should not approach the issue by asking ‘is there a reason to assume that this person has a desire for sexual pleasure?’ but, rather, by asking ‘is there a reason to assume that this person has no desire for sexual pleasure or fulfilment?’ If not, the next question would be ‘how can we know what his or her sexual preferences might be?’ ‘Does the person express any kind of behavior that suggests a search for sexual stimulation (e.g. the person rubbing themselves or touching their privates directly)?’ (Boni-Saenz 2015; Cambridge et al. 2003; McCarthy and Cambridge 2006)

For most people with profound intellectual disability, the only ethically feasible way to achieve sexual pleasure and satisfaction would probably be masturbation. Gill (2015, 98–99) points out correctly, I think, that masturbation among people with intellectual disabilities is generally seen as beneficial ‘insomuch that it allows for a reduction in potential disruptions in the institution or group home, but is not seen as an asset for sexual experience’. There is an uncomfortable difference between enabling and enhancing an act in terms of behavioural issues as opposed to sexual satisfaction. When masturbation is conceptualized as a physiological necessity that removes one’s physical discomfort or as a way that prevents disturbing behaviour occurring publicly, it is probably considered less problematic to help that person to masturbate than it would be based on sole motivation to make erotic pleasure and satisfaction possible for him or her.

I am inclined to think that persons with profound intellectual disability have the right for facilitated masturbation when it is clear that it would be in their interest. However, for women, a more cautious policy would probably be in order considering their higher risk for abuse. What is important, however, is to acknowledge that even doing nothing is a way of doing something. It may be reasonable to conclude that the risks outweigh the possible benefits in a given case with the implication that a particular person will not be granted with the possibility to explore his or her sexuality. Whatever the decision or policy would be, it needs to be intentional, done in an open and honest way.

Admittedly, reducing sexuality merely to masturbation represents a very limited view; touch, closeness, and intimacy are vital elements of our sexual lives as well. Intimacy, in the sense of physical and emotional closeness, typically arise over time, from a series of encounters, because intimacy exposes us to a vulnerable position in relation to the other person and also to the possibility of exploitation (LaFollette 1996, 108–114; Popovic 2005; Umberson, Thomeer, and Lodge 2015). It is therefore that trust is a necessary condition of intimacy: ‘trust and sensitivity heighten intimacy; their absence diminishes it’ (LaFollette 1996, 111). Intimacy can be seen as an essential element of one’s security, subjectivity, and sense of self (Jamieson 2011). It is thus clear that intimacy can both diminish and improve one’s well-being. This is especially clear in the case of persons with profound intellectual disability who in their relationships are particularly dependent on other people’s willingness to care for them; they have no choice but to trust people close to them.

Among the persons we followed, Sebastian, a sociable young man in his early 20 s, expressed clearly his sexuality as well his need for physical affection. The head of his housing unit remarked casually in an interview that they provide him with the privacy to express his sexuality and that ‘yeah, he does masturbate. Yeah. There is no question about that.’ Her expression in Finnish (‘Joo kyllä hän masturboi. Joo. Ei siis mitään.’) indicated clearly that Sebastian’s masturbation was in no way a problem but rather seen as a natural part of his life. But it seems that Sebastian might want more than just autoerotic pleasure. It became clear in the early stages of Sonja’s field work that Sebastian was very fond of her. Sometimes he approached Sonja, pantomimed kisses to her, smiled at her, and finally engaged in a long hug with her. Sebastian has become very selective during the past few years regarding who he wants to engage in physical affection with – Sonja was among those few and he no longer accepts physical comfort, for example, from his mother. It would not be unusual to view Sebastian’s changed preferences as part of a maturation process and his acts and ways to approach some people (like Sonja) as indications of a desire for reciprocal, affectionate, and even sexual relations. But even assuming that he desires such relationships, the problem of how they should be made possible in an ethically justified way would remain.

Whilst working on this article, with an aim to better understand the erotic lives of persons with profound intellectual disability, I have been wondering why there is such a lack of engagement with these issues in research. There is an increasing amount of work on sexuality in disability studies nowadays, but especially work based on the cultural studies approach (for example, McRuer and Mollow 2012) that utilizes conceptual frameworks such as crip theory provides hardly any practical insight to enhance the sexual satisfaction of disabled people (Kulick and Rydström 2015, 13–16; Shakespeare 2012). The focus of these studies is the formation of cultural norms and sociocultural imagery around sexuality and disability. Too often the result is the kind of account where the carnal elements of sexuality are evaporated into ‘erudite theoretical ether’ (Kulick and Rydström 2015, 172).

This raises the question of exactly what kind of research would enhance, in practice, the sexual fulfilment of persons with profound intellectual disability? Would, for example, a case report presented by Shelton (1992) provide a model for research that would engage appropriately with the carnal experiences of sexuality of this group of people? He presents the case of a 32-year-old man, ‘Mr C.’, with profound intellectual disability who tried to masturbate by lying face down on a cold, hard floor of the bathroom area used by other residents, ‘with his penis tucked between his legs, presumably to encourage an erection, and then rocking from side to side in an attempt to achieve ejaculation’ (Shelton 1992, 82). The whole process would last one to five hours, caused him injuries, provided him minimum success rate regarding ejaculation, and resulted often in aggressive outbursts towards other residents. An intervention was proposed where he was taken to privacy in his own room when he began to demonstrate his inappropriate masturbation technique. Once lying on his bed, ‘his pants and trousers were removed from around the genital area, and the author would then take hold of Mr C.’s wrist and place Mr C.’s fingers on his genitals, coupled with the verbal prompt, “Rub”’ (Shelton 1992, 82). After five weeks and 10 sessions, Mr C.’s injuries cleared up and no new injuries were acquired through his new masturbation technique. His previous mean of 122 minutes spent masturbating reduced to 14 minutes and the overall rate of successful ejaculation was increased by 15%.

Shelton’s report raises various questions: why were Mr C.’s pants and trousers just pulled down, and not taken off? Was all that happened that Mr C.’s fingers were placed on his penis, he actually understood what the verbal prompt ‘rub’ meant, and started moving his hand up and down? Or did Shelton, in fact, manually help Mr C. to move his hand and thus helped him to understand what ‘rub’ meant in practice? The article does not tell. If we assumed, however, that Shelton indeed assisted manually Mr C. to masturbate, was it morally the right thing to do? Many individuals with PIMD would likely need, literally, hands-on guidance to learn to masturbate. In order to find consensus about the ethically justified limits of sexual facilitation, we would need more research-based practical examples of such assistance. There are books like The Ultimate Guide to Sex and Disability (Kaufman, Silverberg, and Odette 2004) and Loneliness and its Opposite (Kulick and Rydström 2015) where various examples are presented about sexual facilitation in practice, but not specifically in relation to those with profound intellectual disability.

Whatever one may think about Shelton’s article and the intervention it describes, he is correct to emphasize that at the heart of the matter is the element of risk:

the question of how willing staff are to take risks – not in a reckless and cavalier way, but in a calculated and reasoned fashion – and thus allowing each client the opportunity to experience those things which the great majority of people experience during their sexual development. (Shelton 1992, 84)

Disability studies scholars need to engage with the sexual needs and experiences of persons with profound intellectual disability. Unpacking ableist ideologies, narratives, and images related to disabled sexualities is not enough in order to improve the sexual lives of disabled people. It thus seems that there is a need for reassessment in disability studies as to research sexuality of persons with PIMD in the first place, as something other than an expression of the cultural imagery.

Acknowledgements

Thanks to Ben Curtis, Eva Feder Kittay, Don Kulick, Reetta Mietola, Sonja Miettinen, Tom Shakespeare and Nick Watson for their comments on an earlier draft of this article.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This work was supported by Academy of Finland