Between Independence and Dependence: Skiing for People with Disabilities as a Path to Destigmatization

Wheelchair skiing is an activity accessible to everyone, one that challenges “ableist” ways of thinking. Indeed, it seems normal to us to ski standing up because of our “physical abilities.” However, a person with motor disabilities can also enjoy this winter sport while seated—and, moreover, with the help of a pilot—if they lack the use of their upper limbs as well. This raises the question of autonomy. Can we describe a para-skier in a wheelchair piloted by a third party as autonomous? Aren’t they dependent on various factors? Furthermore, it was interesting to understand how participating in para-sports could help combat societal stigma surrounding disability.  To shed light on this, a field study was conducted at the Font-Romeu ski resort. The objective was to compare the different perspectives of key stakeholders in the field, such as ski instructors, guides, and para-skiers. Following participant observation and interviews, we realized that para-skiing can be described as an autonomous activity that is carried out in a dependent manner.

As Blanc points out, “The existence of disability presupposes two necessary conditions interacting simultaneously…: people with physical impairments live in an inhospitable environment” (2015, p. 17). This environment consists of architectural, technological, and human facilitators (which can become barriers) (Reichhart, 2013). Added to this, an “image of apathy, inactivity, and dependence” (Marcellini, 2005) is associated with people with disabilities. However, “this strong stigma is so widespread in society that the people who are labeled have internalized it themselves. ” (Ibid., p. 15). As a result, individuals with disabilities do not feel capable of performing certain actions in society, which in turn hinders their autonomy.

To combat this “discrimination,” the Handisport[1] federal movement emerged in our society as early as the late 19th century. Following World War II, sports were primarily viewed as a means of rehabilitation and a tool for functional recovery for war veterans with disabilities. Nevertheless, certain stakeholders—such as the war veterans themselves—sought to develop an alternative, less medical-focused perspective. Philippe Berthe (an able-bodied skier who became a femoral amputee following a war injury) wanted to return to skiing and realized that disability and sports were not incompatible (Ruffié, Ferez, 2013). He then founded the Fondation de l’Amicale Sportive des Mutilés de France (ASMF)[2]. It was thanks to the determination of a few idealistic tinkerers, some regional funding and support from ski resorts, as well as technical innovations that adaptive skiing emerged in France in the 1950s. To make skiing accessible, a range of technical and technological innovations emerged. According to Reichhart (2020), these innovations must be “tailored to different impairments and functional limitations” based on each person’s specific needs. During Philippe Berthe’s time, technical innovations were developed to compensate for the functional consequences of physical disabilities, targeting individuals capable of standing. For people unable to ski while standing[3], the first ski chair was created in France in 1985. With models such as the Tempo Uniski, the Tempo Dualski, and the Tandem’Flex, the variety of equipment expanded in the early 2000s, making the sport accessible to a wider range of people.

Other factors—such as legislative measures promoting inclusion and the design of ski resorts aimed at accessibility—are evolving to expand opportunities for everyone to enjoy mountain sports. One final notable factor—and by no means the least important—is the human facilitator. Indeed, the companion sitting behind the adaptive ski chair will play a vital role—depending on the individual’s expectations—in fostering the adaptive skier’s autonomy. It is through all of these factors that the environment for participants with disabilities will either become conducive to their pursuit of the thrill of skiing and/or autonomy—or not—and will help to either create or reduce situations of disability. But what does it mean to be independent when one experiences situations of disability that require assistance (through the use of technology and/or human support) to carry out daily activities?

According to Loher Goupil: “The concept of autonomy has become central to the discussion of disability” (2015, p. 12). Indeed, many people with disabilities dream of achieving this much-talked-about autonomy. The CNRTL defined autonomy in 2007^[4] as “the ability to determine one’s own course, to choose, and to act freely,” or as a form of “freedom, moral or intellectual independence.” But how can one act freely when one has functional limitations? In 2016, Henrard emphasized that the concept of autonomy “is often misused to mean ‘functional’ (or ‘physical’) autonomy, which is considered to be the absence of dependence in activities of daily living” (2016, p. 150). It is therefore important to fully understand this concept and to highlight the nuance associated with it.

Given this, can we say that a person with physical disabilities has any form of autonomy? The law of February 11, 2005^[5]addresses some of our questions regarding equal rights and opportunities, participation, and citizenship for people with disabilities: “A disability, as defined by this law, is any limitation of activity or restriction on participation in society experienced by a person in their environment due to a substantial, lasting, or permanent impairment of one or more physical, sensory, mental, cognitive, or psychological functions, a multiple disability, or a disabling health condition.” Through this definition, we can see that a disability entails certain complications—both physiological and physical—that indirectly hinder the autonomy sought by every human being, as well as creating a dependence on certain factors. Indeed, the need for an adapted wheelchair, a pilot to operate it, and an adapted environment could constitute a certain form of dependence for the wheelchair skier within this so-called autonomous sport.

This raises the question: to what extent is it possible to destigmatize disability through the practice of handiski, which is both independent and dependent? After presenting the research methodology we adopted, we will show that handiski is an activity that can be practiced entirely independently. We will then explain why this activity also involves a degree of dependence for the handiskier. Finally, we will demonstrate that the practice of handiski can be a path toward a form of destigmatization.

Methodology

An investigation often begins with a lengthy phase of questioning and observation. My research began during my training in 2020 to become a “Federal Handisport Coach specializing in Alpine Skiing.” This experience served as my first step into my field of research by allowing me to connect with the Handikraft association^[6]. I no longer needed a “gatekeeper” (Schwartz & Jacobs, 1979) to negotiate my entry into the field of study, as the association’s leaders already knew me from that initial visit. In February 2022, I reconnected with the association with the goal of spending four days with them in March.

Along with this selection of a geographic area, the study population was defined. In this article, we will focus solely on individuals with motor impairments. Although there are several forms of adaptive skiing, I have concentrated on participants who are seated in a chairlift operated by another person. Furthermore, it is important to note that the field “is above all a set of relationships that require the researcher’s presence and personal commitment” (Agier, 2007, p. 178). I therefore adopted a micro-sociological, inductive approach, specifically through an ethnographic methodology. Finally, being physically present in my field of study allowed me, first, to use observation as a tool and, second, to rely on interviews, which served as my primary research method.

The purpose of participating in adaptive skiing outings was to observe; armed with a field notebook, I was able to take notes on behaviors and interactions between individuals (guides and adaptive skiers). Participant observation thus allowed me to engage with the field and build special relationships with the participants, whom I later interviewed. A relationship of trust developed with the participants I observed, which gave me access to a wide variety of information. This method thus played a key role in enabling me to conduct qualitative interviews. The five recorded interviews, which were also part of my observations, lasted an average of one hour and took place in various locations depending on the interviewees’ preferences (a hotel, a café, or at the bottom of the ski slopes).

The objective was to compare the different perspectives of practitioners in the field regarding the research areas. The interviews, which fell somewhere between a biographical interview (Becker, 1966) and an explanatory interview (Vermesh, 2008), were conducted using an interview guide covering four themes: the respondent’s status; wheelchair skiing and the joy of skiing; the relationship between the pilot and the wheelchair skier in relation to the concept of autonomy; and the destigmatization of disability through this practice, referring to the concept of the “handi-capable” (Richard and André, 2017), a notion defined below. The questions and follow-up prompts were adjusted throughout the study.  The selection of interview participants occurred “naturally” during the trip, while ensuring that the desired diversity criteria were met. We took care to reflect this diversity of profiles by interviewing disabled skiers, professionals in the field, and volunteers—both men and women of all ages. Consequently, following a thematic analysis based on data coding (Mucchielli, 1977), I was able to identify similarities in their perspectives or, conversely, genuine contrasts in their discourse.

Wheelchair skiing: How much independence do participants have?

“It’s great because you rediscover the joy of gliding, the joy of going downhill, the joy of finally being able to tackle that bump exactly where you want to.” (Man, quadriplegic)

Autonomy stems from a desire or need felt by a person. If that person can satisfy it on their own, we refer to it as independence. However, if the individual is unable to satisfy it on their own, they will develop a strategy to manage their need. We refer to this as autonomy or interdependence (Loher, 2015). In the practice of adaptive skiing, if the skier cannot operate the wheelchair on their own but develops a strategy to do so—whether through a pilot or other means—then autonomy is indeed present. The wheelchair skier will have had the freedom to choose, thanks to their ability to manage the assistance they need to fulfill their desire. Indeed, some wheelchair skiers seek this autonomy, while others prefer what is known as “recreational” skiing.

“There isn’t really a process of learning true independence. Because as a quadriplegic, I was mostly there to give directions using the highlighters. And they were the ones actually controlling the glide behind me. So they were steering me, but I’d call it assisted steering. I’d set the direction, and he’d adjust the chassis so it would turn where I wanted to go—that’s it.” (Male, quadriplegic)

“Where I want to go”: this is a phrase that shows that the person in question has a desire and that, despite the fact that he cannot do it alone, he devises a strategy to manage his need for assistance—through the guide—and thus become independent. An independent hand-skiier is defined by a guide as “a person who will have needs, and there will be an able-bodied person who will meet those needs. ” As Henrard (2012, p. 156) notes: “Autonomy exists only through relationships of interdependence (or mutual dependence) between people—emotional, economic, and social—throughout the life course.” These relationships are significant in the practice of adaptive skiing, particularly between the adaptive skier and their guide. Whether the disabled skier is seeking thrills or simply wants the guide’s companionship, the guide must adapt to each person’s situation. Beyond the disability itself, it is people’s personalities that vary, leading to a desire for the sensation of gliding slowly or, conversely, the thrill of speed, as well as a desire—or lack thereof—for autonomy. Effective communication and a relationship of trust must be established between the two partners so that the choice freely made by the disabled skier is accepted by the guide. Each plays a key role in this pursuit, which—from the perspective of disabled skiers—is a source of passion for some and a matter of indifference for others who prefer what is known as “recreational” skiing.

Ultimately, as Winance points out, “An autonomous person is not someone who decides and acts alone, but someone whose decision-making power and capacity for action are supported by multiple relationships (social, technical, institutional, symbolic, etc.)” (2007, p. 84). It is therefore through the combination of several factors—such as equipment and the pilot (Reichhart, 2013)—that the para-skiier can achieve a form of autonomy, thereby creating conditions of capability that some authors refer to as “handi-capable” (Richard and André, 2017). The technological and human facilitators mentioned above make it possible to overcome the obstacles encountered daily by people with functional disabilities.

An activity described as “independent” but performed in a dependent manner by the hand skier.

“How do you expect me to become more independent if he’s not there to show me exactly where my limits are?” (Man, quadriplegic)

The concept of dependence for a person with a disability is often defined as the opposite of autonomy (Henrard, 2016). However, he also notes that dependence is not the opposite of autonomy, since interdependent relationships exist between people. This concept of dependence is difficult to define due to the varying meanings attributed to it, depending on the disciplines that study it (Ennuyer, 2022). Henrard proposes the following definition: “Dependence is generally a situation in which the action of a third party is necessary for a person to achieve the goals they have set for themselves” (2012, p. 151). In the context of adaptive skiing, these goals set by the skier thus relate to a form of autonomy discussed earlier. Nevertheless, in order to achieve these goals, the handiski athlete appears to be dependent on certain factors. Indeed, as Fougeyrollas (2011) points out, disability—previously considered a characteristic of the individual (a physical or functional difference)—led to stigmatization or exclusion. However, we now know that environmental factors have a significant impact on the process by which disability is constructed. A person with disabilities is thus confronted daily with external barriers that place them in a “situation of disability”—the opposite of full social participation.

To address these various challenges, we are seeing an increase in environmental accommodations that enable people with disabilities to participate in tourism activities. Reichhart (2013) identifies three types: architectural aids related to the physical accessibility of spaces (chairlifts, access ramps, etc.); technological aids and adapted sports and recreational equipment resulting from technological advances and innovations (wheelchairs for skiing, swimming, etc.), and human facilitators (supportive attitudes, training for instructors, etc.). These three types of factors, on which a disabled skier depends to engage in the sport independently, align with Winance’s definition of the concept of dependency. According to the author, “… a dependent person is one who, following an illness or accident, is no longer able to perform the various activities of daily living (physical, social, etc.) without resorting to assistance” (2007, p. 84). These material, technological, and human aids, tailored to the specific needs of the para-skier, serve to compensate for the para-skier’s disability—more specifically, the functional consequences of their impairments (Perera et al., 2020)—in order to promote their autonomy.

Ultimately, despite what is considered an independent activity, a para-skier is dependent on the equipment and the environment in which they practice, which may or may not be well-suited to their specific needs. Furthermore, there is a significant degree of dependence on the guide. The concept of the para-skier/guide partnership emerged during the interviews. Referred to as a “pair” or “duo,” a strong bond is described between these two individuals, enabling access to a variety of experiences. One para-skier even suggested the term “osmosis” with the guide. Depending on the guide’s training and sensitivity, their behavior may or may not facilitate the para-skier’s transition to a more independent practice. As Winance notes, “… the concept of dependence refers either to a person’s functional disabilities … or to their relationship—more or less intense—with a medical, social, or technical device that compensates for their disabilities” (2007, p. 84). These “disabilities” discussed by the author seem worth analyzing from another perspective: that of “handi-capability.”

A Path Toward Destigmatization

The concept of “handi-capable” offers a new perspective on the body, no longer viewed as incapacitated, but as “capable in a different way” (Richard and André, 2017). In the practice of adaptive skiing, this perspective is fostered by the concept of autonomy mentioned above. As one adaptive skier puts it: “… it completely demystifies everything… where many see a barrier, it’s actually the opposite!” (Male, quadriplegic). Society’s view of disability and the limitations it is thought to impose is thus turned on its head. It is therefore thanks to various factors that the adaptive skier is seen as “capable in a different way” (Richard and André, 2017). This expression, of Mauritian origin, highlights the extraordinary potential of individuals’ so-called “different” but very real abilities. According to Perera and Le Roux, “Expectations of autonomy and athleticism, combined with the inventiveness of para-athletes, create ‘handi-capable’ conditions…” (2021, p. 12). These conditions offer new experiences of the self and one’s body. According to Richard and André (2017), “the ‘handi-capable body’ offers, more than just an ‘augmented human,’ new forms of capabilities. It experiments with new possibilities of ‘being in the world.’ It consequently enables the construction of a distinct identity that affirms a capable self (Perera, Le Roux, 2021).” The person is then seen for their abilities. This shift in perspective would thus enable a certain form of destigmatization regarding disability. As one disabled skier points out, during the activity, “there are no more stares. There is no longer sitting or standing.” Nevertheless, this is not as utopian as one might think.

Indeed, society’s stigmatization of people with disabilities could hinder the self-worth of individuals in ski chairs. According to Goffman (1975), a stigma refers to “an attribute that brings profound discredit” upon the stigmatized person. Whether in the city or in the mountains, it is difficult to avoid these stares because, as Goffman (1963) explains, among stigmatized individuals, there are those who are “discreditable”—meaning their stigma is not immediately visible—and those who are “discredited,” whose stigma is immediately apparent. Being in a ski wheelchair thus reduces the person to a state of discredit. This could be one way of responding to the stares of others (able-bodied skiers, ski patrollers, etc.), which can sometimes be quite tactless.

As one hand skier mentioned during an interview, “That’s where the barrier of disability comes down!” (Male, quadriplegic). Indeed, as mentioned earlier, strong labels are assigned to people with disabilities, creating this “barrier of disability.” These labels lie at the heart of society’s negative perceptions of physical disability. In 2005, Marcellini asserted that what gives meaning to disability are the limitations and social disadvantages associated with it. Nevertheless, a wheelchair skier with quadriplegia mentioned during interviews, “…where people label a wheelchair as a disability, for example, I want to tell you today that it’s a key to many things.”  This is where adaptive skiing could help overturn these prejudices by highlighting the “handi-capable” individual sitting in the wheelchair. As Richard and André put it: “In this sense, the ‘handi-capable’ body constitutes a form of resistance to ableism.” (2017, p. 71). In the practice of adaptive skiing, the “handi-capable” body allows people to ski in a way that differs from traditional skiing. The body is used in an innovative way, going against the grain of social norms. This originality could change society’s view of sports for people with disabilities, particularly in the natural mountain environment.

Ultimately, technological, architectural, and human supports help combat “ableism” (also known as “validism”), which, according to Richard and André (2017), represents a societal dominance of “able-bodied” norms and consequently leads to discrimination against people with disabilities. We thus observe a reversal of dominant bodily norms (challenging conventional ways of behaving) by showcasing alternative ways of engaging with one’s body that adventure tourism makes possible (Perera and Le Roux, 2021). Promoting autonomy through a “handi-capable” view of the body thus helps destigmatize disability by changing society’s perspective on difference.

Conclusion

Ultimately, this research allowed us, first and foremost, to reframe certain preconceived notions, starting with our choice of vocabulary. Indeed, in the field of disability, terms such as autonomy and dependence are used inappropriately by our society. As Winance points out, “The person described intuitively, or by professionals, as ‘autonomous’ is not an isolated individual but a person who constructs themselves and is constructed through their relationships with various systems (Winance, 2001). In other words, they are both dependent and autonomous, or, to put it another way, they are autonomous through the multiple dependencies that define them.” (2007, p. 85). When we apply these remarks to the practice of handiski, we come to understand that this activity is carried out autonomously by handiskiers, yet in a manner that is interdependent on multiple factors. Indeed, technological, architectural, and human supports are necessary for implementing this strategy. The goal of this strategy is to facilitate the choice made by the participant, so that the participant is in a position of autonomy.

Furthermore, these activities help combat “ableism” (also known as “validism”). According to Richard and André in 2017, this term refers to society’s dominance of norms regarding the “able-bodied” body, which consequently leads to discrimination against people with disabilities. We thus observe a reversal of dominant bodily norms (challenging conventional ways of behaving) by showcasing alternative ways of engaging with one’s body that adventure tourism enables (Perera and Le Roux, 2021). The promotion of autonomy, through a “handi-capable” view of the body, thus helps to destigmatize disability. Society’s perspective on difference is transformed.

Finally, the concept of disability examined in this work is part of the field of “disability studies.” Linton (1998) defines disability studies as “restructuring the approach to disability by focusing on it as a social phenomenon, a social construct, a metaphor, and a culture, using a minority-group model. ” (cited by Marcellini, 2005, p. 31). In order to break down the barriers of disability and confront the social construction imposed on difference, it is interesting to consider the practice of adaptive skiing as an educational tool. Indeed, sparking others’ interest and curiosity through sports is an ideal educational tool for challenging prejudices. These prejudices must be challenged through the visibility and awareness of disability, starting at a very young age.

To this end, our results show that it would be beneficial to switch roles, by having an able-bodied person sit in a wheelchair (as is done during wheelchair training sessions). Putting oneself in the shoes of a wheelchair user would allow one to experience the sensations they feel. The able-bodied person is directly confronted with the way others view them, which could then change their perspective on disability. Indeed, finding oneself in a wheelchair as an able-bodied person would be a concrete awareness-raising experience. Furthermore, as a quadriplegic para-skier points out, “I think if able-bodied people were asked to get into a shell—right before standing up—and learn to ski 45 cm off the ground, I’m not sure many of us would be standing on the slopes.” This reversal of established practices would transform not only society’s view of disability but also the world of sports tourism.

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[1] Para-sports involve adapting certain sports for people with physical or sensory disabilities. This should be distinguished from Adapted Sports, which are designed for people with intellectual disabilities or mental health conditions.

[2] It is the first sports organization for people with physical disabilities.

[3] To make skiing accessible, a range of technical and technological innovations has emerged. These innovations enable skiing both standing and seated (in a wheelchair). There are two types of seated skiing: independent skiing for people with lower-limb disabilities who have good trunk control, and assisted skiing for people who are not independent and require human assistance.

^[4] National Center for Textual and Lexical Resources

^[5] Law No. 2005–102 of February 11, 2005, on equal rights and opportunities, participation, and citizenship for people with disabilities. (February 12, 2005). Légifrance, French Republic.

^[6] The Handikraft association, based in Font Romeu, promotes accessibility for all through adaptive skiing.