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Expanding Opportunities for Work and Citizenship: Participation of People with Intellectual Disabilities in Voluntary Work

Authors:

Line Melbøe ,

UiT, The Arctic University of Norway, NO
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Stefan Hardonk

University of Iceland, IS
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Abstract

This article discusses the findings of a study into how voluntary work provides opportunities for work inclusion and citizenship for people with intellectual disabilities. The study is based on qualitative interviews with 12 people with intellectual disabilities engaged in voluntary work in Iceland and Norway. Based on collective qualitative analysis, opportunities for meaningful social relations, competence, contribution and belonging were identified as key aspects of the participants’ experiences of volunteering. The study indicates that voluntary settings offer work that recognises the diversity of preferences, expectations and skills among people with intellectual disabilities. The study’s findings point to the importance of rethinking the meaning and boundaries of work, as participation in voluntary work provides opportunities for both inclusion and citizenship in addition to the participants’ participation in other work settings.
How to Cite: Melbøe, L. and Hardonk, S., 2022. Expanding Opportunities for Work and Citizenship: Participation of People with Intellectual Disabilities in Voluntary Work. Scandinavian Journal of Disability Research, 24(1), pp.109–121. DOI: http://doi.org/10.16993/sjdr.837
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  Published on 29 Mar 2022
 Accepted on 07 Mar 2022            Submitted on 18 May 2021

Introduction

Today, the conception of work has become synonymous with paid employment (Edgell & Granter 2019), and this conception is also prevalent in empirical studies (Taylor 2004). Furthermore, Abberley (2002) points out that political discourse in Western countries relies heavily on an approach that treats work and employment as key aspects of citizenship. It emphasises helping disabled people get into work and making workplaces accessible from a perspective of social integration (e.g., European Commission 2017). This discourse is problematic for a number of reasons. Reducing social inclusion to participation in work and employment may lead to the continued exclusion of disabled people from citizenship, as it has been demonstrated that disabled people experience barriers to employment that lead to lower employment rates compared to non-disabled people (OECD 2010). Abberley (2002) argues that even if all barriers to paid employment were removed, some disabled people still would not be able to get jobs. In addition, technological developments and automation will soon reduce the number of low-skilled jobs, which will affect disabled people, among others, who on average have lower levels of education.

Research into disabled people’s experience of employment has also questioned the assumption that participation in work leads to social inclusion. Hall (2004), for example, demonstrates how people with intellectual disabilities experience exclusion and marginalisation in the workplace, and a more recent study by Mik-Meyer (2016) shows that discourses of inclusion do not preclude the othering of disabled people in the workplace. We argue that this implies a need for understanding how work that is not valued on the market contributes to disabled people’s social position and participation. This draws attention to the issue of social inclusion in work in its most general sense, or ‘work inclusion’, which is the subject of the empirical study on which we report.

The issue of work as a key condition for social inclusion and access to citizenship should also be understood within a historical context. The so-called standard contract of employment that emerged in Western welfare states after the Second World War and which emphasised stability and security (Freedland 2013) has increasingly paved the way for flexible and insecure work arrangements with limited legal protection and precarious working conditions (Schoukens & Barrio 2017). The Nordic countries have put emphasis on combining high flexibility in the labour market with strong social security institutions (Bredgaard & Madsen 2018; Rasmussen et al. 2019). These changes show the need for a new understanding of what constitutes work and employment and how it relates to citizenship for all in society, including disabled people (Abberley 2002).

The discourse on employment as a key aspect of citizenship renders other forms of work, such as voluntary work and unpaid domestic care, invisible, thus oversimplifying the complexity of people’s working lives and work identities (Taylor 2004). This underpins calls by feminist scholars to rethink the meaning of work and the way in which social roles are valued. Approaching work as a social construct and a product of specific cultural and historical conditions (Edgell et al. 2019) shifts our attention towards how work is understood in relation to social and moral values in our society. A discussion of what is considered work is thus also connected to the social and moral status given to work and work-related activities and how social policy and welfare state institutions should be organised to ensure equality (Barnes 2012).

In their study of the perspectives of people with intellectual disabilities on social inclusion and exclusion through work, Lysaght et al. (2017) demonstrate the importance of opportunities for individuals to perform valued social roles. They specifically developed a model for work inclusion of people with intellectual disabilities (Lysaght, Cobigo & Hamilton 2012), which is based on key components, such as sense of belonging and socially valued contribution. This model serves as the foundation for their findings on the importance of ‘productivity’ rather than ‘paid employment’ as a key aspect of social inclusion, showing the potential of research that addresses work outside the realm of employment in the labour market to identify opportunities for social inclusion (Lysaght et al. 2017).

While integration in employment is possible for a number of disabled people on the condition that barriers are removed, the social inclusion of all disabled people requires rethinking the concept of work (Barnes & Mercer 2005) and recognising the aspirations and demands of disabled people (Abberley 2002). Such rethinking needs to transcend the existing binary between a ‘good’ labour market that provides opportunities for citizenship through employment and a ‘bad’ sector of segregated workplaces that offer no real opportunities for inclusion in society. Scholars have departed from this binary to assess the merits of competitive versus sheltered work (e.g., Hoffman 2013), which has been instrumental in disabled people’s struggle for human rights. However, by focusing attention on certain ‘types of work’, this binary also constitutes a barrier to exploring work inclusion beyond the boundaries of paid employment (Taylor 2004). In line with calls by Abberley (2002) and Barnes and Mercer (2005) for research that revisits the meaning of work, we have adopted a perspective that focuses on the activities that disabled people perform and which can be considered work but are not commonly defined as paid employment in the labour market. We depart from this perspective to shed light on how voluntary work provides opportunities for work inclusion for people with intellectual disabilities. Using citizenship to frame our study, we follow Morris (2005) in understanding citizenship as contribution to and participation in society. While the Convention on the Rights of Persons with Disabilities (UN 2006) emphasises disabled people’s rights as citizens, they do not necessarily enjoy these rights in practice. To illuminate opportunities for realization of citizenship for people with intellectual disabilities, this article discusses citizenship as lived experience, exploring the practices that constitute lived citizenship in different spatial contexts (Lister et al. 2007). More specifically, we analyse how the experiences of people with intellectual disabilities with regard to voluntary work reflect the basic components of work inclusion.

Voluntary work by people with intellectual disabilities

While there is extensive research examining inclusion in competitive work among people with intellectual disabilities (Ellenkamp et al. 2015), there has been less research investigating their participation in voluntary work. Volunteering can be defined as freely taking part over time in chosen activities to help, often through formal organisations, without the expectation of reward or compensation (Snyder & Omoto 2008). The findings suggest that voluntary work provides many benefits, both to individuals with intellectual disabilities and to society (Miller et al. 2002). To some, volunteering is a stepping stone to paid work as it provides an opportunity to explore career interests and to gain work experience (Lindsay et al. 2018), even though voluntary work alone seldom seems to lead to employment (Trembath et al. 2010). Others experience volunteering as an alternative to paid work, offering meaningful activity that provides a sense of purpose in everyday life (Hall & Wilton 2011). Moreover, some find voluntary work to be an important avenue to social inclusion as it provides an opportunity for social contact with both co-workers and others and a sense of belonging to one’s community (Lindsay et al. 2018; Lysaght et al. 2017). For people with intellectual disabilities, volunteering is also associated with skills development, pride and empowerment (Miller et al. 2002). In addition, research shows that participation in voluntary work challenges the dominant discourse of disabled people as passive recipients of care instead of active contributors to society, providing an opportunity to aid and assist instead of being aided and assisted (Roker, Player & Coleman 1998; Undlien 2019). However, many people with disabilities face a dearth of accessible volunteer opportunities due to barriers such as transport difficulties and negative attitudes (Lindsay 2016).

As voluntary work in Norway seems to be a more inclusive setting (Eimhjellen 2011) than paid work for disabled people in general, we were inspired to examine how voluntary work provides opportunities for work inclusion specifically for people with intellectual disabilities.

Method

The background for this study is formed by findings from the research project ‘Rethinking Work Inclusion’, in which the authors participated in a collaboration between four universities in Norway and one in Iceland1 to study different aspects of work inclusion of people with intellectual disabilities. In interviews with employees with intellectual disabilities, it emerged that many were also involved in voluntary work, primarily in mainstream settings. These findings aroused the researchers’ curiosity about volunteering as an arena for work inclusion, and subsequently, the authors decided to explore this further in a separate study. In this article, we present the findings from this study.

Sampling and Recruitment

Purposeful sampling was applied to individuals who a) were engaged in formal volunteering, b) self-identified as having an intellectual disability and c) were able to provide informed consent. No clinical criteria were used to define intellectual disability, instead we relied on self-definition in the sampling process, which was implemented through a focus in recruitment on individuals who were active in self-advocacy organisations. Purposeful sampling is characterised by Creswell and Plano Clark (2011) as identifying and selecting individuals who are especially knowledgeable about or experienced with a phenomenon of interest. To reflect diverse perspectives in relation to inclusion in voluntary work, the sampling method was guided by type of voluntary work and setting of daytime job (segregated or mainstream). Participants were recruited through different voluntary organisations, which distributed a written request containing information about the study and an information sheet in accessible language to potential participants. The latter was provided so that those with intellectual disabilities could either read the invitation to take part in the study or have it read to them. Additional recruitment was conducted by advertising the study on social media. Those willing to participate then either contacted us themselves or sent their written consent via the organisation through which they had obtained information about the study.

Participants

Twelve adults with an intellectual disability gave their informed consent for participation in our study. Four of the participants lived in Iceland, and eight lived in Norway. The participants consisted of three women and nine men between 21 and 67 years of age. They were involved in different types of voluntary work, such as sports teams, church, self-advocacy groups, community radio, the Red Cross, festivals and politics. For further information, see Table 1. Several of the participants had experience from different kinds of voluntary work. Of the Icelandic participants, two had a daytime job in the regular labour market and two were working in a segregated setting. Of the Norwegian participants, three were working in the regular labour market, three in segregated settings and two in a combination of regular and segregated settings.

Table 1

Sample demographics.


FICTIVE NAME GENDER VOLUNTEERING EXPERIENCE

Jon Male Radio, festivals, Red Cross, political work, preventive youth work

Anne Female Parish

Runar Male Parish

Mari Female Sports team

Emma Female Sports team

Ivar Male Red Cross, festivals, political work, preventive youth work

Ole Male Radio, parish

Mads Male Sports team

Kolbeinn Male Entertainment

Bergur Male Sports team

Haraldur Male Political work

Eiríkur Male Sports team

Interviews

To gain access to the participants’ experiences of and reflections on volunteering, we chose to use interviews. We developed a semi-structured interview guide that focused on topics such as the nature and organisation of the voluntary work, job satisfaction and preferences, gains and challenges, training, who they cooperated with and so on. All participants were interviewed independently in December 2020. Eight of the interviews were conducted in person by the first author at a location chosen by the participant (e.g., at the university, at the home of the participant or at a café). Due to the Covid-19 pandemic, four interviews were conducted digitally via Zoom by the second author. One participant participated together with an assistant. The interviews lasted between from 20 to 60 minutes. All participants agreed to audio recording of the interviews. A research assistant then transcribed the interviews verbatim. The transcriptions were anonymised. Approval of this study was granted by the Norwegian Centre for Research Data (no. 940552) and the University of Iceland Research Ethics Committee (no. 18-031).

Data analysis

For this exploratory study we applied thematic analysis (Patton 2002) within the framework of collective qualitative analysis (Eggebø 2020). The authors first individually read the transcriptions in detail, followed by a joint review of their interpretations of the data. During their joint review, the first author presented abstracts of the Norwegian interviews and the second author presented abstracts of the Icelandic interviews. These first two steps gave us a thorough overview of the data. Third, the authors jointly mapped the data through identification and coding of different themes, categories and aspects. Finally, recurrent aspects and themes were grouped and merged for further interpretation in relation to the theoretical perspective of work inclusion as laid out in the introduction of this article (Lysaght, Cobigo & Hamilton 2012). The findings were organised according to the following four overarching themes: meaningful social relations, competence, contribution and belonging. Throughout all four steps, the analysis was a joint effort based on the data collected in Iceland and Norway, which was treated as a single data source. When discussing coding and interpretation, we adhered to a process of intersubjectivity in which disagreement was approached as an opportunity to make explicit, and critically reflect upon, the development of our findings in relation to the data. We found this collaborative form of analysis (Eggebø 2020) useful, as it made room for a creative analytical process in which we developed our understanding of the empirical data, which contributes to the validity of the interpretations.

Findings

Meaningful social relations

Our analysis reveals diverse ways in which social relations are connected with voluntary work. First, the participants emphasised that they find social activities very important. Eiríkur, for example, who volunteers at a sports club, does not like being idle, and social life is one of his main fields of interests, which also means attending parties and events with the team he works for. When his assistant described him as a real party animal who enjoys having fun with lots of people around him, Eiríkur was quick to confirm this, adding that he also likes tournaments for the same reason.

Social relations also had meaning for our participants in terms of what they referred to as ‘being around others’, which can be considered a way of being socially active. Haraldur, for example, enjoys being around other people, something he experienced at the self-advocacy organisation: ‘[Meeting other people] is simply very important. I myself am very much a socially oriented person and I have friends everywhere.’

Voluntary work appeared to give our participants opportunities to develop new and diverse social relations. Eiríkur, for example, has made new friends and acquaintances through his work at the sports club, resulting in a large social network. During the interview, Eiríkur and his assistant talked about how 200 people came to Eiríkur’s birthday parties when he turned 40 and 50, including many from the sports club, and how he enjoyed that:

It is just the old gang from the past 30 years and they all made it fun during [Eiríkur’s] birthday parties, presenting him with lots of gifts. For example, when he turned 50, they gave him a holiday abroad /…/ Interestingly, the trip he received included watching a game together with one of his friends who is a former player in the team (Eiríkur’s assistant).

When Eiríkur talked about enjoying having many social relations through the sports club, he was referring to both strong relations of friendship and more loose relations with people he knows as acquaintances. More generally, our participants also emphasised that volunteering provided opportunities for social relations with non-disabled people as well as people with intellectual disabilities. Some participants, such as Mari, actually highlighted how volunteering provided an opportunity to interact with non-disabled people:

I like that they are like-minded, like me /…/ There are activities for those who have greater disabilities than me. And I respect them, but I think they are not activities for me /…/ We are not like-minded. However, I feel that here at the sports club, I am with like-minded people /…/ Then I work with parents, and people I have become acquainted with….

During the interview, Eiríkur described many of his relations with players from the team as enduring after they had left the team. Eiríkur’s experience shows how their social relations retain their meaning for all involved and grow outside of the context of the voluntary work where they first met. In Eiríkur’s case, this included continued friendship on social media.

Another participant, Kolbeinn, has been doing voluntary work in entertainment. He also mentioned getting the opportunity to significantly extend his social relations, which includes more loose relations. Interestingly, Kolbeinn emphasised how he got to know many girls and young people through his work as an entertainer. Given that people with intellectual disabilities in many cases have more limited access to social relations with peers, including the development of romantic relationships, Kolbeinn’s involvement in voluntary work provided him with meaningful opportunities.

Our participants also referred to the importance of having access to social relations based on equality and mutual respect. According to Eiríkur’s assistant, ‘Eiríkur is significantly older than the current players in the team and receives recognition for having an established position in the team,’ and Eiríkur said that the players were willing to listen to his advice after the games. Furthermore, Haraldur, who has participated in voluntary work in the self-advocacy movement, described experiencing the freedom to express himself and disagree with others in the organisation within an atmosphere of mutual respect: ‘Of course, it can happen that someone has a [different] view and then the others say their views. We have just tried to reach a conclusion about what we want.’ While equality and mutual respect may be considered a necessary condition for social relations in general, this is not self-evident in the case of persons with intellectual disabilities, who often experience marginalisation in social relations.

Related to the notion of equality is the importance of access to social relations based on shared interest rather than coincidence or living in a residence for disabled people. Bergur, for example, said that he experiences satisfaction through his social relations with the young people who are interested in the game.

Competence

Competence emerged from our analysis as a central element in the participants’ experience of voluntary work. Eiríkur, for example, expressed self-confidence in performing his role at the sports club, and Haraldur also described specific tasks related to his role in the self-advocacy organisation that required specific skills and responsibility, for example ensuring accessibility when planning events and making collective decisions on the content of guest lectures. The competence he developed through his voluntary work in the self-advocacy organisation, such as communication skills for addressing crowds, also helped him in his other voluntary activity as an entertainer. In relation to opportunities for developing competence, Kolbeinn recalled how he had enjoyed his collaboration with a well-known non-disabled entertainer:

[Person in the self-advocacy organisation] came up with the idea and asked [famous Icelandic entertainer] to meet me and I was just totally surprised that [entertainer] wanted to do a performance with me /…/ I just got stars in my eyes when [entertainer] came to meet me.

Bergur described developing his competence in coaching a sports team partly through formal training programmes, which he remembers as a positive experience, and how he enjoys his role: ‘I have training certificates. I like it so much, I can’t wait for the sports season to start /…/ I attended courses at [organisation] and I enjoyed them a lot.’

Bergur’s enthusiasm for the training programmes confronts stereotypes about disabled people’s interests and their potential to learn new skills. Even though his mobility impairment prevents him from having experience in sports as a player, it does not prevent him from eagerly playing the role of coach, even though this requires learning new skills. During the interview, Bergur repeatedly emphasised that he had to learn new skills to be able to perform his role as a coach. Moreover, he did not fear this challenge; instead, he expressed his satisfaction with learning new skills and said that he experienced the learning process as an opportunity to widen his interests, something he encourages other people to do as well. However, some participants said that acquiring new skills is not always sufficient and that sometimes they themselves have to develop their own solutions to perform their job. For example, Emma described how she occasionally experiences special challenges in coaching, because she has a physical impairment that makes it difficult for her to show the athletes some of the more complex exercises. However, she has developed her own strategy to meet this challenge:

I know everything in my head, it’s just that I cannot transfer it to my body. /…/ I say that I cannot show you the exercise myself, but I can tell you how to do it, and I walk over to one of the other coaches or athletes and make them show how to do it [by instructing them in what to do].

Another stereotype about the competence of people with intellectual disabilities is that they can acquire new skills only with support. While some of the participants did indeed receive support in order to learn new roles and skills, others described engaging with learning challenges independently or by attending courses or other types of training. Examples include Kolbeinn, who developed his skills as an entertainer all by himself, and Bergur and Emma, who attended formal coaching courses.

Some of the participants stated that they were already competent in the field they did voluntary work in and that their role in voluntary work was above all an opportunity to employ and affirm their existing competence. For instance, Mari related how she, as a volunteer in the kitchen of her local sports team, notified them that she wanted to make only waffles, a familiar task she had already mastered. Mari said,

Here I get to do what I really like to do. Like making waffles /…/ I think it’s a very important job. Because I receive praise afterwards: “Those were good waffles you made” /…/ It makes me experience mastery.

Another example of preferring familiar tasks is provided by Runar, who volunteered in a church group for people with disabilities in his local parish, where they met to talk, sing and have coffee. According to Runar, he enjoyed performing tasks such as counting the lottery money and setting and clearing the table. These were jobs he already knew and managed on his own.

Our analysis shows that our participants were given opportunities to demonstrate different sorts of competence in their roles in voluntary work, including competence that is not necessarily traditionally appreciated as such in society. Kolbeinn, for example, put much emphasis on how he wants people to feel good and to enjoy life outside of entertainment venues and how he wishes to contribute to that by entertaining people using skills he developed in voluntary roles:

I like to entertain people. No matter what. Yes, sometimes I see, for example, I am walking somewhere and see someone who looks unhappy; then I just try to lighten up their existence with a bit of joking.

Finally, according to our analysis, the competence applied in the participants’ voluntary work was sometimes connected to the competence they made use of in other areas of life. For instance, Emma noted how she used the knowledge from her daytime job working with children to coach the young athletes and, conversely, used her knowledge from coaching the athletes in her daytime job. Another participant who gained useful competence through volunteering was Jon. He said that before taking part in an organisation’s preventive work with youth, patrolling the centre of town with other grown-ups at weekends, he had received basic training in ‘standard behaviour and morality in meeting with other people in everyday life’. He also said that he had gained insight through the work itself:

You get to collaborate with many people without at first knowing what their work is, for example ambulance personnel, police, the fire department and different organisations /…/ It opens your eyes to what everyday life can actually be like /…/ You get experiences that in many ways can be very interesting later in life /…/ An opportunity to see and gain insight into things. You get to see things that you might not have known existed…

Belonging

According to the participants, their voluntary work led to an experience of belonging at different levels of society. Some spoke of experiencing themselves as part of a small group of individuals like a family (i.e., belonging at a micro level). For example, Emma said that for years her entire family had been involved with a local sports team. To her, becoming an assistant coach and participating in a manner similar to that of the rest of the family was important. This made her feel like she was both a part of the sports team and also an active participant in joint family activities:

It is very important that I was part of the sports team, because my family was too. If I were on the outside of the sports team, then I felt sort of like what is the reason for that? /…/ to show that you are a part of it and not just standing on the sidelines.

Most of the participants, however, said that their voluntary work made them feel they were part of a team or an organisation, such as a local radio station, a sports team or a congregation, thus pointing to belonging at a meso level. One of these was Mads, who for years has been responsible for washing the uniforms of a local football team. As he put it, he very much felt he was part of the sports team: sitting with them on the bench at the matches, travelling with them to some of the away games, spending time with them at the club house and so on. When Mads turned 30, the team had a surprise for him:

I received a uniform as a thirtieth birthday gift from them. It had the number 30 on it and had all their signatures on the back /…/ So I got that surprise at a training event. With champagne. /…/ It was great.

Many of the participants appreciated and made use of the opportunity to make their affiliation with the club, organisation or festival visible to others by wearing uniforms or other outfits especially designed for the club, organisation or event. The sports team volunteers received or bought the club uniform, and those volunteering at festivals had t-shirts or jumpers with the name of the festival printed on them. Some of the participants used these outfits not only while doing voluntary work but also in everyday life. For example, Mari enjoyed wearing a jacket designed for a national championship where she had volunteered because a famous champion had been wearing the same sort of jacket, and Eiríkur wore the team outfit during our interview.

A few of the participants also indirectly expressed a feeling of national affiliation and thus of belonging at a macro level. Jon, for example, proudly related how the Directorate for Children and Young People had invited him to participate in work on the new white paper on improving the situation of people with intellectual disabilities in Norway and how this work had involved meeting the minister of culture and representatives from the Norwegian Parliament, work that clearly signalled his status as a Norwegian citizen in a position to influence national policy.

Contribution

Our analysis shed light on diverse tasks through which the participants made a contribution, as well as on the diverse settings in which this was done. They mostly provided voluntary work in mainstream settings and performed the same types of tasks as the others. For example, they coached sports teams (Emma and Bergur), prepared and served food and drinks at sporting events or meetings (Mari and Anne), sold tickets at meetings and festivals or provided first aid at events as members of the Red Cross (Jon and Ivar). Furthermore, the tasks described were not optional but key aspects of their organisations’ ordinary activities. For example, Eiríkur was responsible for the water bottles of a sports team, a task his assistant described as a key job, because water is ‘the boys’ gasoline’. However, it emerged that some of the participants performed special tasks where their impairment was actually a prerequisite for their making a contribution. This was typically voluntary work where the aim was to improve the situation for people with intellectual disabilities in particular or for people with disabilities in general, as in the case of Jon’s involvement with the new white paper on the situation of people with intellectual disabilities. What we are trying to say is that Anne and Runar participate in meetings of the congregation espescially for people with intellectual disabilities and that Jon and Ole take part in radio programmes especially for people with intellectual disabilities.

The participants in our study related how they contributed to the community in different ways through their volunteering. Some of the participants indicated how they helped other people. One of these was Jon, a member of a voluntary preventive organisation of adults who, during weekend evenings and nights, patrol the centre of the town to support youth. He described taking care of and providing assistance to (by calling the police and the ambulance) a drunk minor who had lain down in the snow in the park and was unable to take care of herself. According to Jon, he sometimes finds his voluntary work demanding, meeting people who struggle with their lives and listening to their sad stories. Other participants stressed how their volunteering improved the everyday life of others. As previously mentioned, as an entertainer, Kolbeinn not only has a strong interest in people’s well-being, he also has the competence to entertain people to make them feel good.

When I started working at [organisation], when I went for lunch or upon arrival at work, then I was the happy guy, saying good morning to everyone and asking them how they were. Then the atmosphere was really good. Better to have it really good than bad.

In addition, some of the participants found that fighting for disabled people’s rights in different ways enacted change in society. One of these was Ivar, who was a member of a political committee responsible for safeguarding the rights of disabled people.

Several of the participants said that their contribution through voluntary work not only brought praise but also gave them access to socially valued roles. The social value was associated with access to specific tasks, people and processes. Religious rituals have played an important role in our society for centuries, and among the described tasks with a positive status was participation in religious rituals during church services. For example, Ole and Anne reported that at the services in their local parishes they had duties such as reading the text of the day, carrying the cross in and out of church during processions, distributing the wafers for communion and ringing the bells. Moreover, several of the participants emphasised how they had the chance to meet famous people while volunteering. Among these was Mari, who said that while assisting in the kitchen at a competition organised by a local sports team, she had the chance to meet and take a selfie with a national skiing champion. Others reported that they had met famous artists while volunteering at festivals or at the local radio station. Among these was Ole, who through his work at the local radio station had met and interviewed a famous female singer. Not least, the participants who fought for disability rights experienced a sense of involvement in important processes. Bergur, for instance, is a member of a board that investigates matters related to disabled people’s lives, such as improving wheelchair accessibility. He observed that while others can choose freely where to shop or eat, many disabled people must consider where they are able to enter. Having become an expert by way of experience, Bergur performs a socially valued role when he works on a voluntary basis to improve society in terms of human rights and diversity.

Our participants’ views and experiences also stand in contrast with the stereotype that people with intellectual disabilities are individuals who need to be able to do ‘some activities’ just to be kept busy, regardless of how useful or valued these activities may be. Some of the participants did not distinguish between their volunteering and their daytime job, perceiving both as work. Several of the participants emphasised that it was important for them to be able to meaningfully contribute. Mari said, ‘It shows that I also get a little bit involved. That I do not think only of myself. That I think of others as well.’ Ivar took time off from his regular job to contribute to the festival, even though he experienced it as physically heavy and tiring work. Jon also appreciated being able to contribute:

It is rewarding, being able to make their [other citizens’] everyday life better /…/ You get to contribute in many ways that you did not really know it was possible to contribute in, and maybe to make someone’s everyday life better /…/ It feels good.

Discussion

Opportunities for work inclusion

Our point of departure in this article was the need for a discussion of what should be considered work and exploring volunteering as an arena for work inclusion. Previous research into the connection between volunteering and work has approached voluntary work as an alternative (Hall & Wilton 2011) or a stepping stone to paid work for people with intellectual disabilities (Lindsay et al. 2018). However, our study reveals how volunteering is something the participants do in addition to their daytime job in the labour market. It is not a sporadic activity; some of the participants have a history of volunteering for decades. Moreover, it is interesting how several of the participants do not distinguish qualitatively between their daytime job and their voluntary work, perceiving both equally as work. Overall, voluntary work undoubtedly constitutes an important part of the participants’ working lives.

This is supported by our findings, which demonstrate that our participants had opportunities for work inclusion in voluntary work in relation to the four themes that appeared in our analysis. These themes overlap with some of the basic components of work inclusion described by Lysaght et al. (2012), emphasising their importance separately and as a whole. Diverse opportunities for establishing meaningful social relations based on shared interests were very much apparent in our study. Some relations were closer than others, and some were restricted to the work environment, while others extended into other spheres of our participants’ lives. Social relations within voluntary work were a key aspect of the participants’ experience of being included. Second, our study shows the potential of voluntary work not only for offering people with intellectual disabilities the opportunity to acquire new skills and/or to put existing skills into practice but also for recognition of their skills as valuable and relevant. Interestingly, the competence pursued and displayed by our participants was diverse, with some types of competence being directly related to disability and other types being related to mainstream activities. Participants’ competence was an important part of their experience of inclusion, giving them a sense of empowerment and value. Third, voluntary work offered our participants the opportunity to have a sense of belonging to a larger entity, which in our study meant the specific voluntary work setting as well as localised and more general societal contexts. Importantly, work in voluntary settings did not equate to segregation, even if some of the participants’ work was situated within the disability rights movement. Finally, consistent with our findings regarding opportunities for belonging, participants described diverse opportunities for making a valued contribution, both to the voluntary work organisation and to society in general, indicating that they made contributions within the field of disability (e.g., disabled people’s human rights in society) as well as to mainstream society. None of the participants took issue with the lack of economic compensation that characterises participation in voluntary work. One possible explanation for this is the fact that they all received disability benefits from the state and some also received wages from their day jobs.

In conclusion, our study provides strong indications that participation in voluntary work may provide people with intellectual disabilities with diverse and broad opportunities for work inclusion that take into account their preferences, expectations and skills. This contrasts with the participation of people with intellectual disabilities in other arenas of life, which is often based on categorisations of impairments and segregation, such as in group homes (Tøssebro 2016), sheltered workshops and day centres (Wendelborg, Kittelsaa & Wiik 2017). Even when the participants performed tasks directly related to their disabilities, such as in self-advocacy groups or political committees with a focus on ensuring disability rights, this sort of voluntary work was characterised by recognition and not devaluation of the participants as disabled people. Our findings thus coincide with those of Yanay-Ventura’s study (2019), which describes volunteering as an arena where people with disabilities found that disability ceased to be a key component of their identities, with other attributes and traits being emphasised instead.

Voluntary work as a way into citizenship

Our study provides indications of how further insight into voluntary work is helpful in terms of rethinking the meaning and boundaries of work, thereby responding to calls by scholars, such as Colin Barnes (2000). Voluntary settings may offer work that recognises the diversity of preferences, expectations and skills of people with intellectual disabilities and thus leads to work inclusion. In line with Abberley’s (1996, 2002) call for the development of a new social theory of work, expanding the focus of work inclusion to voluntary settings allows for conceptualising work performed by people with intellectual disabilities not merely in terms of economic value but more generally as generative of social value.

From this perspective, inclusion in voluntary work is related to general social inclusion and citizenship. The local community plays an important role in the realisation of citizenship in practice, as this is where much of the actual exercise of citizenship takes place (Bergem & Ekeland 2006). Who is allowed to participate in the public arena shows both who belongs and who is not included. Through their volunteering, our participants contribute to the creation of what Lid and Wyller (2017) refer to as new forms of spatial communities and citizenship. As volunteers, they challenge both the traditional notion of who is the recipient and who is the provider of voluntary work and the notion of who is guest and who is host in public spaces. Through their work, they become a part of the voluntary community on an equal footing with other volunteers, which contributes to respect for diversity in society as well as to opportunities for people with intellectual disabilities to access citizenship within their local society and society in general. This contrasts with their having been considered ‘different’ and ‘strange’ through a long period of segregation and exclusion (Lid 2017).

This study is exploratory in nature and therefore has inherent limitations in terms of generalisability, which was not its aim. Instead, using in-depth interviews with diverse participants, this study offers insightful description of how people with intellectual disabilities experience work inclusion and citizenship through work that is not valued on the market. According to Polit and Beck (2010), in qualitative studies, rich descriptions of the study context and of the phenomena itself can allow readers to make inferences about transferring the findings to their own settings. In addition, application of collective qualitative analysis contributed to trustworthiness of the study findings. While our sample was diverse, the proportion of female participants was low, and this might be of consideration for future studies that aim to shed light on gender perspectives. It should also be noted that our findings were developed within the national contexts of two Nordic welfare states (i.e., Norway and Iceland). Different traditions and regulations in terms of voluntary work and disabled people’s participation might yield different or additional insights. The authors therefore recommend further research pay attention to gender and other relevant individual and societal characteristics to extend our knowledge about work inclusion in voluntary settings. Notwithstanding these challenges, our study provides a foundation for further research by showing how voluntary work serves as an important arena for people with intellectual disabilities, offering opportunities for work inclusion and citizenship.

Notes

1Participants in the research project Rethinking work inclusion, funded by the Norwegian Research Council, were University of Iceland, UiT – the Arctic University of Norway, Norwegian University of Science and Technology, University of South-Eastern Norway and Inland Norway University of Applied Sciences. 

Acknowledgements

We sincerely thank the participants who shared their experiences with voluntary work and the voluntary organisations helping us in the recruitment process.

Funding Information

The study was funded by the Norwegian Research Council.

Competing Interests

The authors have no competing interests to declare.

Author Contributions

Line Melbøe and Stefan Hardonk authors contributed equally to this article.

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