Abstract

There are many barriers to social participation in Iceland for people with intellectual disabilities. This article builds on qualitative research with young adults with intellectual disabilities. The purpose of this article is to develop an approach where the struggles over the meaning of social participation of people with intellectual disabilities are seen as social strategies. In the article, the authors suggest that people with intellectual disabilities are carving out a space where intellectual disability is gaining higher social status. They also posit that people with intellectual disabilities use several social strategies in the emerging field of self-advocacy for the purpose of improving their social position. Thus, the article contributes to a new social understanding of disability and how people with disabilities gain authority over their lives and experiences.

Within all societies and cultures are conventions, institutions, and structures that value and include some people and devalue and exclude others. Most included people never question their right to participate in social activities, such as leisure, sports, and religion. There are many barriers to the social participation of people with intellectual disabilities, and, for the most part of the 20th century, they have been excluded from mainstream society and lacked basic human rights (Angrosino, 1994; Barnes, Mercer, & Shakespeare, 1999; Bogdan & Taylor, 1994; Edgerton, 1967; Goodley, 2003; Margeirsdóttir, 2001; Sigurjónsdóttir & Traustadóttir, 2001; Stefánsdóttir, 2008; Taylor, 2002).

Policy and practice in 20th-century Iceland reveal separation between people with and without intellectual disabilities. This separation has been reinforced by various institutions, such as segregated schools and shelters (Margeirsdóttir, 2001). The understanding of disability in Iceland and other Nordic countries is closely related to the ideas of citizenship and equality of all people and goes back to the development of the Nordic welfare states in the 1930s and the formation of the principles of normalization in the 1970s (Traustadóttir & Kristiansen, 2004). Based on the principle of normalization, people with disabilities should be offered the same opportunities and conditions as citizens without disabilities, meaning a normal life course and normal rhythm of life, involving all circumstances, such as education, employment, and living conditions (Nirje, 1969, 1980, 1994). Disability policy and legislation in Iceland have emphasized social equality and participation for the past 30 years, and many improvements have been made (e.g., closing down many institutions and increasing the number of children who are educated in inclusive school settings). However, exclusion, lack of opportunities, and low social status are common realities for people with intellectual disabilities (Bjarnason, 2002; Geirsdóttir & Stefánsdóttir, 2005; Sigurjónsdóttir, 2004; Stefánsdóttir & Traustadóttir, 2006). Organized self-advocacy has been limited to one group located in Reykjavik (Iceland's capital). Despite the lack of organized self-advocacy, there are numerous stories of people with intellectual disabilities individually advocating for their rights by resisting dominant views and arguing for social equality and human rights (e.g., Stefánsdóttir, 2008).

This articles focuses on the social participation (e.g., leisure, continuing education, and sports) of young Icelandic adults described as having intellectual disabilities, by developing an approach where the struggles over the meaning of participation are seen as social strategies. We suggest that people with intellectual disabilities are carving out social space where the label of intellectual disabilities has the potential to gain higher status than it has in other fields of society. Our main research question was as follows: Are the discursive themes that people with intellectual disabilities use gaining enough capital to fall into legitimating principles and, consequently, forming what we call the field of self-advocacy?

In this article, we first provide a brief overview of the main concepts that we draw from Bourdieu's sociology. Then, we outline the research that this article was based on. Next, we identify the main discursive themes and how we see them being used in the emerging field of self-advocacy. In the last part of the article, we discuss the two spectra of legitimating principles that shape the field, and we conclude with remarks on the emerging field of self-advocacy.

Social Strategies, Legitimating Principles

We use a Bourdieuean (1984, 1987, 1988, 1990) approach to study the emergence of the field of self-advocacy in Iceland, at the beginning of the 21st century. Bourdieu's view suggests that everyday life consists of a collection of different fields, such as leisure, the education system, family, and work (Bourdieu, 1984; Jóhannesson, 2006a). Social actors, groups, and institutions are located within fields and try to distinguish themselves from others in a struggle over field-related capital. Bourdieu (1984) identified the four main types of capital as economic, social, cultural, and symbolic. Capital is unequally distributed, and certain forms of capital are more highly valued, and those who possess it have closer connections to mainstream social institutions (Bourdieu, 1984, 1990). In social fields, one kind of capital can be transferred to another and, ultimately, to economic advantage and symbolic capital (i.e., authority, reputation, and prestige [Bourdieu, 1988, 1990]). This happens when individuals use certain ideas, practices, and knowledge as their social strategies in a way that works in the respective field (Bourdieu, 1984, 1987, 1988).

In this line of inquiry, ideas, practices, and knowledge that become social strategies are elements of discourses that we call discursive themes (Jóhannesson, 1993, 1996, 2006a). To understand if discursive themes, used as social strategies, construct a social field, it is necessary to observe how the discursive themes fall into clusters or patterns of themes. If such patterns become durable, we can view them as historically and socially constructed legitimating principles, and such principles create a social field (Bourdieu, 1988; Jóhannesson, 1993, 2001). These concepts of Bourdieu often seem to be used to understand how legitimating principles in social fields reproduce themselves. However, these concepts can also be used to study less stable legitimating principles as well as intermediate or temporary social fields (see, e.g., Jóhannesson, 2006a; Rawolle, 2005), which means that they are used to study changing relations among people. In our research, we adopted the concepts to understand what we suspected was an emerging field and the discursive tensions that are creating some patterns that already appear durable.

Throughout history, people with intellectual disabilities have lacked opportunities for participation in mainstream Icelandic society (Björnsdóttir, 2002; Sigurjónsdóttir, 2004; Sigurjónsdóttir & Traustadóttir, 2001; Stefánsdóttir, 2008; Stefánsdóttir & Traustadóttir, 2006). We were interested in seeing if this issue has changed; therefore, we examined how people with intellectual disabilities use certain discursive themes as social strategies. We were particularly interested how these strategies are used to help construct particular social space, where some ideas and practices have gained capital that may not be viewed as capital in other social fields. People with intellectual disabilities use strategies to increase their opportunities for social participation and power in society, and, by doing so, they claim a space for the field of self-advocacy (Björnsdóttir & Svensdóttir, 2008).

Method

In this article, we used two sets of data, drawn from the primary investigator's (K. B.) doctoral project, which focuses on the role of cultural factors in the experiences and social participation of young Icelandic adults with intellectual disabilities, with particular reference to gender and identity. The Icelandic government passed the Act on Support to Individuals with Intellectual Disabilities in 1979, and it refers to the rights of individuals with intellectual disabilities to live normal lives and participate fully in society. The participants in our study were born between 1974 and 1984, and, thus, they belonged to the first generation growing up with disabilities after the act was passed. The participants, 3 women and 3 men, were selected based on three criteria: (a) being a young adult, (b) labeled with intellectual disabilities, and (c) actively involved in various social activities such as religion, sports, and self-advocacy. Their experiences and social participation were diverse. For example, 2 participants were educated in inclusive school settings, 2 in self-contained special education classes, and 2 in segregated special schools. In addition, 3 participants still lived at home with their parents and 3 lived independently and received support with activities of daily living (e.g., cooking and cleaning). Four of the participants worked in the open labor market and 2 at sheltered workshops.

The first set of data was collected with a combination of life-history and ethnographic approaches. Life histories were collaboratively constructed with the 6 participants. Three participants chose to have family members or friends involved in the interview process. The biographical interviews were audiotaped, and the primary investigator undertook in-depth interpretation of the material in collaboration with the participants through discussion about their stories. In the interviews, special attention was given to social participation (Björnsdóttir & Svensdóttir, 2008). For the purpose of this article, we refer to the participants as “life-history collaborators.”

Participant observations were carried out in various social activities, such as in self-advocacy groups, sports events, and church activities. The purpose of the participant observations was to gain a better understanding of the life-history collaborators' living situations and their social participation. Participant observations were carried out and documented by the primary investigator in Iceland from 2004 to 2006.

The second set of data was an analysis of print media coverage on the subject of intellectual disability in Iceland. An Icelandic media-monitoring company, Creditinfo Iceland, that covers around 100 Icelandic print media collected the data for the National Association of Intellectual Disabilities. We chose a timeframe from 2003 to 2006, starting with the European Year of People With Disabilities, which had the main purpose to raise awareness of the rights of disabled people in Europe, and ending at the same time as the data collection of interviews and observations. About 1,200 articles and news were read and categorized by type of writing (i.e., interviews, news stories, or articles) and authors (e.g., professionals or parents). All direct citations were translated from Icelandic by the first author of this article in collaboration with the life history collaborators.

The analysis and identification of discursive themes (ideas, practices, knowledge) were based on the primary investigator's life-history collaboration with the 6 participants, but none of the participants were directly involved in the construction of this article. For the analysis of the print material and continuing analysis of the life histories, we used a critical historical analysis of discourse (Foucault, 1998a, 1998b; Jóhannesson, 2006b) that was compatible with Bourdieuean analysis of legitimating principles (Bourdieu, 1988; Jóhannesson, 2001). We explored the discursive themes in relation to ideas and practices on intellectual disability (e.g., those represented in the print media coverage). Attention was given to the legitimating process, that is, the way in which the discursive themes seemed to be counting as capital (Jóhannesson, 1996, 2001). We were interested in how the patterns of legitimization have evolved in the emerging field of self-advocacy in Iceland. We explored if the discursive themes used by people with intellectual disabilities were gaining enough capital to fall into the patterns of legitimating principles.

Results

In this section, we first explore the underrepresentation of people with intellectual disabilities in Icelandic print media; then, we introduce the discursive themes and examine how they are used in the emerging field of self-advocacy. The themes are representation, support, opportunities, luck, and power.

Underrepresentation in Print Media

As mentioned above, 2003 marked the starting point for print media analysis, which was the European Year of People With Disabilities. The European Commission and the disability movement organized events across Europe; the purpose was to raise awareness about the situation and rights of European citizens with disabilities. We chose this starting point because we expected increased media coverage on the subject of disability that would result in substantial data to work with. Approximately 10% of Iceland's population has a disability, and people with intellectual disabilities are the largest group within that population. Findings based on analysis of Icelandic print media suggested that people with intellectual disabilities are underrepresented in Icelandic newspapers and magazines, both in quantity and quality. The coverage was most frequently focused on disability issues in general, and when the articles were categorized according to different impairments and disabilities, the intellectual disability category proved to be relatively small compared with other categories. Reports that focused specifically on people with intellectual disabilities were divided into three main categories: (a) newspaper articles by professionals and parents, (b) short news stories about charity events and special events for people with intellectual disabilities, and (c) interviews with people with intellectual disabilities.

We found that most common reports were newspaper articles written by professionals and parents. It appeared to be a public dialogue or conversation between the two groups. Parents wrote about their experiences and on behalf of their children. They criticized the system for letting their children down and pled for more support.

Inclusive education appeared to be the most common topic along with supported employment and living. For example, parents of an 8-year-old girl with intellectual disability told a local newspaper about how their daughter had been bullied in school and not received proper educational support: “The school and the school district did not fulfill their legal obligations and there seem to be no solutions. Should not all children go to school?” (Jónsdóttir, 2006, p. 20). Another example was a mother advocating for inclusive education: “Being with your peers and learning to be in a society with others, that is how you become socially competent” (Karl, 2005, p. 8).

Professionals either teamed up with parents and blamed the system for lack of support or tried to defend other professionals within the system. An example of a response to parents is this quote from a newspaper article written by a director of a counseling center for disabled children and their families: “The counselors are willing, with parent's consent, to provide support by accompanying families to meetings with teachers and specialists, and finding and pushing for proper support” (Ragnarsdóttir, 2005, p. 33). Another example was from an article written by a primary school teacher about inclusive education in primary schools in Reykjavík: “The ideology is beautiful, but maybe not realistic, not unless the schools change more drastically than we are experiencing” (þórdardóttir, 2005).

Short news stories or announcements about events for people with intellectual disabilities or stories about charity events were also common. These news stories included announcements about sporting events such as the Paralympics or Special Olympics, concerts, and shows performed by or for people with intellectual disabilities and self-advocacy meetings. Occasionally, companies and organizations give to charity for people with intellectual disabilities, and their generosity was reported in these short news stories. These stories were typically not accompanied with interviews or pictures.

In addition, these reports included interviews with people with intellectual disabilities, but these were few. These interviews gave people with intellectual disabilities opportunities to speak on their own behalf and construct themselves as competent adults. However, the interviews were usually accompanied by news coverage and interviews with professionals, politicians, or parents who were not disabled and, therefore, reinforced disabling stereotypes of dependent people who are “eternal children” and need someone who is nondisabled to speak on their behalf. When presented in the media, people with intellectual disabilities were often described as “childlike” and “incompetent,” and these descriptions were quite different compared with how nondisabled adults were described. Whereas interviews with people who were not disabled included descriptions such as “career minded, charismatic, and gourmet chef,” interviews with people with intellectual disabilities included descriptions such as “happy in his job, neat and tidy, and loves to cook.”

The small amount of articles on the issue of intellectual disability, the simultaneous absence of their voices, and the construction of social realities where people with intellectual disabilities are childlike, dependent, and have little authority to speak about their lives and experiences highlights the underrepresentation of people with intellectual disabilities in the print media. The underrepresentation stems from reduced access to capital and the cultivation of it (Bourdieu, 1984).

In Iceland, this historical conjuncture coincides with the development of the field of self-advocacy. The life histories in this research show that a new discursive stance on intellectual disability is forming in Iceland, one that represents people with intellectual disabilities as competent, independent adults who possess capital and human rights. The discursive stance about intellectual disability has formed in opposition and resistance to the dominant view presented in Icelandic print media.

Representation of Views and Interests

Underrepresentation of people with intellectual disabilities in the media suggests that they belong to a dispossessed and ignored group. However, when they were represented in the media, it was usually by professionals who acted as spokespersons on behalf of people with intellectual disabilities. Being a professional seems to establish authorized perspectives on intellectual disability and people's experiences and needs (Bourdieu, 1991). The perspectives presented in the print media focused on limitations, and people with intellectual disabilities were viewed as passive individuals who needed to be acted on. The following is an example of a professional describing his work and his workplace: “Forty disabled individuals live and work in Sólheimar community and some of them have the opportunity to work in sheltered workshops. There we attempt to facilitate their artistic abilities and find for them a suitable artistic process” (“Sólheimar á Kjarvalsstöðum,” 2003).

These professionals represented people with intellectual disabilities who appeared to be untalented and inactive participants on the margins of society. This discourse was shaped by a deficit understanding of disability and emphasized people's limitations and inabilities (Barnes, 2003).

The life-history collaborators told an entirely different story. They presented themselves as capable social actors who were involved in many different activities. They sang in choirs or musical groups, competed and won medals in sporting tournaments, and participated as artists and art lovers in art festivals. Sara was in her mid-20s and had appeared publicly on many occasions with her musical group and traveled to interesting places: “I have been … abroad. First time I went to Germany. … Then twice to Faeroe Islands and then to Latvia. This summer we [the musical group] will go to Denmark.”

Björn worked at a sheltered workshop, and he was on a committee for supported employment at his local council. Although he was very busy in his job, working for the committee and giving presentations at Icelandic universities and conferences, he made time for all kinds of informal activities: “I am quite active and walk most places. I do not smoke or drink. I am proud of that. I like to go to the movies with good friends”.

In the print media coverage, the people with intellectual disabilities who were directly involved in leisure or social activities were seldom interviewed. Instead, professionals were interviewed and explained how they had devoted their careers to help people with intellectual disabilities and used creative ways (e.g., music, arts, and sports) to do so. However, the life-history collaborators wanted to be talked to and taken seriously, whether it was in the supermarket, at the doctor's office, or in the media. Linda, a self-advocate, said, “If we do not voice our opinions in public we will never get the same rights as other people.”

People with intellectual disabilities are socially constructed by others as a group who lacks abilities and is impaired or defective. This creates the need for many different kinds of professionals who are supposed to take care of, train, and educate them. By speaking on behalf of people with intellectual disabilities and in their place, the professionals transform themselves into spokespersons and, consequently, draw boundaries between themselves and people with intellectual disabilities (Bourdieu, 1991). Their professional status or emblem exceeds the status or stigma possessed by people with intellectual disabilities. Therefore, they have the power to act on people and make decisions for them. As a result, the life-history collaborators “resort to practical or symbolic strategies aimed at maximizing” (Bourdieu, 1991, p. 240) the symbolic profit of their social position, for example, by presenting themselves as active, talented, and fit social actors in Icelandic society.

Support and Opportunities for Social Participation

A common stereotype or image of people with intellectual disabilities presented in Icelandic print media is the tragedy—the person who is “wrestling” or “battling” disability—and their need for support and services from family, which professionals often describe as a societal burden. This media presentation demonstrates their lack of capital. When people who possess capital need assistance and support, they do not appear to be at risk of constructing themselves as dependent or unfit. On the contrary, they seem to reiterate and reproduce their social position as important or dominant—they have so many important things to do that they need all kinds of assistance.

Our analysis suggests that the social participation (e.g., participation in leisure activities) of the life-history collaborators was shaped by cultural and economic capital (education and finances) and depended largely on the support and services these individuals received. Support was a general theme in both the life histories and print media. Most of the articles written by parents were on lack of support. These articles were usually associated with some situation or event in Icelandic society (e.g., the 2004 school teacher strike). Lack of support for inclusive education, supported employment, and supported living were issues that appeared to be addressed periodically in the print media. The life-history collaborators in this research talked frequently about their need for support, and below are two examples of stories on how support was presented in the life histories.

The life-history collaborator Sara was in her mid-20s and enjoyed going swimming. She lived in a supported apartment complex and had asked the staff to take her swimming. For several reasons, Sara did not feel confident going on her own and hoped to get support to go once a week to the swimming pool. However, the staff did not have time or interest to go swimming with her. Sara played boccia at a local sport club for people with intellectual disabilities (Special Olympics) once a week, and she asked the organizers if she could join the swim team. She had neither interest in competition nor participation in the Special Olympics events. However, it was her only way of finding support to go swimming regularly. Her need for support resulted in different kind of support than she really wanted.

The latter story is of Gunnar, who was in his early 20s, the younger of two siblings, and still lived at home with his parents. He was a champion swimmer and led a busy life, worked part time as an unskilled worker at a local company, and trained in swimming for a Special Olympics team and a nondisabled championship club. Gunnar was also learning how to play the piano at a continuing education program for people with intellectual disabilities. Although he led a very busy life, he wanted to socialize more: for example, go to the cinema, cafes, and concerts without his parents or siblings. He had asked his mother to allow him to go by himself, but he was not allowed to go without support staff, who, in most cases, were middle-aged women. Gunnar not only needed support staff, but he needed appropriate support, in other words, young people who shared his interests.

Support enables people with intellectual disabilities to participate in society (e.g., living on their own, having a job, and taking part in leisure activities); however, support can also be seen as highlighting these individuals as “others,” and by expressing their needs for support, the life-history collaborators risked contributing to the construction of the stereotypical social and family burden, which threatened their self-determination (Asch, 2003). The life-history collaborators experienced different levels of self-determination (i.e., their freedom to choose their own practices and actions varied). All of them talked about wanting to make decisions about their everyday lives: for example, what they should eat, what they should wear, and when they should go to bed. However, these decisions were often made by other people, supporters, and family members. Gunnar said, “My sister cut my hair. I wanted to have long hair.” The life-history collaborators also talked about making decisions about where to live and with whom, where to work, and what kind of support they needed. However, there was tension between the life-history collaborators' ideas or choices and what parents, siblings, and professionals thought was best.

The discursive theme of opportunities for social participation is closely tied with the theme of support. When we looked at the social participation (e.g., leisure activities and adult education) of the young adults involved in this study, it was, with few exceptions, within segregated activities specially organized for people with intellectual disabilities. Bourdieu (1976) often referred to social realities in terms of a game where social actors are in competition for cultural, economic, social, and symbolic capital. Social actors use, unconsciously and consciously, social strategies to expand their capital. Social strategies—the “moves of the game”—have different meaning for different social groups and depend on economic and social background of the social actor (Bourdieu, 1984).

Our findings suggested that people with intellectual disabilities considered it desirable to obtain appropriate support because it increased their opportunity for participation in society as well as enabled them to exercise self-determination. Therefore, by using the discursive themes of support and opportunities as social strategies in the emerging field of intellectual disability, the participants claimed authority over what constitutes important and appropriate support. If the discursive themes, knowledge, and practice became durable (as in these cases, they were taken up by many), these individuals will have contributed to social change where support had been redefined (Gibson et al., 2007; Jóhannesson, 2006a).

Social Participation as Result of Luck or Power

In the life-history interviews, the discursive theme of luck competed with the discursive theme of power. There was a significant difference between luck and power. Luck refers to what happens beyond the person's control. If one is lucky, he or she achieves something without much effort and without attributing to his or hers good fortune. Power, on the other hand, described in Bourdieu's (1988, 1990) terms, could be explained as symbolic capital: authority, reputation, and prestige. People believe that a person possesses these qualities and that, in turn, gives the person status and authority.

When the 6 life-history collaborators experienced struggles in their daily lives, they talked about how they lacked power and expressed their will for self-determination. Björn was in his late 20s and used to share an apartment with another young man with an intellectual disability. He did not like this arrangement and had to fight the system to be allowed to live alone:

I want to decide when I go to bed. I am able to take care of my finances. My spending is not irresponsible. I want to be independent and do my own washing and cleaning…I want to have responsibilities and power over my daily living…I want to choose the services I need.

On the other hand, when the life-history collaborators talked about good relations and social interactions with nondisabled people, it was all attributed to “luck.” For example, Linda was in her mid-20s, and she had a beautiful singing voice. She was bullied in school and felt she received little support and understanding from her teachers. However, in the children's choir, the conductor and the other children accepted her: “He [the conductor] is special. He was nice to me. I was so lucky to be in the choir.”

Jónas was in his mid-20s and a churchgoing man who participated in various religious activities organized by his church. The minister and the congregation welcomed him to the church and he talked about his luck belonging to the church:

The people in my church are very nice. After my surgery the minister was the first to welcome me back [in Sunday service]…This made me really happy…I am lucky to have these people to pray for me.

Gunnar, a champion swimmer in his early 20s, and his mother talked about how important it was for him to compete and train with the best nondisabled swimmers in Iceland. It had been difficult to find a swimming club that would allow him to participate in championship trainings. Gunnar had, for few years, trained part time with two different championship clubs. Gunnar and his mother attributed the coach's acceptance of him to luck.

The discursive theme of luck implies that the life-history collaborators considered themselves to lack power and attributed their success to luck and good-willed, nondisabled professionals (e.g., the conductor, minister, coach). We interpreted this as misrecognition of power, possessed by the nondisabled professionals, that generated symbolic violence, “which is exercised upon a social agent with his or her complicity” (Bourdieu, 1991, p. 167). It was invisible violence that was not in itself violence and seemed to be natural to the life-history collaborators (Edwards & Imrie, 2003). The life-history collaborators had learned to recognize the traditional, nondisabled social order and affirm their marginal social position. They did so by accepting the underlying presumption that people with intellectual disabilities need nondisabled professionals to help them succeed in social situations (Edwards & Imrie, 2003; Gibson et al., 2007). They understood and interpreted the symbolic violence as luck, because if one does not have power, he or she needs luck.

Discussion

Emerging Social Field

In this article, we identified two legitimating principles that the field of self-advocacy structures itself around. The first principle is based on a deficit understanding of disability that focuses on the undesirability of living with impairment, contrasted with a social understanding of seeing people with intellectual disabilities as active and able. The deficit understanding brings attention to the individuals' limitations and inabilities. From this perspective, the solution to disability is the use of medical interventions, preventions, and rehabilitation, and this understanding has contributed to the social exclusion of people who are disabled and shaped services around segregation and social exclusion. A competing principle is emerging from the life histories and falls under the social understanding of disability. Instead of attributing difficulties and oppression to people's impairment, the focus is directed toward the role of environment and social barriers in these individuals' lives (Barnes, 2003; Traustadóttir, 2006). As indicated in this article, discourse in the Icelandic print media continued to be dominated by the legitimating principle of a deficit understanding of disability, whereas the life histories corresponded to a greater extent to a social understanding of disability.

People with intellectual disabilities were generally presented as unfit and untalented people in Icelandic newspapers and magazines during the period of time that we studied. Therefore, it became problematic when the life-history collaborators told stories about themselves as champion swimmers, active self-advocates, and talented artists. This disparity created tensions between production and reproduction, change and stability. The stratified social system, with people who are nondisabled as dominant members and people with intellectual disabilities as disadvantage members, is maintained through cultural production and reproduction (Bourdieu, 1993). Social institutions, such as media, reproduce existing social inequalities, and underrepresentation of people with intellectual disabilities in quantity and quality reiterates them as unfit and untalented social actors.

Another spectrum of legitimating principles also shapes the field of self-advocacy, that is, the contrasting principle of inclusion and exclusion. The life-history collaborators had adopted the ideology of inclusion, knew their rights, and wanted to be included into Icelandic society. However, there was a conflict between their rights and their experiences. They had been, on many occasions, excluded and had experienced disappointment with the support they received and lacked opportunities to participate fully in society. The educational, vocational, and social segregation of people with intellectual disabilities had put them in somewhat destitute social position, a place to fight from, and, therefore, to some extent, contributed to the emergence of this particular social field of self-advocacy.

As mentioned above, people with intellectual disabilities were underrepresented in Icelandic print media, which implies that they were considered passive and inactive social actors. The underrepresentation impeded their struggle for position in social space and their wish to stand up for their rights. The social participation of the life-history collaborators was often within segregated activities organized for people with intellectual disabilities, such as Special Olympics, segregated continuing education classes, leisure, and social clubs. Lack of economic, social, and cultural capital seems to be an influencing factor in opportunities for participation in mainstream society. For example, lack of economic capital excluded them from participation in social activities such as theater, concerts, and dining out, and limited social capital led to exclusion and social isolation. Jóhannesson (1999) argued that high school education could serve as strategies for those who come from lower classes. In Icelandic mainstream high schools, students learn to value literature and appreciate art and have the opportunity to expand their cultural capital. However, the high school curriculum for segregated special education classes is mainly focused on life-skills training, limited to home economics and other skills needed for cooking, cleaning, and taking care of their homes (Björnsdóttir, 2002). Although such life skills are useful for all people living on their own, they do not facilitate access to social and cultural activities outside the home. Furthermore, support with housework seems to be the most easily available service that people with intellectual disabilities in Iceland, living on their own, can receive.

The participants in this study belong to the so-called integration generation, and they knew their rights and had adopted the ideology of normalization and social inclusion (Gustavsson, 1999). This new ideology—that is, social understanding of disability—created opportunities for them that older generations did not experience. However, there was a clear incongruity between ideology and reality. Despite the fact that the participants in this study live in a society that tends to highlight their disabilities and exclude them, they did not interpret the disability label in a stigmatizing manner. All of them talked about their hopes and desires for a better society to live in. This attitude could further strengthen the argument for an emerging field of self-advocacy in Iceland, with a field-specific capital, rules, and understanding. With self-advocacy, people with intellectual disabilities attempt to capitalize on the particular values related to intellectual disabilities rather than place themselves as victims of their disability; they use social strategies and discursive themes that fall into the patterns that we have described as shaping the field self-advocacy.

Conclusion

Our research is, in part, an exercise in using sociological concepts to understand the struggles about and around disability in society. However, more important, in this article, we also identify and name the contradictory principles that contribute to a discursive space for self-advocacy claimed by people with intellectual disabilities. Bourdieu's (1984, 1987, 1988, 1990) sociology has revealed mechanisms that produce and reproduce social inequality and oppression and helped us understand how some social groups are included, excluded, valued, or devalued. Bourdieu's ideas also helped us identify the themes that may have the greatest chance of becoming symbolic power as well as the processes of symbolic violence.

Our findings suggest that, although people with intellectual disabilities are often in a disadvantaged position to participate in mainstream society, they do use several, and often contradicting, strategies in the emerging field of self-advocacy to improve their social position. Their strategies signify the social understanding of disability and the idea of inclusion, thereby infusing these ideas with some symbolic status as capital. Social understanding of disability is the primary legitimating principle within the emerging field of self-advocacy but opposes society's traditional, nondisabled values and is interrelated to the disability movement and the formation of the academic field of disability studies. Therefore, by carving out space where intellectual disability is gaining higher social status, people with intellectual disabilities are contributing to a new social understanding of disability as well as claiming authority over their lives and experiences. Their message is, “We are here. We may be different from you, but you are also different from us.”

Acknowledgments

This article is based on a paper presented at the 2008 Annual Meeting of the American Educational Research Association in New York, and we thank Susan Gabel, the session's discussant, for helpful feedback. We also thank Rannveig Traustadóttir, Hanna Björg Sigurjónsdóttir, Dan Goodley, Eiríksína Kr. Ásgrímsdóttir, Christopher Kliewer, and the anonymous reviewers of the journal for comments on drafts of the article. We are grateful to the National Association of Intellectual Disabilities in Iceland for allowing us access to their print media outputs. The Icelandic Graduate Research Fund (RANNIS), the University of Iceland Eimskip Fund, and the Icelandic Ministry of Education, Science and Culture supported the doctoral research project.

References

References
Act on Support to Individuals with Intellectual Disabilities #47/1979
1979
.
(Aðstoð við Þroskahefta nr. 47/1979).
Angrosino
,
M. V.
1994
.
On the bus with Vonnie Lee.
Journal of Contemporary Ethnography
23
:
14
28
.
Asch
,
A.
2003
.
Disability, bioethics, and human rights.
In G. L. Albrecht, K. D. Seelman, and M. Bury (Eds.), Handbook of disability studies (pp. 97-326). Thousand Oaks, CA Sage
.
Barnes
,
C.
2003
.
What a difference a decade makes: Reflections on doing “emancipatory” disability research.
Disability & Society
18
:
13
27
.
Barnes
,
C.
,
G.
Mercer
, and
T.
Shakespeare
.
1999
.
Exploring disability: A sociological introduction
Cambridge, England Polity Press
.
Bjarnason
,
D. S.
2002
.
New voices in Iceland. Parents and adult children: Juggling supports and choices in time and space.
Disability & Society
17
:
307
326
.
Björnsdóttir
,
K.
2002
.
þroskaheftir framhaldsskólanemendur [High-school students with intellectual disabilities, in Icelandic].
Unpublished master's thesis, University of Iceland, Reykjavík.
Björnsdóttir
,
K.
and
A. S.
Svensdóttir
.
2008
.
Gambling for capital: Learning disability, inclusive research and collaborative life histories.
British Journal of Learning Disabilities
36
:
263
270
.
Bogdan
,
R.
and
S.
Taylor
.
1994
.
The social meaning of mental retardation: Two life stories
New York Teachers College Press
.
Bourdieu
,
P.
1976
.
Marriage strategies as strategies of social reproduction.
In R. Forster & O. Ranum (Eds.), Family and society: Selections from the Annales (pp. 117-144). Baltimore Johns Hopkins University Press
.
Bourdieu
,
P.
1984
.
Distinction: A social critique of the judgment of taste
Cambridge, England Cambridge University Press
.
Bourdieu
,
P.
1987
.
What makes a social class? On the theoretical and practical existence of groups.
Berkeley Journal of Sociology
32
:
1
17
.
Bourdieu
,
P.
1988
.
Homo academicus
Stanford, CA Stanford University Press
.
Bourdieu
,
P.
1990
.
In other words: Essay towards a reflexive sociology
Stanford, CA Stanford University Press
.
Bourdieu
,
P.
1991
.
Language & symbolic power
Cambridge, MA Harvard University Press
.
Bourdieu
,
P.
1993
.
The field of cultural production
New York Columbia University Press
.
Edgerton
,
R.
1967
.
The cloak of competence: Stigma in the lives of the mentally retarded
Berkeley University of California Press
.
Edwards
,
C.
and
R.
Imrie
.
2003
.
Disability and bodies as bearers of value.
Sociology
37
:
239
256
.
Foucault
,
M.
1998a
.
On the ways of writing history.
In J. D. Faubion (Ed.), Aesthetics, methods, and epistemology (pp. 279-295). New York The New Press (Original work published 1967).
Foucault
,
M.
1998b
.
Return to history.
In J. D. Faubion (Ed.), Aesthetics, methods, and epistemology (pp. 419-432). New York The New Press (Original work published 1967).
Geirsdóttir
,
I. E.
and
G. V.
Stefánsdóttir
.
2005
.
The cost of moving out.
In R. Traustadóttir & K. Johnson (Eds.), Deinstitutionalization and people with intellectual disabilities: In and out of institutions (pp. 130-136). London Kingsley
.
Gibson
,
B. E.
,
N. L.
Young
,
R. E. G.
Upshur
, and
P.
McKeever
.
2007
.
Men on the margin: A Bourdieusian examination of living into adulthood with muscular dystrophy.
Social Science & Medicine
65
:
505
517
.
Goodley
,
D.
2003
.
Against a politics of victimisation: Disability culture and self-advocates with learning difficulties.
In S. Riddell & N. Watson (Eds.), Disability, culture and identity (pp. 88-104). Harlow, UK Pearson Education
.
Gustavsson
,
A.
1999
.
Inifrån utanförskapet: Om att vara annorlunda och delaktig [Insiders' perspectives on being an outsider, in Swedish]
Stockholm, Sweden Johansson & Skyttmo
.
Jóhannesson
,
1993, April 9–12
.
Professionalization of progress and expertise among teacher educators in Iceland: A Bourdieuean interpretation.
Teacher & Teacher Education
9
:
269
281
.
Jóhannesson
,
1996
.
Teachers' work and theories of professionalism: Conceptualizing a new approach
Paper presented at the Annual Convention of the American Educational Research Association, New York. Retrieved July 31, 2007, from http://www.ismennt.is/not/ingo/teawork.htm
.
Jóhannesson
,
1999
.
Kvikmyndir sem félagsleg stjórnlist [Movies as social strategies].
In G. Elísson (Ed.), Heimur kvikmyndanna (pp. 348-359). Reykjavík, Iceland Art.is & Forlagið
.
Jóhannesson
,
2001, April 10–12
.
Ideas in historical web: A genealogy of educational ideas and reforms in Iceland
Paper presented at the Annual Convention of the American Education Research Association, Seattle, WA. Retrieved July 31, 2007 from http://www.ismennt.is/not/ingo/histweb.htm
.
Jóhannesson
,
2006a
.
Concepts of teacher knowledge as social strategies.
Pedagogy, Culture & Society
14
1
:
19
34
.
Jóhannesson
,
2006b
.
Leitað að mótsögnum. Um verklag við orðræðugreiningu [Looking for contradictions. How to analyze discourse from a historical and political perspective].
In R. Traustadóttir (Ed.), Fötlun: Hugmyndir og aðferðir á nýju fræðasviði (pp. 178-195). Reykjavík University of Iceland Press
.
Jónsdóttir
,
S. V.
2006, April 30
.
Barnið Þitt kostar of mikið [Your child is too expensive].
Morgunblaðið
20
.
Karl
,
A.
2005, October 29
.
Sitja ekki við sama borð [Do not have the same opportunities].
Morgunblaðið
8
.
Margeirsdóttir
,
M.
2001
.
Fötlun og samfélag: Um Þróun í málefnum fatlaðra [Disability and society, in Icelandic]
Reykjavík University of Iceland Press
.
Nirje
,
B.
1969
.
The normalization principle and its human management implications.
In R. Kugel & W. Wolfensberger (Eds.), Changing patterns in residential services for the mentally retarded. Washington, DC President's Committee on Mental Retardation
.
Nirje
,
B.
1980
.
The normalization principle.
In R. J. Flynn & K. E. Nitsch (Eds.), Normalization, social integration, and community services (pp. 31-49). Austin, TX Pro ED
.
Nirje
,
B.
1994
.
The normalization principle and its human management implications.
The International Social Role Valorization Journal/La Revue Internationale de la Valorisation des Roles Sociaux
1
2
:
19
23
.
Ragnarsdóttir
,
þ
2005, July 8
.
Haltur leiðir blindan fyrir börn með sérþÞarfir [Walk for children with special needs].
Morgunblaðið
33
.
Rawolle
,
S.
2005
.
Cross-field effects and temporary social fields: A case study of the mediatization of recent Australian knowledge economy policies.
Journal of Education Policy
20
:
705
723
.
Sigurjónsdóttir
,
H. B.
2004
.
Intellectually limited fathers, their families and formal support services.
In K. Kristiansen & R. Traustadóttir (Eds.), Gender and disability: Research in the Nordic countries (pp. 239-255). Lund, Sweden Studentlitteratur
.
Sigurjónsdóttir
,
H. B.
and
R.
Traustadóttir
.
2001
.
Ósýnilegar fjölskyldur: Seinfærar/þÞroskaheftar mæður og börn þÞeirra [Invisible families: Mothers with learning difficulties and their children, in Icelandic]
Reykjavík University of Iceland Press
.
Sólheimar á Kjarvalstöðum
2003, November 27
.
Morgunblaðið
.
Stefánsdóttir
,
G. V.
2008
.
“Ég hef svo mikið að segja” Lífssögur Íslending með Þroskahömlun á 20. öld [“I have so much to say”: Life histories of Icelandic people with intellectual disabilities in the 20th century].
Doctoral dissertation, University of Iceland.
Stefánsdóttir
,
G.
and
R.
Traustadóttir
.
2006
.
Resilience and resistance in the life histories of three women with learning difficulties in Iceland.
In D. Mitchell, R. Traustadóttir, R. Chapman, L. Townson, & N. Ingham (Eds.), Exploring experiences of advocacy by people with learning disabilities: Testimonies of resistance (pp. 54-67). London Kingsley
.
Taylor
,
S.
2002
.
“You are not a retard, you're just wise.”.
Journal of Contemporary Ethnography
29
1
:
58
92
.
Traustadóttir
,
R.
2006
.
Í nýjum fræðaheimi: Upphaf fötlunarfræða og átök ólíkra hugmynda [Disability: Ideas and methods in a new field of study].
In R. Traustadóttir (Ed.), Fötlun: Hugmyndir og aðferðir á nýju fræðasviði (pp. 13-36). Reykjavík University of Iceland Press
.
Traustadóttir
,
R.
and
K.
Kristiansen
.
2004
.
Introduction.
In R. Traustadóttir & K. Kristiansen (Eds.), Gender and disability research in the Nordic countries (pp. 31-48). Lund, Sweden Studentlitterature
.
þórðardóttir
,
I. R.
2005, November 15
.
Einstaklingsmiðað nám og skóli án aðgreiningar [Individualized learning and inclusive schools].
Fréttablaðið
.

Editor-in-Charge: Christopher Kliewer

Kristín Björnsdóttir, MA (krb4@hi.is), Doctoral Student, Centre for Disability Studies, Faculty of Social and Human Sciences, University of Iceland, Sturlugata, 101 Reykjavík, Iceland. Ingólfur Ásgeir Jóhannesson, PhD, Professor, University of Akureyri, Faculty of Education, þingvallastræti 23, 602 Akureyri, Iceland.