Cultural sensitivity and barriers: Sami people with disabilities facing the welfare system

Cultural sensitivity and barriers: Sami people with disabilities facing the welfare system Abstract The aim of this article is to increase the understanding of the participation barriers Sami people with disabilities experience in encounters with the Norwegian welfare system. According to the Sami Act of 1987, § 3–5, the Sami in Norway have a legal right to receive equitable health and social services adapted to the Sami language and culture. The focus of this article is the experiences of disabled Sami citizens in encounters with welfare services. Cultural differences and a historically recent and draconian assimilation process seem to influence Sami people’s experiences. According to our informants, mainstream society’s limited cultural competence has a negative impact on these encounters. The welfare system offers standardized services adapted to the majority in society, involving the homogenization of an impairment, where disabled people are treated the same regardless of their cultural background. This does not lead to equitable services because services are not adapted to Sami thinking, values, attitudes, or life philosophy of life. Due to the lack of cultural sensitivity, Sami people with disabilities risk experiencing double discrimination in Norwegian welfare services, experiencing barriers to participation related to both their disability and their ethnicity. This makes an intersectionality perspective relevant, treating oppression and subordination as due to the combined effects of being Sami and having an impairment. Our study indicates that the lack of knowledge about Sami culture, language, and identity among Norwegian service providers leads to an oppressive practice and results in participation barriers to Sami people with disabilities. Introduction In Norway, both the indigenous Sami people (Minde, 2005) and disabled people have a history of experiencing oppression (Owren, 2008). However, knowledge specifically about the experiences of Sami people with disabilities has been absent (Nordens Välfärdscenter, 2014) and requested (Barne- ungdoms- og familiedirektoratet, 2013; St. meld. nr. 45, 2012–2013). In a research study of the situation of Sami people with disabilities we explored the everyday life, transitions between life stages, and democratic participation of disabled Sami people (Melbøe et al. 2016). Based on thirty-one qualitative interviews with Sami disabled people and/or their next of kin, this article seeks to examine the following research question How do different barriers to participation contribute to create and maintain an oppressive situation for Sami disabled people in Norway today? One of the general principles in the UN Convention on the Rights of Persons with Disabilities is full and effective participation in society (article 3). The point of departure of this analysis of the participation of Sami disabled people is Sudmann and Folkestad’s (2015) understanding of community work. They define community work as: (i) a method for practical change together with those concerned, and (ii) a critical perspective for research on different viewpoints of equalization, discrimination, and community participation. The article builds on the last part of the definition. We need to understand community work as a critical approach for research, as it is crucial to gain thorough knowledge about the basic factors of equal and culturally based community work. This study can thereby be defined as oriented basic research with Sami people with disabilities, i.e. that ‘carried out with the expectation that it will produce a broad base of knowledge likely to form the background to the solution of recognized or expected current or future problems or possibilities’ (OECD, 1993:50). Even though the intentions are good, welfare services might partly contribute to create oppression (Sudmann, 2015). To answer the research question the article will discuss how Sami people with disabilities experience community welfare services. The Sami are the indigenous people of Sápmi, a territory stretching over the northern parts of Norway, Sweden, Finland, and Russia. Today, the Sami population is estimated to comprise between 60,000 and 110,000 individuals (Hassler, Kvernmo, and Kozlow, 2008), and the majority of Sami people live in Norway (Statistics Norway, 2010). Over the last twenty to thirty years, there has been migration from traditional Sami municipalities to urban areas. Consequently, currently there are significant Sami (or multiethnic) populations living in Norwegian towns and cities (Sørlie and Broderstad, 2011). The traditional Sami ways of life – fishing, hunting, and reindeer herding – are in retreat. Today, only approximately 10 percent of the Sami people in Norway are engaged in these traditional ways of living (Statistics Norway, 2010). Many Sami have adopted the Western lifestyle and have modern professions and food habits (Sjolander, 2011). From the mid-1800s until after World War II, the Sami policy in Norway was based on forced assimilation (NOU 2000:3). Cultural Sami characteristics and Sami language were to be replaced with corresponding features of the (Norwegian) majority culture (Josefsen, 2006; Minde, 2005). For example, in school there was a systematic eradication of Sami language and culture, and all Sami children had to learn to read, speak, and write Norwegian. Not until 1969 was the right to learn the Sami language reintroduced (NOU 2000:3). Today the number of Sami speakers is estimated to approximately 24,600 (Ministry of Local Government and Modernization, 2014). The assimilation policy implied such a stigmatization of Sami identity (Eidheim, 1969) that many Sami did what they could to hide and suppress their Sami background and identity, especially in encounters with Norwegian society (Bjørklund, 1994). Due to the more recent revitalization and integration of Sami culture and identity, the Sami have now progressed to being generally treated as equals (Pedersen and Høgmo, 2012). Even so, the outcomes of the assimilation process still have an impact on Sami life and ways of thinking, and many hide their Sami identity out of shame (Minde and Nymo, 2016). However, the outcome of the assimilation policy and the revitalization movement varies according to the different Sami regions (Turi et al. 2009), and Sami today deals with at least two ‘worlds’: that of traditional Sami culture and the Westernized Norwegian culture (Hansen and Sorlie, 2012). The Sami in Norway do have, according to the Sami Act of 1987, § 3–5, a legal right to receive equitable health and social services adapted to the Sami language and culture. Yet, in assessing the extent to which this occurs, it is important to understand that the comprehension of illness and health is culturally conditioned (Archetti, 1986; Olsen and Eide, 1999). In traditional Sami culture, illness is understood to be dependent on the relationship between the individual and the community, and is interpreted as disharmony and lack of balance with the world in which one lives (Minde and Nymo, 2016). Thus, determining appropriate treatment depends on one’s understanding of illness. For example, in Sami traditional medicine, healing by being ‘read on’ is a common way to cure illness, and for Sami people this means they have received healing from a traditional healer for a somatic illness or other kinds of torment, or the prevention of illness or bad happenings. The origin of the term ‘to read’ is said to have come from the belief that traditional healers were supposed to have secret written formulas they used in the healing. Historically this practice coincides with the role played by the noajdde or shaman in the pre-Christian Sámi religion (Myrvoll, 2015). The traditional healer often perceives this treatment as related to supernatural forces or God (Mathisen, 2000). Method We chose to use qualitative interviews to answer the research question. Altogether, the eight members of the research group conducted thirty-one interviews with a total twenty four disabled Sami people, and thirteen next of kin of disabled Sami people (eight mothers, two fathers, two sisters, and one guardian). While twenty of the disabled persons were interviewed on their own, four persons with disabilities were interviewed with a relative or guardian as support, and the last seven interviews were with the next of kin of disabled persons. The latter was due to: (i) the informants’ young age, or (ii) because it was challenging for the disabled person to answer the questions with spoken language, and we as researchers had limited competence in augmentative and alternative communication. The informants received an information letter in Norwegian, Sami, and an easy-to-read version (a way of writing developed for people with learning disabilities using plain language). Regarding individuals with learning disabilities, we first sent an information letter to the person’s guardian or next of kin. In this we specified that valid consent implied that the person could possess sufficient information, understand the information given, and be able to understand the implications of their consent (Helse- og omsorgsdepartementet, 1999). The guardian or next of kin then consented for those assessed (by them) as not being able to give informed consent themselves, or presented the easy-to-read version of the information letter so they could decide whether to participate or not. Recruiting Sami informants is known to be difficult (Minde, 2010). We recruited informants through public health and social services, the media, and Sami and disabled networks. There is no public register in Norway for people who are Sami or disabled, which made the recruitment process rather complicated. Requests to participate were therefore sent to those known to identify as Sami and have an impairment. In this study, impairment is understood as the functional limitation within the individual caused by physical, mental, or sensory impairment (Goodley, 2011). Further, disability is defined as ‘a gap between individual functioning and societal/environmental demands’ (Tøssebro, 2004:4). The article focuses on the situations of ten females and twenty one males with a variety of impairments, such as sensory (e.g. sight and/or hearing), physical (e.g. paralysis), or cognitive (e.g. learning disability). Furthermore, the cohort of thirty-one men and women represents age groups from children to the older people (seven to eighty eight years old), coming from the north-, mid- (mainly known as lule-), and south-Sami areas. We used semi-structured interviews as these ‘are well suited for exploration of the perceptions and opinions of respondents regarding complex and sometimes sensitive issues and enables probing for more information and clarification of answers’ (Barribal & While, 1994, p. 330). Knowing that stigmatization is experienced both when it comes to being Sami and having an impairment, we were aware that some of the interview topics might be delicate for the informants. Therefore, besides using semi-structured interviews, we were also open to storytelling. There is a strong tradition of storytelling in the Sami culture (Nergård & Eriksen, 2006), and storytelling is a well-recognized strategy in community work (Ledwith & Springett, 2009). We hoped storytelling would allow the informants to speak more freely about their own experiences and feelings on being Sami and having an impairment. The informants chose whether to be interviewed in Norwegian (twenty seven) or Sami (four). The 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. All informants in the article were given pseudonyms. Findings All of our informants have experience with Norwegian welfare services, including health and social services, kindergartens, schools, and labour services, among others. The need for help amongst the disabled informants differs widely, especially when it comes to what type of help is offered. Some only need practical help a few hours a week, while others have needs far more extensive. Some of the informants reside in assisted living facilities for older people, others in sheltered houses or in traditional family houses or flats. Disabled people with a Sami background experience many of the same challenges as disabled people in Norway in general, such as barriers that prevent full and effective participation in work, education, leisure activities, etc. (Molden, Wendelborg, & Tøssebro, 2009). However, in addition, they experience oppression connected to their Sami culture and way of living, as I show below. How to understand and communicate about illness and impairments One topic that often arose during the interviews was how the Sami traditionally do not speak of illness or impairments. Øyvind’s father told us that talking about illness would have been considered nourishing the illness. According to him: ‘One is not supposed to focus on negative things in life, but rather use one’s strength on what is positive.’ Furthermore, Øyvind’s mother stressed that the Sami are more withdrawn when it comes to exposing themselves to strangers. This coincides with the opinion of Marit’s guardian, who claims ‘(…) the family is supposed to take care of itself and also not to talk about illness or weakness. It is very taboo’. According to Rakel: ‘The Sami prefer not to speak about illness. We are not very open on such things.’ Rakel suggests that this might be connected with traditional Sami culture where the belief is that ‘(…) the evil ear might hear’, and so you risk the illness getting worse or even infecting relatives. A negative consequence of not talking about illness was experienced by Rakel when most of her relatives, except her closest family, withdrew when she became ill. However, many of the younger informants spoke more openly about their own health and impairment. In addition to a tradition of not speaking about illness, our informants also pointed to a general Sami style of indirect communication, which is sometimes a challenge in meetings with Norwegian welfare services given their use of very direct communication. According to Øyvind’s father, Norwegians are very direct and straightforward, while in Sami culture, indirect communication is more usual with one speaking ‘a little around things’ and by using metaphors. Øyvind’s father describes how, in meeting with the welfare services’ direct way of communication, they often end up ‘a bit paralyzed or despondent’ and sometimes even furious. Furthermore, a mismatch of concepts might be another challenge in meetings between Sami people with impairments and the Norwegian welfare system. For example, there is no equivalent term in Sami for the concept of learning disability. They sometimes use terms like doimmaheattigun, which is a metaphorical term referring to a person that does not walk in the same rhythm as others. As this is not necessarily equivalent to the term learning disability, to avoid misunderstandings it becomes important that service providers get each Sami person to elaborate their understanding. Opinions are mixed when it comes to how one attends to people with impairments inside Sami communities. According to Ketil’s mother, impairments are much more accepted here. In her opinion, diversity is considered a part of human variety and acceptance of deviance is typical within Sami culture. She also stresses that from a Sami point of view: ‘(…) it becomes idiotic to compare normality and deviance like one does within the Norwegian heath care system’. Anna’s mother also describes the Sami community as more tolerant towards deviance: ‘You do not get a label glued to your head, as we are good at inside the Norwegian society.’ However, other informants have not experienced such acceptance of impairments. For example, Jon’s sister claims that how the Sami community relates to people with impairments is far behind the attitudes of Norwegian society, especially when it comes to accepting people with learning disabilities. According to her husband, this is why their family moved to a Norwegian area after having a child with learning disabilities. What does one comprehend as adequate treatment and/or services? Several of our informants mentioned the tradition of ‘read upon’. According to Ragnar, ‘reading is healing’ and takes away many different kinds of strains from people, adding, ‘It is the Sami who have made me well, not the doctors’. Stopping bleeding and removing pain or infection are examples of what a reader can do. Øyvind’s father points out that even today reading is so common and normal within the Sami culture that people from his area name the local reader ‘municipal doctor no. 2’. Many of our informants make use of both traditional Sami medicine and Western medicine, and are pleased with this. However, Ketil’s mother wishes that the public health care system was less judgmental towards this practice. ‘The important thing is that the persons involved are helped’, she said. She herself has used readers on both herself and her son. In her opinion, this form of healing does not come into conflict with Western medicine: ‘Norwegian doctors should try and understand the patients’ situation and be much more tolerant towards the alternative’. Several of our informants emphasize the importance of nature as a part of their Sami culture. For example, Nicolai describes how a rehabilitation centre made use of nature and Sami traditions, and how helpful this felt in his rehabilitation process. Being in nature makes him feel good and close to his ancestors and to himself. Øyvind’s parents also ask for more use of nature in treatment, in line with Sami tradition and what is important to them. Sadly, Nicolai’s experiences of welfare services that take Sami culture into consideration are not typical. Most of our informants report meeting a Norwegian welfare system that is sensitive only in limited ways to Sami culture. According to some of our informants, there is, for instance, still a long way to go before mental health services can offer Sami patients assistance they experience as helpful. Ragnar points out that it seems that the psychiatrists know nothing about Sami culture and ways of thinking, and feed him medication that he considers to be of no real help. Rakel found it difficult to talk with psychiatric professionals about her family without being misunderstood, and ended the consultations as she experienced talking to professionals that lack knowledge of Sami traditions as a waste of time. Øyvind’s mother gives an example on how insight into Sami culture might be useful within psychiatric services. She tells about a Sami patient who was admitted to the psychiatric ward, and was then deprived of his personal belongings, including his knife. The patient withdrew completely until a nurse gave him back his knife. In a blink, the patient became himself again. Within Sami traditions, a knife is not only a tool, but something that protects. ‘You never go into the forest without a knife. It is the steel in the knife that protects against evil spirits, not the knife itself’, she explains. Having to choose language The informants in this study speak primarily Norwegian or Sami, while some speak both languages. In some cases, professionals had told the parents that their child, because of the impairment, would struggle to cope with more than one language. Most of these parents were advised to let their child learn Norwegian. Per describes how professionals in the 1970s advised him to learn Norwegian rather than Sami, arguing that being bilingual was not possible for people with his kind of impairment (hearing loss). Thus, he never learned Sami. This decision has had a major impact on his whole life. According to Per, not speaking Sami has limited contact with his own family and excluded him from many other settings such as gatherings with friends, political committees, and organization work. In contrast, Ketil’s parents had the choice of whether Ketil should learn Norwegian or Sami. They chose Norwegian because they live outside the core Sami areas, but the mother describes this as a very difficult decision as it affected the whole family. They originally spoke Sami at home; but then had to switch to Norwegian. Consequently, Ketil’s siblings learned much less Sami. According to Ketil’s mother, much of their sorrow associated with their son’s diagnosis is connected to his loss of the Sami language and the strong link between identity and language. Understanding of information Informants, especially older people, have experienced not understanding the information given by welfare services. For example, Mattis’s sister describes how the professionals gave her parents all the information about her brother in Norwegian. Because Sami was their first language, the parents understood only parts of the information they received. According to Mattis’s sister, this influenced the choices her parents made regarding him, such as treatments and dealing with life situations. Consequently, she has involved herself quite a lot in her brother’s situation. She says, ‘all messages go through me now’. Furthermore, she points out, ‘this reluctance amongst older Sami to admit not understanding Norwegian is something the Norwegian society lacks understanding of’. Another of the stories an informant shared is about an older woman who only speaks Sami. All her adult life she brought one of her children to translate at consultations with the doctor. When she met a doctor speaking Sami for the first time, she burst into tears. Never before could she talk to a doctor about her personal problems without her children present, and she felt liberated. All her life she had felt degraded by the fact that she was forced to expose herself and her personal problems in front of her children. Nikolai is especially concerned about older Sami people who suffer from dementia, because many of them go back to speaking only Sami. For example, he told of a Sami woman who was very thirsty when her family came to visit her at the home for the elderly. When the family asked the staff why they had not given her any water, they answered that she had not asked for it. She had asked in Sami, but the staff did not understand her request. Having to choose between professional help or Sami culture It appears there are large geographic differences connected to access to the professional welfare system. Some of those with impairments that require special competence experience being ‘forced’ to choose between adequate professional support or access to Sami culture. For example, Anna’s mother told us how their plan had been to bring up their daughter within Sami culture and with the Sami philosophy of life, teaching her the Sami language, etc. When their daughter received her diagnosis, however, they soon realized they had to choose between professional support and access to Sami culture. They chose professional support and moved south. The mother sadly admits that her daughter lost her chance to develop a Sami identity because of this lack of professional help in the northern region where she was born. She states According to Norwegian tradition and Norwegian laws, I have done all the right things relating to my daughter. However, when I look upon my Sami heritage, I have done it all wrong. I have taken her away from her family and her roots. Ketil and his family live in the north, but not in a place where the Sami culture has a strong foothold. Nevertheless, his mother describes how she and other Sami parents living in Norwegian surroundings experience gaining access to Sami culture as a fight or battle. For example, as Norwegian schools have limited knowledge of Sami culture, parents must teach their children about Sami traditions and ways of living. Discussion A common feature of the stories of the informants in this study is their description of the cultural meeting with welfare services, where they experience barriers connected to a lack of cultural knowledge amongst the service providers. Important knowledge in the cultural meeting Drawing upon the material, we find expectations amongst our informants that the individual Sami will meet a system that has enough cultural competence to provide good services adapted to the Sami philosophy of life. Based on our interviews, I will now present some aspects of Sami culture that are important to Sami people with disabilities, of which the service providers are aware. First, knowledge of the traditional Sami way of communicating in general and, specifically, how they communicate about illness. Our material shows, in line with other research (Bongo, 2012), that Sami people would rather not talk about illness. Sami reluctance to talk about illness may have different underlying reasons; for example, that to discuss illness among Sami can be understood as showing weakness (Minde, 1995), that illness can be spread if put into words (Dagsvold, 2006), or because one is not supposed to give other people worries on one’s own behalf (NOU 1995:6). Another identified challenge is the contrast between the typical Norwegian style of direct communication and the typically indirect Sami manner of communication (NOU 1995:6). Both the indirect communication and the reluctance to speak about illness harmonizes poorly with the principle of user participation that is strongly underlined in Norwegian patients’ rights legislation (Helse- og omsorgsdepartementet, 1999), where patients are expected to actively promote their own case within the welfare system. If the welfare system is met with silence due to traditional Sami ways of communicating, Sami people with impairments might not receive the services needed. Second, it is important that service providers know that understandings of illness are culturally conditioned (Nergård, 2012; Olsen and Eide, 1999) and, thus, what is regarded as appropriate treatment will depend on how one understands the illness (Myrvoll, 2015). As mentioned earlier, illness in traditional Sami culture is understood as disharmony with the world one is living in and a lack of balance in life (Minde and Nymo, 2016). Thus, Western medicine, with its thinking in diagnostic terms, is not common inside Sami society. The Sami originally had their own methods to treat illnesses that might be read as traditional Sami medicine (Myrvoll, 2015). Oral transmission across generations has developed an understanding of illnesses and treatments that are closely connected to forces within nature and thoughts about balance in the universe (Henriksen, 2014). An example of one such tradition is the knife-steel as protection against evil spirits. This is an example of a holistic attitude towards living, meaning that people have a special connection to nature and experience a spiritual world within nature. ‘Reading’ is an experienced, spiritual world that is still very much alive and an important part of traditional Sami medicine. The perception of good and bad spirits is very alive inside the Sami understanding of reality, but is seldom communicated when meeting a Norwegian health system that only focuses on diagnoses and experimental facts, because the Sami do not believe that their understanding will be taken seriously (Nergård, 2012). Professionals treating Sami patients are recommended to include nature in the therapy (Dagsvold, 2010). Third, one has to be aware of the importance of access to welfare services provided in the Sami language, or of offering interpreter services at the meetings with welfare services. Even if Sami people with longstanding disabilities have been under the language domination of mainstream society, their understanding of Norwegian varies. In our material, for example, we find parents who have Sami as their first language (like Mattis’s parents) exclusively speak Norwegian throughout the upbringing of their disabled child and meetings with welfare services. Consequently, the parents may not understand important information about their child’s condition and treatment. A study on self-experienced discrimination amongst Sami people in Norway shows that approximately one-third of the respondents experienced health staff who did not speak Sami and that one in fifteen Sami-speaking respondents did not get a translator at doctor consultations or hospital consultations even though they had requested one (Josefsen, 2006). The study points out that it could be a risk to life not to have access to a translator when meeting with the health care system. Receiving services in Sami also means that Sami people with disabilities get the chance to receive professional help and discuss private matters without an interpreter present, as in the story of the doctor consultation with the elderly woman presented earlier. Language, culture, and identity are closely connected, and the legislation known as the Sami Act (Kommunal- og moderniseringsdepartementet, 1987) secures and strengthens the legal right to access the Sami language both in school and in the rest of society. The Sami language and understanding the Sami language becomes the glue that connects culture and identity. The competence within the schooling system regarding Sami conditions is very limited (Lile, 2012), and our material shows how Sami people with disabilities are especially at risk for not getting access to their own language and cultural habits. Fourth, the welfare system needs to understand that in Sami culture it is the norm for one to manage their situation and not be a strain on others (Bongo, 2012). Ketil’s mother points to this as a reason why so many families are reluctant to ask for help from the welfare system if they suspect something is wrong with their child. However, one should also keep in mind that the choice to manage by one’s self might also be a consequence of Sami people with disabilities experiencing service providers who do not understand the Sami way of living, offering treatment and/or services that are difficult to combine with how they live (Dunfjeld & Møllersen, 2010). Risk of double discrimination As in this study, earlier research of Sami peoples’ experiences with health and social services in Norway also identifies a lack of knowledge about Sami culture (Hedlund & Anne, 2010; Nergård, 2012). Important findings in our study, therefore, are not only how the limited competence in Sami cultural knowledge among service providers contributes to create and maintain an oppressing situation for this group in Norway, but also how the combination of being Sami and having disabilities sometimes poses the risk of double discrimination. Their access to Norwegian society and welfare services is hindered both by disabling barriers due to lack of facilitated environments, as well as by cultural barriers such as a lack of knowledge about Sami culture. I will now present two examples of double discrimination. First, because of large municipal differences and a lack of special competence in welfare services, some families with disabled children (like Anna’s family) become ‘welfare refugees’, moving to other municipalities to get needed services (Funksjonshemmedes fellesorganisasjon, 2014). Having to move is demanding on all families with children with disabilities. However, to Sami families, the consequences might be even more extensive, as they experience it as being ‘forced’ to choose between moving away from traditional Sami areas to get adequate professional support or having access to Sami culture by continuing to live in traditional Sami areas. The choice to move, moreover, reduces both the disabled child’s and any siblings’ chance to grow up as a part of the Sami culture and with a Sami identity. This can be defined as a sort of structural discrimination, where the superior structures are shaped so that discrimination is built into the effects (NOU 2002:12). In this case, welfare services discriminate against them as disabled persons because it prevents them from choosing where to live, and against them as Sami because it limits their access to Sami culture and identity. Second, some Sami people with disabilities (like Per) experience barriers to participation in areas such as school and work. Schools and the labour market are not facilitated for people with impairments, limiting their access to equal education possibilities, a proper job, etc. Additionally, some Sami people with disabilities feel excluded from the Sami community and their Sami family as they, by the educational services, are not given the chance to learn Sami. Our informants have not always agreed with the advice of choosing Norwegian over the Sami language. The scientific knowledge that establishes that gaining access to one language strengthens the capacity to learn other languages is rather new (Solstad et al. 2012). Consequently, many Sami children with different types of impairments have not received the necessary support to be bilingual in Sami and Norwegian, and speak only Norwegian. Standardized services as equal services? Our disabled informants experience barriers to participation and oppression related both to their Sami background and to their impairment, which makes an intersectional perspective relevant. Intersectionality underscores the multidimensionality of marginalized subjects’ lived experiences (Crenshaw, 1989:139). Belonging to an ethnic minority and having an impairment, our disabled informants are at risk of experiencing two different marginalization processes. Fuentes (2016) describes these as: (i) a culturalization of the impairment, where the focus on the disabled is mainly related to the individual’s culture, or (ii) a homogenization of the impairment, where the attention is drawn almost entirely on the impairment, and the disabled people are treated the same regardless of their cultural background. The informants present numerous descriptions of how they experience welfare services as standardized to the majority in society, and not adapted to Sami culture. For example, how service providers communicate, what they communicate about, how they understand illness, what treatments they offer, the use of the Norwegian language, etc. Accordingly, our disabled informants mainly seem to experience an extensive homogenization of the impairment. This means that service providers focus almost exclusively on the impairment, and treat all disabled people the same and as having identical needs, independent of their cultural background and linguistic needs. In our study, there are several consequences to this homogenization process. For example, some of the informants describe how the welfare service’s direct communication style provokes them, and does not make them come forward with their actual needs. Others tell of how a lack of understanding the Sami culture makes them end or decline the treatment offered. To understand the strong emotional reactions to being offered standardized services adapted to the majority culture, one must keep in mind the collective history of the Sami, with a century of harsh assimilation processes and discrimination. These sorts of memories can be roused, especially in meetings with service providers who have a majority background (Hedlund and Moe, 2010). Thus, even with the recent revitalization of Sami culture and identity (Pedersen and Høgmo, 2012), the history of dominance and oppression are also very much present in today’s encounters with welfare services. The consequence of the described homogenization process, reducing Sami disabled people to recipients of treatment and care regardless of their ethnic background, is that their needs are not met and might actually contribute to maintaining oppression. Nevertheless, the solution is not to provide standardized services adapted to Sami culture, treating all Sami people with disabilities the same. As our findings show, how Sami people with disabilities relate to their Sami background and Sami culture varies greatly (Melbøe et al. 2016). What we have identified as important knowledge about Sami culture is essential to some Sami with disabilities, but not to others. For example, some Sami speak freely about illness, prefer Western medical treatment, and receive their services in Norwegian. Consequently, if service providers are to contribute to equality and eliminating oppression, they must be very sensitive and adjust their help to each person they meet (Hedlund and Moe, 2010). Providing adequate services to Sami people with disabilities implies providing quite different services adjusted to each individual. Concluding remarks This article builds on community work as a critical perspective on participation, discussed in the setting of the encounters Sami people with disabilities have with community welfare services. The study reveals an oppressing practice wherein several barriers in the Norwegian welfare system hinder them from equal participation compared to those of the majority, because the welfare system mainly offers standardized services adapted to the needs of mainstream society. To move from oppression to equal practices, the service providers need to develop a sensitivity and consciousness about the aspects of culture and language that the Sami bring to the meetings. According to our findings, community work must be based on: acknowledgment of the Sami culture; knowledge about how Sami traditionally communicate about illness and impairments; knowledge about what Sami comprehend as adequate treatment or services; and use of the Sami language in welfare services. This knowledge is necessary to contribute to equal community work, in order to reduce the marginalizing practices in encounters between the service providers belonging to the majority population and the Sami people with disabilities, which currently maintains a barrier to participation. Line Melbøe leads the Arctic Centre of Welfare and Disability Research, and the research group ‘Diversity and Tolerance’ at UiT, the Arctic University of Norway. She has been an associate professor at the Department of Social Education at the same university since 2011. Acknowledgements I am grateful to the informants who contributed stories of their everyday life, to the members of the research group ‘Diversity and Tolerance’, who participated in the data collection: Gunn-Elin Fedreheim, Bjørn-Eirik Johnsen, Ketil-Lenert Hansen, Gunn-Tove Minde, Tone Dinesen, Kari-Anne Opsal, Marit Rustad, and Leif Lysvik. 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En sosiologisk undersøkelse av behov og etterspørsel etter offentlige velferdsordninger hos eldre samer i en flerkulturell kommune (We manage. A sociological study of need and demand for public welfare services among elderly Sami in a multicultural municipality). Universitetet i Tromsø, Tromsø, Norway. Minde , H. ( 2005 ) Assimilation of the Sami: Implementation and Consequences , Vol. 3 , Resource Centre for the Rights of Indigenous Peoples , Kautokeino, Norway . Minde , G.-T. ( 2010 ) Å leve sin sjel: helse og livskraft blant kvinner i Nord-Troms (To Live One’s Soul: Health and Vitality Among Women in Northern-Troms), Licentia forlag , Bodø, Norway . Minde , G.-T. and Nymo , R. I. J. ( 2016 ) Open the medical room: how indigenous patients’ cultural knowledge appears in the meetings with the health care providers during the rehabilitation process, in Hart M. A. , Burton A. D. , Hart K. , Rowe G. , Halonen D. and Pompana Y. , eds , International Indigenous Voices in Social Work , Cambridge Scholars Publishing , Cambridge, UK , pp. 83 – 100 . Ministry of Local Government and Modernisation ( 2014 ) Rapport fra gjennomgang av samelovens språkregler. (Report From Review of the Sami Act Language Regulations) , Minestry of Local Government and Modernisation , Oslo . Molden , T. H. , Wendelborg , C. and Tøssebro , J. ( 2009 ) Levekår blant personer med nedsatt funksjonsevne , NTNU Samfunnsforskning , Trondheim . Myrvoll , M. ( 2015 ) Traditional Sámi Healing. Heritage and gifts of grace, in Miller B. H. , ed. , Idioms of Sámi Health and Healing , Edmonton, Alberta University Press , Alta, Norway . Nergård , J. I. ( 2012 ) Samiske pasienters møte med norsk helsevesen (Sami patients meeting with the Norwegian Health Care System), in Jentoft S. , Nergård J.-I. and Røvik K. A. , eds , Hvor går Nord-Norge? Bind 2. 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For permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Community Development Journal Oxford University Press

Cultural sensitivity and barriers: Sami people with disabilities facing the welfare system

Community Development Journal , Volume Advance Article (3) – May 10, 2018

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Abstract

Abstract The aim of this article is to increase the understanding of the participation barriers Sami people with disabilities experience in encounters with the Norwegian welfare system. According to the Sami Act of 1987, § 3–5, the Sami in Norway have a legal right to receive equitable health and social services adapted to the Sami language and culture. The focus of this article is the experiences of disabled Sami citizens in encounters with welfare services. Cultural differences and a historically recent and draconian assimilation process seem to influence Sami people’s experiences. According to our informants, mainstream society’s limited cultural competence has a negative impact on these encounters. The welfare system offers standardized services adapted to the majority in society, involving the homogenization of an impairment, where disabled people are treated the same regardless of their cultural background. This does not lead to equitable services because services are not adapted to Sami thinking, values, attitudes, or life philosophy of life. Due to the lack of cultural sensitivity, Sami people with disabilities risk experiencing double discrimination in Norwegian welfare services, experiencing barriers to participation related to both their disability and their ethnicity. This makes an intersectionality perspective relevant, treating oppression and subordination as due to the combined effects of being Sami and having an impairment. Our study indicates that the lack of knowledge about Sami culture, language, and identity among Norwegian service providers leads to an oppressive practice and results in participation barriers to Sami people with disabilities. Introduction In Norway, both the indigenous Sami people (Minde, 2005) and disabled people have a history of experiencing oppression (Owren, 2008). However, knowledge specifically about the experiences of Sami people with disabilities has been absent (Nordens Välfärdscenter, 2014) and requested (Barne- ungdoms- og familiedirektoratet, 2013; St. meld. nr. 45, 2012–2013). In a research study of the situation of Sami people with disabilities we explored the everyday life, transitions between life stages, and democratic participation of disabled Sami people (Melbøe et al. 2016). Based on thirty-one qualitative interviews with Sami disabled people and/or their next of kin, this article seeks to examine the following research question How do different barriers to participation contribute to create and maintain an oppressive situation for Sami disabled people in Norway today? One of the general principles in the UN Convention on the Rights of Persons with Disabilities is full and effective participation in society (article 3). The point of departure of this analysis of the participation of Sami disabled people is Sudmann and Folkestad’s (2015) understanding of community work. They define community work as: (i) a method for practical change together with those concerned, and (ii) a critical perspective for research on different viewpoints of equalization, discrimination, and community participation. The article builds on the last part of the definition. We need to understand community work as a critical approach for research, as it is crucial to gain thorough knowledge about the basic factors of equal and culturally based community work. This study can thereby be defined as oriented basic research with Sami people with disabilities, i.e. that ‘carried out with the expectation that it will produce a broad base of knowledge likely to form the background to the solution of recognized or expected current or future problems or possibilities’ (OECD, 1993:50). Even though the intentions are good, welfare services might partly contribute to create oppression (Sudmann, 2015). To answer the research question the article will discuss how Sami people with disabilities experience community welfare services. The Sami are the indigenous people of Sápmi, a territory stretching over the northern parts of Norway, Sweden, Finland, and Russia. Today, the Sami population is estimated to comprise between 60,000 and 110,000 individuals (Hassler, Kvernmo, and Kozlow, 2008), and the majority of Sami people live in Norway (Statistics Norway, 2010). Over the last twenty to thirty years, there has been migration from traditional Sami municipalities to urban areas. Consequently, currently there are significant Sami (or multiethnic) populations living in Norwegian towns and cities (Sørlie and Broderstad, 2011). The traditional Sami ways of life – fishing, hunting, and reindeer herding – are in retreat. Today, only approximately 10 percent of the Sami people in Norway are engaged in these traditional ways of living (Statistics Norway, 2010). Many Sami have adopted the Western lifestyle and have modern professions and food habits (Sjolander, 2011). From the mid-1800s until after World War II, the Sami policy in Norway was based on forced assimilation (NOU 2000:3). Cultural Sami characteristics and Sami language were to be replaced with corresponding features of the (Norwegian) majority culture (Josefsen, 2006; Minde, 2005). For example, in school there was a systematic eradication of Sami language and culture, and all Sami children had to learn to read, speak, and write Norwegian. Not until 1969 was the right to learn the Sami language reintroduced (NOU 2000:3). Today the number of Sami speakers is estimated to approximately 24,600 (Ministry of Local Government and Modernization, 2014). The assimilation policy implied such a stigmatization of Sami identity (Eidheim, 1969) that many Sami did what they could to hide and suppress their Sami background and identity, especially in encounters with Norwegian society (Bjørklund, 1994). Due to the more recent revitalization and integration of Sami culture and identity, the Sami have now progressed to being generally treated as equals (Pedersen and Høgmo, 2012). Even so, the outcomes of the assimilation process still have an impact on Sami life and ways of thinking, and many hide their Sami identity out of shame (Minde and Nymo, 2016). However, the outcome of the assimilation policy and the revitalization movement varies according to the different Sami regions (Turi et al. 2009), and Sami today deals with at least two ‘worlds’: that of traditional Sami culture and the Westernized Norwegian culture (Hansen and Sorlie, 2012). The Sami in Norway do have, according to the Sami Act of 1987, § 3–5, a legal right to receive equitable health and social services adapted to the Sami language and culture. Yet, in assessing the extent to which this occurs, it is important to understand that the comprehension of illness and health is culturally conditioned (Archetti, 1986; Olsen and Eide, 1999). In traditional Sami culture, illness is understood to be dependent on the relationship between the individual and the community, and is interpreted as disharmony and lack of balance with the world in which one lives (Minde and Nymo, 2016). Thus, determining appropriate treatment depends on one’s understanding of illness. For example, in Sami traditional medicine, healing by being ‘read on’ is a common way to cure illness, and for Sami people this means they have received healing from a traditional healer for a somatic illness or other kinds of torment, or the prevention of illness or bad happenings. The origin of the term ‘to read’ is said to have come from the belief that traditional healers were supposed to have secret written formulas they used in the healing. Historically this practice coincides with the role played by the noajdde or shaman in the pre-Christian Sámi religion (Myrvoll, 2015). The traditional healer often perceives this treatment as related to supernatural forces or God (Mathisen, 2000). Method We chose to use qualitative interviews to answer the research question. Altogether, the eight members of the research group conducted thirty-one interviews with a total twenty four disabled Sami people, and thirteen next of kin of disabled Sami people (eight mothers, two fathers, two sisters, and one guardian). While twenty of the disabled persons were interviewed on their own, four persons with disabilities were interviewed with a relative or guardian as support, and the last seven interviews were with the next of kin of disabled persons. The latter was due to: (i) the informants’ young age, or (ii) because it was challenging for the disabled person to answer the questions with spoken language, and we as researchers had limited competence in augmentative and alternative communication. The informants received an information letter in Norwegian, Sami, and an easy-to-read version (a way of writing developed for people with learning disabilities using plain language). Regarding individuals with learning disabilities, we first sent an information letter to the person’s guardian or next of kin. In this we specified that valid consent implied that the person could possess sufficient information, understand the information given, and be able to understand the implications of their consent (Helse- og omsorgsdepartementet, 1999). The guardian or next of kin then consented for those assessed (by them) as not being able to give informed consent themselves, or presented the easy-to-read version of the information letter so they could decide whether to participate or not. Recruiting Sami informants is known to be difficult (Minde, 2010). We recruited informants through public health and social services, the media, and Sami and disabled networks. There is no public register in Norway for people who are Sami or disabled, which made the recruitment process rather complicated. Requests to participate were therefore sent to those known to identify as Sami and have an impairment. In this study, impairment is understood as the functional limitation within the individual caused by physical, mental, or sensory impairment (Goodley, 2011). Further, disability is defined as ‘a gap between individual functioning and societal/environmental demands’ (Tøssebro, 2004:4). The article focuses on the situations of ten females and twenty one males with a variety of impairments, such as sensory (e.g. sight and/or hearing), physical (e.g. paralysis), or cognitive (e.g. learning disability). Furthermore, the cohort of thirty-one men and women represents age groups from children to the older people (seven to eighty eight years old), coming from the north-, mid- (mainly known as lule-), and south-Sami areas. We used semi-structured interviews as these ‘are well suited for exploration of the perceptions and opinions of respondents regarding complex and sometimes sensitive issues and enables probing for more information and clarification of answers’ (Barribal & While, 1994, p. 330). Knowing that stigmatization is experienced both when it comes to being Sami and having an impairment, we were aware that some of the interview topics might be delicate for the informants. Therefore, besides using semi-structured interviews, we were also open to storytelling. There is a strong tradition of storytelling in the Sami culture (Nergård & Eriksen, 2006), and storytelling is a well-recognized strategy in community work (Ledwith & Springett, 2009). We hoped storytelling would allow the informants to speak more freely about their own experiences and feelings on being Sami and having an impairment. The informants chose whether to be interviewed in Norwegian (twenty seven) or Sami (four). The 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. All informants in the article were given pseudonyms. Findings All of our informants have experience with Norwegian welfare services, including health and social services, kindergartens, schools, and labour services, among others. The need for help amongst the disabled informants differs widely, especially when it comes to what type of help is offered. Some only need practical help a few hours a week, while others have needs far more extensive. Some of the informants reside in assisted living facilities for older people, others in sheltered houses or in traditional family houses or flats. Disabled people with a Sami background experience many of the same challenges as disabled people in Norway in general, such as barriers that prevent full and effective participation in work, education, leisure activities, etc. (Molden, Wendelborg, & Tøssebro, 2009). However, in addition, they experience oppression connected to their Sami culture and way of living, as I show below. How to understand and communicate about illness and impairments One topic that often arose during the interviews was how the Sami traditionally do not speak of illness or impairments. Øyvind’s father told us that talking about illness would have been considered nourishing the illness. According to him: ‘One is not supposed to focus on negative things in life, but rather use one’s strength on what is positive.’ Furthermore, Øyvind’s mother stressed that the Sami are more withdrawn when it comes to exposing themselves to strangers. This coincides with the opinion of Marit’s guardian, who claims ‘(…) the family is supposed to take care of itself and also not to talk about illness or weakness. It is very taboo’. According to Rakel: ‘The Sami prefer not to speak about illness. We are not very open on such things.’ Rakel suggests that this might be connected with traditional Sami culture where the belief is that ‘(…) the evil ear might hear’, and so you risk the illness getting worse or even infecting relatives. A negative consequence of not talking about illness was experienced by Rakel when most of her relatives, except her closest family, withdrew when she became ill. However, many of the younger informants spoke more openly about their own health and impairment. In addition to a tradition of not speaking about illness, our informants also pointed to a general Sami style of indirect communication, which is sometimes a challenge in meetings with Norwegian welfare services given their use of very direct communication. According to Øyvind’s father, Norwegians are very direct and straightforward, while in Sami culture, indirect communication is more usual with one speaking ‘a little around things’ and by using metaphors. Øyvind’s father describes how, in meeting with the welfare services’ direct way of communication, they often end up ‘a bit paralyzed or despondent’ and sometimes even furious. Furthermore, a mismatch of concepts might be another challenge in meetings between Sami people with impairments and the Norwegian welfare system. For example, there is no equivalent term in Sami for the concept of learning disability. They sometimes use terms like doimmaheattigun, which is a metaphorical term referring to a person that does not walk in the same rhythm as others. As this is not necessarily equivalent to the term learning disability, to avoid misunderstandings it becomes important that service providers get each Sami person to elaborate their understanding. Opinions are mixed when it comes to how one attends to people with impairments inside Sami communities. According to Ketil’s mother, impairments are much more accepted here. In her opinion, diversity is considered a part of human variety and acceptance of deviance is typical within Sami culture. She also stresses that from a Sami point of view: ‘(…) it becomes idiotic to compare normality and deviance like one does within the Norwegian heath care system’. Anna’s mother also describes the Sami community as more tolerant towards deviance: ‘You do not get a label glued to your head, as we are good at inside the Norwegian society.’ However, other informants have not experienced such acceptance of impairments. For example, Jon’s sister claims that how the Sami community relates to people with impairments is far behind the attitudes of Norwegian society, especially when it comes to accepting people with learning disabilities. According to her husband, this is why their family moved to a Norwegian area after having a child with learning disabilities. What does one comprehend as adequate treatment and/or services? Several of our informants mentioned the tradition of ‘read upon’. According to Ragnar, ‘reading is healing’ and takes away many different kinds of strains from people, adding, ‘It is the Sami who have made me well, not the doctors’. Stopping bleeding and removing pain or infection are examples of what a reader can do. Øyvind’s father points out that even today reading is so common and normal within the Sami culture that people from his area name the local reader ‘municipal doctor no. 2’. Many of our informants make use of both traditional Sami medicine and Western medicine, and are pleased with this. However, Ketil’s mother wishes that the public health care system was less judgmental towards this practice. ‘The important thing is that the persons involved are helped’, she said. She herself has used readers on both herself and her son. In her opinion, this form of healing does not come into conflict with Western medicine: ‘Norwegian doctors should try and understand the patients’ situation and be much more tolerant towards the alternative’. Several of our informants emphasize the importance of nature as a part of their Sami culture. For example, Nicolai describes how a rehabilitation centre made use of nature and Sami traditions, and how helpful this felt in his rehabilitation process. Being in nature makes him feel good and close to his ancestors and to himself. Øyvind’s parents also ask for more use of nature in treatment, in line with Sami tradition and what is important to them. Sadly, Nicolai’s experiences of welfare services that take Sami culture into consideration are not typical. Most of our informants report meeting a Norwegian welfare system that is sensitive only in limited ways to Sami culture. According to some of our informants, there is, for instance, still a long way to go before mental health services can offer Sami patients assistance they experience as helpful. Ragnar points out that it seems that the psychiatrists know nothing about Sami culture and ways of thinking, and feed him medication that he considers to be of no real help. Rakel found it difficult to talk with psychiatric professionals about her family without being misunderstood, and ended the consultations as she experienced talking to professionals that lack knowledge of Sami traditions as a waste of time. Øyvind’s mother gives an example on how insight into Sami culture might be useful within psychiatric services. She tells about a Sami patient who was admitted to the psychiatric ward, and was then deprived of his personal belongings, including his knife. The patient withdrew completely until a nurse gave him back his knife. In a blink, the patient became himself again. Within Sami traditions, a knife is not only a tool, but something that protects. ‘You never go into the forest without a knife. It is the steel in the knife that protects against evil spirits, not the knife itself’, she explains. Having to choose language The informants in this study speak primarily Norwegian or Sami, while some speak both languages. In some cases, professionals had told the parents that their child, because of the impairment, would struggle to cope with more than one language. Most of these parents were advised to let their child learn Norwegian. Per describes how professionals in the 1970s advised him to learn Norwegian rather than Sami, arguing that being bilingual was not possible for people with his kind of impairment (hearing loss). Thus, he never learned Sami. This decision has had a major impact on his whole life. According to Per, not speaking Sami has limited contact with his own family and excluded him from many other settings such as gatherings with friends, political committees, and organization work. In contrast, Ketil’s parents had the choice of whether Ketil should learn Norwegian or Sami. They chose Norwegian because they live outside the core Sami areas, but the mother describes this as a very difficult decision as it affected the whole family. They originally spoke Sami at home; but then had to switch to Norwegian. Consequently, Ketil’s siblings learned much less Sami. According to Ketil’s mother, much of their sorrow associated with their son’s diagnosis is connected to his loss of the Sami language and the strong link between identity and language. Understanding of information Informants, especially older people, have experienced not understanding the information given by welfare services. For example, Mattis’s sister describes how the professionals gave her parents all the information about her brother in Norwegian. Because Sami was their first language, the parents understood only parts of the information they received. According to Mattis’s sister, this influenced the choices her parents made regarding him, such as treatments and dealing with life situations. Consequently, she has involved herself quite a lot in her brother’s situation. She says, ‘all messages go through me now’. Furthermore, she points out, ‘this reluctance amongst older Sami to admit not understanding Norwegian is something the Norwegian society lacks understanding of’. Another of the stories an informant shared is about an older woman who only speaks Sami. All her adult life she brought one of her children to translate at consultations with the doctor. When she met a doctor speaking Sami for the first time, she burst into tears. Never before could she talk to a doctor about her personal problems without her children present, and she felt liberated. All her life she had felt degraded by the fact that she was forced to expose herself and her personal problems in front of her children. Nikolai is especially concerned about older Sami people who suffer from dementia, because many of them go back to speaking only Sami. For example, he told of a Sami woman who was very thirsty when her family came to visit her at the home for the elderly. When the family asked the staff why they had not given her any water, they answered that she had not asked for it. She had asked in Sami, but the staff did not understand her request. Having to choose between professional help or Sami culture It appears there are large geographic differences connected to access to the professional welfare system. Some of those with impairments that require special competence experience being ‘forced’ to choose between adequate professional support or access to Sami culture. For example, Anna’s mother told us how their plan had been to bring up their daughter within Sami culture and with the Sami philosophy of life, teaching her the Sami language, etc. When their daughter received her diagnosis, however, they soon realized they had to choose between professional support and access to Sami culture. They chose professional support and moved south. The mother sadly admits that her daughter lost her chance to develop a Sami identity because of this lack of professional help in the northern region where she was born. She states According to Norwegian tradition and Norwegian laws, I have done all the right things relating to my daughter. However, when I look upon my Sami heritage, I have done it all wrong. I have taken her away from her family and her roots. Ketil and his family live in the north, but not in a place where the Sami culture has a strong foothold. Nevertheless, his mother describes how she and other Sami parents living in Norwegian surroundings experience gaining access to Sami culture as a fight or battle. For example, as Norwegian schools have limited knowledge of Sami culture, parents must teach their children about Sami traditions and ways of living. Discussion A common feature of the stories of the informants in this study is their description of the cultural meeting with welfare services, where they experience barriers connected to a lack of cultural knowledge amongst the service providers. Important knowledge in the cultural meeting Drawing upon the material, we find expectations amongst our informants that the individual Sami will meet a system that has enough cultural competence to provide good services adapted to the Sami philosophy of life. Based on our interviews, I will now present some aspects of Sami culture that are important to Sami people with disabilities, of which the service providers are aware. First, knowledge of the traditional Sami way of communicating in general and, specifically, how they communicate about illness. Our material shows, in line with other research (Bongo, 2012), that Sami people would rather not talk about illness. Sami reluctance to talk about illness may have different underlying reasons; for example, that to discuss illness among Sami can be understood as showing weakness (Minde, 1995), that illness can be spread if put into words (Dagsvold, 2006), or because one is not supposed to give other people worries on one’s own behalf (NOU 1995:6). Another identified challenge is the contrast between the typical Norwegian style of direct communication and the typically indirect Sami manner of communication (NOU 1995:6). Both the indirect communication and the reluctance to speak about illness harmonizes poorly with the principle of user participation that is strongly underlined in Norwegian patients’ rights legislation (Helse- og omsorgsdepartementet, 1999), where patients are expected to actively promote their own case within the welfare system. If the welfare system is met with silence due to traditional Sami ways of communicating, Sami people with impairments might not receive the services needed. Second, it is important that service providers know that understandings of illness are culturally conditioned (Nergård, 2012; Olsen and Eide, 1999) and, thus, what is regarded as appropriate treatment will depend on how one understands the illness (Myrvoll, 2015). As mentioned earlier, illness in traditional Sami culture is understood as disharmony with the world one is living in and a lack of balance in life (Minde and Nymo, 2016). Thus, Western medicine, with its thinking in diagnostic terms, is not common inside Sami society. The Sami originally had their own methods to treat illnesses that might be read as traditional Sami medicine (Myrvoll, 2015). Oral transmission across generations has developed an understanding of illnesses and treatments that are closely connected to forces within nature and thoughts about balance in the universe (Henriksen, 2014). An example of one such tradition is the knife-steel as protection against evil spirits. This is an example of a holistic attitude towards living, meaning that people have a special connection to nature and experience a spiritual world within nature. ‘Reading’ is an experienced, spiritual world that is still very much alive and an important part of traditional Sami medicine. The perception of good and bad spirits is very alive inside the Sami understanding of reality, but is seldom communicated when meeting a Norwegian health system that only focuses on diagnoses and experimental facts, because the Sami do not believe that their understanding will be taken seriously (Nergård, 2012). Professionals treating Sami patients are recommended to include nature in the therapy (Dagsvold, 2010). Third, one has to be aware of the importance of access to welfare services provided in the Sami language, or of offering interpreter services at the meetings with welfare services. Even if Sami people with longstanding disabilities have been under the language domination of mainstream society, their understanding of Norwegian varies. In our material, for example, we find parents who have Sami as their first language (like Mattis’s parents) exclusively speak Norwegian throughout the upbringing of their disabled child and meetings with welfare services. Consequently, the parents may not understand important information about their child’s condition and treatment. A study on self-experienced discrimination amongst Sami people in Norway shows that approximately one-third of the respondents experienced health staff who did not speak Sami and that one in fifteen Sami-speaking respondents did not get a translator at doctor consultations or hospital consultations even though they had requested one (Josefsen, 2006). The study points out that it could be a risk to life not to have access to a translator when meeting with the health care system. Receiving services in Sami also means that Sami people with disabilities get the chance to receive professional help and discuss private matters without an interpreter present, as in the story of the doctor consultation with the elderly woman presented earlier. Language, culture, and identity are closely connected, and the legislation known as the Sami Act (Kommunal- og moderniseringsdepartementet, 1987) secures and strengthens the legal right to access the Sami language both in school and in the rest of society. The Sami language and understanding the Sami language becomes the glue that connects culture and identity. The competence within the schooling system regarding Sami conditions is very limited (Lile, 2012), and our material shows how Sami people with disabilities are especially at risk for not getting access to their own language and cultural habits. Fourth, the welfare system needs to understand that in Sami culture it is the norm for one to manage their situation and not be a strain on others (Bongo, 2012). Ketil’s mother points to this as a reason why so many families are reluctant to ask for help from the welfare system if they suspect something is wrong with their child. However, one should also keep in mind that the choice to manage by one’s self might also be a consequence of Sami people with disabilities experiencing service providers who do not understand the Sami way of living, offering treatment and/or services that are difficult to combine with how they live (Dunfjeld & Møllersen, 2010). Risk of double discrimination As in this study, earlier research of Sami peoples’ experiences with health and social services in Norway also identifies a lack of knowledge about Sami culture (Hedlund & Anne, 2010; Nergård, 2012). Important findings in our study, therefore, are not only how the limited competence in Sami cultural knowledge among service providers contributes to create and maintain an oppressing situation for this group in Norway, but also how the combination of being Sami and having disabilities sometimes poses the risk of double discrimination. Their access to Norwegian society and welfare services is hindered both by disabling barriers due to lack of facilitated environments, as well as by cultural barriers such as a lack of knowledge about Sami culture. I will now present two examples of double discrimination. First, because of large municipal differences and a lack of special competence in welfare services, some families with disabled children (like Anna’s family) become ‘welfare refugees’, moving to other municipalities to get needed services (Funksjonshemmedes fellesorganisasjon, 2014). Having to move is demanding on all families with children with disabilities. However, to Sami families, the consequences might be even more extensive, as they experience it as being ‘forced’ to choose between moving away from traditional Sami areas to get adequate professional support or having access to Sami culture by continuing to live in traditional Sami areas. The choice to move, moreover, reduces both the disabled child’s and any siblings’ chance to grow up as a part of the Sami culture and with a Sami identity. This can be defined as a sort of structural discrimination, where the superior structures are shaped so that discrimination is built into the effects (NOU 2002:12). In this case, welfare services discriminate against them as disabled persons because it prevents them from choosing where to live, and against them as Sami because it limits their access to Sami culture and identity. Second, some Sami people with disabilities (like Per) experience barriers to participation in areas such as school and work. Schools and the labour market are not facilitated for people with impairments, limiting their access to equal education possibilities, a proper job, etc. Additionally, some Sami people with disabilities feel excluded from the Sami community and their Sami family as they, by the educational services, are not given the chance to learn Sami. Our informants have not always agreed with the advice of choosing Norwegian over the Sami language. The scientific knowledge that establishes that gaining access to one language strengthens the capacity to learn other languages is rather new (Solstad et al. 2012). Consequently, many Sami children with different types of impairments have not received the necessary support to be bilingual in Sami and Norwegian, and speak only Norwegian. Standardized services as equal services? Our disabled informants experience barriers to participation and oppression related both to their Sami background and to their impairment, which makes an intersectional perspective relevant. Intersectionality underscores the multidimensionality of marginalized subjects’ lived experiences (Crenshaw, 1989:139). Belonging to an ethnic minority and having an impairment, our disabled informants are at risk of experiencing two different marginalization processes. Fuentes (2016) describes these as: (i) a culturalization of the impairment, where the focus on the disabled is mainly related to the individual’s culture, or (ii) a homogenization of the impairment, where the attention is drawn almost entirely on the impairment, and the disabled people are treated the same regardless of their cultural background. The informants present numerous descriptions of how they experience welfare services as standardized to the majority in society, and not adapted to Sami culture. For example, how service providers communicate, what they communicate about, how they understand illness, what treatments they offer, the use of the Norwegian language, etc. Accordingly, our disabled informants mainly seem to experience an extensive homogenization of the impairment. This means that service providers focus almost exclusively on the impairment, and treat all disabled people the same and as having identical needs, independent of their cultural background and linguistic needs. In our study, there are several consequences to this homogenization process. For example, some of the informants describe how the welfare service’s direct communication style provokes them, and does not make them come forward with their actual needs. Others tell of how a lack of understanding the Sami culture makes them end or decline the treatment offered. To understand the strong emotional reactions to being offered standardized services adapted to the majority culture, one must keep in mind the collective history of the Sami, with a century of harsh assimilation processes and discrimination. These sorts of memories can be roused, especially in meetings with service providers who have a majority background (Hedlund and Moe, 2010). Thus, even with the recent revitalization of Sami culture and identity (Pedersen and Høgmo, 2012), the history of dominance and oppression are also very much present in today’s encounters with welfare services. The consequence of the described homogenization process, reducing Sami disabled people to recipients of treatment and care regardless of their ethnic background, is that their needs are not met and might actually contribute to maintaining oppression. Nevertheless, the solution is not to provide standardized services adapted to Sami culture, treating all Sami people with disabilities the same. As our findings show, how Sami people with disabilities relate to their Sami background and Sami culture varies greatly (Melbøe et al. 2016). What we have identified as important knowledge about Sami culture is essential to some Sami with disabilities, but not to others. For example, some Sami speak freely about illness, prefer Western medical treatment, and receive their services in Norwegian. Consequently, if service providers are to contribute to equality and eliminating oppression, they must be very sensitive and adjust their help to each person they meet (Hedlund and Moe, 2010). Providing adequate services to Sami people with disabilities implies providing quite different services adjusted to each individual. Concluding remarks This article builds on community work as a critical perspective on participation, discussed in the setting of the encounters Sami people with disabilities have with community welfare services. The study reveals an oppressing practice wherein several barriers in the Norwegian welfare system hinder them from equal participation compared to those of the majority, because the welfare system mainly offers standardized services adapted to the needs of mainstream society. To move from oppression to equal practices, the service providers need to develop a sensitivity and consciousness about the aspects of culture and language that the Sami bring to the meetings. According to our findings, community work must be based on: acknowledgment of the Sami culture; knowledge about how Sami traditionally communicate about illness and impairments; knowledge about what Sami comprehend as adequate treatment or services; and use of the Sami language in welfare services. This knowledge is necessary to contribute to equal community work, in order to reduce the marginalizing practices in encounters between the service providers belonging to the majority population and the Sami people with disabilities, which currently maintains a barrier to participation. Line Melbøe leads the Arctic Centre of Welfare and Disability Research, and the research group ‘Diversity and Tolerance’ at UiT, the Arctic University of Norway. She has been an associate professor at the Department of Social Education at the same university since 2011. Acknowledgements I am grateful to the informants who contributed stories of their everyday life, to the members of the research group ‘Diversity and Tolerance’, who participated in the data collection: Gunn-Elin Fedreheim, Bjørn-Eirik Johnsen, Ketil-Lenert Hansen, Gunn-Tove Minde, Tone Dinesen, Kari-Anne Opsal, Marit Rustad, and Leif Lysvik. 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Community Development JournalOxford University Press

Published: May 10, 2018

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