Vulnerability at the intersection of poverty and disability

Vulnerability at the intersection of poverty and disability

Rannveig Traustadóttir and James G. Rice*

Centre for Disability Studies, Faculty of Social and Human Sciences, University of Iceland, Iceland

Abstract

This article examines the complex intersection of disability and poverty and uses the concept of vulnerability to consider disabled people situated at the margins of poverty. Vulnerability is regarded as an active area of research and an important policy focus for its preventative implications concerning poverty. However, the existing research on vulnerability, much like the bulk of the research on poverty, appears to be primarily concerned with statistical measures. This article is offered as an exploration of the analytical value of the vulnerability concept from a qualitative approach to illuminate the socioeconomic processes that are not easily apparent within a quantitative framework. The article reports on the findings of two research projects that focused on the intersection of poverty and disability. The goal of the projects was to gain an in-depth understanding and knowledge of the everyday lives of disabled pensioners from their own perspectives.

We contend that the utility of the vulnerability concept lies in its focus on the numerous factors specific to disability/impairment that can, in isolation or in tandem, create conditions of socioeconomic vulnerability that increases the risks of poverty in ways that are not complicating factors for people whose problems are primarily related to unemployment or low wages. The concept of vulnerability is useful as it can help to consider disabled people who are situated at the margins of poverty and whose complex sociostructural and impairment-related issues can increase the chances of an individual or family falling into poverty and which can in turn make the extraction from poverty much more difficult. Vulnerability is not merely a passive state but can also engender creative coping strategies on the part of marginalised people and which can hopefully inspire policymakers to look beyond the traditional governmental responses to poverty.

Keywords: Vulnerability; disability pensioners; Iceland; qualitative research; social networks

Published: 16 January 2012

Citation: Vulnerable Groups & Inclusion. DOI: 10.3402/vgi.v3i0.9172

© 2012 Rannveig Traustadöttir and James G. Rice. This is an Open Access article distributed under the terms of the Creative Commons Attribution-Noncommercial 3.0 Unported License (http://creativecommons.org/licenses/by-nc/3.0/), permitting all non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

*Correspondence to: James G. Rice, Centre for Disability Studies, Faculty of Social and Human Sciences, University of Iceland, Iceland. Email: james@hi.is

This article considers the complex intersection of disability and poverty with a specific focus on the concept of vulnerability. In recent years, vulnerability to poverty has increasingly become the focus of governments and international organisations such as the World Bank (Haughton & Khandker, 2009). In this context, vulnerability is defined essentially as the risk of falling into poverty as the result of the inability to weather economic “shocks”. This is considered to be an active area of research and an important policy focus for its preventative implications concerning poverty. However, the existing research on vulnerability, much like the bulk of the research on poverty, appears to be primarily concerned with statistical measures. Although it is critically important to enumerate poverty and vulnerability to analyse trends, allocate resources and to assess outcomes, such approaches often fail to capture the complex nuances of living at the borders of poverty. Qualitative research can complement these efforts through identifying and illuminating socioeconomic processes that are not easily apparent within a quantitative framework and thus drawing attention to further areas of research as well as issues of policy concern.

Recent research within the area of vulnerability to poverty has focused on a diverse range of issues such as education (Gesthuizen & Scheepers, 2010), ethnic minority status (Milcher, 2009) to that of the factors of primary resource-based economic sectors (Béné & Friend, 2011) and weakened “fragile states” (Dubois, Huyghebaert, & Brouillet, 2010). Very little research appears to have been done with regard to the analysis of disability and vulnerability to poverty. This is not surprising considering that among the 154 poverty assessments conducted by the World Bank over the last two decades, only 11 considered the relationship between poverty and disability (Braithwaite & Mont, 2008, p. 2). In the context of disability studies, socioeconomic marginalisation is a prominent theme, as Goodley pointed out: “To be disabled evokes a marginalised place in society, culture, economics and politics” (Goodley, 2011, p. 1). However, judging by the critical disability studies literature, it would appear that vulnerability to poverty has also not been as explicit of a research focus within disability studies as these issues have, for example, in sociology and the other human sciences. This article is offered as an exploration of the analytical value of the vulnerability concept. We contend that the utility of the vulnerability concept lies in its focus on the numerous structural factors specific to disability/impairment that can, in isolation or in tandem, create conditions of socioeconomic vulnerability that increases the risks of poverty in ways that are not complicating factors for people whose problems are primarily related to unemployment or low wages. The concept of vulnerability is useful as it can help to consider disabled people who are situated at the margins of poverty and whose complex socio-structural and impairment-related issues can increase the chances of an individual or family falling into poverty and which can in turn make the extraction from poverty much more difficult. However, vulnerability is not merely a passive state but can also engender creative coping strategies on the part of marginalised people to avoid impoverishment and which can hopefully inspire policymakers to look beyond the traditional governmental responses to poverty.

The article draws on the data produced by two research projects in Iceland conducted under the auspices of the Centre for Disability Studies, University of Iceland. Within an intersectional framework, the analysis of the data presented here is intended to shed light on the complexities of both poverty and disability within wealthy societies using the underexplored lens of vulnerability. What emerged from our initial findings was a pattern whereby research participants relied on a mixture of paid labour, social assistance benefits and other strategies to make ends meet, some of which were typical of economically marginalised people in general but some of which specific to disability. But, rarely was the term “poverty” (fátækt) invoked to describe their situations. Rather, the research participants were engaged in a struggle to manage on a daily basis, and which took a toll on their physical and psychological health. Periodic crises emerged in their lives, some of which were related to macro political–economic factors, whereas others were rooted in their localised social contexts or related to their individual issues of impairment or illness. The data were also suggestive that vulnerability, rather than poverty, may be the more apt framework in which to analyse their positions in this context. There is no question that many of our research participants were vulnerable to poverty, and in some cases it was clear that it would not take much for some to fall into conditions that could be considered as impoverished. But, this reinforces all the more the importance of the vulnerability analysis; the focus on vulnerability to poverty urges governments to act to prevent poverty, but the coping strategies on the part of the research participants also suggest further avenues for policymakers to explore through considering ways in which these actions could be supported.

We set out by discussing the concepts of poverty and disability and argue that the intersection with vulnerability provides an important insight to understand the complex socioeconomic lives of disabled people who live at the edge of poverty.

POVERTY, DISABILITY AND VULNERABILITY

The concept of poverty has a rather long history in the social sciences, in the process fomenting a good deal of debate on how poverty should be defined, measured and studied, spawning as well arguments as to poverty's causes and consequences. Many of the methodological, theoretical and political issues raised by Charles Booth's famed late nineteenth-early twentieth century study of urban poverty in London are still relevant today: the need to use a combination of quantitative and qualitative methods; the conception of poverty as a multi-dimensional and complex phenomenon; and the urgency for governments to act considering the long-term, generational implications of impoverishment. The subsequent ecological approach to urban poverty developed by the Chicago School of sociologists in the 1920s and 1930s (Low, 2005), the development of network analysis (Barnes, 1954; Bott, 1971[1957]) from the 1950s, to the culture of poverty thesis popularised in the 1960s and 1970s (Lewis, 1998[1963], 1970) have all been highly influential in understandings of contemporary poverty in urban societies. Some of the implications of this earlier work, which posit that poverty arises as the result of individual or family deficiencies have been soundly rejected within a body of critical ethnographic research often referred to as “new poverty studies” (Goode & Maskovsky, 2001). However, revised versions of the culture of poverty thesis continue to persist within academia and also attract some media attention (see Cohen, 2010).

A parallel body of research on poverty that employs primarily statistical methods to chart and analyse poverty has also been dominant among more quantitative disciplines as well as within international bodies such as the World Bank. In recent years, a significant force behind conceptualising and researching poverty has been that of the efforts of large, multi-national organisations such as the World Bank, the United Nations and the OECD. The recent World Bank publication Handbook on Poverty and Inequality (Haughton & Khandker, 2009) provides an in-depth and comprehensive overview of the latest developments in the quantitative approaches to studying poverty in terms of measurements, indicators and rates. The authors argue that there are two broad approaches or schools of thought when it comes to measuring poverty using statistical indicators. At its simplest, poverty can be seen as the “pronounced deprivation in well-being”, which, as the authors note, immediately raises the question as to what is meant by “well-being” (Haughton & Khandker, 2009, p. 1). One approach to answering this question is often associated with the work of the economist Sen ([1987]1999) as articulated in Commodities and Capabilities among others of his numerous publications. Sen argued that well-being is related to one's ability to function within a society and which could be related to a number of factors, ranging from material concerns such as income to that of social and environmental factors as well as political rights and security.

Sen's focus on “well-being” as a measure of an individual or a group's socioeconomic position within a given society—and his attention to the interconnections between material and social/environmental factors—has some obvious utility for research on poverty and disability, as it bears a certain resemblance to approaches to understanding disability such as the relational model of disability that focuses the interplay between the individual and the physical and social environment (see Gustavsson, Tøssebro, & Traustadóttir, 2005; Tøssebro, 2004; Traustadóttir, 2004, 2006), as well as the social model of disability that focuses more squarely on the social, economic and political factors that produce disability (see Oliver, 1990, 1996). This social–relational understanding of disability, emphasising the complex relations between the individual and society, has gained widespread international approval and is reflected in the policies of many international bodies. Examples include the EU Disability Strategy 2010–2020 (European Commission, 2010)that is based on a social understanding of disability and the UN Convention on the Rights of Persons with Disabilities (United Nations, 2006) where a social–relational understanding is articulated as the foundation of this new human rights treaty.

However, the concept of poverty and that of disability appeared to be inadequate to understand the complex socioeconomic circumstances of our pool of research participants in a more comprehensive way. They were diverse in terms of their ages, impairment types and degree, social backgrounds, levels of education and relation to the labour market, among other significant positional factors such as gender and class. Yet, they also shared many commonalities. Studies relating to issues concerning disability with factors such as poverty, income maintenance and standard of living in Iceland, as elsewhere, are often undertaken within a quantitative framework (see Hannesdóttir, 2010; Njáls, 2003; Ólafsson, 2005). Although this work is important and should be done, we felt that there was a gap in this work, which needed to be complemented with the daily experiences and views of those living at the borders of poverty, particularly with regard to disabled people. The factors associated with disability can have a significant impact over the life course of an individual (Priestley, 2003), affecting both access to and the quality of education and training, as well as numerous other aspects of social life that can influence an individual's life chances and socio-economic position within society. Those who become disabled later in life can face similar issues and constraints that limit educational and employment prospects. Furthermore, there are numerous structural disincentives for those who receive a disability pension that can contribute to their precarious situations such as low pension levels with claw-back measures regarding earned income and capital gains, the additional costs of medication, rehabilitation and assistive devices and negative societal attitudes that compound socioeconomic vulnerability in numerous ways (Traustadóttir, Björnsdóttir, Rice, Birgisson, & Smith 2011)

METHODS

The research on which this article is based is drawn from two projects conducted in Iceland. The first, Negotiating disability in the welfare state—a 3-year (2009–2011) mixed-methods postdoctoral project—provided some of the background material regarding poverty, the disability support and pension system, an analysis of disability law and policy as well as labour market activation policies and practices. This work was complemented with interviews done with insurance physicians, officials and agents within disability-related employment initiatives from the Icelandic Directorate of Labour as well as a sheltered workshop network. The second, Poverty and the Social Conditions of Disability Pensioners, was conducted by a team of researchers led by Dr. Rannveig Traustadóttir over a 10-month period in 2010 and 2011. Qualitative methods were employed to gain insights into people's daily lives and their strategies to survive on a disability pension. Interviews and focus groups were taken with approximately 50 participants between the ages of 16 and 66, all of whom were differently situated in terms of gender, age impairment type and marital status, but all shared the status of being a disability pensioner.

The interviews were transcribed and analysed according to the principles of Grounded Theory (Charmaz, 2006; Strauss, 1987; Strauss & Corbin, 1998), moving from analysing the transcribed interviews from an open coding process in the early stages to more focused coding in the later stages once the dataset was complete to synthesise and analyse the data. The open coding process involved the line-by-line analysis of transcribed interview materials, assigning descriptive labels to components of the statements made by research participants in regard to factual data (e.g. incomes, impairment type/degree and work history) and descriptions of actions or events (e.g. dealing with the pension system, attitudes of employers, household management and budgeting) as well as including a space for the participants’ reflections and commentaries. The themes chosen reflected their repeated emphasis within the interviews, stressed as significant by research participants or were interpreted such by our research team given their repeated mention within the body of interviews as a whole. After this point, higher order categories were constructed, which included a number inter-related concepts (referred to as axial coding) that appeared to offer some analytical insights into patterned responses common among our participants (e.g. “coping strategies”), despite many differences in their situations. During select points in this process, the findings of individual team members and focus groups were analysed collaboratively by the research team. In the final stage, the central principle of “vulnerability” was chosen as the analytical theme that our team felt best reflected our analysis of our respondents’ location at the intersection of disability and poverty.

The findings from our research for this chapter have been grouped into analytical themes that are intended to shed light on the intersection of disability and poverty and those who are located at the interstices of poverty. Many of the key thematic elements emerged quite early in the research process, whereas others emerged through the systematic analysis of the research data. Although these themes appear as isolates for the purpose of documentation and analysis, it will become clear that these themes are quite interdependent. The first theme discussed is financial: the inability to maintain a surplus. Linked to low pension levels, low wages, pension claw-back measures, high taxation and cost of living issues, the inability to maintain a surplus was repeatedly cited as a prime difficulty in making ends meet and which had clear implications for future security. The second theme focuses on the coping strategies that research participants engaged in, and which illustrated that their ingenuity played a key role in keeping them out of poverty. The third focuses on a prominent theme of ethnographic poverty research—the importance of social networks—but also their limits in addressing and preventing poverty. The last theme looks closely at issues of stress, insecurity, depression and mental health issues.

Maintaining a surplus

During the course of analysing the participants’ responses, it became clear that their ability to maintain a surplus and to withstand economic shocks depended on a wide range of factors. The key among the factors that created difficulty in maintaining a surplus relates to the nature of the Icelandic disability pension system. The various components that comprise the disability pension as a whole are means tested in terms of earned income and capital gains, but also linked to one's marital/domestic situation, age of onset of disability, and level of impairment. The pension system has long contained structural disincentives towards waged labour through clawback measures, although this has eased somewhat in recent years. The earned income ceiling (as of January, 2009) was raised to 109.600 ISK a month before pension reductions apply, but strong restrictions on capital gains remain, with only 98.640 ISK a year allowable. Such conditions have resulted in the understandable anxiety among disability pensioners in our research about not only the implications for them regarding earned income over this threshold but also the futility of significant long-term savings, investments and other capital gains that could act as an important security net for the future and reduce the risk of vulnerability to poverty, but which are denied due to these restrictions.

The intersection of pension benefits with earned income and capital gains is also complicated for those who receive union compensation as the result of a work-related injury that led to disability. The disability evaluation system of the state scheme is standardised for the entire country, whereas the union-based schemes appear to show some divergences. For example, one respondent reported that his union pension had downgraded his impairment evaluation, which resulted in an income reduction of 30%, followed by another 10% the following month, even though there was no change in his disability assessment by the State Social Insurance Administration. Not only did such rapid changes impact on immediate financial concerns but they also created an environment of fear and anxiety, which rendered long-term financial planning moot. For example, the respondent above also commented that he was fearful of complaining about this decision out of the concern of the possible negative ramifications of doing so.

Such anxieties were also apparent in interviews with pensioners with incurable genetic or neurological conditions regarding the state pension scheme, as in recent years permanent disability evaluations now are often preceded by a 3- to 5-year period after which pensioners are re-evaluated. While the re-evaluation issue has been championed by certain political figures in Iceland, in our discussions with insurance physicians they have questioned the costs and logistics of doing so on a repeated and widespread basis, especially for those with incurable impairments with clear diagnoses. In our interviews with pensioners, this has been viewed with weary resignation or bitterness that there is little chance that their impairment will improve or disappear during this time. As one respondent replied: “I have to be re-evaluated every five years [weary tone]. I got another five years. And then probably in those five years the MS will not have disappeared”. Another echoed similar sentiments about the futility of having to go back again in 2013: “If you have to go again, you get the longest five years. I got that … my epilepsy won't go away”. It was commonly agreed that the disability pension system is unpredictable, but it was also apparent that the vast majority of research participants, whether evaluated as “permanently” or “temporarily” disabled, were not satisfied with such an existence and as such were involved in education or work training activities in an attempt to build a future regardless of the unpredictable nature of the labour market, pension system or their impairments.

As the result of this uncertainty, attempts to set aside whatever surpluses possible were still undertaken, although often without any regularity or predictability. The interview questions that sought to explore the participants’ abilities to maintain a monthly surplus and weather economic shocks were usually met with the response that any answer had to be qualified in terms of the differences between months and even weeks, as well as to the magnitude of the shock in question. In terms of the question regarding the size of an unexpected expense that could be managed, the answers ranged from no ability to manage unexpected expenses to roughly 20,000 ISK per month, but depending on the month in question and mitigating factors. As one respondent replied: “20.000. I could manage 20.000”. But her spouse, who also participated in the interview and who was also disabled, qualified this by adding: “Yeah, 20.000. But when you have a car and something unexpected happens there, it's usually not 20.000”. The answers were also cast in a temporal framework, as one participant replied:

It depends on the month that it happens in. If it happened now it would be ok, because we actually managed to put a little bit of money aside. So if something would happen today or this week, I could manage it. In a bad month, I don't know.

Strategies for coping

The research participants employed a number of strategies to subsist in the context of financial vulnerability. As such, it is important to see that the people we are analysing as vulnerable to poverty are not unidimensional passive victims but active agents who are also involved in strategies to maintain or improve their positions. Some of these strategies differed little from those of frugal-minded people throughout the larger society. Other strategies were clearly linked to the additional costs associated with impairment and illness and also employed methods that were not available to the general public such as using the state-issued disability cards issued for which a number of discounts were available (Rice, 2010). Other strategies were more extreme and were used by those struggling at or below the poverty line and not typical of the general public such as relying on charitable organisations for food and clothing assistance or drastic alterations to consumption patterns whereby funds were reserved strictly for basic subsistence needs.

Which methods were used by the research participants appeared to follow certain patterns. For example, for younger individuals and/or couples without children, with strong support networks and some involvement in the labour market or further education, for them basic frugality was the key method employed. However, the factor of disability appeared to be a factor even for those whose financial situations were somewhat more secure for the moment. Individuals’ social circumstances inevitably change, and in the context of certain kinds of impairments, it was never known what disabling impacts impairments may have in the future. Some research participants had remitting/relapsing qualities to their impairments and which created issues for an employment market that is not suited to accommodate difference. For others with progressive or degenerative impairments, the future was even more uncertain. Frugality and cleverness were employed as the result of the awareness that current or future reliance on a fixed income or part-time employment created a measure of vulnerability that had to be acknowledged and, therefore, income for the future needed to be set aside. Pension levels could be cut or frozen with little notice, inflation and taxation could erode the value of the pension, children could enter the picture and an individual's physical or mental conditions could deteriorate and which could raise expenditures and lower incomes.

The impact of disability-related entitlements on the participants’ financial statuses was quite ambiguous. For example, the range of benefits and entitlements that were linked to the status of being a pensioner, such as discounts and reduced fees, were generally not seen as having a significant impact on budgets, as the discounts were often for goods and services that were not seen as essential such as museums and cultural events. When asked what kind of impact these discounts had on her budget, one respondent replied: “Not at all. Because we are talking 5%, 10%, 100 krónur there, 200 krónur here”. Yet, this research participant also reported that she used her permit for accessible parking mainly for small economic benefits, such as not having to pay certain parking fees. One young woman said:

I don't get discounts from Bónus [supermarket]. Ok, I am getting a discount from swimming and the movies and the occasional bus ride, but I am not getting discounts from my food or my apartment, which are the bigger things.

However, as a student, she pointed out that such small savings can have an impact if employed strategically:

I mean, like the bus fare for example… that really makes a difference. And also the [reduced] tuition fee. There is a book in there. That is how I see it—the discount, is a book. Even two, if I am lucky.

It was quite common for interviewees to dismiss the small savings to be had as the result of these entitlements, but their widespread usage among respondents does not suggest that they were so insignificant as to be ignored altogether. However, it does suggest that such discounts and entitlements can help to keep people financially afloat and is a strategy that is widely employed for such purposes, but can do little if circumstances turn more extreme. A single father—who was in a much more dire economic situation than the two women mentioned above—agreed that the discounts one can access with the disability card are so little that they rarely make much of a difference, aside from the more significant discounts from pharmacies. But added that he has more or less stopped using the card. When he was asked why, he replied: “Basically I stopped buying things because I can't afford to. So if you don't buy anything, you don't have to use the card”.

The research participants who were in the most marginalised positions relied on somewhat more extreme measures to survive. In one instance, a couple chose to officially divorce but maintained their relationship in practice. Although they were not boastful of such a decision, they explained that when they calculated the difference between being married to single status, it resulted in a roughly 60,000 ISK per month difference in household income in terms of the eligibility for a number of subsidies that provided higher levels for single parents. Simply, the financial benefits linked to the status of being single clearly outweighed the benefits of being married. However, caution must be employed when interpreting—and judging—the strategies of those struggling at the borders of poverty. It is perhaps advisable to rethink eligibility requirements and claw-back clauses within social welfare programmes in general to focus on actual household incomes, expenditures and situations rather than factors such as marital status that is not always the best indicator of the financial or social stability and circumstances of households, nor which accurately reflects contemporary relationships, living and parenting arrangements.

The use of private charities is without question a highly stigmatising subsistence practice for economically vulnerable people, but sometimes there was no choice but to seek such assistance. One young couple replied that they sought help for food assistance four times in 1 year from Hjálparstarf kirkjunnar (Icelandic Church Aid). Seeking this level of assistance from local charities is much more common than heavy weekly reliance, although the disability pensioners still account for 40–50% of the clients of Reykjavík area charities in recent years (Dofradóttir & Jónsdóttir, 2010; Rice, 2007). Such charities are generally used as a last resort measure for particularly tough times, and none of the research participants from this study treated the use of charities as trivial but as something to be avoided as much as possible. Another couple had long been considering seeking such help but struggled about doing so. The commonly articulated view was that one cannot “sink any lower” than being a client of one of the local charities. Intense feelings were often reported in terms of the initial attempt at seeking charitable assistance, as one single mother stated: “The first time I cried...but the second time, it was not so bad”. But she then added: “You probably won't get any lower than me. I mean, I am a single mother on a disability pension”.

Social networks

The sociologist Pierre Bourdieu defines the concept of “social capital” as “the aggregate of the actual or potential resources that are linked to possession of a durable network of more or less institutionalized relationships of mutual acquaintance and recognition”, or, as he simply rephrases this, “in other words, to membership in a group” (Bourdieu, 1986, p. 248). The membership within such a group or network, which could consist of family, extended family, friends, religious and cultural communities and so forth, is critically important in a number of arenas of human life. These forms of social capital can have dramatic material and psycho-social consequences in terms of access to resources and support. In analysing our data, it is obvious the extent to which family support networks are mentioned as playing a key role in subsistence practices. But, it was also apparent in instances where these networks were themselves also fragile or very weak and could be unsupportive and, importantly, where individuals could not fully participate in these networks due to issues relating to finances or disability.

The most commonly cited networks were family, particularly parents, siblings and grandparents. A few cited friends and neighbours they could rely on. But, of course there were limitations to the kind of support that could be marshalled. For example, one young woman mentioned: “In a bad month, I don't know, I would call my dad or something. We don't have financially really strong families, but if they could help us, they probably would”. Another couple described a similar scenario. It is important to note in the following interview extract that one spouse makes a pointed comment that her husband's father is his only family member who could, or perhaps would, offer assistance. Such discussions about networks of assistance were often complicated with discussions of inter-personal and inter-familial issues and problems. As such, it is important to bear in mind that networks are constantly in a state of flux and cannot be assumed to be a source of consistent support:

Interviewer: Can you turn to any family members for help if you need it?

Spouse 1: Usually my father.

Spouse 2: He is the only one.

Spouse 1: Yeah, I mean it's not much, but I can sometimes manage to... I mean he helped out with the car.

Spouse 2: You can sometimes ask him to go to Bónus and buy diapers or something or something small for our kid.

Spouse 1: Yeah, they don't have that much money either, so …

Spouse 2: My mother and father try a lot. I have a grandmother who has money. But you don't go to her. If you are desperate, really desperate, you go to her. Because she is a witch [laughs]. It's as simple as that.

Spouse 1: She is of the old …

Spouse 2: [mimics a desiccated voice] Why aren't you working …

While for the native Icelandic participants the general proximity of support networks often appeared to be assumed to an extent, this was not the case for immigrants. One couple emigrated from an Eastern European nation in search of work in Iceland. Despite their impairments, both were able to find employment until the economic collapse of 2008, which resulted in a lengthy period of unemployment for both of them that was not resolved at the time the interview took place in late 2010. Their ability to tap into reciprocal support networks was hampered by the distance from their family members who resided abroad as well as their dire economic circumstances and their limited social network within Iceland: “We have only friends here. Our families are not here; just the two of us and our kid. Both of our families are in [former home country]”. When asked about remittances from home, one of the couple replied that the intention was that they would be helping family members abroad, and did not consider the possibility that financial remittances might have to flow in the opposite direction:

No, no. It is very hard for them over there. Sometimes my mother pays for things in [former home], things we can't get here that she will send me here. And when I had work, I managed to save some money and send to my mother.

The existence of these support networks depend on reciprocity to varying degrees—to be able to participate within support networks requires a mutual exchange of support, goods and favours—all of which is threatened by economic crises, unemployment, illness and impairment, inflation and eroding incomes. It is questionable to focus on the earned income or simplified ideas of the cost of living of individuals and even households as the comprehensive indicators of one's circumstances. In certain cases, the obligations of reciprocity can further erode the position of disability pensioners. It is a mistake to assume that pensioners are the passive, individual recipients of the benefit system; they are actively engaged in mutual support networks, and their participation in such networks depends on the ability to acquire a small surplus. Although it might not appear to be economically prudent to assist others while struggling with one's own finances, it is a must if future expectations of mutual assistance are to be considered.

Stress, insecurity and depression

The research participants in this study represented a wide range of ages, family statuses, education and training and impairment types. However, issues of mental health were routinely commented on in their narratives, even if mental health issues were not the reason for initially seeking a disability evaluation. Key among these was depression. In some cases, this appeared to be rooted in neurological aetiologies or the consequence of medications for an unrelated condition. However, less clinical forms of depression appeared to be quite commonplace as the result of social and economic factors such as stress and economic uncertainty—all of which were strongly felt by most of the research participants as a consequence of their vulnerable positions.

The stress as the result of economic uncertainties was certainly exacerbated by the situation in which the Icelandic economy and society is currently located. However, these uncertainties were compounded for those who recently lost their jobs, had reduced incomes as the result of illness or impairment or struggled daily to make ends meet with on the pension system. One product of such appears to be that of environmentally related depression. Although the authors of this article are not formally trained in making such assessments in a medical context, it would be negligent to omit the mention of such, considering the extent to which stress and depression formed key narrative themes within these interviews.

In certain contexts, stress, depression and anxiety were referred to in indirect terms. One woman recounted how she was harassed as the result of her neurological impairment in the workplace and which had long-term consequences for her confidence, self-esteem and mental health. A dominant discourse within Icelandic general society as well as within specialists in rehabilitative contexts is that disability pensioners need to be returned to the labour market as soon as possible. More attention needs to be paid to how the labour market itself—both physically and socio-culturally—produces forms of disability, particularly in the context of mental health:

That's the reason I don't tell people [about her condition]. I have been harassed and fired because of that disability. And this gives you a lot of set-backs. I didn't go to find work for many years.

Another research participant explained that his depression was the partly the result of not being able to work due to his acquired impairment: the physicality of the impairment and its pain was of course not irrelevant, but the psychological factors appeared to take on a greater role in his life and become even more disabling than his initial impairment:

I became very depressed at having to stop work at my age. It was a big thing to accept… it's not who you are, it's what you do. I was a manager, and now I am just a disability pensioner. I am like a leech or something on society.

He continued that the combination of physiological and social factors intersects quite strongly in terms of his mental health, all of which are exacerbated by struggling to make ends meet on a meagre disability pension.

Others expressed hope for a return to work within the context of rehabilitation or a labour market that can accommodate their impairments. When asked if a return to her former occupation would be possible with rehabilitation, one participant replied:

I would like that, but I don't think it is advisable for me to do it. Because I need a job with minimal stress but I am going to get back to work, I mean, there is no other option. This is no life.

In certain cases, a sense of helplessness was palpable in the context of significant pain, depression or loss of function that significantly precluded the possibility of a return to the labour market. The opposing forces of social stigmatisation and the economic factors of increasing costs of living in the context of a fixed income and the reduced value of the pension itself produced stresses that appeared at times to be unmanageable.

In consideration of this article's goal of presenting the stories of disability pensioners and their marginalisation and vulnerability, this section will conclude with an interview extract as we feel this individual summarises very well the frustration and despondency felt by many of our interview participants:

My daughter was with me this weekend. When she comes here for those 2 days I spend about the same amount of money that I would spend in a week on food for me. I have been thinking about what I should do. There is really nothing to be done. The only thing you can do really is stop eating. I'm not going to use my credit card or anything like that because I know that I have to pay these things back. The worst thing is to have bill collectors ringing on your door every five minutes, calling you every five minutes. I am not going to do that again. I'm not going to put myself in debt because I need money to live. It's just not right. I know it is kind of stupid to say, but there is really nothing to do but to go on some kind of hunger strike or something.

CONCLUSION

It is apparent from our findings that the labour market left to its own devices will not correct the vulnerable positions facing some disabled people, and the need for governmental intervention should be emphasised. The concept of vulnerability is useful as it can help to consider disabled people who are situated at the margins of poverty and whose complex sociostructural or impairment-related issues can increase the chances of an individual or family falling into poverty and which can in turn make the extraction from poverty much more difficult. Vulnerability draws attention to preventative measures, whereas anti-poverty measures are, in a manner of speaking, implemented after the fact. This is particularly problematic considering the exacerbation of existing impairments as the result of struggling with poverty or the creation of new impairments such as those related to mental health issues.

Many of the factors that produce and reproduce vulnerability are not easily detected with the traditional statistical tools and indicators. The decision to highlight narrative accounts at the expense of statistical data is intentional to analyse these issues from another perspective. However, what came to light as the result of this approach are the creative coping strategies on the part of the research participants. In one context, this evidence works towards challenging the negative stereotypes that disability pensioners are the passive victims of political and economic forces. Many are actively struggling to maintain themselves at the edges of poverty. The further implications of these findings suggest that a closer look at these strategies can help to shed light on the complex factors that can produce vulnerability. But attention to the strategies on the part of vulnerable people taken to maintain themselves can also offer insights into possible ways in which state support programmes, services and policies can be revised to support such actions. It is our contention that there is much to be learned through adopting a more holistic approach to researching poverty, disability and vulnerability than is currently reflected in dominant poverty research paradigms.

ACKNOWLEDGEMENTS

The research project Negotiating Disability in the Welfare State is funded by the Nordic Centre of Excellence: Reassessing the Nordic Welfare Model, REASSESS. The project Poverty and the Social Conditions of Disability Pensioners was a part of the 2010 European Year for Combatting Poverty and Social Exclusion and was funded by a grant from the Icelandic Ministry of Social Affairs and Social Insurance and the Organisation for Disabled in Iceland. We thank our colleagues Kristín Björnsdóttir, Knútur Birgisson and Eiríkur Smith for their valuable contributions to this research.

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About The Authors

Rannveig Traustadóttir
http://notendur.hi.is/rannvt/
University of Iceland
Iceland

Professor
Director Center for Disability Studies
Faculty of Social and Human Sciences

James G. Rice
University of Iceland
Iceland

Post-Doctoral Fellow

University of Iceland

Centre for Disability Studies

Faculty of Social and Human Sciences

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