Introduction

Many students with intellectual disabilities (ID) in several western countries view the sex education provided at special schools as inadequate and irrelevant [1,2,3,4,5]. This article aims to examine this issue from a crip theoretical perspective [6,7,8]. More specifically, the aim is to present the process of concept explication by showing how terms such as crip and intellectual disability are connected in a broader theoretical argument [9]. Therefore, the article also put attention to the classical theory of stigma [10]. To date, crip theoretical perspectives have primarily been employed in relation to physical disabilities and the physical body [6, 11,12,13], and only a few analyses have focused on ID [4, 5, 14]. How might crip theory be employed in relation to intellectual disabilities, which to a varying extent involve limitations to the individual’s capacity for abstraction, language use and communication, and an attenuated comprehension of process and context [15]?

Crip theory involves examining and challenging what may appear to be self-evident, and may therefore be a useful means of examining visibility, actorhood and stigma among individuals with ID [8, 14, 16]. The social environment’s interpretation of what constitutes a “normal” life in relation to one’s sexuality may be of decisive importance to individuals with ID [17, 18]. Research shows that staff members’ social interactions with persons with ID are often restrictive as a result of a sense of responsibility to protect them from negative aspects of sexuality, such as unwanted pregnancy and sexual exploitation and abuse [17, 18]. Further, persons with ID often grow up in a heteronormative world or are viewed as asexual or as children with no sexuality [4, 14, 17]. From a crip theoretical perspective, then, a critical examination of categories such as heterosexual–homosexual, normal–abnormal, disabled–able-bodied may be a means of elucidating views on sexuality among persons with ID [6, 8, 14].

In this article, I use the term killjoys, which I take from the work of the British and Australian cultural and social theorist Sara Ahmed [15]. Ahmed’s analyses are located at the intersection between queer and feminist theory and focus on the way bodies and worlds are constructed and how power is secured and challenged in both everyday life and institutional cultures. To paraphrase Ahmed, might those in the environment surrounding individuals with ID, i.e., staff and family members, function as “killjoys” in relation to sexuality and intellectual disability? Or might they develop into what I will here refer to as “thrilljoys”, individuals who facilitate as joy makers the embracement of stigma, with a focus on enjoyment rather than apparent problems in relation to sexuality and people with ID? If so, what would bring this about? Thrilljoys implies an intense, possibly exciting kind of joy and the word “thrill” suggests adventure, and a sense of extraordinary energy. Thrilljoys points towards a content that is vibrant, dynamic, and possibly adventurous. What perspectives are in focus in sex and relationships teaching at special schools – sexual risk or sexual pleasure?

The Development of Crip Theoretical Perspectives

Activists and researchers began to make use of crip theoretical perspectives and concepts in the mid-2000s. The American theorist Robert McRuer was among the first researchers to develop queer- and disability studies through the use of crip theory [6]. The use of the crip concept, which is based on an abbreviation of the English word cripple, involves the questioning of norms, and has parallels in the gay and queer movement [8]. A common denominator is that the concepts gay, queer and crip all have their roots in terms that were originally used aggressively, as terms of abuse. Instead of being addressed by others as something different, individuals can themselves choose to call themselves crips, and feel pride [6,7,8]. Doing so involves taking control over the way others perceive and express themselves about one, reclaiming the negative and giving it a positive meaning.

There are also strong links between crip theory and feminist disability studies, which have highlighted the patriarchy as an oppressive system in the formulation of the ableist power order [20,21,22]. The American feminist Rose-Mary Garland-Thomson’s concept of the “normate”, which refers to the idea of the able-bodied individual, has been an important contribution to the development of crip theory [22].This concept shifts the focus from an analysis of the so called abnormal to the normate [6, 22]. Thus crip theoretical perspectives involve challenging a binary polarity that contrasts the “abnormal” with the “normal”, but direct their focus at analysing the so-called “normal” instead of focusing on what is viewed as deviant. At the same time, the American crip theorist and feminist Alison Kafer warns against a binary understanding of able-bodiedness and non-normative functionality, since perceptions of what constitutes disability shift across time and space [24].

From Stigma to Crip Killjoys

The concept of stigma is central to crip theory and was originally developed by the Canadian American sociologist Erving Goffman [10]. Goffman defines stigma in terms of a discrepancy between an individual’s desired social identity and his or her actual identity. The individual’s self-image is created in interaction with the social environment, i.e., when we perceive how others react to an interpret a certain situation or behaviour. In this sense, the “normal” only exists if something else is simultaneously defined as “abnormal”. Goffman argues that identity is also formed by a person’s subjective definitional processes, since deep down, the majority of us feel “normal” [10]. If our social environment does not confirm this feeling, however, it is difficult to maintain. Because the way we appear in the “gaze” of others has such consequences, it is often difficult to free ourselves from the way we are perceived by others. Those who have acquired a stigma – in the form of being subject to a negative categorisation or stereotype – may experience a dissonance between the way they are viewed by their environment and their most deeply rooted feelings about themselves. One way of coping with this is to develop various survival strategies, by adopting alternative perspectives that reduce the effect of being stigmatised as abnormal. “Embracing one’s stigma” is one example of how to take control over the treatment received from others, be proud and give oneself an incontestable positive worth [10]. A person with a disability does not then look for tolerance, but rather uses the word “crip” and displays his or her stigma without hiding it or being ashamed. According to Goffman’s theory of stigma, those who are stigmatised can obtain support in part from “the own”, i.e., those who share the same stigma, in part from “the wise” [10]. The latter group comprises those who have a special insight into or understanding of the situation or life conditions of those living with stigma, in the current case the staff at special schools.

Sara Ahmed’s concept of the killjoy [19] refers to the feminist killjoy in a sexist and racist world. Instead of laughing at racist jokes, for example, the feminist killjoy reacts in a way that “ruins the moment”. Ahmed’s analysis of the killjoy has been employed in the crip theoretical analyses of the American crip researchers and theoreticians Merri Lisa Johnson and Robert McRuer [23]:

Ahmed reclaims “killjoy” as a site of productive misalignment with cultural instructions to be [or act] happy in oppressive circumstances. If a cruelly optimistic culture insists that we fake it till we make it, the crip killjoy refuses to play along.

For Ahmed, social norms are maintained by being linked to positive emotions such as joy and happiness [19]. Thus, emotions are not primarily viewed as an individual and psychological phenomenon, but rather as a social phenomenon that is related to the organisation of bodies and norms. At the same time, the link is not a simple one: “You cannot always close the gap between how you do feel and how you should feel,” writes Sara Ahmed [19].

Merri Lisa Johnson and Robert McRuer have developed Ahmed’s concept of the killjoy and linked it to the crip theoretical understanding of disability, minting the concept crip killjoys [23].The term is used to label a refusal to act in accordance with the system of able-bodiedness. Johnson and McRuer write [23]:

A refusal to act in accordance with the system of compulsory able-bodiedness – that requires individuals to mask, suppress, and disregard discomfort in the process of determining what is possible, of what we are capable.

The crip killjoy concept may also be useful to understanding able-bodiedness in relation to intellectual disability. Later in the chapter, the concepts killjoys and thrilljoys will be used to examine sexuality among young people with ID. Before moving on to link this to sex and relationships education in special schools, however, we will first take a closer look at another concept from crip theory, which is focused on the examination of time and space.

Crip Time – a Flexible Approach to Looking at Time

A further development of the crip theoretical perspective has been made by Kafer, who uses the concept crip time [24].The concept constitutes a caustic reference to the way persons with a disability always seem to arrive too late, or not at all, to places, meetings or other situations. Crip time may be used in analyses of “a flexible standard for punctuality” and “the extra time needed to arrive or accomplish something” [24]. Instead of analysing and focusing on lateness, the crip theoretical perspective instead examines the challenges and conditions that thwart even the possibility of being punctual:

Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds [24].

Thus, crip time involves an awareness that flexibility does not simply mean “extra” time for people with disabilities but is also about providing the conditions necessary to be able to come on time. Crip time may be viewed as a form of flextime, that is not only expanded but also exploded, and for this we need to reformulate our conceptions of what can and should happen “on time”. Not least it requires acknowledging that expectations regarding “how long things take” are based on particular minds and bodies [24]. Since crip time is about participation and accessibility for all, it should also be possible to apply these ideas to intellectual disability. Not least, they may be used in an examination of the way knowledge on sex and relationships is communicated, and to what extent this knowledge provision should be repetitive, continuous, and adapted to the needs and expectations of students at special schools. In what ways can situations and actions be adapted to people with ID, rather than vice-versa? And what would be required to increase the possibilities to give this teaching at a relevant time, and for the students to understand the meanings associated with situations and actions, given that intellectual disabilities in themselves involve cognitive limitations and disabilities specifically in relation to these aspects of an understanding of time, space and context?

Cripping Sex and Relationships Education in Special Schools

We will now look more closely at the way sexuality is viewed in relation to people with ID and at sex and relationships teaching at special schools. Why do students with ID not perceive the sex and relationships teaching at special schools to be relevant, accessible, and flexible? Is it possible that this teaching is constructed and packaged in a way that simply doesn’t work for students with ID?

Historically, the sexuality of people with ID has been associated with restrictions and negative treatment [4, 16, 18, 25]. This changed substantially with the ”normalisation process” that was implemented in Scandinavia during the 1960s and 1970s [26]. Social reforms then made it possible for people with ID to grow up with their families, like “everyone else”, instead of being placed in single-sex institutions that were separated from the rest of society. Nonetheless, sexuality and disability remains an area that is viewed as complicated and challenging [2, 27, 28]. Together with the American-Swedish anthropologist Don Kulick, the Swedish historian Jens Rydström has argued that Sweden, a country that in other respects is regarded as a paragon in the field of sexual rights, has been more oppressive in this area than her neighbours [29]. This is not least the case in relation to sex and relationships education, which has been obligatory in the Swedish school system since the mid-1950s [30, 31]. Both national and international research shows that information about one’s own body, sexuality and relationships is often inadequate at special schools [2,3,4,5]. One explanation for this is that the teaching goals are too general, which makes it difficult to assess the quality of the teaching [2, 27, 28]. Nor are these goals adapted to the heterogeneity of the student group, i.e., their varying levels of development, maturity and intellectual functioning [2] .

Although the most significant communication of knowledge generally takes place at school, friends and parents also have a powerful influence on the knowledge, attitudes and behaviours of young people [31]. As a result of the consequences of intellectual disability, however, young people with ID do not have the same opportunities as others to share knowledge with one another [2]. For this reason, and in the same way as other young people today, many turn to the internet to acquire knowledge on sexuality [32, 33]. Research shows, however, that this group find it more difficult than others to sort and critically examine online information [1, 33].

While staff in special schools and habilitation services feel it is important for young people with ID to receive information on sex and relationships that is adapted to their specific life conditions, experiences, needs and expectations, there is considerable ambivalence on this issue [2]. Concerns regarding unwanted pregnancy, sexual abuse and other sexual risk situations mean that there is uncertainty in the social environments of young people with ID regarding what, how and by whom information should be provided [2]. In addition, staff feel that it is difficult to communicate knowledge on sexuality to a group that is so heterogeneous with regard to the level and nature of their intellectual disabilities, and who therefore have very varied life experiences [2].

Over the last decade, a great deal of attention in Sweden has been focused on the way that sex education in schools is generally heteronormative and adopts the heterosexual couple or family as its point of departure [30, 31]. For young people with ID, who are in a position of dependency, it can be particularly difficult to find alternative, non-standard ways of being or living [2, 17]. The majority have no experience of intimate relationships, and only a few live together with a partner as adults. Even fewer “come out” as HBTQ-persons [17, 34]. The intellectual disability appears to be viewed by these individuals’ social environments as sufficiently “different” in itself, which leads to other, non-heteronormative sexual identities and variations being rendered invisible [17]. This also means that young people with ID have fewer role models, and probably find it more difficult to “come out” as gay or lesbian [2, 17, 34].

A Swedish interview study with 16 informants with ID showed that sex and relationships teaching is rarely perceived as relevant from the perspective of the students and their life conditions [2].Too much focus is directed at risky sexual activities in the context of intimate relationships, which many students have no experience of. Instead, the majority of the informants with ID expressed a desire for more opportunities to talk about relationships, about how it would be possible to get a partner, and about different ways of expressing sexuality. Problem-focused heteronormative teaching, which is in addition primarily focused on couples, simply does not correspond to the needs, life conditions or current life situation of these students [2].

The Australian researchers Jane Chivers and Sue Mathieson have argued that it also is possible to challenge the dominant discourse of sexuality, with its focus on penetration and risk, in relation to young people with ID [35]. Instead, it is possible to give voice to a less dominant perspective that focuses on desire, pleasure and intimacy on the basis of a broader view that includes sexualities other than the heteronormative standard. From a crip theoretical perspective, it is also possible to add new meanings and significances to the intellectually disabled concept by studying the non-intellectually disabled [6, 14]. In a thematic journal issue on crip sex and relationships education, the Canadian sociologists Margaret Campbell and Alan Santinele Martino and the Swedish sexologist Lofgren-Martenson wrote [36]:

In conclusion, the refusal to accept and value disabled people’s sexualities is a social justice issue with far-reaching consequences. It is important for all people to consider how we might contribute to a culture that upholds and affirms disabled people’s right to a sexual life. By exposing the ways in which heterosexism, cisnormativity, and ableism are both institutionalised and naturalised in educational settings and by including the voices and perspectives of people with disabilities, scholars and activists can work to create more inclusive and holistic sex education curricula as well as more inclusive educational environments for all students.

Cultural sexuality norms do not exist in a vacuum. In another Swedish interview study on sexual and reproductive health and rights, 15 out of the 19 informants with ID described special challenges linked to having been raised in a country other than Sweden, or having parents who had been born in another country [1]. These students with ID often find themselves caught between contradictory and parallel sexuality norms, particularly with regard to views on LGBT, contraception, sex before marriage and abortion [1, 38, 39]. As a result of their intellectual disabilities, it can be particularly difficult to navigate among these norms and to relate to them. This makes the need for improved and relevant sex and relationships teaching that is adapted to the heterogeneity of the target group particularly important [1], as well as using an intersectional perspective on disability [37,38,39]. Some of the informants with ID spoke of having experience of sexual acts together with a partner, and experience of short or longer relationships, while several spoke of not having had such experiences [1]. Others described a clear lack of knowledge in certain areas and having received sex and relationships education that they perceived to be inadequate and irrelevant [1]. It is particularly important to respond to these problems, since a lack of knowledge can lead to a greater risk for abuse, harassment and non-consensual sex [1,2,3, 25].

An Inclusive Perspective Facilitated by Joymaking

In order to make sex and relationships education more relevant and flexible for the heterogeneous group of young people with ID, there is thus an urgent need to proceed on the basis of what these young people themselves want and say that they need [2]. This article employs the concepts of killjoys and thrilljoys, which have been developed to highlight the significance of the social environment for these young people’s needs and life conditions, and to challenge presumptions that have to date been taken för granted. If mainstream sex and relationships education focuses on sexual risks, such as unwanted pregnancies and sexually transmitted infections, while the descriptions of people with ID show that only a few of them have such experiences, the teaching will be perceived as irrelevant. The focus should therefore be shifted from what the social environment views as these young people’s needs, to what the young people themselves feel is important. This means that crip time, in this case the timing of this teaching and its situation, should be adapted to the needs of the young people themselves, and not vice versa, by giving this teaching recurrently in a way that is relevant to the young people’s current life situation and to events that are happening in their lives.

This conceptual article has therefore directed its principal focus at staff, the young people’s social environment, on the basis of a crip theoretical perspective, which reverses heteronormative and restrictive views on sexuality and intellectual disability [14]. This gives rise to questions as to why heterosexuality is given such a central place, and why penetrative heterosexual sex is allowed to define sexuality, when there are so many other ways of expressing sexuality that are more in line with experiences and perceptions described by many young people with ID. Perhaps it is even more difficult to challenge the norm of couple relationships than that of heterosexuality, and that this is a further issue that needs to be examined on the basis of a crip perspective.

There has to date been a lack of research focused on the development of crip theory to include a focus on intellectual disability [14]. Such developments would make the issues of autonomy and cognitive assistance central. In this article, I have looked at how the staff at special schools might acts as thrilljoys, as a means of challenging prevalent attitudes and norms that appear to function in a way that is constrictive, restrictive and controlling. Adopting the position of thrilljoy is not about concealing victimisation or vulnerabilities that may be a consequence of an intellectual disability. Instead, the position involves an effort to see possibilities for joy, intimacy and communion that are otherwise not associated with norms linked to sexuality and intellectual disability.

The development of crip theory, intellectual disability and sexuality involves dealing with questions of self-determination and highlighting the sexual rights and sexual actorhood of people with ID [16]. Assuming the role of thrilljoy means listening in a flexible and relevant way to the wishes that people with ID themselves express. This might in turn also make it easier for people with ID to themselves adopt a crip theoretical perspective and to really embrace that which has up until now been defined as a stigma. Developing new ways of looking at non-normative intellectual functionality and sexuality could contribute to promoting sex education geared towards people with ID in an inclusive way.

Further Research

This approach also has relevance for further research on crip theory and people with physical disability. For example, Davies and Kenneally [13] utilize crip theory and a critical disability studies lens to analyze controversies surrounding parents’ rights versus children’s rights in the context of comprehensive sexuality education in Canada. However, this article highlights the importance of further research connected to the chosen target groups while people with intellectual disability are more invisible in the crip literature [14]. This is also a way of emphasizing the need of expanding the concept of crip, just as queer has done to include more groups, given its fluid and mutable nature [14].

Finally, suggested further research could also be to examine how sex education can be conducted together with young people with ID and not ”for” and ”by” care givers, just as Frawley and O’Shea [5] say. To get more in-depth knowledge from a crip perspective about collaborations in developing curriculum that meets the sexual right needs and is experienced is highly relevant. That means to put more interest in research on sexual agency as well as sexual health and rights for people with intellectual disability [16, 40].

Limitations and Strenghts

This article has several limitations while the attempt of conceptualizing and developing concepts on crip theory and intellectual disability is challenging. Is it possible for all people with intellectual disabilities to understand what it means to ‘‘embrace the stigma’’ and to charge the word ‘‘crip’’ with positive aspects, considering the character of the disability (e.g. the cognitive impairment)? Therefore, perhaps the responsibility should rely on others, among them normates, to offer and open up these opportunities, and not least to continue to develop concept explication.

The analysis is tightly connected to foremost Swedish data. This specific cultural context consists of a long history of compulsory sex education in school as well as a well fare system that since decades is supposed to meet everyone’s needs, including people with disability. However, there are still needs to meet, especially when it comes to areas such as sexuality. Another context would have had different cultural challenges. Nevertheless, the strength of the article is the inclusion of data from current studies from other countries that can confirm the need of an ongoing process of this concept explication.