Migration and disability narratives from an intersectional perspective: a photovoice study

Abstract

The aim of this paper is to explore everyday life experiences of migration and disability from an intersectional perspective drawing on issues such as gender, class, and ethnicity. This is relevant because when focus is on either migration or disability, unique challenges faced by disabled migrants are neglected, leading to fragmented support and a lack of accurate knowledge. The analysis is based on retrospective data from photovoice sessions conducted within the context of a community-based project, Disabled Refugees Welcome (DRW). A secondary analysis has involved eight of the members from the original photovoice sessions as well as academics. The results are presented in a narrative thematic analysis. The findings show how the combined effects of liminality, structural violence (lack of accessible and adapted housing, lack of access to knowledge about societal resources), and multiple discrimination risks can result in permanent exclusion.

Points of Interest

• Exploring the implications in everyday life about issues related to migration, gender and disability is necessary to raise awareness of assumptions and stereotypes, which can improve health and living conditions for disabled migrants.

• Current guidelines and laws insufficiently provide guidance and support for disabled persons who are also migrants.

• Education, work, housing, and healthcare are critical parts for inclusion in northern. European societies, yet too often inaccessible for disabled migrants.

• Experiences of disability and migration can amplify feelings of loneliness, inadequacy and isolation.

Keywords:

• Refugee
• community-based participatory research
• visual
• gender

Introduction

Experiences of migration are impacted by factors such as whether migration is voluntary or involuntary and intersections of i.e. ethnicity, social class, and education. We refer to voluntary migration as a move across international borders, which is not based on human rights violations associated with risk for persecution, conflict, or violence in one’s home country. Forced migration will be used to refer to an involuntary move away from a country of origin, across international borders, due to experienced or risks for human rights violations. Living in a new country as a migrant can constitute a complex picture of learning a new language, obtaining work, and gaining an understanding of new cultural codes to name a few. A group that warrants additional and specific attention are migrants with disabilities, because policymakers and spokespersons tend to focus on migration or disability, but both advocacy movements often fail to consider the unique needs and situation among people that have forcibly migrated in addition to having a disability.

Background

Knowledge and awareness about the intersectional experiences of migration and disability is limited (Mirza 2015, 2019; Mirza, Hasnain, and Duke 2018). The status of disability, migration, and minority ethnic groups have historically and still are linked to discrimination and oppression (Oliver 1990). By the end of 2018, the population of forcibly displaced refugees was 70,8 million, compared to 68,5 the previous year (UNHCR 2018). As a result of persecution, conflict, violence, natural disasters or human rights violations, the number of new displacements was equivalent to an average of 37,000 people being forced to flee their homes every day in 2018. Among refugees and asylum seekers there are persons with physical, psychological, emotional, and/or sensory disabilities. Certain groups are at a higher risk of experiencing harm or having their rights violated, including women, girls, children, persons with disabilities, and older or stateless persons (UNHCR 2020). According to Commission for Refugee Women and Children (UNHCR 2008), it is estimated that between 7% and 10% of all refugees have disabilities.

Disability and access to services

The United Nations Convention on the Rights of Persons with Disabilities (2006) states that ‘disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’ (p.1). In societies around the world, groups of people that can feel devalued include people with different types of disabilities, people who live in poverty, and other minority groups. To this list, persons with experiences of migration, can likely be added. Seminal work has provided clear evidence of the marginalization experienced by disabled asylum seekers with regard to barriers in accessing social services (Harris and Roberts 2001). These comprised three main types of barriers: information requirements, linguistic requirements and forced moves. Information, access and use of services and benefits is frequently major hinders (Harris 2003). In addition, inattention to language requirements aggravates further successful service provision (Ahmad 2000).

Perceived barriers of health were also related to the migration trajectory, i.e. being exposed to trauma in countries of origin, such as imprisonment, deliberate denial of treatment for acute conditions, witnessing massacres of family and friends, exposure to chemicals, being injured in acts of war, and impairment from undergoing torture (Harris 2003; Kirmayer, Gone, and Moses 2014). In their country of origin, disabled refugees can face persecution or stigma based on i.e. political view, religious beliefs, and disability (being actively discriminated on grounds of impairment). Fleeing their home country to seek refuge in another, can be a traumatizing experience, which also depends on how far and for how long persons have journeyed. For child asylum seekers, this trauma is often more debilitating and can cause a range of emotional and psychological challenges during their formative, teen and adult years (Williams 2020). The intersectionality of migration and disability is particularly important because refugees with physical disabilities and/or mental health conditions are especially exposed to traumatic experiences as they often do not receive the care they need while going through the asylum-seeking process. Disabling conditions can be exacerbated as a direct result of delays in necessary social and/or healthcare, which can be especially challenging for children and families (Williams 2020).

Intersectional challenges of migration and disability

Exclusion and discrimination can be expressed in different ways in society. For instance, among disabled migrants from Iran in Belgium, challenges of exclusion and discrimination became visible in relation to the negotiation of citizenship, access to education and jobs as well as general acceptance in society (Albrecht, Devlieger, and Van Hove 2009). Similarly, among Syrian refugees in Turkey there were unmet needs that were particularly salient among children with intellectual disabilities and their families. Families reported a high need for information and financial support, but language barriers and translation problems became a significant negative barrier for families (Oner et al. 2020). In the UK, as another example, local authority social service departments have a responsibility to carry out an assessment of care needs. Disabled people still experience difficulty in gaining access benefits to which they are entitled (Ward, Amas, and Lagnado 2010). There is a significant gap in support for this group, compounded by the complexity of law around asylum and disability rights and entitlements, by their refugee specific needs and by inappropriate provision from those with a duty of care. Moreover, in the United Kingdom the Immigration and Asylum Act 1999 removed asylum seekers’ eligibility for mainstream benefits, thereby removing any acknowledgement of the financial costs associated with disability. Disabled asylum seekers are referred to as ‘people with care needs’ and like any other resident, people with ongoing asylum claims are entitled to apply for a Care Act assessment. If found eligible, a person may receive social care services (Yeo 2020). This process has resulted in that many people are denied access to services and support irrespective of migration status, which can give rise to secondary challenges not always specifically related to being a migrant, i.e. access to appropriate housing. Repeated references to disabled asylum seekers as vulnerable, diverts attention from the systematic denial of services and support, which creates and increases the exposure of vulnerability (Yeo 2017).

Heterogeneity and deficiencies in the systems for receiving disabled refugees, who are at serious risk of exclusion, is a common denominator at the international level, in which care systems have been identified as particularly insufficient (Martín-Cano et al. 2020). In accordance with Bulgarian legislation, an asylum request can be expressed in oral, written or other form, however, a reluctance to assume a more active role in identifying asylum requests is especially problematic in the case of vulnerable asylum seekers, such as disabled people. Hence, training to identify asylum applicants, including those with special needs would also help mitigate the risk that they may be removed before being able to make an asylum claim or before their claim has been examined (Shisheva 2016). These findings are reflected across the world in studies from Canada, Europe, United Kingdom, United States, and Australia that suggest that settlement agencies are not prepared or equipped to deal with disabled immigrants because disabled people are not expected to be immigrants (Groce 2005; Harris 2003; Harris and Roberts 2004; Mirza 2011a, 2011b; Mirza and Heinemann 2012). Between 2005 and 2006 over 200 people had been wrongfully detained in Australian immigration detention centers, of whom 13 were people with a disability. The intersection of disability and ethnicity leaves people vulnerable to human rights violations due to racial prejudices that reside within the majority population (Soldatic and Fiske 2009).

Since 2003, the Common European Asylum System defines regulations for refugees with disabilities at the European Union level. In the national law implementing this directive, Member States shall take into account the specific situation of vulnerable persons such as disabled people (Martín-Cano et al. 2020). Although immigration governance is increasingly centralized at the European Union level, the trend regarding integration governance directed at the person who has migrated is more focused on the local level (Alexander 2003; Ward, Amas, and Lagnado 2010). This is likely due to local policies being more sensitive and responsive to the needs of migrants locally. Political asylum is originally defined based on a human rights framework and a discourse of rescue that corresponds in part to discussions of precarity, interdependence, and mutual vulnerabilities in transnational feminist work (Shuman and Bohmer 2016). Tensions between rights-based discourse and that of vulnerability are not dissimilar to historic divisions between the charity and rights-based discourse of disability as well as different perspectives of disability (Yeo 2020). Disability scholars in particular have been at the forefront of arguing that when discourses about vulnerability are operationalized, they are imbued with disempowering and patronizing social processes, undermining the position and rights of citizens and diminishing attention to the responsibility of society in creating adversity (Hasler 2004; Hollomotz 2009; Wishart 2003). Furthermore, research findings continue to underscore that marginalization of disabled people has intensified when combined with international displacement (El-Lahib 2015; El-Lahib and Wehbi 2012; Hanes 2009; Mirza 2011a, 2011b; Mirza and Heinemann 2012; Soldatic and Fiske 2009; Soldatic, Meekosha, and Somers 2012).

When support is provided from Refugee Community Organizations rather from national disability organizations, there is a risk of exacerbating disparities because of voluntary support services often lack funding and thus services risk contributing to disparities. An example of this was a systematic reduction of support and services available to disabled people seen in the United Kingdom, which coincided with increased labelling of certain groups as ‘vulnerable’. These processes appear to be mutually reinforcing and thus undermine the rights of disabled people (Yeo 2020). An analysis of immigration documents demonstrates a clear emphasis on the centrality of discourses of risk and protection that shape the construction of admissibility and inadmissibility of immigration applicants (El-Lahib 2016). Those in the most vulnerable situations, including pregnant women and asylum seekers with disabilities, have been unable to access treatment as their allowance will not cover the cost, leaving many to rely on charities for help, or living without health and social care altogether (Williams 2020). There is a difference in support obtained depending on immigration status (refugees have better conditions than asylum seekers), which is a crucial issue impacting on the statutory support received.

Migrants with disabilities constitute a group that receives fragmented support even though there is a need for coordinated and tailored support. The unique needs and situations that imbue everyday lives among people that have forcibly migrated in addition to having a disability is an area that needs specific attention. To further unpack the consequences of being a disabled refugee we will utilize concepts of disablism (Baglieri and Lalvani 2019; Goodley 2014), ableism (Dolmage 2017) and structural violence (Galtung 1969). Ableism refers to the ideology of valuing abilities and abledness over disabilities and disabledness (Baglieri and Lalvani 2019; Campbell 2009). Dolmage (2017), who has conceptualized ableism, defines the term as follows:

Ableism, on the other hand, instead of situating disability as bad and focusing on that stigma, positively values able-bodiedness. In fact, ableism makes able-bodiedness and able-mindedness compulsory. […] Ableism renders disability as abject, invisible, disposable, less than human, while able-bodiedness is represented as at once ideal, normal, and the mean or default. (Dolmage 2017, p. 7)

However, only disabled people are discriminated against through direct forms of ableism, (Baglieri and Lalvani 2019; Goodley 2014). Disablism is a set of practices that ‘promotes the differential or unequal treatment of people because of actual or presumed disabilities’ (Campbell 2009, p. 4).

Structural violence (Galtung 1969) refers to the social structures (economic, political, legal -and medical) that may impede individuals and groups from meeting their basic needs by having a disproportionately negative impact on specific groups and communities and thus perpetuating inequality. In relation to the multiple social challenges and complexity that disabled refugees face within these discourses, this paper aims to explore everyday life experiences of migration and disability from an intersectional perspective drawing on issues such as gender, class, and ethnicity.

Design and methods

This paper is based on an innovative design in which retrospective data from photovoice sessions conducted within the context of a project, Disabled Refugees Welcome (DRW) has been combined in a secondary analysis with members of the photovoice group. Although there have been several reviews of photovoice over the years (Catalani and Minkler 2009; Courcy and Koniou 2022; Lal, Jarus, and Suto 2012), the use of secondary analysis with photovoice data in combination with further iteration of data has not been reported within disability and migration studies to our knowledge. The collaborative sessions served to both understand and reconfirm data from the primary photovoice sessions as well as in generating new data about everyday life experiences of migration and disability from an intersectional perspective. Projects grounded in photovoice methodologies challenge the view of participants as a source of information and instead engage members as co-researchers in defining what information is of relevance given a general area of interest, generating possibilities to influence and reframe research inquiries (Wang and Burris 1994, 1997; Wang, Burris, and Ping 1996). This is conceptually important because photovoice shifts focus towards the creation of a common platform from which to actively and collaboratively pursue social change through a form of resistance (Asaba et al. 2014; Asaba et al. In press). Photovoice has been used in research including persons with disability, demonstrating methodological viability given relevant research foci (Gabrielsson, Cronqvist, and Asaba 2022; Gabrielsson et al. 2020; Heffron et al. 2018; Holmlund, Hultling, and Asaba 2018; Mälstam, Bensing, and Asaba 2018; Simpson and Richards 2022). Ethics approval has been obtained by the Swedish Ethical Review Authority (dnr: 2020-04100).

Contextual background

In 2017 the Independent Living Institute in Stockholm was awarded funding from Arvsfonden for the project Disabled Refugees Welcome (DRW 2020, June 30). Through several active community initiatives, individual interviews, and a photovoice project, Disabled Refugees Welcome accumulated a unique compilation of data with disabled migrants (both from forced and voluntary migration) who live in Sweden. The Disabled Refugees Welcome photovoice project group invited researchers to the inaugural exhibition as well as later to explore the qualitative data from their photovoice sessions. The participatory design that informs the project is in many ways unique, and relevant for several reasons: a) empowerment informs the process and members of the community have actively been engaged in initiating and conducting the project, b) sustainability is strengthened through community partnerships, and c) voices from the project fed directly back into local practices. Moreover, methodologically visual research methods can encompass systematic ways in which visual materials are gathered or generated and worked with in order to understand, explain, or express phenomena – a process that is in constant development (Pink 2012). This is relevant because challenging social problems sometimes leave the speaker of an experience at loss of words or in need of different ways to approximate the issue at hand.

Recruitment & participants

In the first step, no researchers were involved in generating, analyzing, or presenting data. Recruitment using purposeful sampling of photovoice group members was completely conducted by the community-based organization, Independent Living Institute, which had funding for and leadership of the project under the title Disabled Refugees Welcome. Nine persons were contacted, all agreed to participate, but 1 dropped out prior to beginning due to a move. In the second step, the corresponding author was invited to engage with the photovoice group (6 of 8 members continued, 2 no longer had time to participate due to family priorities and work) to explore possibilities for secondary analyses and continued projects. Inviting a researcher had its roots in previous photovoice work conducted by the corresponding author, which was known to the group through one of the facilitators. In the third step, collaborators based on their expertise in social work and disability, and migration and human rights were invited. The research team received ethics approval to a) access materials from the completed photovoice sessions, and b) to generate new data through further collaborative work with the group. In the fourth step, informed consent about the use of retrospective photovoice materials as well as prospectively generating new data through group discussion and collaborative work was ascertained. The members of the photovoice group were interested in deepening the analysis using concepts that could further an understanding of their shared experiences and reach a wider audience. An extended segment about all contributors to this article is included under author reflexivity.

Generating data - a collaborative process

In the initial phase of the photovoice project, a group of eight disabled adults who had experienced migration were involved in 8 photovoice sessions over a period of 4 months during summer/autumn 2019, in which they had photographed objects, situations, and symbolically relevant artefacts from their everyday life to identify and raise awareness about their experiences. Photographs and the themes for each session were generated each week and combined with audio recorded narratives that unfolded in group discussions each session. Combining visual images and narratives can be a powerful way to engage a group of people in a critical dialogue to identify and reflect on community issues in order to understand as well as potentially provide alternative ways to solve problems (Asaba et al. 2014; Carlson, Engebretson, and Chamberlain 2006; Wang and Burris 1997). The photos that were generated and discussed through photovoice sessions culminated in a photovoice online exhibition that was hosted by Disabled Refugees Welcome on June 10, 2020 and an on site exhibition when the restrictions from pandemic ended in March 2022. The exhibitions (to which researchers were invited as guests) were an example of a community generated initiative with rich data that culminated in a visual and narrative exhibition with posters to raise awareness of particular social issues, challenges, and predicaments.

After ethical approval was obtained, all transcribed audio-recordings and photographs generated by the group were shared in order to plan for secondary analyses. During the planning session topics discussed included: informed consent, what material was available for secondary analyses, how to share and store material, expectations about involvement and outcomes in this second phase, overarching discussion about research processes including qualitative analyses, as well as a discussion about co-authorship. The researchers, after receiving access to text and visual materials, initiated qualitative analyses and brought emerging analyses back to the group for discussion. The group agreed to audio-record the planning session as well as subsequent analytical sessions, which constituted further data and was integrated as part of the analysis. There were three sessions during this phase in addition to three email exchanges in which the entire co-authorship had opportunities to read/comment texts as well as send segments of text to the first authors for integration into the manuscript.

Data analysis

Thematic and storied analyses based on a narrative approach were used to explore the data (Polkinghorne 1995). The transcribed texts have been mined for significant events, considering situations and contexts. Intersections between dimensions such as gender, disability, and ethnicity have been explored. Utilizing an intersectional lens enables the exploration of how perceived group identities can put people in vulnerable positions based on various forms of bias and shape the specific ways different people experience that bias (Gillborn 2015). This analytic approach is appropriate for situating lived experiences in contexts and the complexity of multiple factors that interact to impact on everyday life. Members of the photovoice group have been active in generating narrative and visual data and the initial visual analyses. Further analyses were conducted in accordance with photovoice techniques and analytic methods (Wang and Burris 1997) as well as secondary analyses. Secondary data analysis involves analysing data from previously completed projects to explore new questions or use different analytic strategies that were not a part of the primary analysis (Ruggiano and Perry 2019). Whereas members of the photovoice group initially worked visually and inductively with the materials generated to prepare a public exhibition, the second step of analysis in which academic research members were invited to the group was guided by secondary analyses. The researchers initially explored all exhibition materials, raw materials for the exhibition, transcripts from the photovoice sessions, and began to analyze materials including narrative explanations for situations that were identified as significant for the group. The analytic process consisted of a back-and-forth process with the entire group of co-authors, leading to a common understanding of the materials. The co-authors of this paper where involved in three targeted sessions of secondary data analysis. Concerns regarding secondary data analysis with qualitative data have been described in the literature (Tripathy 2013), which the authors have taken in consideration. Moreover, informed consent, confidentiality, and anonymity when data are archived and/or shared for a secondary analysis was considered (Ruggiano and Perry 2019).

Author reflexivity

Common among all authors is their experience of migration to Sweden, however these migration trajectories are diverse and represent different processes and privileges as well as voluntary and forced migration. We came to this project with different identities and positionalities concerning gender, race and class backgrounds. Some of us are knowledgeable about the concepts and theories this article is based on, but for some the perspectives were new. All but two authors disclose own experience with disability(ies); mobility impairment, ADHD and chronic pain. In working together, the authors shared their reflexivity with each other, making transparent the motives of engagement in this study.

Findings

Experiences of disability and migration from an intersectional perspective was examined, in order to help bring to the surface the invisible power structures based on gender, age, and migration background that can impact on participation in everyday life. Themes are grounded in a two-step process constituting visual analyses in preparation for a public exhibition as well as secondary analyses of the entire data set.

Ambiguous sense of belonging - neither here nor there

Migration can inherently be about a liminal experience of being between places, a both physical and emotional experience of being in-between different worlds. The arrival to a new country, and the resettlement process, is characterized by a sense of being neither here nor there where the sense of being a newcomer extends beyond the first years after arriving to a new country. The experience of not knowing the ways of the world can take different forms, i.e. the lack of knowledge about cultural codes, language barriers, societal structures, and lack of social networks. By being in-between, we do not only mean a sense of being neither there nor here; but also, the incongruency of expectations placed on people to navigate successfully in a geopolitical and social landscape. This ambiguity and liminality could be understood as a disruption to ontological security as presented by Giddens (1999) who argues that reflexive awareness, or to know what one does, is characteristic of human action. However, much of what allows us to pursue our daily lives is carried on as practical consciousness bounded with the taken-for-granted routines of daily life. Giddens (1999) states that we act conventionally but what sustains everyday life is the interconnection of unnoticed everyday life actions. He gives a pivotal meaning to this interconnection of actions, stressing that their role is to form a positive view of the self, the world and the future, what he calls ontological security. Everyday life for a person that has migrated is disrupted by multiple experiences and can create liminality and an ambiguous sense of belonging.

A: I feel like I am hung somewhere, I do not belong there, I have already left my past and I do not belong to this. In general, it is not about housing or service or something in general, I feel like I am just in the air.

Forced migration begins with an involuntary departure from one place followed by displacement until the possibility for resettlement is enabled. The time between departure and entry can vary. If for a moment we treat this period as an acute phase, it is characterized by uncertainty, ephemeral and fragile opportunities, a hope for better futures albeit with no guarantees. Imagine that we can fast forward in time, at what point is a reasonable stable living situation anticipated? What do we need to shape a meaningful life?

Lack of housing and accessible living arrangements

The participants in this study describe a situation of resettlement in which many of the formal immigration formalities have been established, i.e. language courses have been initiated, and in some cases completed. Yet living arrangements are characterized by insecurity, frequent displacement, and in particular an incoherency and lack of communication between the Swedish Migration Board and the municipality who have a shared responsibility for the provision of housing.

Figure 1. ‘it is so heavy to open’.

When assigning housing, authorities seem to disregard the needs that arise from taking parental responsibility while at the same time having a disability. One informant’s experience illustrates the experienced challenges when the system is unsensible towards the specific needs of individuals the system is designed to support:

S: this one is the emergency exit. The house has some other door. This one is to evacuate, but they told me to use this door…It is so heavy to open, it is so difficult, because I have no strong hands and also I have a child. They sent an occupational therapist they were there, but they could not make it, they can’t make adaptations because I do not have the ‘firsthand’ contract (Figure 1).

Because a first-hand contract is in practice difficult (if not impossible) to attain for an asylum seeker/refugee in Sweden, the system fails to support persons who have disabilities and do not meet the first-hand contract rules. The shared responsibility for housing between the Swedish Migration Board and the municipality make participants insecure about who is responsible for an adapted housing, and not being able to take parental responsibility is reinforced by the lack of adequate adaptations due to the presence of specific physical needs. The participants heard that after two years of residency in a specific municipality they should be entitled to housing adaptations. However, the sense about whether this is in fact true creates a sense of uncertainty as it is illustrative in this dialogue:

E: in Amharic, translation: ja, it’s the municipality through migration

Ju: ja, now it’s from the municipality, it’s no more migration

Ja: But he got it by migration

Ju: I just want to be clear

D: and after these 2 years, what happens?

R: translates

E: In Amharic, translation: the 2 years are over, but they say nothing, I don’t know.

A dramatic situation raised by one of the informants, was when S was given an ultimatum of moving or loosing custody of her child.

S in Amharic, translation: When they said, that I have to move back to the North I said ‘I have been North in Kiruna for 1 year and it was most difficult for my health, because of the type of disability I have. It’s very cold there and this is hard for me. So, I don’t want to go back, and they hate that and said ‘ok, we take the child, and you can go wherever you want to.

Figure 2. Suboptimal living conditions.

Although S managed to not move to the north and not loose custody of her child by moving to suboptimal living quarters (Figure 2 and 3) in the city in which she was residing, similar stories also were told by others. In S’s case, she lived in a room for one year without proper kitchen facilities:

S: in Amharic, translation: there is no kitchen, so I am supposed to stand there and make food.

Ja: There is no water?

R: translates

S: in Amharic, translation: there is no water, we take water from the bathroom

S: in Amharic, translation: For one year, we were living there

She also describes that accessibility was suboptimal due to a heavy door and that she was not able to prepare meals except during certain hours while monitored by a landlord. The consequence was that she and her child spent most of their time on their bed. S says, ‘We were sitting in the bed, we were eating on the bed, we were sleeping in the bed, everything on the bed.’ This example also makes visible the failure in recognizing the intersection of disability, gender and precarious living conditions due to marginalization. Furthermore, it adds the dimension of time as a pervasive factor that dilutes responsibilities.

Figure 3. Room without proper kitchen facilities.

In another case, a woman was fortunate to establish contact with a non-profit that could assist her with legal advice. After engaging legal counselling, the woman was able to maintain custody and continue living in the city where she resided. This example illustrates the authorities’ objectification of a woman with disability and the coercive use of power by treating her child’s custody and place of residence as something that can be moved based on bureaucratic decisions and with no consideration of the woman’s need or specific situation. The multi-marginalized position of this mother (refugee status, being a woman and having physical disabilities) serves in this case is an example of how her life is affected by structural violence (Galtung 1969).

Figure 4. Consequences of sleeping by the window.

When support is not administered in accordance with a nuanced perception of peoples’ identities and only foreground a single dimension (in this case of being a refugee in language training) it causes trouble for the individual in need of support. This dialogue illustrates some of the problematic aspects when the bureaucratic system must handle needs that has to be dealt with in a timely manner:

E: I got a certificate from my doctor about my situation, and I gave it to the kommun [the municipality], the social [services], but I did not hear from them.

D: Did you ask for another apartment because of your disability?

R: translates

E: I explained for the people at …. I am sleeping by the window… Because of that, it gets cold and that gives me a pain, like a phantom pain. The doctor said it was because of the situation. And now because of the ‘etablerings’time [integration programs time] is finished we will be transferred from ‘arbetsförmedlingen’ [the employment service] to social services]. That is, it is very tiresome to go to school every day. When I get these problems with the phantom pain the whole night, I cannot sleep and cannot go to school. And that’s why the doctor gave me this paper. No answer so far (Figure 4).

Another way to frame disabledness is the social model of disability, which emphasizes that disabilities are constructed in their socio-cultural and socio-historical contexts (Haegele and Hodge 2016; Riddell and Weedon 2006). This model sheds light on how inaccessible practices, like physical barriers in society, discriminate and disable people. When the social worker at the municipality does not pay attention to the fact that E cannot attend school due to his disability which is further reinforced by barriers in the physical environment, it indicates how disabling structures have a negative impact on the entire integration process. Moreover, when the process focuses on a single dimension (being refugees in a process of training for the local jobs) other dimensions of peoples’ identity are neglected, creating struggles in everyday life and stress by the impossibility to comply to the predetermined timelines of the different organizations. Time is lost and E’s chances to obtain a job on the regular labor market are diminished.

Ju: my main problem is that ‘arbetsförmedlingen’ [the employment service] and this ‘etablerings’ [establishment] -time is not favoring persons with disabilities, because it’s just 2 years. And for you just to get your ‘färdtjänst’ [Mobility services] it takes about 9 months.

Ja: it’s a 2-year period, when you get help

Ju: from ‘arbetsförmedlingen’.

R: translates.

Ja: It means access to SFI [Swedish language course for immigrants], access to sources and access to money. So, you get to go to training, and you get money for 2 years…//

Ju: 2 years are not enough for disabled people. ‘Etablering’ to me should be individual, it should be individual.

For many of the refugees’ physical barriers in the environment contribute to both physical pain and emotional distress and it becomes challenging to cope with chores and responsibilities related to everyday life, in which the frailty of the dependence on the very service that is intended to enable independence is a paradox.

Experiences of simultaneous discrimination

The informants shared the experience of negative discrimination. The combination of being a person of color and having a visible disability seemed to increase the tendency of being discriminated on bases of being categorized according to separate but intertwined categories of gender, ethnicity, and functionality. S tells about her encounter with a married couple who were the owners of a coffee shop she used to visit. She recalls that the woman gave her poorer service than other customers,

S: in Amharic, conversation in Amharic, translation: Ja, it can happen mistreatment in some places. For example, it happened to me in (PLACE). In a café I used to go, and there was this – the café is run by the husband and wife. The husband is treating me very well, but the wife doesn’t like me, even if I am paying for the service//…//she even gives me a different glass, which is not clean and which is a kind of cup – not for customers. That can happen. I did not feel good afterwards, even if the husband tried to compensate it and treated me well, but anyway…

Another member of the group added:

(Int 5) L: in Amharic, translation: this kind of discrimination, because of my disability I am experiencing here in Sweden. Sometimes I am also treated very well, like an extra treatment.

L: in Amharic, translation: But it can happen, what S experienced, that can happen. I am not going to a café often, but it can happen.

D: and then you don’t know whether it is because you don’t look Swedish, whether it is your color or whether it’s your disability.

Ju: I think, when you are black and disabled it’s – laughs - too much.

The multiple levels of discrimination are not only between persons native to Sweden and those who are newly arrived. It can also take place within a group of people who come from the same country or share the same cultural background. For instance, in the case of attending church, as R reflects about in her role as group member; even though there is a common experience of having migrated, speaking the same language, being familiar with the same food, sharing religious beliefs, having a disability makes certain church rituals challenging and thus the disability per se becomes the focus of an experience that would otherwise only have been about going to church.

R: When I go to church – I am not a very church person, but sometimes I want to go to church. And when I go to church – you know in … church, you have to take off your shoes, when you go in. translates For me, the first thing is, it’s not easy to take off my shoes, and second I cannot keep my balance very well, I cannot walk without shoes. Translates So, I am in that kind of room, when you go in, where people just take off their shoes, put their jackets, if it’s winter and they leave their ‘barnvagn’[stroller] and so on in that room, and I can’t get through, in my own church! It’s a typical example. It seems that I belong to this church, but I am not – translates. I would like to take my daughter. I like the ceremony mostly; I like the songs. I want her to grow up like that, to get the chance to experience the same [things] I did in the church. But it’s not easy.

Through a dialog between informants the discussion continued:

R: It’s not for everybody, it’s not open, it’s only for the ones who can take off their shoes.

D: What about people in wheelchairs?

R: They can go in, but - conversation in Amharic, that’s mostly – you will be considered as a sick person. They will come with the holy water to you, they will want to cure you.

M: in Amharic, translation: I have this (?) (she means her splint) inside. When I go to church, I just take off my shoes. I can walk without the shoes. When I get inside, one woman – it has like a plastic under my foot – there is a mat inside the church, but you could hear some noise in the floor. So, she came and said, it’s not allowed to wear the shoes inside

R: translates

M: in Amharic, translates: I explained, and she apologized, but they think, that we don’t know.

This dialogue show identity dimensions such as gender, ethnicity and disability become mutually reinforcing as well as pervasive creating experiences of discrimination emphasizing the heightened level of prejudice that arises when disability intersect with other grounds of discrimination (de Beco 2020).

Two sides of the coin ignored: multiple burdens and agency

When people are not being listened to it has implications for their health and social relations. Lack of recognition can reinforce a sense of helplessness, which simultaneously stigmatize and put pressure on individuals to claim their rights. Social justice is not only a question of the distribution of social goods and material wealth in society, since it also includes individuals and social groups right to articulate their own experiences. Recognition emphasizes cultural injustices such as cultural domination, rendered invisible through normative practices that are embedded in culture, and disrespect, as in being routinely disparaged in stereotypical ways, and in interactions that occur in everyday life. When institutionalized patterns of cultural and symbolic value construct some people as either inferior or invisible, there is a lack of full partnership in social interaction and hence a state of misrecognition exists. A struggle for recognition is therefore a struggle to change institutionalized normative patterns that systematically deny people equal opportunities to participate in society.

Ju recalls when he was finally granted asylum. He remembers how he told the representatives of the authorities that he felt that his chances to become established were more likely to succeed if he could continue with his internship. Despite the fact, that he had built up a well-functioning existence, he was told that he had to relocate in another place,

Ju: and the last thing was when I was finally granted asylum, they send me up north.

R: translates.

Ju: and I told them, I have an internship, I am doing an internship here. They should put me in a municipality closer here, so that I can go to the internship, that can lead to a job, and I can be independent, but they did not listen to me.

R: translates.

J: I was kicked out of the migration accommodation. But I told them, I am not going to the north. So, I had to stay with friends and later rented on my own. (Int 4)

However, this type of response from representatives of the authorities was no exception to the rules, on the contrary. Ju remembered several situations where he felt that his opinions had been ignored and his experience-based knowledge had been dismissed. In addition to this situation, he recalls two other occasions where he was not being listened to. The first situation occurred, when he was going to move from one refugee camp to another, and he had asked the staff for help with packing his belongings; when the day arrived, nobody came to help him. The other occasion was when he was given the upper bunk bed and was met with disbelief when he explained that it was difficult for him to climb into the bed,

in the accommodation, I was once given, I got the upper bank bed to climb up. When I told them, I can’t climb up, they were not listening to me. They were asking for a medical certificate (Ju, Int 4).

This experience was something that other participants in the study also recognized from their own experiences. When people are exposed to a lack of recognition for their experiential knowledge and the multiple burdens experienced because of disability, ethnicity or social status, it can be referred to testimonial injustice, which occurs when ‘prejudice causes a hearer to give a deflated level of credibility to a speaker’s word’ (Fricker 2017). In Ju’s case testimonial injustice occurred when he met disbelief regarding his need for help with packing and having access to a low bunkbed, in which his reference to disability was discredited. In order for his statement to be considered credible, a validation was required of a physician who, through his medical ability, was given preferential interpretation.

Although Ju had legitimate needs’ he did not receive adequate help from the responsible authorities. Many of the refugees shared Ju’s experience of not having their firsthand, embodied experience valued as a reliable source of information.

An extract from one of the discussions between two of the participants exemplifies this,

A: in Amharic, translation: It’s surprising me. The problems are very similar, and we are in different places and are suffering. Why is this thing? Why don’t they solve it?

S: in Tigrigna, long conversation in Tigrigna with K and others, laughter, translation: We pass through, more or less similar situations, all of us.

(conversation between A and S in group session, 4)

Sometimes representatives of authorities, take for granted that refugees can handle new situations but since they have not been exposed to similar situations, they cannot relate to the present situations nor handle them. In this lack of recognition, not only the character of multiple grounds for simultaneous discrimination is neglected, but also the resources, authority and agency of the people is put in question.

Discussion

Migration has become a geopolitical key issue, which raises questions of identity, citizenship, diversity and integration. Establishing criteria of social belonging in the migration process and thus determining who counts as a citizen, tells us who is included and excluded, from just distribution and reciprocal recognition. In this study our aim has been to explore everyday life experiences of migration and disability from an intersectional perspective drawing on issues such as gender, disability, and migration. Disabled migrants often face unique challenges that fall between mainstream political priorities. Although both migration and disability are important priorities in European rhetoric, the unique and specific needs of disabled migrants have had a tendency to be less visible with the consequence of having important experiences overlook resulting in an ‘easy-to-ignore’ category of experiences (Matthews, Netto, and Besemer 2012).

Globally, the failure of most societies to fulfil the human rights of disabled people may be underpinned by the reality that the cause of justice exists in tension with a culture that values ableism. Combined effects of liminality, structural violence (lack of accessible and adapted housing, lack of access to knowledge about societal resources) and multiple discrimination based on the identity of being a disabled refugee contribute to the failure of inclusion, which are treated as individual problems – an expression of disablism, rather than a systematic societal failure. Hence, the lack of imagining the other, shows how the normalizing gaze of ableism, which becomes visible both at a policy level and in contact with representatives of the authorities becomes a prerequisite for the structural violence that contributes to discrimination. In contrast to ableism, whose normalizing gaze affects everyone, disablism only targets disabled people (Baglieri and Lalvani 2019). Unveiling disablism counteract situations of vulnerability that exists among disabled migrants. On a larger scale, the inability to responsibly co-ordinate processes for disabled refugees becomes an abuse of power, where disabled refugees become trapped by the decisions of the authorities and the dividing practices between different welfare actors. There is such a colonial thinking in these decisions, moving people’s lives as pieces of a game. By localizing the problem in the individual, social structures in this case not only reify the rhetoric of a mobility turn (Faist 2013), but of a negative portrayal of this group in media and social discourses, reinforcing structural violence.

Another striking aspect of the stories is the impact of contingencies such as the malfunction, lack of readiness, inaccessibility and other everyday problems caused in the everyday life of disabled people. Lack of recognition should not be understood as a cultural or symbolic bias, but rather as a status in society. Disablist oppression is much more than lack of access to resources and social exclusion. When institutionalized patterns of cultural value due to ableist values (Dolmage 2017) construct some people as inferior or their experiences as invisible, there is a lack of full partnership in social recognition and hence a state of misrecognition and othering. From an identity point of view recognition and redistribution might be constructed as mutually exclusive; but from a status point of view, they become integrated, which is the case for disabled refugees. These experiences are however, contested and challenged by the participants from their positions by trying to understand the mechanisms behind the attitudes and by pushing back from the margins. In the daily lives of people with disabilities, the multiple consequences of numerous encounters with disablism, racism and structural violence means simultaneous experiences of marginalization. Having experiences of migration most often include ending up an immigrant somewhere. Being an immigrant is frequently associated with negative stigma and reported discrimination in aspects of social life such as in school, healthcare, work, etc. We have argued that immigrants are also men and women, persons of different ethnic backgrounds, different religions, persons with disabilities, to name a few.

It is not just about to the lack of training to assess and meet the persons’ needs by authorities, but the lack of vision in a larger societal scale, of life moments and concrete adjustments that should be foreseen. Societies with no ability to foresee in policy, everyday practices, how decisions will be affecting the persons with disabilities are condemned to reinforce suffering, frustration, and violence. The intersectional lens of experiences of migration and disability showed in these examples’ emphasis the need of reimagine the other.

Participatory approaches, such as photovoice, could be highly useful for future research about the intersectional experiences of migration and disability. Involving people with own experience of disability and migration enable researchers and members of local communities to understand more about the looping effects between structural violence, disablism and ableism. Raising awareness among people with own experience of disability and migration, enable communities to challenge the deep individualization of experiences of migration and talk back to policy makers.

When weighing the pros and cons of conducting a secondary data analysis, the benefits of utilizing available data with unique and rare historical value outweighs the burden of participation in additional sessions. In this particular case, the photovoice group was invited to be part of the analyses. From the perspective of this project, it opens up a possibility to include valuable and available information about migration.

Concluding remark

Our findings shed light on inequality’s durability based on values attached to overlapping identities of being a disabled person and migrant, which is framed by collective experiences of disablism (Goodley 2014) and structural violence (Galtung 1969), which both contribute to discrimination. An illustration of this intersection is the, too often, lack of transparency in how housing accommodations are organized for disabled persons who have newly arrived in a country. The findings in this paper show that for many migrants’ physical barriers in the environment contribute to both physical pain and emotional distress. It becomes challenging to cope with chores and responsibilities related to everyday life, in which the dependence on the very service that is intended to enable independence is a paradox. Although this is not uniquely a problem for disabled persons or migrants, the situation of vulnerability is amplified through the intersectionality of disability and migration, which is why the immediacy of the problem is important to name and frame.

Disclosure statement

No potential conflict of interest was reported by the author(s).