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Coping strategies of disabled people facing barriers to their participation in education, vocational training and employment

Stratégies d’adaptation des personnes handicapées confrontées à des obstacles à leur participation à l’éducation, à la formation professionnelle et à l’emploi
Bruno Trezzini, Sabrina Schüpbach, Victoria Schuller et Jerome Bickenbach
p. 73-89

Résumés

En 2014, la Suisse a ratifié la Convention des Nations Unies relative aux droits des personnes handicapées, qui établit comme l’un de ses principes directeurs la participation et l’intégration pleines et effectives des personnes handicapées dans la société. La présente étude examine l’expérience vécue et l’agentivité des personnes handicapées vivant en Suisse en ce qui concerne les stratégies d’adaptation auxquelles elles ont eu recours en réponse aux obstacles à leur participation dans des domaines de la vie tels que l’éducation, la formation professionnelle et l’emploi. Vingt-six personnes représentant quatre groupes de handicaps (mobilité, visuel, psychosocial, intellectuel et développemental) et trois cohortes d’âge (nées vers 1950, 1970 ou 1990) ont participé à des entretiens semi-structurés sur le parcours de vie. Les récits montrent comment les individus ont fait face aux contraintes structurelles de leur participation de différentes manières et en fonction de leur situation individuelle. Toutefois, les stratégies d’adaptation identifiées peuvent être classées en trois grands types (adaptation, évitement et confrontation), qui représentent différentes formes d’agentivité avec des perspectives différentes de démantèlement des contraintes structurelles. L’article examine les implications théoriques et pratiques en ce qui concerne la maîtrise des contraintes structurelles et l’amélioration de l’agentivité et de la liberté de choix des personnes handicapées.

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Notes de l’auteur

Acknowledgements: The authors would like to thank all the participants who agreed to take part in this study as well as all the members of the National Stakeholder Committee for their helpful advice and for their time and effort in helping to recruit interviewees.

Disclosure statement: The authors have no potential conflict of interest to report.

Funding: This research was supported by the Swiss National Science Foundation (grant number 150229) and by Swiss Paraplegic Research.

Texte intégral

Introduction

1The UN Convention on the Rights of Persons with Disabilities (UN CRPD) cites as one of its guiding principles the full and effective participation and inclusion of persons with disabilities in society on an equal basis with others (UN, 2006). The Convention also recognizes that disability is the result of the interaction between a person’s impairment on the one hand and attitudinal, environmental and social barriers on the other. The CRPD closely echoes the World Health Organization’s (WHO) interactional conceptualization of functioning and disability as spelled out in the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001). According to the ICF’s biopsychosocial conceptual model, disability is the outcome of an interplay between a health condition (e.g. injury, disease, disorder), personal factors (e.g. gender, race, age, social background, profession, coping styles) and environmental factors (e.g. physical, social and attitudinal barriers and facilitators) that determine a person’s lived experience of disability (Bickenbach et al., 1999; WHO, 2001).

Structure and agency

2The ICF is primarily a classification for descriptive purposes relating to human functioning and its restrictions. It does not claim to provide a detailed theoretical account of the process of disablement (Bickenbach, 2014; WHO, 2001). However, the various components and the interactional character of the ICF’s conceptual framework are reminiscent of social theories that deal with the ontological status of individuals and societies and with the interdependence between social structure and human agency. Although the most popular of these theories (e.g. Archer, 1995; Bourdieu, 1990; Giddens, 1984; Stones, 2005) differ with regard to the specific mechanisms underpinning the interdependence between structure and agency, they share the basic idea that social structure both enables and constrains human agency, and that human agency in turn both reproduces and changes social structure over time. Environmental facilitators or barriers that enhance or hamper the opportunities for disabled people to participate in society on an equal basis with others, and the strategies that disabled persons resort to in order to leverage available facilitators or cope with barriers they encounter are an instantiation of such structure-agency dynamics (Berger, 2008; Hvinden & Halvorsen, 2018).

Barriers and coping strategies

3Although there is a large body of research on the impact of social barriers on the self-determination and participation of persons with disabilities (e.g. Hästbacka, Nygård & Nyqvist, 2016; Lefebvre & Levert, 2014; Shier, Graham & Jones, 2009; Swain et al., 2004; Wilson-Kovacs et al., 2008), individual coping strategies used by disabled persons in the face of such barriers have been addressed less systematically and comprehensively in disability studies (e.g. French, 2018; Livneh & Martz, 2007; Roulstone et al., 2003). This may be related to concerns that focusing on individual coping strategies may distract from the need to address the disabling barriers at the societal level. As representatives of the disability rights and independent living movement, as well as scholars in the field of disability studies, have pointed out, it is primarily society that must change, not the disabled person (Barton, 2006; Swain et al., 2004).

4Coping strategies should therefore be critically examined not only in terms of their effectiveness at the individual level, but also in terms of their implications and transformative potential for wider social change. Numerous coping definitions, taxonomies and measurement scales have been proposed (Carver, Scheier & Weintraub, 1989; Livneh & Martz, 2007; Skinner et al., 2003; Thoits, 1995). Specific coping strategies, such as planning, seeking social support, acceptance, behavioral or mental disengagement and denial (Carver, Scheier & Weintraub, 1989), have been subsumed under various overarching categories, including problem-focused vs. emotion-focused coping (Lazarus & Folkman, 1984), or active vs. passive/avoidant coping (Hartley & MacLean Jr, 2008). The type and effectiveness of personal coping strategies depend on individual disposition, resources available and the nature of the barrier encountered. Or as Pearlin and Schooler (1978: 18) aptly summarized the constraining influence that society can exert on personal coping efforts:

[…] what people do or fail to do in dealing with their problems can make a difference to their well-being. At the same time, there are important human problems, such as those that we have seen in occupation, that are not responsive to individual coping responses. Coping with these may require interventions by collectivities rather than by individuals. Many of the problems stemming from arrangements deeply rooted in social and economic organization may exert a powerful effect on personal life but be impervious to personal efforts to change them. This perhaps is the reason that much of our coping functions only to help us endure that which we cannot avoid. Such coping at best provides but a thin cushion to absorb the impact of imperfect social organization.

Purpose of the study

5The present study pursued a twofold objective. First, we wanted to identify the coping strategies that disabled people living in Switzerland resorted to in the face of barriers that reduced their chances of full and equal participation in education, vocational training and employment. We focused on these three interdependent areas because they are important prerequisites for disabled persons to realize their full potential and lead self-determined lives. Second, we aimed to outline the theoretical and practical implications of the study findings in terms of overcoming structural constraints and improving the agency and freedom of choice of disabled people.

6As such, this article contributes to the still relatively limited research on coping strategies of disabled people. It also contributes to scholarly debates about the interdependence of agency and structure by highlighting the importance of examining personal coping strategies both in terms of their impact on the person’s scope for agency and choice, on the one hand, and their impact on barriers and social structures, on the other. It also reminds us of the importance of collaboration among disabled persons, advocacy groups and researchers to simultaneously make individual coping more successful and social structures less disabling.

The Swiss context

7Before turning to the study participants and the method of analysis in the next section, we briefly describe important elements of the Swiss Disability Insurance (IV), and Swiss disability policy in general, to provide some context. The IV is a compulsory insurance system that has been in place since 1960 and covers the entire resident and working population of Switzerland (Dudle-Ammann, Dummermuth & Lindenmann, 2019). It is administered by the state and financed mainly through a payroll tax paid equally by employees and employers, as well as additional public funding from the federal government. The IV also provides for partial disability, meaning that the amount of the disability pension is based on the extent of disability and the person’s remaining earning capacity.

8In accordance with its guiding principle “integration before pension,” the IV not only provides cash benefits in the form of disability pensions, but also finances a wide range of additional disability benefits such as medical treatment, integration measures, occupational measures, assistive devices and daily allowances during retraining (see www.ahv-iv.ch/de/Sozialversicherungen/Invalidenversicherung-IV). Occupational measures include vocational counselling, job placement and subsidies for (re)training and continuing education (Informationsstelle AHV/IV, 2018). In the case of initial vocational training, the IV covers the additional costs incurred by insured persons due to their disability. Initial vocational training includes apprenticeship training, attendance at a secondary, technical or higher education institution, training for activities in the home and preparation for unskilled work or for work in a sheltered workshop. The IV covers the entire costs of retraining if insured persons can no longer perform their previous job due to a permanent health impairment, or can only do so under untenable conditions.

9In addition to the federal law that led to the establishment of the Swiss Disability Insurance in 1960, the disability equality law (BehiG, 2020), which came into force in 2004, was an important milestone for disabled people living in Switzerland. It also prepared the ground for the federal government’s ratification of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) ten years later. The law defines and prohibits discrimination against people with disabilities in social life and in vocational education and training. However, it does not establish legal rights for disabled people against employers in the private sector (except in relation to architectural changes if the company employs more than 50 people) (Schefer & Hess-Klein, 2014). Unlike several other European countries (e.g. Italy, France, Germany or Austria), Switzerland does not have a quota system that would oblige employers to hire disabled people or to pay a fine for non-compliance. In the field of education, equality for people with disabilities often fails due to inaccessible educational opportunities. The disability equality law is part of the legal framework that provides for formal adjustments in education and training, also called “disadvantage compensation” (SDBB, 2013). Such adjustments are intended to compensate for disadvantages caused by a particular disability. Essentially, this involves the possibility of using disability-specific aids in class or during exams, or receiving personal assistance if required.

10Until recently, the Swiss federal government did not have a coherent and explicitly formulated disability policy, let alone an employment policy for disabled people. However, following the ratification of the UN CRPD in 2014, the federal government took several initiatives, such as holding a national conference on the labour market integration of disabled people (EDI, 2017b), which eventually led to the formulation of Switzerland’s first official disability policy (Bundesrat, 2018; EDI, 2017a). Equal opportunities in the labour market is one of its stated political priorities, which is underlined by the CHF 2.2 million per year specifically earmarked for finding effective means to promote the labour market integration of disabled people.

Method

Study background and participants

11This study was undertaken as part of the collaborative research project “DISCIT – Making Persons with Disabilities Full Citizens” (Halvorsen et al., 2018; Halvorsen et al., 2017). To investigate the conditions and extent of active citizenship of persons with disabilities living in Europe, life course interviews were conducted in nine countries, focusing on life domains such as education and vocational training, employment, living arrangement, leisure time activities or political participation (Halvorsen, Klette Bøhler & Šiška, 2018). The present study examines the reactions and coping strategies of the Swiss DISCIT participants with respect to environmental barriers that they encountered in connection with their participation in education, vocational training and employment (Trezzini et al., 2021).

12Twenty-six disabled persons living in Switzerland participated in the life course interviews for the DISCIT project. We initially recruited three participants (P70F*, I90M*, M70F*) who did not meet all recruitment criteria (year of birth, impairment, gender, onset of impairment before the age of 20) perfectly. In two cases (I90M*, M70F*), we later found participants matching the criteria more closely. The first letter in the identification code refers to the impairment group (P = psychosocial problems, S = seeing difficulties, I = intellectual/learning difficulties, M = mobility difficulties), the number stands for the generation (50 = born around 1950, 70 = born around 1970 and 90 = born around 1990) and the last letter represents the gender (F = female, M = male). Stratified purposeful sampling (Patton, 2002) was applied to ensure that a balanced number of men and women were represented from the aforementioned three age cohorts and four impairment groups. We recruited participants through newsletter advertisements and snowball sampling. Most participants had either congenital impairments or acquired impairments before the age of 20. In the case of two participants (one with mobility impairment and the other with psychosocial problems), the impairment set in when they were in their mid-twenties. Several participants lived with or had experienced different impairments throughout their lives but were grouped according to their self-declared primary impairment.

Data collection and analysis

13We used semi-structured interviews to elicit narratives about the facilitators and barriers that enhanced or hampered interviewees’ participation in various domains across their life course. For participants with an intellectual impairment, an easy-to-read version of the topic guide was available. We obtained written informed consent from all participants. All interviews were conducted in 2014, audio-recorded and transcribed verbatim. For the present study, we focused on the participants’ accounts on how they reacted to and dealt with barriers they had encountered. The interviews were analyzed qualitatively by means of (1) a directed content analysis (Hsieh & Shannon, 2005) applying an analytical framework informed by the ICF (WHO, 2001) to identify barriers and (2) a subsequent thematic analysis (Braun & Clarke, 2006) to identify and categorize coping strategies employed. All interviews were conducted by VS. The coding and interpretation were done by VS (focusing on coping strategies in work life) and SS (focusing on coping strategies in other life areas) in consultation with BT.

Findings

14Our analysis revealed several distinctive responses and coping strategies that study participants resorted to when they encountered obstacles to their participation in education, vocational training and employment. These strategies can be roughly divided into the following three general types: (1) adapting to or living with the barrier, (2) avoiding or sidestepping the barrier, and (3) confronting or challenging the barrier (see Table 1). These modes of coping differ primarily in terms of: (a) the focus of adaptation (i.e. person vs. barrier); (b) the remaining influence of the barrier on the person concerned (i.e. persisting vs. ceasing); (c) the impact on the barrier and its social underpinnings (i.e. perpetuating vs. transformative); and (d) the impact on the scope for personal agency (i.e. disempowering vs. empowering) and choice (i.e. limiting vs. enhancing).

Table 1: Characteristics of different coping modes and strategies

Table 1: Characteristics of different coping modes and strategies

15It must be stressed that both the specific coping strategies and their categorization into three separate modes represent ideal types. In practice, the different coping modes and strategies are not mutually exclusive, and their delineation is not always clear-cut, but a matter of degree and perspective.

Adapting to or living with the barrier

16We identified three strategies of adapting to or living with the barrier or obstacle: (1) accepting, (2) complying and (3) enduring. These strategies usually do not involve direct attempts to remove the barriers, but rather result in the individual adapting to the circumstances.

Accepting

17Not all obstacles have their origin in the physical or social environment. Some interviewees perceived the impairment itself as the main obstacle in certain situations and had to accept that they were not able to do what they had originally wanted to do professionally. For example, two participants (S50M, S70F) felt that the impairment was too great an obstacle to pursuing their original career aspirations because they would not have been able to meet essential professional requirements or expectations. One study participant with a visual impairment told how she became more aware of the limitations associated with her impairment when she was thinking about her career options towards the end of compulsory education:

That not all professions one considered to be great were possible due to the disability. For example, I would have liked to become a physician. But for this I simply do not see enough, and so I thought I become a nurse. And then someone showed me once a syringe with a measuring scale on it and I had to say: “Okay, I am not able to read it.” And not everyone’s veins are as clearly visible as mine – so, nurse didn’t work either. And so I decided then to attend grammar school. (S70F: 314)

18A young female wheelchair user similarly described how she ruled out certain types of work due to her impairment:

And sitting in a wheelchair, there do not exist many possibilities for work. My dream job would have been to be a professional in the hotel sector. Unfortunately, this does not work in the wheelchair. Or some craft. I would have liked to work in construction or as a landscape gardener, but all that does not work. In fact, I never really thought about it, because I already knew that this is not going to work. (M90F: 110)

19These two interviewees described how they had come to terms with the infeasibility of some jobs due the limitations imposed by their impairment and how they had adjusted their expectations regarding the career options available to them. Their reaction and coping strategy were thus an individual adaptation and acceptance of the circumstances. This may reflect a strong sense of reality, but it is unclear whether accommodations by means of “job tailoring” or “job carving” were ever considered.

Complying

20Some study participants (M50M, M70F, S90M) indicated that they started to work in a specific occupation or in a specific field recommended by vocational counsellors or relatives, although they themselves might have preferred other professions. Participants may have chosen an occupation that required skills in high demand and promised better career prospects. This was the case with M50M, who graduated in mathematics because his vocational counsellor felt that there would always be a need for mathematicians. Only later in his professional life did the interviewee succeed in pursuing his passion for the arts and journalism. Similarly, a young male participant with a visual impairment eventually concluded that it would be better to first complete an apprenticeship in the arguably more suitable commercial sector than in the IT sector:

I also did two or three trial apprenticeships in the information technology sector. I would have liked that very much. But ultimately, I simply also thought: “In the end, it may well be the easier way to first complete a commercial apprenticeship. You get a good basic education on which to build on.” […] As such, I think that, at the end of the day, it was good that I did it this way. (S90M: 76)

21Eventually, the participant managed to move into the IT support business and completed a diploma of higher education in this field. In the case of M70F, however, the Swiss Disability Insurance made it very clear which profession to choose:

It was also significant in my case that the Disability Insurance told me which career I had to choose. I would have liked to train in the arts. And one [i.e. the Disability Insurance] just told me: “You can do a commercial apprenticeship or go to a sheltered workshop.” I then did a commercial apprenticeship, but basically slid from one mental crisis to the next. [Interviewer: Because of the dissatisfaction with the job?] Yes, and because I did not receive any support to learn another trade. (M70F: 10)

22Ironically, it was only after she left the labor force and started living off a disability pension that this participant was able to pursue her artistic interests. At the beginning of their professional careers, these three respondents made choices based primarily on rational and pragmatic considerations, with a strong element of compliance with the expectations and assessments of others. Vocational counsellors in particular can play the role of both reality check and facilitator. However, they can also become barriers if they rule out possible alternative scenarios too quickly.

Enduring

23There may be times when a person is not satisfied with their work situation but nevertheless decides, or is forced, to continue until circumstances improve or become unbearable. The term “enduring” can perhaps best sum up such a reaction. In such a situation, there may be, on the one hand, no adaptation at either the individual or the environmental level. This was the case, for example, with S70F, who commented on the mismatch between the content of her job and her professional interests as follows: “I am now trying to do it for as long as it works. But I hope it will come to an end one day” (S70F: 82). On the other hand, the adaptation may involve adjustments on the individual’s side only, with potentially negative long-term side effects, as in the case of P90F, where the demands of the job made it necessary to reduce her medication in order to increase her work productivity:

At the moment I am subordinating everything to work. I take medication because of my pain. But when I started to work more, I realized: “Wow, my concentration sucks. I am not able to work like this.” Therefore, I had to reduce the medication. I now achieve a more or less acceptable quota. […] But especially my personal life has simply shrunk to zero. I usually come home and just need to lie down. That’s it. […] And also the household work does not get done during the whole week. I don’t do anything, until Saturday, until a day comes when I have some energy again for myself. (P90F: 64)

24One way of taking action against an intolerable work situation or unfair treatment would be to express one’s dissatisfaction through a complaint. However, due to its perceived ineffectiveness, some respondent considered this a waste of time: “I do not think it would have achieved anything” (P90M: 446). Or as S90M put it: “No, [I never complained], because I thought this is somehow useless, because at the end of the day one cannot change much. I mean, it would even be wasted time, right?” (S90M: 383-4).

Avoiding or sidestepping the barrier

25This mode of coping involves strategies aimed at avoiding a barrier so that it no longer plays a role in the life of the person concerned. This can mean, for example, to leave a disabling work situation behind by quitting or to pursue one’s original goal via alternative paths. In doing so, the affected person often requires personal determination and the ability to mobilize support.

Quitting

26Quitting is arguably the most obvious and straightforward way to avoid an undesirable work situation (I90F, P70M). In our sample, it often occurred in connection with a deterioration in health caused by the work situation (S70F, M70F, M50F, I90M*, I50M, P70F, P50M). If one resorts to this strategy, one does not simply accept or adjust to the barrier encountered. Instead, one tries to avoid it and its adverse effects. The barrier as such is not removed, but it no longer plays a role in the person’s life.

27For instance, a participant with cognitive difficulties and mobility limitations (I50M) delivered flowers on foot, which was a very hard job for him. Even after he got a driver’s license, he continued to deliver flowers on foot. As he experienced ever more pain, he went to the doctor for treatment, who prescribed morphine. Eventually, the situation became unbearable:

And then I thought to myself: “You can kiss my ass, really.” And I told myself: “I rather do not want to earn any money. I don’t give a shit. I’d rather do something that makes me happy.” Then I did for nearly ten years patient transfers for the Red Cross. By car. (I50M: 56)

28Some interviewees stated problems with their boss, workplace conflicts or unfavorable employment contracts that eventually led them to quit their job (P70M, S50M). When asked how his relationship with his boss and work colleagues was like, I90M* replied:

Partly the relationship to the coworkers was good, very good – and with the bosses. Partly it was not so good. […] Because there were partly some special people. […] Partly, I could not get along with them. […] This is also a reason why I finally left. (I90M*: 236-42)

29The interviewee found no way to deal with the situation and, therefore, decided to avoid further exposure by quitting. Another participant explained that her boss did not take her seriously and treated her unequally compared to her coworkers. When she had to take on much more work and was at the end of her tether because of her health problems, her boss did not allow her to take time off. By contrast, a coworker was granted a time-out a few months later, which was very frustrating for the interviewee (M50F):

I had a good contact to the colleagues. And also, yes, actually on an equal footing. I mean, not that I felt inferior to them in any way. What I occasionally felt, especially after the change of bosses, was that the new boss did not take me seriously at all. And that’s why I finally left. (M50F: 91)

30A boring and unchallenging job can also turn out to be a barrier. As I50M commented on a job that he eventually quit: “I would have been very happy if they dismissed me. It really was a job I really didn’t like; it was not necessary to use the brain” (I50M: 188-90). Other participants quit their original employment path because they lost their confidence due to constant rejections in the application process (P90F). Some even received job offers but did not accept them in the end due to a lack of self-confidence caused by their impairment (M50M).

Circumventing

31Sometimes it is possible to circumvent a barrier by taking a different path to reach one’s original goal, or by substituting the original goal with an entirely new one. Some interviewees pursued alternative career strategies in the face of difficulties directly related to their impairment or to some dissatisfaction with their job or work situation (M70M, S50M). For example, a middle-aged woman with a visual impairment commented: “Finally I trained as a medical masseuse but could not work on the job because I did not have the physical capacity. And then I studied law at the university” (S70F: 2). In the course of the interview she further explained:

Yes, [training as a masseuse] was a compromise because after two rejections because of my visual impairment, it was … In retrospect, I have to say I should have gotten a lawyer. Because it was very, very mean. It was really cruel, and then I didn’t dare to start anything more challenging. (S70F: 41-2)

32To avoid obstacles successfully by pursuing an alternative avenue, interviewees often relied on self-help to mobilize resources. Many participants (S90F, S90M, S70F, S50F, S50M, M90F, M70F, M70M, M50M, M50F, P70M, P50F) asked family members, friends or other disabled persons in a similar situation like themselves for help when requiring support, assistance or information in order to overcome an obstacle. The importance of self-help in becoming aware of other possibilities or paths to pursue was highlighted in particular by persons with psychosocial difficulties (P70F, P70M, P50M). Some interviewees had to rely very much on themselves and their personal determination and willpower when looking for strategies to solve the situation. For example, P50F recounted that the mental hospital where she was staying had forced her to sign an application with the Swiss Disability Insurance before allowing her to leave the hospital for the weekend. She eventually received a disability pension, but to her surprise labor market integration was never brought up:

No one ever spoke with me about labor market integration. They simply gave me the disability pension. If I had not put so much empowerment, so much effort into it, I would never have got to where I am now. Instead, I would also be whining and complaining about my situation, and I would not be integrated into society. But this was all personal strength. The Disability Insurance provided no support, no social worker, nothing at all. I had to develop the personal power. (P50F: 14)

33While getting help from relatives, careers officers or psychologists can play a positive role in overcoming barriers (S90F, P70M), one might find it at times preferable to ignore such help:

I had a lot of good people around me. And I just ignored those who somehow stopped me. Well, I also knew that they wouldn’t take me any further and that I shouldn’t get too engaged with them. I cold-shouldered the ones that blocked me. I knew that they will not be helpful for my future, therefore I did not get involved too much with them. (M90F: 160)

Confronting or challenging the barrier

34This coping mode refers to an individual’s more or less active and directed attempt to confront and challenge an encountered barrier. One can differentiate between two strategies, depending on whether a person was able to follow through eventually with their initial plan by, as it were, cutting through or pushing away the barrier or on whether he or she had to exert more persistent and targeted efforts towards overcoming and dismantling the barrier.

Following through

35If someone tries to follow through with their plan and envisaged path, they do not try to avoid the barrier and look for other possibilities. Rather, they persevere until such a change occurs that makes it possible to achieve the goal. This presumes that one does not give up already at the outset, and it can require a lot of effort, time and willingness to stand one’s ground and prove one’s worth (P50M, P90F, P70M, S90F).

36One interviewee commented on how eager he had been at the time to start an apprenticeship as a design engineer despite the challenges involved: “And then for the first time in my life I was so committed to something that was not related to sports. And I said to myself: ‘I want to do that now. I will do that and I will give everything I can’.” (M90M:164). Receiving support by his teacher at school and subsequently by his boss at the workplace were instrumental for eventually succeeding.

37Some participants simply ignored the skepticism of relatives and professional counselors when pursuing their employment goals (M90M, M50F, S90F, S90M, P70M, P50F). Yet others shared how they had to learn to assert themselves and to be self-confident, which could be a frustrating process to go through (P50M, P70M). Sometimes other people thought they knew what was best for the disabled person, as the following quote illustrates:

I did notice that what is good for me and what I do was somehow determined from the outside. And it is all just because of my impairment. So I have to decide at 15 what would be reasonable considering my impairment. And I always said to myself: “I do not want that. I am first going to learn something that I like and want to.” Because later in my life there will be enough things I will have to do due to my impairment. That is the reason why I asserted myself, and also thanks to my special needs teacher, who supported me a lot so I could follow this path. And, yes, I succeeded. I am very happy about it. In hindsight, I do think that I could have attended college, but I did not want to. I never felt like it. (S90F:74)

Resisting

38By “resistance,” we understand the decision of a disabled person not to accept things as they are, but to actively try to remove an obstacle that prevents him or her from achieving a certain goal. This strategy typically requires considerable resources in the form of personal determination and/or external support. It is often triggered by a decision or treatment perceived as unfair, usually involving government agencies (e.g. the Swiss Disability Insurance) and employers, but also coworkers (I70F*, S70F). For example, one participant successfully resisted attempts to send him into retirement at the age of 40:

However, suddenly, after three months, they thought to send me into retirement. At the time, I was 40 years old. I had to go to the hospital to see a professor. I told him: “How dare you! Why do you want me to go into retirement now? I am still able to work.” Then he told me: “That has never happened before that anyone has said that.” However, this would have been the end for me, I think. And then I could really go on working and I still achieved a lot. (P50M:64)

39In the case of one interview partner (S70F), the board of a physiotherapist school refused to admit her even though she had passed the entrance exam and provided excellent references. She tried to fight against the decision, but the school prevailed. Another interviewee stated missing support and feedback by a supervisor as a barrier to reach her full potential:

He just had a quick look at it: “Good. I will give you a 5.5 [with the highest mark being a 6], because I am always satisfied with your work.” Then I told him: “That is nice, but I now do not know where to improve. I am certainly not perfect, and I need to know where to improve.” “For such stuff I do not have the time.” And this is a pity. I told him as well in my exit interview that I am a very self-reliant person, but someone who is much more dependent would be happy if someone would tell him how, where and what to do, like a guideline. And I told that to the school authorities as well. (M90F:148)

40Direct confrontation, such as starting a discussion with those responsible for the barrier encountered, were common strategies for dealing with the problem and achieving the desired goal (S90F, S70F, P90M, P70M, P50F, M70M, M50F). One study participant made it a point to always be forthright with people about what she felt: “I experienced little discrimination. Well, I defended myself. I just told people if I did not like something. And it was mostly the case that they said: ‘Yes, you are right’.” (M50F:115). However, resistance also expressed itself in a more emotional way, e.g. through recalcitrance or an outburst of rage (P90M: 157-8, I70F, I50M). If these strategies do not lead to an acceptable outcome, one may go to court to fight for one’s rights (P90F, P70M, P50F, M50M, S70F). One interviewee, for instance, challenged all negative decisions of the Swiss Disability Insurance (e.g. like her entitlement to a daily allowance), and even went to court, with a success rate of about 50 % (S70F). Furthermore, a person may decide to fight for the rights of persons with a disability in general by becoming part of a self-help or an advocacy group (M70F, M70M, M50F, M50M, P90F, P50F, P50M, P70F, S70M).

41“Resisting” is similar to the strategy of “following through” in the sense that the original goal is maintained. However, the goal is pursued in a more assertive or confrontational manner. The motivation for confronting a barrier is also still predominantly personal. Directly challenging the barrier, however, can be of broader significance as it is more likely to raise awareness and gradually change social structures and institutions, which also benefits other disabled people.

Discussion

42This study examined the coping responses and strategies used by disabled people when facing barriers to their participation in education, vocational training and employment. We identified three broad groups of coping strategies that differ in their potential to expand the scope for personal agency and to effectively dismantle an encountered barrier and its social underpinnings. Our findings corroborate previous research on coping strategies in general and with regard to disabled people in particular. They add the insight that coping strategies can be meaningfully placed within an agency-structure framework. Furthermore, they serve as a reminder that improving the lives of disabled people requires both coping support at the individual level and structural changes at the societal level. Future research should also address the precise circumstances and processes that lead to specific types of coping strategies.

43Our typology of coping modes is in tune with the conceptual and empirical categorizations of coping strategies proposed by previous research. When people are confronted with a stressful situation, they have to deal with both the problem at hand and the emotions associated with it, and they can do so in a more direct or indirect way. For the general population, researchers have conceptually distinguished between problem-focused and emotion-focused coping (Lazarus & Folkman, 1984) or between engagement and disengagement (Carver & Connor-Smith, 2010) coping. Similar distinctions between active and avoidant coping have been applied in the case of chronic illness and disability in general (Moos & Holahan, 2007) and of people with intellectual disability (Hartley & MacLean Jr, 2008), mental illness (Robilotta, Cueto & Yanos, 2010) or severe brain injury (Karlovits & McColl, 1999) in particular. Although they do not focus on coping with disability but with hardship caused by the “Great Recession” of 2007-2009, Dagdeviren and Donoghue (2019) suggest three different types of agency – absorptive, adaptive and transformative – that reflect similar considerations to our typology.

44With regard to disabled people living in Switzerland, our results are comparable to those of two other recent studies. Pfister et al. (2018) examined coping strategies and resources in the face of participation barriers as experienced by 23 interviewees with physical, intellectual or mental impairments. They identified five main ways of dealing with participation barriers: non-functional coping (e.g., a person stops washing activities if he or she lacks the money for the minimum amount to load the wash card), self-stigmatization (e.g., “I am too stupid for this”), reframing/acceptance, seeking support, and self-determined/independent problem solving. Piecek et al. (2019) recently examined the reactions of people in the process of certifying their disability and their participation in rehabilitation programs of the Swiss Disability Insurance. They distinguished between three ideal types of reactions with regard to the (re)assignation of identity and professional status: compliant, pacified, and rebellious, with the last showing greatest potential for challenging the status quo.

45Disengagement and avoidance are often perceived as maladaptive coping strategies, but this is not necessarily the case. For instance, when people have little control over the stressful situation and environment, either due to their personality or due to a lack of sufficient resources to change the situation, then disengagement and avoidance may represent the only options (Hartley & MacLean Jr, 2008). Although our study participants with intellectual difficulties appeared to make less frequently use of transformative coping strategies compared to people with mobility or psychosocial difficulties, few other salient differences across impairment types, gender or age groups were found. There appeared to be a slight tendency for older people to resort more frequently to transformative strategies than the two other age groups. This result is line with similar findings by Amirkhan and Auyeung (2007), who showed that their five age groups used the same types of coping strategies but to a different extent, with older people using problem solving more extensively than avoidance.

46Disabled people differ from each other in terms of preferred coping styles or available resources they can draw on when faced with challenges arising from their natural or social environment. In their outlook on life, some people prefer to focus on their personal agency and resourcefulness in achieving their goals rather than to dwell on social structures and demand system-wide changes (Berger, Feucht & Flad, 2014: 16, 101). Some may possess an “advocacy identity” (Malhotra & Rowe, 2014: 111, 118) that encourages them to stand up for their own rights and needs (e.g. workplace accommodations) or to engage in disability activism to achieve improvements for disabled people in general. From a disability advocacy and social model perspective, the focus on individual adaptation and coping could be seen as a distraction from the fundamental institutional changes needed to effectively improve the lives of disabled people. For instance, some scholars (Halvorsen et al., 2018) consider individual coping strategies as an inferior substitute for social mobilization and as part of a vicious cycle involving social misrecognition, self-blame and discretionary help and assistance.

47It is clear that personal coping strategies are no substitute for the removal of barriers or for structural changes (Owen Hutchinson, Atkinson & Orpwood, 1998: 93). In fact, this is not an either/or question. In order to achieve effective social change, the mutually constitutive link between social structure and human agency requires interventions in both areas simultaneously (e.g. helping disabled people to pursue transformative coping strategies and promoting collective efforts to scrutinize existing social structures; see Figure 1). This in turn requires an active exchange (e.g. between self-help groups and advocacy groups) with regard to the lived experience of disability on the one hand and awareness of disability rights on the other. The importance of social organization and institutional arrangements as contexts of individual coping has also been recently emphasized with regard to chronic illness in times of fiscal austerity (Potter et al., 2018).

Figure 1. Enhancing the scope for participation of disabled persons by targeting both personal agency and social structures

Figure 1. Enhancing the scope for participation of disabled persons by targeting both personal agency and social structures

Note: * Carrie Sandahl referred to “disabled margins” in her keynote address entitled “Disability art and culture: Making a case for inhabiting fully both the mainstream and the margins” at the 2017 ALTER conference held in Lausanne, Switzerland. It is often on the social fringes that innovations emerge that truly challenge and transcend the mainstream.

Conclusion

48Disabled people use a variety of coping strategies in response to barriers they encounter when participating in education, vocational training and employment. Individual coping takes place within and in interaction with the physical and social environment. Not all coping strategies have the same transformative potential, and not all disabled people are able or willing to resort to strategies that are confrontational and/or transformative. In order to improve the well-being of disabled people and to effectively expand the scope for their participation in society, interventions are necessary both at the level of individual coping and at the level of social structure.

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Table des illustrations

Titre Table 1: Characteristics of different coping modes and strategies
URL http://journals.openedition.org/alterjdr/docannexe/image/1234/img-1.jpg
Fichier image/jpeg, 153k
Titre Figure 1. Enhancing the scope for participation of disabled persons by targeting both personal agency and social structures
Légende Note: * Carrie Sandahl referred to “disabled margins” in her keynote address entitled “Disability art and culture: Making a case for inhabiting fully both the mainstream and the margins” at the 2017 ALTER conference held in Lausanne, Switzerland. It is often on the social fringes that innovations emerge that truly challenge and transcend the mainstream.
URL http://journals.openedition.org/alterjdr/docannexe/image/1234/img-2.jpg
Fichier image/jpeg, 165k
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Bruno Trezzini, Sabrina Schüpbach, Victoria Schuller et Jerome Bickenbach, « Coping strategies of disabled people facing barriers to their participation in education, vocational training and employment  »Alter, 16-3 | 2022, 73-89.

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Bruno Trezzini, Sabrina Schüpbach, Victoria Schuller et Jerome Bickenbach, « Coping strategies of disabled people facing barriers to their participation in education, vocational training and employment  »Alter [En ligne], 16-3 | 2022, mis en ligne le 05 octobre 2022, consulté le 08 juillet 2025. URL : http://journals.openedition.org/alterjdr/1234 ; DOI : https://doi.org/10.4000/9ifd

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Auteurs

Bruno Trezzini

Swiss Paraplegic Research, Nottwil, Switzerland, and Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
trezzini[at]gmail.com

Sabrina Schüpbach

Swiss Paraplegic Research, Nottwil, Switzerland
sabrina-schuepbach[at]gmx.ch

Victoria Schuller

Swiss Paraplegic Research, Nottwil, Switzerland
vickysophie[at]outlook.de

Jerome Bickenbach

Swiss Paraplegic Research, Nottwil, Switzerland, and Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland
jerome.bickenbach[at]paraplegie.ch

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