This article addresses the issue of identity production and reproduction in relation to social participation of young adults with intellectual disabilities. It is based on life history research conducted in collaboration with young adults with intellectual disabilities in Iceland. The article challenges the usefulness of the intellectual disability label and examines how the participants resist the label by telling stories of competence and abilities. The article also explores the interplay of the intellectual disability label and other social categories, such as class and religion. It concludes with a call for more awareness of the effects that non-disabled professionals and researchers have on the intellectual disability identity by using a label that is grounded in a deficit understanding of disability.
Iceland is a small, modern welfare state located in the North Atlantic Ocean, with a socialized health care and education for all its citizens. People with intellectual disabilities have a formal right, since 1979, to participate in society and to receive support to lead a normal life. Disability policy and legislation have also emphasized equality and greater social participation of disabled people for the past 30 years. This article focuses on the labeling of people with intellectual disabilities and how the label intersects with other social categories or identities, such as class and religion. The article is based on an inclusive life history project that explores the social participation of young adults with intellectual disabilities with particular reference to gender and identity. This research focuses on a group of people who have been identified as having intellectual disabilities and are commonly viewed as a homogenous group with a shared identity (Björnsdóttir & Jóhannesson, 2009). I will, however, demonstrate how identities are continuously challenged, resisted and transformed through discourse and practice in social spaces. I place the findings in the context of Bourdieu's sociology and feminist theory on intersectionality and discuss the complexity of identity (re)production in relation to the social participation of young adults with intellectual disabilities.
Identity, Habitus and Intersectionality
The French sociologist Pierre Bourdieu (1984) argued that everyday life consists of the struggle over power and society's resources. Dominant groups are committed to maintain their power over these resources and distinguish themselves from subordinate groups that attempt to increase their capital and opportunities. Bourdieu (1977) used the term habitus to refer to the dispositions and attitudes that people develop through social interactions. The habitus is not inborn, but an acquired product of history, social experience, and education (Bourdieu, 1977, 2005). The habitus is a long-lasting structure of "perception, conceptions and actions" (Bourdieu 2005, p. 43). The habitus unconsciously steers people's practices, behaviors, and feelings and reflects their social history and location and equips social actors with competence, i.e. knowledge and skills, to play the social game and increase their capital assets (Bourdieu, 1977, 1984, 1988). Social actors employ social strategies, i.e. ideas, practices, and knowledge, in an attempt to improve their social position (Bourdieu, 1984, 1988; Lamaison & Bourdieu, 1986). Social actors, who have good sense of playing the social game, constantly employ useful social strategies and do "what needs to be done, what the game demands and requires" (Lamaison & Bourdieu, 1986, p. 113). The habitus gives people a sense of their place as well as a sense of the place of others in a social context, and social actors associate with some and distinguish from others by expressing the habitus (Bourdieu, 1995). The habitus is therefore instrumental for the reproduction of the social order over time, ensuring its tenacity precisely because it is experienced as natural rather than constructed (Gibson et al., 2007).
Although disability policy is supposed to guarantee access to social participation, disabled people are often socially distant in terms of power and resources. In this article I employ Bourdieu's sociology to study how identification and labeling is produced and reproduced within power relations. I furthermore use the concept of habitus to explore if the research participants constructed a universal and shared identity based on their embodied habitus of intellectual disabilities in their life histories.
The feminist scholar Kimberlé Crenshaw first introduced intersectional theory in the 1970s and used it to map the intersection of race and gender in shaping the multiple dimensions of Black women's experiences of employment and violence (Crenshaw, 1989). Since then, intersectionality has developed into an interdisciplinary theoretical framework for the analysis of diversity. The feminist scholar Lynn Weber is, like Bourdieu, concerned with people's struggles over society's resources. She uses the term intersectionality to explore the multiple dimensions of social relations in the oppression of subordinate groups in society (Weber, 2001). Weber and Parra-Medina (2003) argue that social categories such as race, class, and gender are interrelated systems of power relationships where dominant groups hold power over subordinate groups and use that power to secure society's resources, such as wealth, income, and education. Thus, social actors struggle for power and resources while dominant groups try to maintain their power and exploit subordinate groups who struggle to gain rights, opportunities, and resources. People's life-experiences are simultaneously shaped by these complex and interrelated socio-cultural systems of power (Weber, 2001; Weber & Parra-Medina, 2003). Weber (2001) does not include disability in her theoretical framework, but indicates that her approach could be used in the analysis of other social or power systems. Traustadóttir (2006) argues that disability shapes disabled people's lives and affects their "access to institutions, power and privileges" and works in a similar manner as gender and race (Traustadóttir, 2006, p.82).
In recent years intersectional theory has gained attention among disability studies scholars who have, for example, studied the intersection of disability, gender, race, and sexuality (Connor, 2008; Grönvik & Söder, 2000; Meekosha, 2005). For the purpose of this article I use Weber's (2001) intersectional theory to examine the interplay of the intellectual disability label and other social categories, such as religion and class, and how this interplay is represented in the participants' narratives.
This article is based on an inclusive life history research project carried out as a part of my doctoral studies in collaboration with a small group of young adults with intellectual disabilities in Iceland. An inclusive research paradigm emphasizes active participation of people with disabilities in the research process (Walmsley & Johnson, 2003) and encompasses both participatory (Chappell, 2000) and emancipatory research practices (Barnes, 2003). Increased participation and power of disabled participants over the research process is emphasized within these traditions and the common aim is to improve the lives of disabled people.
I used three criteria to recruit the participants: (1) young adults born in 1974 — 1984, (2) actively involved in various social activities, and (3) diagnosed or identified as having intellectual disabilities. The participants were three men and three women who were actively involved in various activities such as self-advocacy, sports, religion, online social networks and arts. Their experiences and social participation were diverse; for example, two were educated in inclusive school settings, two in self-contained special education classes, and two in segregated special schools. Also, three participants still lived at home with their parents and three participants lived on their own and received support with activities of daily living (e.g. cooking and cleaning). Four of the participants worked in the open labor market and two in sheltered workshops. All of the participants were native Icelanders.
Life histories were constructed collaboratively with each of the participants, who took active part in constructing their life histories, analysing the stories, writing papers and presenting at national and international conferences. Four participants chose to have family members or friends involved in the interview process. The biographical interviews were open-ended and unstructured and each interview ranged from about 20 minutes to over an hour. I met with each participant weekly for several months, some more often than others. The interviews were audio taped and we undertook in-depth interpretation of the material through discussions about their stories. In addition to the life histories, I gathered biographical material through participant observations in various social activities, such as in self-advocacy groups, sporting events and trainings, leisure activities and churches. The purpose of the participant observations was to gain a better understanding of the participants' life-experiences and social participation. The participant observations took place at the same time as the interview process and varied in time from one to five hours. The majority of the interviews and observations were undertaken in Iceland over a 3 year period; 2004 — 2006. At the end of the data collection period the biographical material was approximately 2000 pages of transcripts, field notes and other written material.
Life history research with people with intellectual disabilities is relatively new in Iceland (e.g. Sigurjónsdóttir & Traustadóttir, 2001; Stefánsdóttir, 2008). Narrative and life history approaches are common in research with marginalized groups (Plummer, 2001) and the narrative literature with people with intellectual disabilities is growing (e.g. Angrosino, 1998; Atkinson & Walmsley, 1999; Bogdan & Taylor, 1994; Booth & Booth, 1998; Goodley, 2000). Angrosino (1994) suggests that life history research with people with intellectual disabilities can be useful in demonstrating how the impairment is not a "monolithic condition" and that the label is only one of many factors in people's lives. (p. 14)
Deficit as Identity
After collaborating with the research participants on their life histories, we had a substantial amount of stories of good and bad times in their lives. All of the participants had, at some point, experienced rejection from peers and oppressive practices from professionals and carers. For example, Linda who is a self-advocate and had been educated in inclusive settings said:
I never got any useful support at school. The teachers did not understand my impairment some of the other students bullied me and treated me badly physically and psychologically1 .
And Sara who works part-time at a sheltered workshop said:
I can't use my right hand properly so it is difficult to take my jacket off. The staff at the sheltered workshop makes me take it off and hang it up in the entrance hall. I am not allowed to wear it inside. And now I have to make sure that my friend Egill who works with me can meet me in the entrance hall when I get to work to help me hang the jacket up. It is really high and I cannot reach it. I do not like this and they should not make me do this.
Despite negative life-experiences, the research participants did not attribute their difficulties to the intellectual disability label and generally did not view the label in a stigmatizing manner, which contradicts some of the previous research literature (e.g. Angrosino, 1992; Barron, 2002; Beart et al., 2005; Bogdan & Taylor, 1994; Edgerton, 1967).
Identification of others is produced and reproduced within power relations and social groups have unequal access to power and society's resources and this inequality largely depends on their social position and habitus. The label, intellectual disability, can be understood in terms of a nominal identity, i.e. a name defined by legitimate institutions and imposed upon people, including the participants in this study. Professionals representing the national and municipal authorities are in a legitimate position to evaluate people as deviant and treat them accordantly (Webb et al., 2005). Throughout history, the consequence of the nominal intellectual disability identity has been negative, for example, social exclusion and institutionalization (e.g. Barron, 1996; Deacon, 1974; Hunt, 1967). Linda talked about the nominal identity:
Other people often perceive intellectual disabilities to be about weaknesses and limitations. And professionals often think we are untalented and they hold little expectations for us. And some think we are just stupid and forget that we are people. I do not like when they call us retards [vangefin] or mentally retarded [þroskaheft]. That is not what we are.
The nominal identity is classified according to a specific "classificatory lexicon" (Jenkins, 2004, p. 23) or in other terms a diagnostic manual. If people's genes, IQ or adaptive behavior meets set criteria outlining the characteristics of intellectual disability, they are likely to be tagged with the label. The diagnostic manual is based on the deficit or medical understanding of disability, which views people in terms of individual abnormalities that professionals need to manage, rehabilitate, and fix (Barnes, 2003; Traustadóttir, 2006). The deficit model defines people with intellectual disabilities based on their inabilities and limitations and the labeling or Othering of disabled people, with the focus on individual impairment, can restrict people's identity formation (Hughes, 2002; Hughes, et al., 2005).
Bourdieu (1980) argues that people who are in a similar social situation and share economic or social status, also share a group habitus, i.e. similar attitudes and dispositions that are based on how they experience and perceive the environment (Bourdieu, 1977, 1984). According to the diagnostic manual, the expression of the intellectual disability group habitus can be expected to be a demonstration of poor social skills and lack of knowledge. However, none of these characteristics were represented in the life histories and the participants seldom spoke of their inabilities, but instead they spoke about their competence and achievements. For example, some emphasized their ability to use computers, others their knowledge of disability and human rights, and yet others how they had successfully participated in various social activities, such as church, sports, and self-advocacy. Björn, one of the participants in this research and a self-advocate, had explored what information was available on disability on the Internet:
There have been some important developments in disability policy in Iceland, but disabled people are still in a disadvantaged position in society. I have used the Internet to learn about disability policy in many different countries. It is for example very bad in Eastern Europe and disabled people sometimes have to beg for food in Turkey. Most of the information I found in Icelandic was from official legislatives offices and professionals. Very little was from disabled people themselves.
Björn argues that the unequal amount of space occupied on the Web by legislatures and the writings of professionals on the one hand and disabled people on the other hand is symbolic of the position of disabled people in the social structure. Disabled people are marginalized within a small space on the Web and, according to Björn's analysis, not easily picked up by search engines such as Google and Yahoo. Björn argues that if the only information people can get on intellectual disability is from legislatures and professionals, it does not give people who have been labeled as having intellectual disabilities much of an opportunity to inform others on the meaning of the label, which could explain the pervasiveness of the medical or deficit understanding of disability.
Expressing the habitus by identifying with particular groups and distinguishing oneself from others is part of people's identity definition. It seems illogical to expect people with intellectual disabilities to express the intellectual disability habitus in terms of deficits and incompetence since they have not themselves defined the nominal identity in these terms. Björn said:
Between the six of us [the research participants] there are very different experiences. It is also important how much we are aware of how people with intellectual disabilities were treated in the past. They were imprisoned in institutions. The history is hurtful. Not all of us [the research participants] know about these institutions. My experience has been hurtful at times. But other people have a different story to tell. Based on our different experience you cannot expect us to have a single shared identity. But I do feel some kind of solidarity with other people who have intellectual disabilities.
Since people with intellectual disabilities are such a diverse group with different life-experiences, a universal expression of the intellectual disability habitus does not seem plausible. However, the act of labeling and assigning the nominal identity to a group of Others could be recognized as an expression of the non-disabled or professional habitus, which reproduces the hierarchical distinctions between non-disabled people and people with disabilities. People with intellectual disabilities are positioned "outside of an accepted norm" (Gibson et al., 2007, p. 512) and through the external, i.e. day-to-day social experiences and interactions with other people they incorporate the nominal identity into their self-definition, at least to some extent (Gibson et al., 2007; Jenkins, 2004). Their reaction to the imposed nominal identity could take the form and shape of acceptance or it could evoke resistance.
Resistance as Social Strategy
The participants in the study come from a small country and are similar ages, however the nominal identity (intellectual disability) generated different consequences and experiences in their lives. Their experiences ranged from being in segregated special schools, self-contained special education classes, to inclusive educational settings; from working at sheltered workplaces, to having jobs in the open labor market; from living with their parents, to living independently with assistance. Jenkins (2004), drawing from Barth (1959), argues for the distinction to be made between nominal and virtual identities. As indicated before, the nominal identity is based on the shared name assigned to a group of people who possess particular characteristics, but virtual identity draws from the different experiences, consequences and meaning that the nominal identity holds for different people (Jenkins, 2004).
The nominal intellectual disability identity is powerful and interacts or in some instances interferes with the virtual identity. Jenkins (2004) claims that there can be a discrepancy between the nominal and the virtual identity. An example of this discrepancy is when adults with intellectual disabilities who are by definition nominally adults are treated as children. All of the research participants had experienced patronizing practices and are often viewed as eternal children based on the nominal intellectual disability identity. They often had to struggle for their self-determination and the nominal intellectual disability seemed to interfere with the virtual identity of adulthood. For example, Gunnar said:
My sister cut my hair. I wanted to have long hair. It is my hair and I should decide ... I want to go by myself to the amusement park and the movie theatre and to cafés. I do not always want to go with my family ... I want you to tell people that I am a young handsome man.
Although the research participants had negative experiences of the label, they did not dwell on those stories and they did not view themselves as victims. Disability or impairment had different meanings in the lives of the participants. For example, to Sara it was restricted use of her right hand, to Anna it was her impaired hip, to Jónas it was his bad back, and to Gunnar it was not being taken seriously as an elite athlete. Linda talked about what intellectual disabilities meant to her:
As a self-advocate I perceive intellectual disabilities to be a label imposed on people who have difficulties learning. Not all things. And it is very different for different people. Some people have difficulties learning in schools, while others might be faced with different problems. Also, some people are faced with more severe difficulties and I do not think it has to do with IQ. It has to do with the environment. All of us have weaknesses and strengths, but we know our limits. We don't want people to feel sorry for us. We want them to see our strengths. We should be allowed to participate in society on our own terms and become part of society.
Björn and Linda were active self-advocates who had adopted a social understanding of disability and made a conscious decision to claim the nominal identity of intellectual disabilities for the purpose of constructing a different and more positive meaning of the label. The discrepancy between the nominal intellectual disability identity and the life histories could be interpreted as resistance to the label and the deficit understanding of disability. Bourdieu (2005) argues that social actors employ a set of ideas, practices, and knowledge as social strategies to improve their social positions. The resistance to belittling views and the medical definition of the label can be understood as a social strategy employed by the research participants who are claiming authority over the nominal identity by reconstructing the label and telling stories of competence and abilities.
It would be easy for Linda to pass as non-disabled and in our research collaboration she has often taken the lead. Linda feels comfortable talking about her impairment and she is not ashamed of it. We have spent much time discussing her involvement in the self-advocacy group and how it has influenced her life. Linda feels empowered through participation in self-advocacy and is confident that it will lead to social change:
Self-advocacy groups are very important in making us heard. When I joined Átak [self-advocacy group] I knew that it was a place to discuss our issues. If we do not voice our opinions in public we will never get the same rights as other people. I think that it has been a valuable experience to join this group and take part as an active self-advocate. It has also given us the courage to speak up at conferences, meetings and other venues.
Linda and Björn are guided by the international self-advocacy movement and claim an identity that is considered deviant and perceived in negative manners by most non-disabled people (Goodley, 2003). Goffman (1963) claims that when individuals are identified as deviant they are stigmatized and excluded from full social participation and acceptance. According to Goffman's ideas, the deviant individual needs to manage his or her "spoiled identity" by concealing the impairment or passing as normal. Passing is easier for those with invisible disabilities and that would include many people with intellectual disabilities (Goffman, 1963). Garland-Thomson (1996) claims that passing is both compelling and seductive in a discriminatory society:
The notion that someone with a very visible physical disability might 'come out' perhaps seems oxymoronic to those for whom the cultural assumptions that structure the normal remain unquestioned. Indeed, pressures to deny, ignore, normalize, and remain silent about one's own disability are both compelling and seductive in a social order intolerant of deviations from the bodily standards enforced by a quotidian matrix of economic, social, and political forces. (p. xvii).
Previous studies have argued that people with intellectual disabilities attempt to pass as normal by denying the spoiled and stigmatized identity associated with intellectual disability and not incorporating the impairment into their self definition (e.g. Harris, 1995; Todd & Shearn, 1995; Finlay & Lyons, 2005). However, Rapley et al. (1998) suggest that passing or being ordinary implies that people with intellectual disabilities are aware of the "societal consensus on the toxicity of the imputed identity" (p. 825). None of the participants concealed their impairment in their narratives. However, they told stories of numerous occasions when people questioned the validity of their impairment because they had shown abilities and talent, which brings us back to the dominant discourse or the non-disabled habitus that ascribes the meaning of inabilities to the intellectual disability label.
As self-advocates, Linda and Björn had made a conscious decision not to conceal their impairment. In fact, they risked social exclusion and discrimination by claiming the nominal identity of intellectual disability. In Shakespeare's (2006) terms they were using the label as a badge for political purposes. They have participated in various self-advocacy activities and presented themselves as experts on the issue of intellectual disability; they have been listened to as well as challenged at conferences, in the media and at academic venues. However, there are limited opportunities for people with intellectual disabilities in Iceland to participate in organized self-advocacy since there is only one formal self-advocacy group in the whole of Iceland, which again reduces their possibilities of having influence on the meaning of the nominal identity of intellectual disability.
The main focus of this article has so far been on the act of labeling and the label as identity, but the life histories collected for the purpose of this research reveal that the participants identified, at different times in their narratives, with diverse social categories, such as gender, class, and religion. I will now turn to Webers' (2001) ideas about intersectionality. As indicated above, intersectionality refers to the idea that people's life-experiences are simultaneously shaped by complex and interrelated socio-cultural factors, such as race, gender, and class (Weber, 2001).
The social participation of the research participants was, with few exceptions, within segregated activities organized for people with intellectual disabilities, such as Special Olympics and segregated continuing education classes. Access to these activities and services can be linked to the identification of different sub-categories of intellectual disabilities, i.e. particular labels allow you access to certain services. Gillman et al. (2000) suggest that there is also the risk of exclusion associated with labeling if people have not been identified with the correct label for particular services, which in turn restricts their social participation. The issue of limited finances was a recurrent theme in relation to social participation or the lack thereof. Most of the participants relied on income below minimum wages or benefits (social insurance) from the state, which automatically positioned them in a low socio-economic class and restricted their access to cultural events such as theatre, concerts, and the cinema.
Anna's living situation was unique for the participants in this research. While she still lived with her mother, she had made a down-payment on her own apartment and was becoming a proud homeowner. Anna had been working part time in the open labor market for several years when the research took place. Anna led an active life; she had trained in swimming for years for the Special Olympics, and usually walked or rode her bike to work. She did not drink or smoke, and she tried to lead a healthy lifestyle, but gym memberships and health food are expensive in Iceland and not within the price range of people with limited financial means. Although Anna worked in the open labor market she was still reliant on the disability pension and somewhat financially restricted by the socialized Icelandic welfare system. Therefore, she did not have the aesthetic freedom to choose the lifestyle she desired and she often had to settle for choices based on necessity (Bourdieu, 1993). For the purpose of this research I treat lifestyle as a social category that is affirmed by consumption patterns and people's social positions (Bourdieu, 1984; Jenkins, 2004). Anna's narratives were shot through with references to a healthy lifestyle, but it was not a stable identity and it was intertwined with her socio-economic status, which seems to be closely connected to the intellectual disability label in her case and others with similar impairments in Iceland.
Anna enjoyed her work and was included in various social activities at her workplace, but she also had many friends with intellectual disabilities. In a sense she was living in two worlds. She took part in mainstream society through work but faced barriers in social participation because segregated activities were often her only choice. Exclusionary practices can influence people's identity formation and can cause them to develop an excluded self-concept. Inclusion in society is therefore an important factor in developing a positive included self-concept or identity (Borland & Ramcharan, 1997). Anna's membership to two different social groups, included and excluded, was located at the intersections of her social identity and through her narratives she negotiated and managed these included and excluded identities (Borland & Ramcharan, 1997; Weber, 2001).
Jónas lived in a rural area and his narratives contained various self-descriptions and references to different social categories. He frequently told stories from his hometown and positioned himself both geographically and socially in his narratives. References to religion were particularly noticeable in his stories and intersected with the social category of disability. Jónas was the only participant in this study who did not have any disabled friends. There were few organized activities for people with intellectual disabilities in his hometown and he did not have access to a self-advocacy group. Most of Jónas' friends belonged to his church and they had been friends since childhood. When Jónas was a teenager he felt left out by his friends in school and church. At school he was bullied and some of the students pretended to be his friends only to be able to reject him and exclude him. Despite it being a hurtful experience, it did not compare to the sadness he felt when his "Christian brothers and sisters" as he called them, did not include him in their social activities. Being left out by the youth at church threatened his Christian group membership, which was an important source for his identity formation. A tension was created between his position inside the accepted norm, as a Christian man, and his position outside the norm, as a man with intellectual disabilities. He felt totally let down by his friends, but employed a social strategy that is accepted in Christian communities, i.e. forgiveness. Jónas expressed a sense of empowerment derived from his faith and believing that Jesus Christ had also been betrayed. I understood Jónas to be affirming his Christian identity by forgiving his friends and on numerous occasions he said: "Forgiveness is a Christian thing".
Many of Jónas' friends had moved to the city for college or work and most of his free time was spent with his family, people from church, or on his own. Jónas traveled to the city few times a year to visit friends, participate in church activities and in other social events, even though it was expensive and a long journey. Jónas also kept in touch with his friends by phone and the Internet. Furthermore, he had made new friends who shared his religious interests through online social networks such as Myspace and Facebook. Interestingly, online he did not think it was important to reveal the nominal intellectual disability identity and his primary online identity was as a Christian.
Björn had always done well in school and was educated in semi-inclusive settings, which was not common 20 years ago when he attended compulsory school. Björn said:
Three of us needed support and the school paid for a special education teacher to assist us. Every so often we would go into the special education classroom, but generally we were in the same class as the non-disabled students. Then the teachers decided I should go to a special school, but I did not fit in there. I was just educationally much more advanced than the other children. I also studied English at my old school, but there was no English at the special school. It was my favorite subject. I can speak and read English well and also Swedish I went back to my old school and I liked it better, even if I was teased and bullied by some of the other boys. But when I made friends with some older boys the bullying stopped.
Björn was very passionate about finishing his compulsory education in the mainstream school and fought for his place there. He convinced his parents and teachers that it would be better for him educationally. He also employed social strategies to make the bullying stop, i.e. he figured out with whom he had to make friends in order to be protected from the bullies.
After Björn had completed compulsory education he went to a technical college that had a two-year training program for people with intellectual disabilities. Since then, he has completed some computer classes for disabled people both in Iceland and Sweden and his computer skills are advanced. He had hoped to enroll in a mainstream computer course at a local technical college, but was denied admission because of his impairment. Björn said: "They were not interested in what I was capable of doing, just what I once could not do". His computer skills and abilities to learn are overridden by the nominal intellectual disability label, which interferes with his educational opportunities and threatens his self-concept as "a good student and a computer geek". All of the research participants had experienced difficulties accessing mainstream education and many of them were dissatisfied with the educational opportunities they had. Anna spoke often about her compulsory school:
After I had been diagnosed as having intellectual disabilities I was not allowed to go to my neighborhood school and had to go to a special school. Because it took me longer to learn than other children the special school was not too bad, but I am just disappointed that we did not learn English, history and geography. Maybe these are not interesting subjects, but it is what non-disabled children learn. They did not teach these subjects when I was at the special school. I am just disappointed about not learning these things.
After completing compulsory education, some of the research participants had opportunities to attend upper-secondary schools, but they mostly took part in segregated continuing education classes for people with intellectual disabilities. The participants belong to the so-called integration generation (Gustavson, 1999) and did not grow up in total institutions; they were however totally institutionalized into the Icelandic social service system. Björn said:
You are aware of the system and the complexity of it in all your practices. It puts pressure on you, like you could not imagine, only to be compared to deep ocean pressure.
The process that Sara needs to initiate when she wants to visit her boyfriend is a good example of the complexity of the system that Björn refers to in his story. A simple meeting between lovers turns into a complicated process that involves numerous professionals and resembles a Rube Goldberg invention; "[ ] complicated invention, laboriously contrived to perform a simple operation" (Wolfe 2000, p. 8). This is how it goes: (A) Sara and her boyfriend Einar talk on the phone and decide that they want to meet; (B) Einar clears it with the staff at his group home that Sara can visit; (C) Einar rings Sara back and confirms the time and date of their meeting; (D) Sara asks her support staff to arrange for the Transport Services; (E) the support staff book the car; (F) the support staff confirm that they have booked the ride; (G) Sara rings Einar back and confirms the meeting based on the schedule of the Transport Services; (H) Sara is driven to her boyfriend's home; (I) the meeting takes place; and (J) the Transport Services collects Sara at a pre-arranged time whether she is ready or not. Sometimes the transport arrives too early and sometimes too late. We joked that their motto should be: Hurry up and wait.
Two of the participants were reliant on the Transport Services and it had a great influence on their social participation. It meant it was no longer their private matter where they wanted to go, who they wanted to meet, what to do, and when to do it. They had to make plans and book the Transport Services at least one day in advance and not on Sundays. As part of this research I participated in various social activities with the participants. One time I attended evening prayer organized for people with intellectual disabilities at a church in Reykjavík. Towards the end of the service, when people were lighting candles in remembrance of loved ones who had died, the church door was pulled opened and a driver from the Transport Services yelled out someone's name and told him to hurry up. The tranquility was interrupted and I wondered if this would ever have happened in a regular church service.
Although I have brought attention to particular social categories and how they interacted with the label of intellectual disabilities in the life histories, all of these different categories simultaneously interact with each other and shape the life-experiences of the participants. According to Weber's (2001) intersectionality theory, social categories, such as, gender, race, and class, are systems of oppression and society is based on these interconnected systems of social hierarchies that are embedded in all social institutions and experienced by members of society through everyday life and social interactions. Dominant groups control society's resources and social institutions, such as the educational system and the media, and these institutions legitimate society's ideologies that make social inequalities appear natural (Bourdieu, 2005; Weber, 2001). The meaning of different social categories is therefore socially constructed and "develops out of group struggles over socially valued resources" (Weber, 2001, p. 80). The meaning of intellectual disabilities is socially constructed in terms of limitations and deficits based on the legitimate non-disabled professional ideology and the label interacts with other social categories in people's lives, whether they resist or accept the dominant meaning of the label.
In this article, I have demonstrated how complex and ambiguous identity formation is and its relation to the social participation of people with intellectual disabilities. The participants identified with different social groups at different times during the research, and as their narratives demonstrate they cannot be summed up to a single identity. The assumption that people with intellectual disabilities will spontaneously incorporate their impairment into their self-definition is grounded in the deficit understanding of disability that presupposes that disabled people internalize their limitations and that the label is constant and never changing.
The research participants resisted society's reflection by rejecting the medical label of intellectual disabilities and demonstrated competence and achievements. Rejecting the label or passing as non-disabled has been viewed as an indicator that people are ashamed of being disabled (Linton, 1998), but I argue that the participants were neither in denial nor ashamed when they passed as non-disabled. They were negotiating impairment and identity in a disabling society and it is too simplistic to view these practices only in terms of passing. In order to pass successfully as non-disabled one needs to be identified as such. On several occasions, the participants' diagnosis had been questioned on the basis of their abilities and they had been defined or accepted as non-disabled. This case of mistaken identity is symbolic for the stereotypical and belittling views that non-disabled people hold when they presuppose that people with intellectual disabilities are incompetent and all alike. It also demonstrates the ambiguity of the intellectual disability label and the participants had in different circumstances been denied services and support on the basis of being either too intellectually disabled or not enough.
As a group, people with intellectual disabilities are diverse, but there are common consequences of the label such as restricted access to society's resources and social discrimination and exclusion. Shakespeare (1996) argues that oppressive social relations can lead to negative self-identification. Disability policies, services, interaction with staff and professionals, limited range of services, and public discourse have also been named as shaping negative and restricted personal identities (Antaki et al., 2007; Gibson, 2006; Rapley, 2004). This leads us to the question of the usefulness of the intellectual disability label. While Bogdan and Taylor (1994) emphasize how meaningless the label is, Davis and Jenkins (1997) argue that they ignore how the label allows access to services.
I argue that we need to ask questions about the costs of labeling or accessing services — what is forgone and what is gained? Angrosino (1998) suggests that it is not economically, politically, or legally beneficial to contest the label because it does allow for legally protected support for people with intellectual disabilities. Since 1979, people with intellectual disabilities in Iceland have had a formal right to social participation, but the participants in this research reported inconsistency between their rights and their lived experiences. At times they had paid a high price for the label of intellectual disability and faced many and complex restrictions because they did not have access to society's resources, such as employment, education, and social networks. Their narratives included statements about good support, but more often about bad practices and substandard services, which is too high of a cost for being tagged with a label that is grounded in a deficit understanding of disability. This needs to be further addressed in research and by professionals, service providers, and policy makers who also should be aware of how they contribute to the meaning of intellectual disabilities.
I thank Scot Danforth, Rannveig Traustadóttir and James Rice for comments on drafts of the article and the Icelandic Graduate Research Fund (RANNIS), the University of Iceland Eimskip Fund, and the Icelandic Ministry of Education, Science and Culture for supporting the doctoral research project. I also thank Dan Goodley, Ingólfur Á. Jóhannesson and Hanna Björg Sigurjónsdóttir for ongoing support.
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The author of this article translated all direct quotations.
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