Keywords

Within the structure of this book, this chapter is the last in the final section, entitled “Diverse Populations.” A facetious, but not altogether inaccurate, version of this chapter could be “all of the above.” It is important to state at the outset that every issue that has been dealt with in this book pertains to Paralympic athletes as well. In the history of how society thinks about disability, there are traditions that position people with disabilities as different from other people, inhabiting the world differently, or even, implicitly, inhabiting another world. This view of people with disabilities as inherently different from other people is inaccurate and, mercifully, falling out of favor in mainstream thinking.

Disability, Sport, and the Question of Inclusion

So, if people with disabilities are essentially no different from other people, then why have a separate chapter in a book like this to explore questions of mental health in Paralympic athletes? In some ways, it has become more possible to envisage a future world within which people with disabilities are fully included in society and sport, making the need for this chapter disappear. However, we are not there yet, by any means, and part of the reason we are not there yet goes to the heart of what we understand by disability.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the foundational document for contemporary understandings of, and policies around, disability, defines disability as follows:

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others [1].

Behind this widely accepted definition is a long history of struggle around how we should understand disability. There is not enough space here to go into detail about the debates regarding disability models and definitions (for some discussions of this, see [2,3,4]), but some key issues in the development of thinking are important to note. Historically, in what has been termed the “medical model,” a disability was essentially defined as a bodily defect. A disability could be defined as no more and no less than what was wrong with a person’s body; the goal of improving the lives of people with disabilities was, commonly, to conduct treatments to fix or ameliorate bodily impairments [5]. A disability, it was believed, was a matter of the body.

If we look at the UNCRPD definition quoted above, then we can see how far definitions of disability have come. Crucial for the definition is the phrase “in interaction with various barriers.” The UNCRPD does not deny the importance of the body and mentions “long-term physical, mental, intellectual or sensory impairments,” but these impairments are not the whole story. In a tradition of thinking that goes back to what was termed the “social model” of disability, coined in the 1970s, disability is far more than a problem or what disability would call, an impairment of the body—disability is constituted through the “various barriers” that people with impairments experience in the world [6].

Many models of disability have been proposed since the establishment of the social model [7,8,9,10,11,12,13], and debates concerning disability definitions remain heated within disability studies [14,15,16]. For the purposes of this chapter, what all of these approaches share is a recognition of the key role that the environment (including the physical, social, and virtual aspects) plays in the constitution of disability.

The Paralympic Movement started in 1948 at Stoke Mandeville, with the original emphasis on rehabilitation. The person credited with founding the Paralympic Movement, Dr. Ludwig Guttman, was a Jewish refugee from Nazi Germany; theorists have suggested that from the beginning of the movement, Guttman brought his own experience of social exclusion, discrimination, and oppression to the work of disability sport [17,18,19]. Although there was clearly in Guttman’s mission a focus on physical rehabilitation, he understood from the beginning the importance of social inclusion and acceptance. In this important respect, though it historically predates the social model of disability, since its inception, the Paralympic Movement has been intertwined with an appreciation of the centrality of social exclusion as key to the experience of disability and, indeed, to disablement itself. There is growing evidence that discrimination of various kinds may be associated with psychological distress and mental health symptoms or disorders [20,21,22,23,24,25]; a key feature of contemporary thinking about disability and its relationship with mental health concerns focuses not on disability itself but on disablism, a social process akin to racism, sexism, or homophobia, for example [26,27,28,29].

The central rehabilitative mission of the Paralympic Movement, then, can be viewed in this light as focusing not just on the body of the athlete but, possibly more centrally, on the social conditions that exclude such bodies. From a mental health theory and a practice point of view, improving mental health conditions, which includes alleviating symptoms and preventing mental health disorders from developing in the first place, becomes not just a question of therapeutics as conventionally understood but also of social justice and social inclusion [30,31,32,33,34]. The issue of social inclusion is, of course, an issue for all people and all athletes, but may be of particular relevance, given the reality of disablism, to Paralympic athletes. However, how is inclusion achieved?

The Complex Politics of Inclusion

The South African Human Rights Commission, following international practice, in 2002, promulgated a report on disability called Towards a barrier-free society [35]. This report concludes with the statement, “Prejudice remains the greatest disability”. Regardless of whether this comparative statement can be empirically supported, if we accept that prejudice is a key factor affecting social inclusion, then what role does Paralympic sport play in reducing prejudice and in improving mental health? Elsewhere in this book, the authors have explored the burden borne by all elite athletes in terms of what is expected of them as performers and role models and the potential contribution of expectations to mental health symptoms and disorders [36,37,38]. In the absence of many studies comparing mental health symptoms and disorders in elite athletes with appropriate control groups, it is difficult to isolate the potential mental health impacts on athletes from the burden of expectations on them. This question becomes more complex when considering the case of Paralympic athletes. As I will show later in this chapter, the number of studies comparing mental health issues and their genesis in Paralympic versus other athletes, or even comparing Paralympic athletes to the general population, remains small. It is nevertheless important at this stage of the science to consider contextual factors that may have a bearing and that should be explored in future work.

Critical theorists of disability sport, notably P. David Howe [39,40,41,42], have pointed out how the Paralympics have evolved from having an essentially rehabilitative focus from Stoke Mandeville roots to being a global television and social media-mediated spectacle [43, 44]. Many claims have been made for the Paralympics, and the London 2012 Paralympics in particular, to effect social change, and there is considerable debate as to whether these games have changed perceptions in an enduring manner or improved the lives of people with disabilities [45,46,47].

At the level of the athletes themselves, and their mental health, concerns have been expressed in the literature about the possible impact of representation of sportspeople with disabilities as “inspirational” or “superhuman.” Critiquing this phenomenon, which is known as the “supercrip” phenomenon, the late disability activist and comedienne Stella Young used (and is credited with having coined) the term “inspiration porn”; her TED talk on this topic has been viewed close to four million times [48].

Discussing this phenomenon and Young’s contribution, Grue [49] defines inspiration porn in the following manner:

Inspiration porn is the representation of disability as a desirable but undesired characteristic, usually by showing impairment as a visually or symbolically distinct biophysical deficit in one person, a deficit that can and must be overcome through the display of physical prowess ([49]: 838).

Debates about “supercripping” and “inspiration porn” are extensive and are part of broader discussions about disability and representation [50, 51]—discussions that cannot be fully summarized here. The key issue of this chapter, though, is that portraying people with disabilities as overcoming odds is not just a portrayal of reality but a reproduction of ideas about what disability is and should be [52]. It is certainly better for people with disabilities to be portrayed as overcoming odds and being inspirational than it is to have them portrayed as pathetic, weak, dangerous, or “freaks” [53], but these issues of representation are not simple, and as Nario-Redmond et al. [52] have suggested, there may be many forms of ableism that are not overtly hostile but which may be demeaning, including paternalistic views. In summary, few, if any, would argue that inclusion is a bad thing—far from it—but inclusion brings with it a complex representational politics of its own.

The Paralympic Paradox: Body, Society, and Mental Health

As we have seen, the social model of disability and the approaches stemming from it have been central in showing that disability is not only, or essentially, about the body but also about the interaction between impairment and social and other environmental issues. A second feature of the social model was its insistence that by virtue of impairment, there is no reason to assume that people with disabilities inevitably experience more mental health challenges, or mental health disorders, than do members of the general population [26, 28, 29], with contemporary theorists emphasizing the continuities rather than inherent the categorical differences between lives lived with and without a disability [49]. These two features, taken together, create related challenges for studying mental health symptoms and disorders in Paralympic athletes.

The first problem is that if researchers look for evidence of mental health symptoms and disorders in athletes with disabilities, then they may fear leaving themselves open to being accused of being old-fashioned medical modelists, conflating bodily differences with emotional problems [54,55,56]. In my own work with disability activists in Africa [57], I have very often had colleagues with impairments saying, “I may be disabled, but I am not mad or stupid.” Quite apart from the fact that statements like this may be read as reproducing stereotypes of people with psychosocial or intellectual disabilities, this statement does indicate some of the struggles for equality experienced by people with disabilities. Over the course of the development of the Paralympic Movement, furthermore, the emphasis has been on other, supposedly more positive, qualities of athletes with disabilities, such as grit, determination, and resilience [58]. Just as there is stigma associated with physical impairment, there is stigma associated with mental health symptoms and disorders [59,60,61], and it would not be surprising if researchers were to avoid this field of research, which, however unfairly, could be seen as yoking two sets of stereotyping—that against disabilities and that against mental disorders—together.

A second issue potentially affecting research into mental health symptoms and disorders in Paralympic athletes is that with the emphasis on social and environmental factors as constitutive of disabilities, there may be, paradoxically, a lack of attention to issues of the body and how these may differentially affect athletes with disabilities. The differential attribution of suffering and pain to Paralympic as opposed to other athletes without evidence is an ideological problem [62]; the empirical question of whether athletes with impairments experience more pain or different types of injuries than do those without [63, 64] is another matter and is a question central to good health and, specifically mental health, care for athletes. The relationship between general physical pain and mental distress is well-researched [65, 66]. Bodily experiences of pain, and of issues related to the classification of bodies by impairment through the Paralympic classification system, are unlikely to be irrelevant to the questions of mental health for Paralympic athletes, but a reluctance to focus on and pathologize the disabled body may explain the relative lack of information on mental health symptoms and disorders in Paralympic athletes.

Mental Health Symptoms and Disorders in Paralympic Athletes: Data and Issues for the Future

In our narrative review on mental health symptoms and disorders in Paralympic athletes [23], we noted the paucity of information on the topic. This situation has not changed substantially [67,68,69]. Olive et al. [69] have demonstrated that the rates of mental health disorders between athletes with and without disabilities may not differ much (a point that underscores the “all of the above” comment at the outset of this chapter), and, in this regard, a recent chapter [70] has summarized a challenge relevant to thinking about mental health in Paralympians as opposed to other athletes, using the tagline “Same same but different”; specifically, the challenge remains of mainstreaming mental health symptoms and disorders in Paralympic athletes with mental health symptoms and disorders in all athletes, while not losing sight of the distinctive challenges. This is an example of more general questions around mainstreaming of disability issues and people with disabilities [71].

The key issues noted by Swartz et al. [23] and in related publications [67, 72] remain current. There is good evidence that participation in sport is helpful in a range of ways for the mental health of all people, including people with disabilities [73]; we need to know more, however, about the impact of trauma histories on the mental health of Paralympic athletes, a proportion of whom have become disabled through trauma, and about the impact of classification and reclassification of para-athletes as categories change and new patterns of exclusion may emerge [74]. We need to understand more about pain, medication, and assistive devices and their relationship with mental health symptoms and disorders in Paralympic athletes.

As in all contemporary studies on the genesis and development of mental health disorders, we need to take a lifespan approach, understanding the different trajectories to becoming a Paralympic athlete and also to life after this career. A central issue affecting all elite athletes is transition out of high-level sport participation; this issue takes on a particular meaning and significance for para-athletes [23, 75]. Given the high rates of social exclusion of people with disabilities, and lower employment rates, the path to life outside sport for former athletes may well be more trying for para-athletes, with the possibility of not only loss of employment but also loss of an elevated role. Supercrip status, as suggested earlier, may be a problem; the journey from this status to a marginalized category (persons with a disability) may be especially challenging.

As is the case with any understanding of mental health needs in elite athletes in general [76], it is essential to consider the global context of sport participation and mental health resources. As economic barriers to participation in parasport may, hopefully, be more recognized and dealt with [77], there may be more athletes from low- and middle-income countries participating in disability sport at the highest level. The challenges that these athletes may face in terms of infrastructure, support, access to appropriate assistive devices, transport, and more all need to be factored into any understanding of the mental health symptoms facing Paralympic athletes. The transition out of sport in low-income contexts, furthermore, may be especially challenging where resources are few and opportunities are scarce for the society as a whole.

Conclusions

In summary, the field of mental health for Paralympic athletes remains understudied and is not yet fully understood. A global approach is needed, allowing for inclusion of athletes from a wide range of countries and contexts, including contexts where formal mental health services are scant. Innovative, cost-effective, and culturally appropriate services are important, in line with contemporary thinking in global mental health [78, 79]. Culturally appropriate care is essential, and, in this regard, among the true experts on what is culturally relevant and acceptable to Paralympic athletes are the athletes themselves. Their voices need to be listened to in debates.