Understandings of disability are rooted in contexts. Despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.
In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.
In this qualitative constructionist study, data collection focused upon life with a disability and services available to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.
The participants’ main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.
This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.
In the contemporary postcolonial world, the global South and the global North are connected through mechanisms patterned by the ongoing legacies of colonialism (Grech
With respect to disability, it is well accepted that the majority of persons with disabilities (PWDs) live in the global South (World Health Organisation & World Bank
Although the actors attracted to the circumstances of PWDs in the global South are international in the sense of being involved in multiple countries, they are often guided by the world views and priorities of the global North. One example of this would be a disability-focused non-governmental organisation that competes for grant money from national development agencies in the global North to fund programmes that operate in multiple countries of the global South. From the perspective of ‘international’ actors, it is possible to imagine the experiences of disability from diverse cultures and peoples according to a small number of homogenised narratives of disability in the global South (Miles
The dominant expression of a homogenised narrative of disability in the global South might be referred to as ‘the traditional model of disability’. When disability in the global South is viewed through the lens of this traditional model, a myriad of peoples and cultures are seen to understand disability as a supernatural phenomenon initiated by curses, compelling individuals to avoid experiencing shame by hiding or killing their family members with disabilities (Ingstad
The alternative to the perpetuation of homogenising narratives about disability in the global South is the accounting of experiences and perspectives of PWDs that are grounded in the specific contexts in which they are expressed. Through these accounts, it is possible to understand disability in diverse and specific ways. One way to surface these experiences and perspectives is to focus on the practical concerns voiced by PWDs in specific contexts. Although contextually grounded research about meanings of disability has been produced in other areas of the global South (see Brégain
The study team comprised a PhD student and his advisory team. The PhD student and first author is a researcher and rehabilitation professional from Canada. The advisory team, senior academics, comprised three rehabilitation researchers working at Canadian universities, two with Canadian backgrounds and one originating from Brazil. The fourth member was an anthropologist based at a research institution in Zambia with a British background. The study activities were supported through the work of five paid research assistants, based in Zambia, who were post-secondary students from Western Province.
The study was guided by a qualitative constructionist methodology (Silverman
The research fieldwork was conducted in Zambia’s Western Province between March and August 2014. The study team purposively recruited two organisations of PWDs (one urban and one rural) and their members to participate in this research. The decision was made to sample organisations rather than individuals alone to gain insight into disability organising and to allow for a more indigenous view of disability by relying on pre-existing structures. According to the preamble of the Zambian (
To identify these organisations, contacts from local government offices shared connections with one organisation in a peri-urban neighbourhood of Mongu (urban) and another in a series of villages in an outlying district (rural). Contact for each of these organisations began with a request for a meeting with the leadership to discuss the organisation’s potential participation in the research. In both cases, the leaders agreed that participation was in the interest of the collective. We then approached members individually to discuss the research objectives and design and their individual participation. The original intent was to approach all the organisations’ members, but this strategy was revised for the rural organisation – to a combination of convenience and purposive sampling – when it became clear that the membership was larger than originally anticipated (Cleaver et al.
Two organisations and a total of 81 individual members participated in the study. Twenty-two of the participants were members of the urban organisation (see
Participant demographics.
Variable | Urban group ( |
Rural group ( |
---|---|---|
Women and girls | 11 | 24 |
Men and boys | 11 | 35 |
18 years and under | 6 | 9 |
19–64 years | 11 | 14 |
65 years and over | 5 | 24 |
Undeclared age | - | 12 |
Physical | 12 | 33 |
Visual | 2 | 10 |
Intellectual | 5 | 3 |
Hearing | 3 | 2 |
Seizures | - | 1 |
Communication | - | 1 |
, The urban organisation used its own system to categorise its membership; the members of the rural organisation described their disabilities in their own words, which we then used to create categories.
, The sum total of impairment types in the rural organisation does not add up to 59: eight participants described themselves according to two impairment types of equal significance. Meanwhile, six participants described themselves as ‘elderly’ and 11 described themselves to be family members.
Fifty-nine participants were involved with the rural organisation (see
For each organisation, data were collected from an initial round of focus group discussions, followed by semi-structured individual interviews with many of the organisation members, and then a second round of focus group discussions (see
Data collection activities.
Variable | Urban group ( |
Rural group (n = 59) |
---|---|---|
Round 1 focus group discussions (FGDs) | 1 FGD – 18 participants |
4 FGDs: |
Interviews | 20 individual interviews with 22 participants |
19 individual interviews |
Round 2 FGDs | 2 FGDs: |
1 FGD – 7 participants |
, We conducted this FGD with a larger number of participants than we had originally planned. Disability leaders in Western Province had advised us that organisations of PWDs most typically have 10 members. With a membership of this size, we would be able to observe the organisation’s group dynamics through an activity that would be similar to their regular meetings and also the suggested size of an FGD (Maynard-Tucker
, According to the initial plans, all members of the purposively selected organisations should have been given the opportunity to participate. With its unexpectedly large membership, the rural group was subdivided according to four areas of residence for the first focus group discussion; each person participated in only one FGD, up to the capacity of the venue, while the nine leaders were spread among the four FGDs.
, In two cases, there were two family member participants who agreed to be interviewed together. For this reason, there were 20 interviews but 22 participants who completed an interview.
, The 19 interviews were conducted with nine group leaders and 10 participants purposively selected based on their participation in the round 1 FGD.
, Because of crowding in the round 1 FGD, it was decided together with members during a community meeting that the round 2 would be more comfortable if the participants were divided into two groups.
, The round 2 FGD in the rural group was only conducted with the leaders of the group. Seven of the nine leaders participated.
The first author led these activities speaking in English, while participants communicated in the language of their choice, and a research assistant performed real-time translation where necessary. Most participants opted to communicate primarily in the regionally dominant language of Silozi, although some participants chose English (verbal and written), Sign Language, or the less-common local languages Chimbunda and Makoma. All data collection activities were audio-recorded with the participants’ permission. Research assistant team members transcribed all speech in the actual languages spoken using a comprehensive transcription guide developed by the team.
Data analysis began with a detailed review of all transcripts while listening to the audio files. The detailed review was used to guide an iterative analytic process, where initial ideas were used to generate subsequent questions of the data. Queries and answers generated during the iterative analytic process were transformed into visual schema and written documents to further organise ideas and eventually distil the themes presented in this article. Visual schema and written documents were used to generate further discussion and reflection as part of a process to gradually refine the analysis.
This study was approved by the University of Toronto Health Sciences Research Ethics Board Protocol reference #: 29653), the University of Zambia Humanities and Social Sciences Research Ethics Committee, and the Zambian Ministry of Health. To reduce the burden of participation, participants’ travel costs were paid when there was motorised transportation available for hire, and a group meal was provided for large meetings and focus group discussions. Participating individuals and organisations are identified in this article in general terms to allow the reader to understand their situation without revealing the identity of the participants. In conducting the research, we followed critical (Eakin et al.
The objective of this inquiry was to explore the expressed concerns of two organisations of PWDs and their members. The analysis of data collected during study activities showed that the accounts expressed by the participants were dominated by a single concern: poverty. Participants spoke about poverty in a particular way through the interconnected phenomena of
Participants in this research spoke frequently and emphatically about their suffering as part of a life with disability, and about their need for material resources. Effectively, these two ideas were interrelated, such that the lack of one was the cause of the other. As stated by an older woman with leprosy:
‘Since my disability has found me, there has been no one to build me a house, there is no one to find me food, there is nothing. Who will help me with this suffering?’
(Participant #R028, female, age described as ‘elderly’)
The reverse was also true: if a person received material resources, it would improve their situation and alleviate suffering. As stated by a man with a physical disability:
‘Like for me the way I feel, if I find someone giving me money, I will see that I have been helped and then they can improve my life.’ (U001, male, 32 years old)
The interrelationship between the two concepts of this particular understanding of poverty can be conceptualised as two sides of the same coin, where the sides are fused together, such that both are present even if only one is apparent at any given moment. In a similar fashion, the participants’ accounts of
Poverty conceptualised as a two-sided coin.
Participants overwhelmingly described the experience of their disability negatively, often using the Silozi terms
Participants generally did not describe what was meant by
‘You cannot sleep all the night; you are there thinking about your suffering.’ (R005, female, 69 years old)
Another participant, a man with a visual impairment, stated:
‘Our disability, it is just suffering. We have a lot that is in the heart.’ (U002, male, elderly)
It seemed almost as if the meaning of
‘It is disability that brings that suffering; when someone is not disabled, the person cannot suffer.’
The other prominent theme in the data was a
Material resources that participants stated they did not have and/or needed.
Resource | Need identified |
---|---|
Tangible items | Food rations |
Hair dryers | |
Sewing machines | |
Fertiliser | |
Fishing supplies | |
Goods for resale | |
Mill (the machine) | |
Certificates of recognition | |
Food and drink for visitors | |
Housing | |
Services and expenses that could be covered if they were granted money | School expenses |
Tap costs | |
Investment in a business | |
Human resources to pay wages for: Firewood collection Cultivation Fishing assistance |
Participants spoke about
One example of an account celebrating previous material resource distributions came from a man with leprosy. He described, in detail, the story of a foreign missionary who had formerly lived in his community, but had collected money in his country of origin to provide various support. As part of this account, he stated that:
‘In each place [
When discussing material resources – the lack thereof, the need for more or previous distributions – participants often related these to
‘I wanted to talk on the problems people with disabilities face here. It is very hard, because here you cannot find money so that you survive.’ (R130, male, 32 years old)
In a different focus group discussion in the rural community, in response to the question ‘Is there anyone else who has something to add on what it is like to live with disability here?’, one man shouted the reply:
‘It is suffering because you cannot work so that you find food for you to eat.’ (R015, male, 50 years old)
Some material resources were presented as items the participants needed for their own personal use, such as better housing or food rations (i.e. bags of flour for the staple meal). As stated in a focus group discussion:
‘For me the only problem is my eyes. But I need someone to help me. There is no one to build a house, so what I want is just help from you. And you give me food.’ (R127, male, elderly)
In other cases, the reference to the resource was with respect to the utility of material resources for earning more income. When asked about the positives of having a disability in a focus group discussion, a woman with a physical disability that limited her capacity to walk said:
‘I am even talented on hair styling. I am a hair stylist. I can plait any type of a style for hair any type that a person wants. I can do it, but I do not have money to start my own salon.’ (U010, female, 26 years old)
For this woman, having a salon meant renting a market stall and purchasing some hand-held hair dryers – modest investments, but ones that required more money than she could access.
Occasionally, participants were ambiguous as to whether the resources would be used for personal use or as income generation. Examples included needing money to pay an individual to collect firewood, to cultivate a garden or to assist with fishing. This is exemplified by a participant with a visual impairment, stating:
‘[
Participants presented the concern of poverty as inherent in their experience of disability. During initial interactions, participants generally identified their disability in very similar terms to the specific embodied state of having an impairment (World Health Organisation
In some of the participants’ accounts, the link between impairment-related functional limitations, a lack of material resources and a life of suffering was described as a series of causal steps. Often, the situation involved only one step, where an individual’s impairment reduced employment opportunities or the ability to farm for food or income. As stated by a man with difficulties walking and speaking:
‘We are really living in poverty. Like the others have said, when there is work, we people who are disabled cannot do it. Even when you try to go there, they will tell you, “You, you cannot do it.” And that is really the truth, that you really cannot.’ (R015, male, 50 years old)
Another participant spoke about how his inability to walk limited the activities that he could do and the compensation he could earn from these activities when clients chose to not pay:
‘Like for me I cannot say “I can go and cultivate, I can go and fetch water,” or “I can go and do this.” Because even this thing in which I am seated, I need to find someone push it. But God has given me the knowledge of how to repair shoes. But again, if a request a certain price to say, “maybe I can manage to buy a cup of flour or something, so that I feed myself,” they refuse also. Now them, they want to be able to choose how much to give me. Because they know that I have no option, there is no way I can refuse their money, and that “I can give him this money” because they know I am disabled I have no option, I just have to accept the amount.’ (R009, male, 59 years old)
In some cases, it was the impairments of children who kept the parents at home. These limited opportunities to acquire or generate resources are thus the primary and direct explanations that underlie the participants’ lives of suffering. The mother of an 11-year-old girl considered to have an intellectual disability by the organisation gave an example of this when she expressed (U009):
‘I cannot do a business which will need me to walk or travel to go very far, leaving her. I cannot leave her.’
Participants spoke of how an infusion of material resources could offer an alternative path to success without requiring any change to their own specific impairment, or the impairment of their family member. For example, a gift of a sewing machine would allow income generation in the home so that the mother quoted above could simultaneously care for her child with a disability while earning money to eliminate suffering, thereby overcoming the problems of poverty.
Another example of this phenomenon came from a woman with a physical disability limiting the use of her hands. This woman spoke about how she had previously purchased fish and then travelled with it elsewhere in the country to re-sell it at a profit. As she had used the money to pay for school fees for a child, she no longer had the money to generate income. Nonetheless, the participant was confident that her fortunes would change with monetary support to travel to the flood plains for the purpose of buying fish:
‘Right now I do not have the money; if I did I would have gone even a long time ago.’ (U006, female, 39 years old)
In other cases, there were multiple steps separating the participants’ current situation of poverty from their aspirations. An example of this was the one woman with a physical disability who was hoping to find money to buy hair dryers and open a salon. According to the woman, her difficulties walking reduced her income generating capacity, which, in turn, inhibited her from being able to amass capital to start a business which would provide further income to pay for a return to school to study to be a professional. The woman’s account of her current situation was one of stagnation and struggle, working as a hairdresser for salon owners for little money to provide basic needs for her son. By contrast, a positive cycle could have been activated through loans or grants of money or materials that would have allowed her to start the business.
In many accounts, the relationship between a lack of material resources and suffering was not a series of connected steps, but one where disability was integrally understood to apply to individuals who identified as having an impairment while living the two-sided coin of poverty. When invoking this pattern, participants spoke about poverty and disability interchangeably, as if they were using two synonymous words to describe a single phenomenon.
One example of this phenomenon occurred during a focus group discussion. The participants were speaking about the suffering experienced by PWDs. One man with a physical disability added:
‘What I have seen in life is if you are disabled but you are working, you are doing a business, people will respect you for that. For you who does not have anything and you are disabled, you are poor. No one can respect you, even the family members cannot respect.’ (U003, male, 68 years old)
From the quote above, it might seem that disability and poverty could be teased apart such that a person with a disability
Instead of following the first author’s question of comparing the experience of business ownership and wealth among persons with and without disabilities, the participant responded with a different comparison: the poor and disabled as compared to the rich and non-disabled. Although it seemed possible to isolate comparisons of wealth (regardless of disability) or disability (regardless of wealth), additional discussion demonstrated that these notions were expressed and understood in nearly interchangeable terms.
In the account of another participant with a physical disability, wealth and function were also bundled and contrasted to poverty and dysfunction. Following the participant’s self-identification as
‘Ah, on that way I was going to be grateful because maybe this mocking is coming because of what I have or what I do not have because of being poor. But if they see me that, ‘that person this time has got this; he is able to do this,’ they will give me respect.’ (U005, male, 41 years old)
Given the man’s situation of impairment-poverty, he considered the organisation of PWDs to provide him with a ‘very big help’. This caused us to wonder about the strategies used by this man’s neighbours, who from casual observation seemed to be equally poor, but likely did not claim to be disabled. From the perspective of this man, the situation of persons without disabilities was not one that interested him:
As is seen from these examples, it was as if it was only PWDs who could be poor. Meanwhile, as demonstrated with the data above, being rich (i.e. doing a business, having things) was the categorical opposite of being disabled. In parallel, the possibility of poverty among people without disabilities was not a phenomenon of interest for the participants. When participants spoke about poverty as being integrally part of disability, it seemed taken for granted that the coexistence of needs and the inability to meet them were the defining elements of being a person with a disability. The proposed solutions were therefore gifts of material resources to directly meet their needs.
This study is the first to explore disability through a contextually grounded investigation in Western Zambia. We asked PWDs in this context about their lives with disabilities (including positive and the negative aspects thereof) and the specific activities, services and initiatives that were available in the communities where they lived. In response, a wide variety of participants from both organisations referred to living a life of suffering and of having a lack of material resources. Taken together, these references can be conceptualised as poverty. The frequency and emphasis of the participants’ concerns, and the ways in which these were linked to disability, demonstrate the centrality of poverty in the collective meaning of disability in this context. This study offers a rare perspective of disability in Western Zambia, but also has important implications for the literature on disability theory and the relation of disability and poverty, in addition to implications for policy and practice.
The participants’ concern for poverty could have been consistent with any one of multiple models of disability, particularly the charity and medical models (Clare
In comparing the findings of this study to literature about disability in the global South, it is remarkable that participants’ concerns
This study was designed to be exploratory such that the concerns of the participants could emerge, regardless of what those might be; while we anticipated at the outset of the study that concerns aligned with the ‘traditional model’ might be prominent, we did not foresee the centrality of poverty. Through data analysis, it became clear that these participants spoke about poverty in various ways. These patterns provide insight about how the participants might understand poverty and its relationship to disability. Issues of disability and poverty have garnered increased attention in recent years through specific attention in the United Nations (
Much research on disability and poverty has taken a turn away from an economic resources approach (Palmer
As it was not a focus of this study to quantify indicators of poverty, we did not attempt to accurately compare the individual or household situations of research participants with each other or persons without disabilities. However, from our informal observations in the community, it appeared that most community members (with and without disabilities) were of similarly poor economic status. Indeed, in a Zambia-wide study that did compare individuals and households with and without disabilities, the overall findings were that household wealth was similar, although there were important differences with respect to education and employment levels, with poorer access for PWDs (Eide & Loeb
Most commonly, disability and poverty have been presented as a
Typical and alternative presentations of the relationship of disability and poverty.
It must be noted that many of the participants did not articulate the narrative that their impairment-related function initiated their situation of poverty; instead, impairments were part of the description of disability, but only coincidentally part of the experience. Meanwhile, poverty was
Furthermore, a
In the results of this study, poverty was more prominent in the accounts than impairment and function, and also more prominent than other possible considerations. The implication for policy and practice is to mainstream the concern of poverty into disability activities.
One specific example of the way that poverty could be mainstreamed into disability activities is to compare these perspectives to a prominent template for programming for PWDs: The community-based rehabilitation (CBR) matrix (Khasnabis & Motsch
Meanwhile, the participants’ references to other components of the CBR matrix were generally subservient to livelihood considerations. An example of this is health. Concerns related to the health component of the CBR matrix were rarely brought forward by participants. When participants were asked questions related to the health component elements of disease prevention, medical care and rehabilitation, the participants responded with general disinterest, even when acknowledging that these services were not available to them.
We conducted this study in a particular context. In qualitative constructionist research, context is not seen as a source of bias that interferes with the accuracy of research results and must therefore be eliminated (Silverman
In some ways, this particular context constrained possibilities for the project. Examples of possibilities constrained by researcher–participant positionality in this project included the difficulties of fulfilling principles of authentic partnership and shared benefits (‘author’ et al. 2016), both of which are important participatory research considerations (Herr & Anderson
The study’s particular context does not mean that the participants’ concern for poverty was an artefact produced only in the presence of the first author: the consistent, persistent and detailed accounts of disability experienced as suffering and material resource deprivation made for a very compelling concern. Moreover, there is evidence to suggest that the two organisations – each of which had a history pre-dating the arrival of the first author – evolved according to the availability of outside programming, especially programming related to material resource acquisition (Cleaver et al.
Also, this was a context where the research participation was limited to those who were members of organisations. The focus on collectives meant that it was not possible to explore the first-hand experiences of PWDs in Western Province who were not attached to an organisation, which would, in turn, exclude the participation of any PWDs who were being socially isolated by family members at the time. Recognising that ‘international actors’ engaged in disability activities in the global South have come to expect accounts of stigma, shame and the isolation of PWDs, we are compelled to declare that this study was not designed to seek out such cases, if they exist.
A final consideration of the particular context of this study is the analytic impact of approaching organisations as participants. In part, it was because of the collective orientation that the analysis focused initially on the commonalities within and between the organisations, rather than searching for contrasts between the collectives or individual members. The analysis of these data has not included potentially important differences within the groups, such as that of gender, age, wealth, social status or ‘disability type’. Considering that the experiences of PWDs are not homogenous (Miles
The members of two organisations of PWDs in Western Zambia who participated in this constructionist research expressed overwhelming concern with poverty. This concern was expressed through the interrelated phenomena of a life of suffering and a lack of material resources (i.e. money or things that could be exchanged for money). These findings contribute to the growing interest in poverty and disability through the articulation of contextually grounded formulations of the ways in which these phenomena are conceived and the identification of associated policy and practice implications. Finally, it was notable that the concerns of these PWDs in Western Zambia were incongruent with the notion that understandings of disability in the global South are dominated by ‘the traditional model of disability’.
Shaun Cleaver was supported by a Canadian Institutes of Health Research (CIHR) Fellowship and a W. Garfield Weston Doctoral Fellowship. Stephanie Nixon was supported by a CIHR New Investigator Award. In addition, the authors are extremely grateful for important assistance from colleagues at the Zambia Federation of Disability Organisations (ZAFOD) and the Western Province offices of the Government of Zambia’s Department of Social Welfare. Fieldwork activities were made possible through the contributions of Patrah Kapolesa, Malambo Lastford, Akufuna Nalikena, Chibinda Kashela and Aongola Mwangala as research assistants.
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
S.C. was the first author and PhD student conducting the research. H.P., V.B., L.M and S.N. were dissertation committee members who advised the development of the research, its conduct, data analysis and the writing of this manuscript.
To some, the conceptualisation of a global South inappropriately homogenises much of the world and reifies the dominance of high-income countries. We recognise this critique. Nonetheless, we find analytic value in considering how the legacy of colonialism has had similar effects in different places. Following the work of others writing in the field of postcolonial disability studies (e.g. Shaun Grech and Karen Soldatic), we see the commonalities of this legacy in multiple locations in the global South.