Between independence and dependence: adaptive skiing as a path toward destigmatization

Wheelchair skiing is an activity accessible to everyone, one that challenges ableist thinking. Indeed, we tend to assume that standing while skiing is the norm because of our “physical abilities.” However, a person with motor disabilities can also enjoy this winter activity while seated—and even with the help of a pilot if they cannot use their upper limbs either. This raises the question of autonomy. Can we describe a para-skier in a chairlift operated by a third party as autonomous? Are they not dependent on various factors? Furthermore, it was interesting to understand how participating in para-sports could help combat societal stigma surrounding disability.  To clarify 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 disabled skiers. Following participant observation and interviews, we realized that disabled 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. Yet, “this strong stigma is so widespread in society that the labeled individuals themselves have internalized it. ” (Ibid., p.15). The person with a disability then does not feel capable of performing certain actions in society, thereby hindering their autonomy.

In order to combat this “discrimination,” our society saw the emergence of the Handisport[1] movement 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 a different, less medical-focused approach. 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 sport were not incompatible (Ruffié, Ferez, 2013). He then founded the 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 “adapted to different impairments and limitations” based on each person’s specific needs. During Philippe Berthe’s time, technical innovations were developed to compensate for the functional consequences of a physical disability, for 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 range of equipment diversified in the early 2000s, making the sport accessible to a wider audience.

Other factors, such as legislation promoting inclusion and the design of ski resorts aimed at accessibility, are evolving to expand opportunities for everyone to enjoy the mountains. One final, and by no means least important, factor is the human facilitator. Indeed, the guide standing behind the handiski chair will play a crucial role, depending on the person’s expectations, in fostering the handiskier’s autonomy. It is through all these factors that the environment for the person with disabilities will become—or not—conducive to their pursuit of the thrill of gliding and/or autonomy, 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 term was defined in 2007 by the CNRTL^[4] as “the ability to determine one’s own course, to choose, 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 points out that the concept of autonomy “is often misused in the sense of ‘functional’ (or ‘physical’) autonomy, understood as the absence of dependence for activities of daily living” (2016, p. 150). It is therefore important to fully understand this concept and to highlight the nuance attached to it.

Given this, can we say that a person with physical disabilities has any form of autonomy? The Act of February 11, 2005^[5]addresses some of our questions regarding equal rights and opportunities, participation, and citizenship for people with disabilities: “A disability, within the meaning of 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 disability thus entails certain complications, both physiological and physical, indirectly hindering the autonomy sought by every human being, as well as creating a dependence on certain factors. Indeed, the need for an adapted handski wheelchair, a pilot behind it, and an adapted environment could constitute a certain form of dependence for the handskier within this so-called autonomous practice.

One might then ask to what extent(s) the destigmatization of disability is possible through the practice of handiski, which is both independent and dependent? After presenting the research methodology adopted, we will see 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 handiskiing 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 reestablished contact with the association with the aim of spending four days with them in March.

In addition to selecting this geographic area, the study population was defined. In this article, we will focus exclusively on individuals with physical disabilities. Although there are various forms of adaptive skiing, I have concentrated on participants who use a chairlift operated by an attendant. 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, notably through an ethnographic methodology. Finally, the fact that I was physically present in my field of investigation allowed me, first, to use observation as a tool and, second, to rely on interviews, which served as my primary 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 subsequently interviewed. A relationship of trust developed with the participants I observed, which gave me access to a wide range 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 based on the respondents’ preferences (hotel, café, 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 biographical interviews (Becker, 1966) and explanatory interviews (Vermesh, 2008), were conducted using an interview guide covering four themes: the respondent’s status; handi-skiing and the joy of skiing; the relationship between the pilot and the handi-skier in relation to the concept of autonomy; and the destigmatization of disability through this practice, referencing the concept of the “handi-capable” (Richard and André, 2017), a notion defined below. The questions and follow-ups were adjusted throughout the study.  The sampling of interviews was conducted “naturally” during the trip, while ensuring the desired diversity criteria were met. We took care to reflect this diversity of profiles by interviewing disabled skiers, industry professionals, and volunteers—men and women of all ages. Consequently, following a thematic analysis based on data coding (Mucchielli, 1977), I observed 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 hitting that bump exactly where you want to.” (Man, quadriplegic)

Autonomy stems from a desire or need felt by an individual. If the individual can satisfy that need on their own, we refer to it as independence. However, if the individual is unable to satisfy that need on their own, they will develop a strategy to manage it. We will refer to this as autonomy or interdependence (Loher, 2015). In the practice of adaptive skiing, if the skier cannot operate the chairlift on their own but develops a strategy to do so—through a pilot or other means—then autonomy is indeed present. The adaptive skier will have had the freedom to choose, thanks to managing the assistance they need to fulfill their desire. Indeed, some adaptive skiers seek this autonomy, while others prefer so-called “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 handling the gliding behind me. So they were steering me, but I’d call it assisted steering. I, I, I set the direction, and he, he steers the chassis so that it turns where I want to go, that’s it.” (Man, quadriplegic)

“Where I want to go”: this is a phrase that shows that the skier 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 skier 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 on an emotional, economic, and social level throughout the course of life.” These relationships are significant during the practice of adaptive skiing, particularly between the adaptive skier and guide pair. Whether the handiskier is seeking thrills or simply desires the pilot’s companionship, the pilot must adapt to each person’s situation. Beyond the disability itself, it is people’s personalities that vary, giving rise to a desire for the sensation of slow gliding or, conversely, sensations linked to speed, as well as a desire—or lack thereof—for autonomy. A genuine effort at communication and a relationship of trust must be established between the two parties, so that the choice freely made by the disabled skier is accepted by the guide. Each of them plays a key role in this pursuit, which, from the perspective of disabled skiers, stems from a desire for some and a lack of interest for others who prefer so-called “recreational” skiing.

Ultimately, as Winance points out, “An autonomous person is not someone who decides and acts alone, but rather 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 disabled skier 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 cross-country skier.

“How am I supposed 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 dependency is not the opposite of autonomy, since interdependent relationships exist between people. This concept of dependency 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 fall under the form of autonomy mentioned earlier. Nevertheless, in order to achieve these objectives, the handiskier appears to be dependent on certain factors. Indeed, as Fougeyrollas (2011) points out, disability, previously considered a characteristic of the individual (physical or functional difference), led to stigmatization or exclusion. However, we now know that environmental factors have a significant impact on the process of disability production. 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 make tourist activities accessible to all people with disabilities. Reichhart (2013) distinguishes three types: architectural facilitators related to the physical accessibility of the space (chairlifts, access ramps, etc.), technological facilitators and adapted sports and recreational equipment resulting from technological advancements 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 achieve independent participation, align with the definition of the concept of dependency proposed by Winance. 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 life (physical, social, etc.) without resorting to assistance” (2007, p. 84). This material, technological, and human assistance, tailored to the specific needs of the para-skier, compensates for their disability—more specifically, for the functional consequences of their impairments (Perera et al., 2020)—thereby promoting their autonomy.

Ultimately, despite the fact that it is considered an independent activity, a hand skier is dependent on the equipment and the environment in which they practice, which must be more or less suited to their specific needs. Furthermore, there is a significant degree of dependence on the guide. The concept of the hand skier/guide partnership emerged during the interviews. Referred to as a “pair” or “duo,” a strong bond is mentioned 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 transition to a more independent practice. As Winance notes, “… the concept of dependency refers either to the person’s functional disabilities … or to their relationship, of varying intensity, 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 disabled, but as “capable in a different way” (Richard and André, 2017). Within the practice of adaptive skiing, this perspective is fostered by the notion 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 imposes is thus turned on its head. It is therefore thanks to various factors that the adaptive skier is seen as “differently capable” (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 allows for the construction of a distinct identity affirming a capable self (Perera, Le Roux, 2021). The person is then seen for their abilities. This shift in perspective would thus allow for 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 casts profound discredit” on 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 people, there are those who are “discreditable”—meaning the stigma is not immediately visible—and those who are “discredited,” whose stigma is directly visible. Being in a ski wheelchair thus reduces the person to being discredited. This could be a way of responding to the stares of others (able-bodied skiers, ski patrollers, etc.), which can sometimes be quite awkward.

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 the negative perceptions of physical disability that society has internalized. In 2005, Marcellini asserted that what gives meaning to disability are the incapacities 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 then help overturn these prejudices by highlighting the “handi-capable” person 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 disabled body allows one to ski in a way different from traditional skiing. The body is used in an innovative way, going against 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 demonstrating alternative ways of engaging with one’s body made possible by adventure tourism (Perera and Le Roux, 2021). The promotion of autonomy through a “handi-capable” view of the body thus enables a form of destigmatization of 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 rather, they are autonomous through the multiple dependencies that constitute them.” (2007, p.85). When we apply these remarks to the practice of handiski, we then understand that this activity is carried out autonomously by handiskers, yet in an interdependent manner with multiple factors. Indeed, technological, architectural, and human aids are necessary for the implementation of the strategy. The purpose of this strategy is to successfully carry out the choice made by the participant, so that the latter 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 made possible by adventure tourism (Perera and Le Roux, 2021). The promotion of autonomy, through a vision of the “handi-capable” body, thus enables a form of destigmatization of 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 this field 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 address the social construction imposed on difference, it is interesting to view the practice of adaptive skiing as an educational tool. Indeed, sparking interest and curiosity in others 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 findings suggest that it would be beneficial to switch roles, placing an able-bodied person 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 gaze of others, which could then change their perspective on disability. Indeed, finding oneself in the wheelchair as an able-bodied person would constitute 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 society’s view of disability as well as the world of sports tourism.

Bibliography

Blanc, A. (2015). Sociology of Disability – 2nd ed. (ARMAND COLIN). ARMAND COLIN.

Fougeyrollas, P. (2011). The Tightrope Walker, the Wire, and the Web: Reciprocal Transformations of the Meaning of Disability. Laval University Press.

Goffman, E. (1975). Stigma: Notes on the Management of Spoiled Identity. Les Éditions de Minuit.

Loher-Goupil, A. (2015). Independence and Motor Disabilities (Chronique sociale, ed.). Chronique sociale

Marcellini, A. (2005). Lives in Wheelchairs (ed. CTNERHI). CTNERHI.

Perera, E., Beldame, Y., & Soulé, B. (2018). Accessibility of ski resorts for people with disabilities: community and material resources to compensate for the limited initiative of mountain resort managers. (Tétraèdre, Vol. 3). Tétraèdre.

Perera, E., and Le Roux, N. (March 17, 2021). Sports Tourism and Health. TEOROS.

Perera, E., Beldame, Y., Soulé, B. (2020). Body, Sport, and Disabilities. In Accessibility of Ski Areas for People with Disabilities: Community and Material Resources to Compensate for the Limited Initiative of Mountain Resort Managers, Vol. 3 (Téraèdre ed., p. 145). Téraèdre.

Reichhart, F. (2013). What Kinds of Tourism for People with Disabilities? (Open Edition Journals, ed.). Open Edition Journals.

Richard R., André J. (2017). “Cyborg and/or ‘handi-capable’? The experience of the ‘capacitary’ body among Cybathlon participants” (Recherche&Education ed.). Recherche & Education.

Ruffié, S., Ferez, S. (eds.), Body, Sport, Disabilities: The Institutionalization of the Disabled Sports Movement (1954–2008), Paris: Téraèdre

Winance, M. (2007). Dependence versus autonomy… On the meaning and influence of these concepts in medical-social practices: Commentary. Social Sciences and Health, 25, 83–91. 

[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 to everyone, a range of technical and technological innovations has emerged. These innovations enable skiing both standing up and sitting down (in a chair). There are two types of seated skiing: independent skiing for people with lower-body disabilities who have good core strength, 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 persons with disabilities. (February 12, 2005). Légifrance, French Republic.

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