Sami people experience a wide range of challenges in their dealings with health and social services (Blix 2016). In general, Sami service users are found to be less satisfied (Nystad, Melhus & Lund 2008) and have less confidence (Daerga et al. 2012) with health services than the majority population. This is largely due to a lack of opportunity to speak their own language and a shortage of Sami cultural competence within health and social services (Hedlund & Moe 2010; Sørlie & Nergård 2005). However, little is known so far about the circumstances for disabled people of a Sami background (Huuva 2014).
From previous research, people with disabilities are known to generally have poorer living conditions and fewer opportunities to participate in different social arenas than the rest of the population (Kittelsaa, Wik & Tøssebro 2015; Söderström & Tøssebro 2011). Based on this, it would be reasonable to assume that people of a Sami background with disabilities may have a ‘double disadvantage’, and that they risk marginalisation along both dimensions, a mechanism that Rousso and Wehmeyer (2007) referred to as ‘double jeopardy’ when analysing gender and disability.
In a research project on everyday life amongst Sami people with disabilities, we explored three questions in particular: how they experience everyday life, how they experience life transitions (e.g. from school to work, from childhood/adolescence to adulthood), and how and to what extent they participate in different democratic processes.1 Since research on these topics is scarce, the purpose of the project was to attain a deeper understanding of the everyday experiences Sami people with disabilities have in the three areas mentioned above.
The Norwegian government has officially declared the Sami as indigenous people of Norway (ILO convention no. 169 1990). Hence, the Sami language, culture, and ways of living have a different legal status from that of immigrant ethnic minorities in Norway; that is, Sami people, according to the convention, have the right to exercise control over their way of life and maintain and develop their identity, language, and religion within the framework of the Norwegian state. As pointed out by Olsen (2017), the Sami have often been perceived as one of several ethnic minorities. Olsen argued that the correct description is that some Norwegians are Sami, and that the Sami are part of an ‘us’ rather than being ‘the others’. However, this should not be viewed as an argument for assimilation, but rather an acknowledgment of the distinction between, and perhaps the different experiences of, ‘ethnic minorities’ and ‘indigenous people’.
In this article, we use this assumption as a point of departure to analyse the experiences of Sami people with disabilities in Norway within an intersectional theoretical framework. Since research on the circumstances of Sami people with disabilities is scarce, we draw on literature surrounding ethnic minorities and disability to explore whether the experiences of disabled Sami people and people from ethnic minorities are similar or different concerning important everyday life experiences. In this article, we limit our scope to a Norwegian context, since our data stems from a project on disability and Sami background in Norway. However, since some studies show similar situations between Sami people in Norway, Sweden, and Finland in regard to health and discrimination issues (Hansen 2012), it would be reasonable to expect that at least some of the dimensions in our study will show similar patterns in Sweden and Finland.
The Sami are the indigenous people of Sapmi, a territory including the northern parts of Norway, Finland, Sweden, and Russia. Due to a long period of cultural assimilation, it is difficult to provide the exact number of Sami living in this area, but it is estimated to be around 70,000–110,000 individuals (Bjerregaard & Young 2008). There is cultural variation in the way of life amongst Sami in Norway. Traditionally, they were engaged in reindeer herding, farming, and fishing (Lund, Brustad & Høgmo 2008). However, only small groups hold onto this traditional way of life today. The majority has adopted a more common western lifestyle, maintaining modern professions and dietary habits (Sjolander 2011).
As an indigenous minority in Norway, the Sami have been exposed to forced assimilation, discrimination, and prejudice from the majority society (Turi et al. 2009). Hansen (2011) pointed out that ‘The Norwegianisation process alludes to the Norwegian government’s Sami policy, which was publicly initiated in the mid-19th century and abolished in 1959, with the aim of acculturating the Sami minority into the Norwegian culture. In “official discourse”, the Sami were described as inferior, uncultured and partially without material rights. Plain and simple, the goal was to assimilate the Sami and impose a language change on them. The dominant perception was that the Sami were on a “low” cultural level’ (Hansen 2011). The government assimilation process limited the use of the Sami language, Sami names, traditional culture, religion, and identity (Niemi 1997).
However, the situation has changed today; in recent decades, there has been a Sami ethnic and cultural revival (Hansen, Melhus & Lund 2010). Sami parliaments were established in three Nordic countries (est. 1989 in Norway, 1993 in Sweden, and 1996 in Finland). Other institutions, like Sami college and Sami research centres, have been established, and Sami students are offered education in the Sami language. More young people speak, read, and write Sami than ever before. Many Sami today possess a sense of cultural awareness and ethnic pride (Turi et al. 2009). For example, values such as connecting with nature and preserving Sami industries and ancestral family traditions are important to the Sami (Hansen, Høgmo & Lund 2016). Still, there are considerable geographic variations as a result of the assimilation policy and the subsequent political, cultural, and linguistic revival. In the core areas with a high density of a Sami population, the presence of structural and practical support for Sami culture is much stronger than in more sparsely Sami-populated areas (Turi et al. 2009).
Today, many Sami people combine their Sami identity with a Norwegian one (Selle et al. 2015). Although generally treated as equals in Norwegian society today (Pedersen & Høgmo 2012), Sami people are still more likely to experience ethnic discrimination and bullying than the majority Norwegian population (Hansen et al. 2008; Gjertsen et al. 2017).
Intersectionality, as a research perspective, highlights how power relations in ordinate/subordinate positions are formed in the crossings – or intersections – between different social categories. Such categories may include gender, social class, disability, ethnicity or age. The origin of the perspective stems from an anti-racist, post-colonial critique of so-called ‘white’ feminism (Crenshaw 1995). Hence, intersectionality was originally seen as an analytical tool for studying, understanding, and responding to the ways in which gender intersects with other identities and how these intersections contribute to unique experiences of oppression and privilege. The argument was that hegemonic feminism was based on white middle-class women and their experiences, which made feminism less able to meet and understand the experiences of other women. Today, researchers use the concept of intersectionality in a much broader sense to explore different dimensions of oppression and inequality that do not necessarily include gender.
De los Reyes and Mulinari (2005) argued that the strength of intersectionality, as a perspective, is that it serves as a tool for ‘developing a theoretic perspective that connects power and inequality with each individual’s agency within societal structures, institutional practices and prevailing ideologies’ (ibid., p. 16, our translation). An important element in understanding individual agency as embedded in practices and ideologies is to avoid analysing social categories as separate structures that occasionally cross paths. Rather, it is necessary to have a keen eye on how inequality categories cross and what meaning or impact such crossings bear on people’s everyday experiences. Crenshaw (1995) put it like this: ‘Feminist efforts to politicize experiences of women and antiracist efforts to politicise experiences of people of color have frequently proceeded as though the issues and experiences they each detail occur on mutually exclusive terrains. Although racism and sexism readily intersect in the lives of real people, they seldom do in feminist and antiracist practices. And so, when the practices expound identity as “woman” or “person of color” as an either/or proposition, they relegate the identity of women of colour to a location that resists telling’ (ibid., p. 326).
Intersectionality perspectives also provide a theoretical foundation to avoid falling into the trap of pre-determining what effect that crossing two inequality categories may have. Researchers sometimes argue – either explicitly or implicitly – that if people belong to more than one oppressive structural relation, the effect will constitute a ‘double handicap’ (Brooks & Deegan 1981), ‘double jeopardy’ of marginalisation (Rousso & Wehmeyer 2001), or ‘double discrimination’ (Reyne et al. 2007). Such ‘additive’ ways of thinking about inequality axes imply that inequality dimensions are understood to automatically covariate as double negative or double positive, which may not always be the case. Especially relevant to the topic of this article, some authors have argued that belonging to an ethnic minority and being disabled does not necessarily constitute double oppression. Rather, it may be simultaneous oppression that affects people’s lives personally, socially, and institutionally, as well (e.g. Stuart 1992, 1993). Fuentes (2016) presented a literature review of some of the research contributions on this topic in a Nordic context. He pointed out that a large majority of studies on disability and ethnicity have concerned questions on how disability is understood as a phenomenon in different ethnic minority groups. There are also some studies analysing the everyday experiences and challenges that a disabled person of ethnic minority background faces when dealing with culturally insensitive public services (Calbucura 2000, in Fuentes 2016).
According to Fuentes (2016), when studying everyday experiences of disabled people of an ethnic minority background, there are two different perspectives that are equally applicable whilst also being important to distinguish between. The first is a structural perspective, focusing on processes of marginalisation that result from belonging to two different subordinate positions. The other is an actor-centred perspective, whereby concepts like identity and belonging are viewed as central to the analysis. Hence, Fuentes’s contribution may be seen as an attempt to build a bridge between two different dimensions of intersectional theory. De los Reyes and Mulinari (2005) argued that gender, social class, and ethnicity should be regarded as socio-material dimensions, whilst categories like sexual identity, disability, and age are better understood as cultural dimensions that are shaped through discursive stigmatisation in modern societies. Considering Fuentes’s perspective means that the characteristics of the different social categories do not need to be decided ahead of time.
In Norway, both the indigenous Sami people (Minde 2005) and disabled people have a history of marginalisation (Owren 2008). Furthermore, earlier research (Cunningham, Kanyinke & Sena 2013) has shown how the combination of belonging to an indigenous group and having an impairment puts people at risk of double discrimination, as we have previously argued, even if it does not necessarily occur in every situation or context. This makes an intersectionality perspective relevant, describing marginalisation due to the conjunction of being Sami and having an impairment and exploring how this combination of different statuses may form patterns that are unique to the context (Fekjær 2010; Orupabo 2014). Consequently, in this article, we empirically explore whether disabled people’s experiences of belonging to an indigenous population, such as the Sami people, are parallel or different to the experiences of other ethnic minorities with disabilities.
In recent years, ethnicity has gained more attention in disability research. Internationally, disability research has been criticised for being blind to differences between various ethnic groups in terms of the experiences and consequences of having a disability (Stienstra & Nyerere 2016, Block et al. 2001). Several empirical contributions have more recently emerged on the situation for people with disabilities in different ethnic groups (see, for instance, Stienstra & Nyerere 2016; Warner & Brown 2011).
A literature review of research on the situation for ethnic minorities with disabilities reveals some common findings. Several studies have found that disabled persons of minority background experience the disability differently from that of disabled persons with a majority background. For example, they have inadequate access to service provisions due to welfare services that are standardised and tailored to the needs of the majority, which do not take cultural diversity into account (Ali et al. 2001; Fazil et al. 2002; Söderström 2013) or embrace cultural sensitivity in service delivery (Raghawan & Small 2004). Disabled persons of a minority ethnic background experience additional challenges concerning language and communication and stereotypical perceptions and expectations (Poulsen 2006; Söderström 2013). The combination of language difficulties and little knowledge of the welfare system makes it extra difficult for them to gain access to necessary services (Söderström, Kittelsaa & Berg 2011). In the Nordic countries, important empirically-based research contributions have analysed immigrant families’ experiences of having disabled children (Fladstad & Berg 2008; Poulsen 2006; Söderström 2013; Söderström, Kittelsaa & Berg 2011; Sørheim 2000) as well as disability/ethnicity from an intersectional perspective (Berg 2012; Fuentes 2016; Shaw, Chan & McMahon 2011; Warnerab & Brownc 2011).
In recent years, there has been growing attention to the situation of indigenous people with disabilities. In 2016, there was a UN special meeting on indigenous people with disabilities in Geneva, and some research studies have gradually addressed this group. Some of this research has focused on methodological aspects (Gilroy et al. 2018; Soldatic et al. 2018), whilst others have focused on the experiences of indigenous people with disabilities (Hokkanen 2017; Melbøe 2018; Stienstra, Baikie & Manning 2018; Uttjek 2016).
The focus of this article is on how the two oppression relations – being a member of the Sami community and being disabled – are combined and intertwined in people’s everyday life experiences. It may be argued that, although Sami people have the status of being indigenous, their experiences in dealing with the majority society may, nonetheless, have similar characteristics to those of ethnic minorities in Norway. Indigenous people and ethnic minorities are in a subordinate position in a society formed by the majority’s norms and values. Due to the fact that research on disability and Sami background is lacking, we, therefore, draw on research surrounding disability and ethnic minorities (Byrd and Rothberg 2011). Fuentes (2016) showed that people belonging to both categories (ethnic minority and disability) are at risk of experiencing two different marginalisation processes, particularly when dealing with welfare services. He presented one process as ‘culturalization’ and the other as ‘homogenisation’ (Fuentes 2016). The first type of marginalisation process represents situations in which the focus is placed on the disabled person’s culture, and all experiences are interpreted as cultural aspects related to the individual’s ethnic background. ‘Homogenisation’, on the other hand, denotes a situation in which attention is placed almost entirely on the impairment, and disabled people are treated the same regardless of their cultural background.
Sami people are the indigenous population of Norway. They have a different historical and contemporary status than ethnic minorities, especially as they are not defined as an ethnic minority. Furthermore, some have argued (see, for instance, O’Sullivan 2014; Kuppers 2013) that indigenous people have distinctly different life experiences than groups defined as ethnic minorities in a given society. Thus, the question we ask in this article is whether disabled people’s experiences of belonging to an indigenous population, like the Sami, are parallel or different to experiences of other ethnic minorities in society. Do the research findings from studies of the social category ‘ethnicity’ also cover indigeneity, or might it be beneficial to look for experiences that are unique to people belonging to an indigenous group?
This article builds on data from a qualitative study exploring the everyday life of disabled Sami people in Norway. The study was carried out by the research group, ‘Diversity and Tolerance’, at the Arctic University of Norway (Melbøe et al. 2016). The group consisted of researchers both with and without Sami background. Performing research with Sami people is complicated, as there is no common definition of Sami identity (Lund et al. 2008). Furthermore, there is no public register of Sami people in Norway other than the Sami Parliament’s electoral roll (which is not accessible to researchers) (Pettersen & Brustad 2013). Consequently, when conducting research, Sami identity is determined in different ways, for example, using language or geographic residence as markers for Sami affiliation (Brustad et al. 2009). The inclusion criteria for informants in our study were that the participants perceived themselves as Sami and had one or more Sami-speaking ancestors. However, due to assimilation policies, many Sami have abandoned their Sami identity and avoid reporting their ethnicity (Bjørklund 1985). This made the recruitment process difficult regarding both identifying and making contact with potential participants (Melbøe et al. 2016).
We carried out 31 semi-structured interviews with 24 disabled Sami people and/or 12 of their guardians or next of kin. The disabled Sami participants ranged from seven to 88 years of age, mainly adults. Amongst the 31 participants, there were 22 boys/men and nine girls/women. We did not plan such a gender imbalance, as this was a consequence of recruitment through snowball sampling; this method refers to a strategy where one involves existing study subjects in recruiting future subjects from their acquaintances, possessing the same characteristics from which they themselves were recruited (Thagaard 2013). The participants had either physical, sensory, mental, or cognitive impairments. The broad heterogeneity in type of impairment had implications on how we carried out the study. For example, when interviewing participants with intellectual disabilities, a simplified version of the interview guide with simpler language was used to make the questions easier to understand. The study was conducted from April 2014 to December 2015. We recruited participants from the North, Lule, and South Sami language areas. Consequently, we provided all information about the study in these three Sami languages, in addition to an easy-to-read version in a simplified Sami language. The latter was provided such that Sami people with intellectual disabilities could also read the invitation to participate in the study or have it read to them. We recruited participants through a number of channels: health and social services and the media, as well as Sami and disability organisations and networks.
During the interviews, we applied a semi-structured interview guide consisting of open questions and the opportunity to tell stories about their lives. The participants chose whether they wanted to be interviewed in Norwegian or Sami (either North, Lule, or South Sami). We recorded and transcribed all of the interviews except one. The interviews were analysed using what Kvale (1996) described as meaning structuring through narratives. We constructed coherent stories out of the events that three of the informants reported, whereby the ‘new’ stories were condensed versions of the scattered stories from the original interviews. The three stories were selected because they illuminate the theme of this article in interesting and particular ways: how indigenous people with impairments may have distinctively different experiences of oppression than other ethnic minorities.
As this is a qualitative study with few informants, statistic generalisation of our findings is not possible. However, analytical generalisation is possible. According to Thagaard (2013), in qualitative studies, interpretation sometimes makes it possible for transferability to be connected to recognition. Recognition in this context means that arguments developed from particular stories and contexts might be experienced as relevant for other stories in other contexts. The transferability implies that the interpretation gives a deeper meaning to earlier knowledge and experiences whilst also exceeding the reader’s existing understanding.
As the participants are Sami with impairments, they could be perceived as members of two marginalised groups. This can create both ethical and methodological challenges that require special awareness (Melbøe et al. 2016), as also stated by researchers and activists writing about other indigenous people (see for instance Gilroy et al. 2018). Due to the Sami people’s experiences with a harsh discrimination process where they were denied their own culture and language (Minde 2005) and their negative experiences with past research (Schanche 2000), we made some special precautions. In respect for the Sami’s right to control the knowledge production about themselves, at the very beginning of the project, we visited the Sami Parliament to ask the Sami society about what Marit Myrvoll (2002) called ‘collective consent’ to conduct our study. Applying for collective consents might be done differently in indigenous settings other than Sami (Gilroy et al. 2018). The Sami Parliament approved the study and their suggestions for improvements were taken into account, for example, including individuals from Lule, Southern, and Northern Sami areas as participants. Moreover, we established a reference group consisting of representatives from Sami and disability organisations who advised us in the research process, and we presented the results and discussed them with Sami representatives at some of the Sami language and cultural centres. Furthermore, our study was carried out in accordance with the National Ethical Committee for the Social Sciences and was approved by the Norwegian Social Science Data Service. We anonymised the participants, for example, by giving them pseudonyms and not revealing their exact type of impairment. Participation in the study was voluntary. All participants received written information about the project and gave written consent to participate (or their next of kin or guardian for minor participants and/or those lacking the ability to provide informed consent themselves). The Nordic Centre for Welfare and Social Issues (NVC) has funded the study.
To clarify how indigenous people with impairments may have distinctly different experiences of oppression than other ethnic minorities, we will present three stories. From an intersectional perspective, it may seem strange that all three stories refer to male subjects. However, there was an overrepresentation of men in our study (22 men and 9 women), and the interviews with males happened to provide stories that reflected experiences unique to indigenous people. Whether this was coincidental is difficult to assess.
The stories highlight topics that are central in most people’s descriptions of the course of life: language and access to language education, access to and experiences with the educational system, and work. In analysing the stories, we looked for experiences that may be parallel to those of ethnic minorities. At the same time, we explored the stories, looking for experiences that may be perceived as unique or as having distinct forms related to the informant’s indigenous Sami background.
Per is a young Sami man who lives with his family in Sapmi. The family’s first language is Sami; however, Per did not learn the Sami language. As a young boy starting school with a hearing impairment that he had since birth, his teachers felt it would be too difficult for Per to become bilingual and decided that he should only learn Norwegian. According to Per, this professional decision has had considerable negative consequences throughout his life. He described how speaking Sami is crucial to developing close social relations with his family and the Sami community: ‘All my relatives speak Sami, but I haven’t been included since I don’t.’ He stresses that his lack of Sami skills has also excluded him from many other settings, such as gatherings with friends, political committees, and organisation/activist work. Per has felt left out of the Sami society and is terribly saddened to never be included due to his lack of skills with the language. Moreover, according to him, today he ‘handles English very well, which means I could have learnt Sami, too…’ Despite being Sami, today Per feels offended when information is only given in Sami, for example, considering reading or signing political documents. He stated that information should either be given in both Sami and Norwegian or only in Norwegian but not just in Sami, so that everybody can have the chance to understand.
Per’s story illustrates how his access to Sami family, culture, and identity has been challenged as a result of the school denying him education in Sami. Per’s parents trusted the professionals, who determined that Per would be better off choosing to learn Norwegian at the expense of his mother tongue.
Johan is in his 60s and has a physical impairment. He comes from a reindeer-herding family. When leaving school, a counsellor advised him not to even think about going into reindeer herding, but rather to plan on getting an office job because of his impairment. However, despite this advice, Johan decided to take up reindeer herding and has been working with it ever since. Johan described several advantages with this type of work. One is the experience of freedom and flexibility; working with reindeer herding, he is independent of time and date and does not have to plan his work. Another advantage Johan mentioned is that there are several families jointly engaged in the work. When cooperating together, they can work shifts and do not have to be continually available. This also bears some advantages in relation to his impairment: The other reindeer herders relieve him of work tasks if his impairment hinders him.
However, according to Johan, the Norwegian public bureaucracy is gradually limiting the flexibility that has made it possible for him to work with reindeer herding up until now, despite his impairment. He elaborated on how those in the reindeer-herding community have gradually been forced to set aside traditional Sami ways of thinking, where weather conditions, for instance, have been decisive in choosing when to gather and butcher the reindeer. Instead, they have had to adhere to deadlines determined by the Norwegian public administration. According to Johan, these changes make his work much harder and more stressful in addition to involving more health risks. In this way, the Sami cultural adjustment to the rules of the majority society is reducing the flexibility that has contributed to inclusive employment in a traditional Sami way of living. Furthermore, Johan also stressed the mental strains connected to constantly having to defend reindeer herding in various majority public arenas. The Sami people’s legal rights to the use and management of lands have been discussed in courts, newspapers, and social media for decades.
In Johan’s story, we identify multiple interesting analytical aspects and have chosen to focus on two, in particular. First, taking into account Johan’s physical limitations, there is a considerable personal strength that lies behind the decision to live a relatively hard physical working life in reindeer husbandry. This points to the fact that Johan’s identity as a Sami, related to the traditional Sami ways of life, is more important to him than the possible – and actual – limitations resulting from his disability. Second, Johan’s story clearly shows the legacy of the assimilation policy in at least two ways. He realises that the bureaucracy of Norwegian policy sets limits that make reindeer husbandry life more complicated. Additionally, he pointed out that people with a Sami background still have to argue and fight for their rights. In other words, Johan does not perceive the majority society as having accepted the indigenous people’s position and what it signifies, despite legal rights and regulations having been established during the past 30 years.
Knut is a teenage boy from a reindeer-herding family who has been diagnosed with ADHD. Knut’s mother described how characteristics of the Norwegian welfare system are disabling her son in certain settings, whilst certain traditional Sami settings are not. She pointed to how they experience this phenomenon particularly considering the upbringing of children in some Norwegian versus Sami contexts, such as at school. According to Knut’s mother, it has been impossible for him to sit still and learn anything at school without his medication. However, she feels that medicating him to go to school creates a considerable paradox. She pointed out how the Norwegian school is so ‘boxed in’ that Knut has to take medication just to sit still and learn something, whilst he does not need medication, for instance, when they are up in the mountains marking reindeer or butchering. She described how physical activity in these settings can be an advantage, as there is no focus on Knut’s diagnosis in such cases. Moreover, she stressed how Sami upbringing is very practical: It is characterised by letting children take part in activities such as husbandry, picking and using plants from nature, and Duodji (Sami handicraft). Knut’s mother finds it is this sort of participation in activities that contributes to the establishment of a Sami identity, and she questions medicating her son to go to a Norwegian school where the only thing they learn about the Sami is found in a short paragraph in a textbook. Furthermore, the traditional Sami approach to upbringing may explain why Knut’s mother has received numerous negative reactions from other Sami when medicating her son for ADHD, telling her to let him be.
The three stories highlight different aspects of relations or crossings between disability and Sami background.
In all three stories, what Fuentes (2016) described as the ‘homogenisation’ process seems to appear. However, such homogenisation processes may be experienced differently by people with a Sami background than by ethnic minorities. As the following exploration of the described homogenisation processes illustrates, such processes seem to lead to experiences unique to indigenous people, differing from those of ethnic minorities (Fuentes 2016).
Having a hearing impairment, Per is pre-defined as belonging to a certain category with specific and inherent treatment measures. Professionals supposed that his hearing impairment would make it impossible for him to become bilingual. Others of various ethnic minority groups (Imperatori 2009; Ostad 2006; Stienstra 2012, 2016) share such experiences. However, whilst other ethnic minorities with impairments may have difficulties learning the language of the country where they have relocated (Statskontoret 2009), in Norway, the Sami language has a different status than the native languages of immigrants. Norway has ratified the ILO Convention No. 169 (1989) and is, thus, committed to preserving and promoting the Sami language. Today, according to the Sami Act (1987), Sami and Norwegian are languages of equal worth, and, according to the Education Act (1998), Sami children have the right to receive instruction in Sami.
The welfare services’ homogenisation process may complicate the establishment of a Sami identity for people of a Sami background who have impairments. According to Kramvig (2005), identity is created and sustained through social practices. Thus, a relevant question is what social practices Per and other Sami with impairments, who are denied access to the Sami language, are given the chance to take part in. If, like Per, their lack of skills in Sami excludes them from social settings with family and friends and activities in the general society, such as political and organisational work, their participation in Sami culture is probably not extensive. Gaski (2008) argued that, following the assimilation process in Norway, Sami politicians created a Sami-Norwegian dichotomy in the construction of Sami identity. Certain Sami ‘markers’, such as speaking Sami and bearing visible cultural traits like the traditional costume (called Gákti or Kofte), became important symbols of belonging to the Sami community. Consequently, not speaking Sami or possessing knowledge traditionally associated with ‘Saminess’ prevent many with a Sami background from identifying themselves as Sami. Limited access to Sami language and culture will, thus, probably complicate the construction of a Sami identity for people of a Sami background who have impairments. Per’s denied access to education in Sami is probably related to the negative attitude towards bilingualism, which existed until the 1960s. This attitude was based on research that showed that monolinguals did better than bilinguals on intelligence tests. Despite increasing positive attitudes towards bilingualism since the 1960s, until the year 2000, many still claimed that lacking exposure to the majority language caused underachievement amongst minority pupils. This scepticism to bilingualism has negatively influenced the training in Sami and, thus, the visibility of Sami language (Engen & Kulbrandstad 2004).
Johan’s experience with welfare services may also be understood as an example of homogenisation, whereby the counsellor seems to draw attention mainly to Johan’s impairment and, hence, advises him to forget reindeer herding and seek an office job instead. Nevertheless, Johan chooses to ignore the counsellor’s advice, despite his disability. He has cultural competence, knowing what the work of reindeer herding involves and how some aspects of such a job – e.g. freedom, flexibility, cooperation with other families – reduce the disabling effects of his impairment and increase his ability to work. As such, for Johan, being Sami in this context may actually be seen as an advantage, reducing barriers he could have met if he had sought a job within the traditional Norwegian labour market. This illustrates how, in this context, the combination of belonging to the ‘disabled’ and ‘Sami’ categories does not cause what is described as a double handicap (Brooks & Deegan 1981), but rather has a positive effect, giving him the opportunity to work.
The bureaucratisation of reindeer herding in recent years has complicated the industry for all Sami. For example, the state today operates with fixed dates for entrance and exit from seasonal pastures, whereas herders traditionally based the manner and timing of herd movements on observations of both the herd and landscape (such as local climate and grazing conditions). Herders not following the officially defined targets are met by government sanctions (Johnsen, Mathiesen & Eira 2017). The consequences of reduced flexibility are particularly difficult for Sami with impairments, as the increasing barriers make it problematic to continue the work, having to ignore weather and health conditions to comply with the new deadlines. We assert that the bureaucratisation that hinders Sami with impairments from continuing to work as reindeer herders is an added burden compared to those of other ethnic minorities. The importance of having a job is well-documented (NOU 2009: 10). However, to many Sami, reindeer herding is more than ‘just a job’. Reindeer herding is an important part of the Sami identity (Pape & Löffler 2012), culture, and way of life (Lund, Brustad & Høgmo 2008), despite the fact that most are engaged in other professions today (Sjolander 2011). For Sami, using nature is not only about harvesting certain resources. The relationship to nature and the landscape is relevant to their constitution and sense of belonging. They get to know the mountains and the forest through taking part in activities there with family and others; through this process, they become familiar with how previous generations have experienced the same landscape (Gaski 1999, 2000). From this perspective, one might see Johan’s choice to become a reindeer herder, despite having an impairment, as a way of participating in a social and historical community that anchors him to a Sami identity.
Furthermore, for Johan and other Sami men with impairments, reindeer herding may not only be important for their Sami identity, in general, but also for their identity as Sami males. In Sami communities, it is considered valuable to pass on reindeer husbandry from father to son (Boine 2007). According to Nystad (2007: 147), boys are given the responsibility for upholding tradition and are expected to continue family traditions, whilst girls are encouraged to pursue an education. Hence, Johan may develop an identity as a successful Sami male in this context, rather than possibly becoming an unemployed Norwegian man with a Sami background.
Knut’s dealings with welfare services may be perceived as just another example of the homogenisation process in accordance with Per’s and Johan’s experiences. Welfare services focused entirely on his behaviour as an impairment in need of medical treatment without taking into account his cultural background. However, what makes Knut’s situation quite special is that his disability may be viewed as entirely socially created. Knut only becomes disabled when his behaviour is coupled with the structural expectations of the Norwegian school system, whilst he is not even seen as having an impairment within the traditional Sami way of life and upbringing. The pedagogical expectations of the Norwegian school system are the same for all students, no matter the impairment or ethnicity, and thus disable many of them. Hence, what makes the situation different, and probably more challenging for Sami students with impairments (and their families), is that they experience being ‘forced’ into another way of living that characterises their cultural background amongst their own native people. Furthermore, there is a risk of increase in their burden due to negative reactions from other members of their own Sami culture by choosing medication when Knut’s behaviour is not even recognised as an impairment by Sami standards.
The presented stories illustrate how the experiences of disabled Sami people with the welfare system seem to be characterised by homogenisation processes that impose an identity of ‘disabled’ upon them whilst simultaneously hindering them from acquiring a Sami identity. At the same time, the Sami community and/or the individuals themselves do not necessarily feel they are disabled. Thus, Sami people with impairments risk experiencing an identity conflict, making both their identity construction and their establishment of affiliation to the Sami and Norwegian societies extra challenging.
Whilst Per experiences a lack of access to the Sami language, Johan experiences barriers, introduced by the public administration, that limit his access to traditional Sami work, and Knut experiences that access to education involves forced medication that he does not need in a traditional Sami upbringing and way of life; these may all be described as different types of structural discrimination. Rather than being examples of unfair or unequal treatment as individuals, these experiences may be viewed as cases where (public) rules and practices have an exclusionary effect for the particular group (Midtbøen & Liden 2015), in this case, Sami with impairments.
There are at least two aspects of discrimination that Sami people with impairments experience that differ from the experiences of ethnic minorities with disabilities described through the concepts of culturalisation and homogenisation (Fuentes 2014). First of all, being denied or given limited access to your own culture – in this case, Sami language and ways of living – is quite different when living as indigenous people in your own country rather than living as an ethnic minority having moved to a foreign country. As pointed out very clearly in the ILO Convention, ratified by the Norwegian government, Sami have the right to exercise control over their own way of life and to develop their identity, language, and religion (1990). As described here in the presented stories, Sami people with impairments are denied this legal right to their own culture, experiencing a homogenising process where welfare services focus entirely on the impairment and not at all on their indigenous background. Second, these restrictions of access to Sami culture need to be viewed in the light of the historic experience of assimilation. When Sami people with impairments are denied access to Sami culture when dealing with welfare services, it may be perceived as an extension of the former assimilation process, whereby government agencies still try to push them into adopting the Norwegian language and culture at the expense of Sami language and culture. This process may be what Midtbøen and Lidén (2016) referred to as ‘cumulative discrimination’: a concept used to describe how discrimination may be inherited over generations and how experiences of discrimination can be perceived differently by minority groups with a former history of discrimination than by minority groups lacking such a history. For example, when Per does not get the chance to learn Sami, his experience is probably influenced by the fact that his mother experienced the same, due to the public assimilation process. In particular, the denial of instruction in the Sami language may be perceived as a continuation of discrimination, as several Sami generations were forced to receive education only in Norwegian (Minde 2005). Such an experience of cumulative discrimination is probably more likely when it comes to education, that is, schools are described as the battlefield and teachers as frontline soldiers of the Norwegian assimilation policy (Niemi 1997: 268). Furthermore, according to the Sami point of view, the school system continues to be a ‘fundamentally Norwegian’ arena (Hansen, Høgmo & Lund 2016).
‘Historical memory’ (Hedlund & Moe 2010) is another concept that may contribute to illustrating what we argue are the unique experiences of Sami people with impairments. When welfare services force these individuals into a Norwegian mould by treating them as they would people with impairments from the majority population, it may awaken their collective memory. For instance, when Knut has to be medicated to attend a Norwegian school and Johan is advised not to pursue reindeer herding, it may be perceived as a reminder of how the authorities, representing the dominant majority, ignored and opposed traditional Sami culture and way of life for more than a century (Pedersen & Høgmo 2012). For example, the Sami experienced changes in their land rights, which caused problems for the reindeer husbandry grazing grounds (Horstkotte & Aikio 2017). Hence, these sorts of historical memories make Sami people with impairments perceive the homogenisation process as a continuation of the use of structural power to threaten Sami traditions and way of life.
In this article, we have analysed stories from indigenous people with disabilities, trying to understand unique experiences as well as experiences that may be shared with disabled people from other ethnic minorities. As an analytical approach, we applied Fuentes’s (2016) concepts of ‘culturalisation’ and ‘homogenisation’, which he used to describe the experiences of disabled people from ethnic minorities. We found little evidence of culturalisation in our material, but the concept of homogenisation proved useful in understanding some features of the stories analysed. In addition, we found features of what we interpret as heritage from the assimilation process that Sami people have experienced over time in Norwegian society.
Whilst there is still a lot that we do not know about the intersection of disability and indigeneity, this study suggests that it is possible to identify experiences that are unique to indigenous people with impairments compared to the experiences of other ethnic minorities with impairments. With this knowledge, service providers within the welfare system may gain a heightened awareness of the importance of historical facts on discrimination of indigenous people and may recognise the political consequences of such whilst also being sensitive to indigenous people with impairments in a supportive context.
Even though this research has yielded interesting results indicating the presence of a unique intersectional effect between indigeneity and disability, a need for further research remains to achieve a deeper understanding of this phenomenon. In particular, it raises issues about gender differences and socio-culturally gendered expectations within Sami culture and Norwegian society, and how these may differ for Sami women and girls living with disabilities.
1We are grateful to the informants who contributed with stories of their everyday life and to the other members of the research group, ‘Diversity and Tolerance’, who participated in data collection: Bjørn-Eirik Johnsen, Gunn-Elin Fedreheim, Marit Rustad, Leif Lysvik, Tone Dinesen and Ketil Lenert Hansen. The project was funded by the Norwegian Directorate for Children, Youth, and Family Affairs (Bufdir) and the Nordic Centre for Welfare and Social Issues (NVC).
The authors have no competing interests to declare.
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