Figures
Abstract
Globally, millions of people lack access to improved water, sanitation and hygiene (WASH). Disabled people, disadvantaged both physically and socially, are likely to be among those facing the greatest inequities in WASH access. This study explores the WASH priorities of disabled people and uses the social model of disability and the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework to look at the relationships between impairments, contextual factors and barriers to WASH access. 36 disabled people and 15 carers from urban and rural Malawi were purposively selected through key informants. The study employed a range of qualitative methods including interviews, emotion mapping, free-listing of priorities, ranking, photo voice, observation and WASH demonstrations. A thematic analysis was conducted using nVivo 10. WASH access affected all participants and comprised almost a third of the challenges of daily living identified by disabled people. Participants reported 50 barriers which related to water and sanitation access, personal and hand hygiene, social attitudes and participation in WASH programs. No two individuals reported facing the same set of barriers. This study found that being female, being from an urban area and having limited wealth and education were likely to increase the number and intensity of the barriers faced by an individual. The social model proved useful for classifying the majority of barriers. However, this model was weaker when applied to individuals who were more seriously disabled by their body function. This study found that body function limitations such as incontinence, pain and an inability to communicate WASH needs are in and of themselves significant barriers to adequate WASH access. Understanding these access barriers is important for the WASH sector at a time when there is a global push for equitable access.
Citation: White S, Kuper H, Itimu-Phiri A, Holm R, Biran A (2016) A Qualitative Study of Barriers to Accessing Water, Sanitation and Hygiene for Disabled People in Malawi. PLoS ONE 11(5): e0155043. https://doi.org/10.1371/journal.pone.0155043
Editor: Stefano Federici, University of Perugia, ITALY
Received: November 11, 2015; Accepted: April 22, 2016; Published: May 12, 2016
Copyright: © 2016 White et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: All relevant data are within the paper and can be found on Figshare at the following link: https://figshare.com/s/b3f5f93b007df690e119.
Funding: This research has been funded by Australian Aid (Australian Government Department of Foreign Affairs and Trade)) through the Australian Development Research Awards Scheme under an award entitled ‘Disability and its impact on safe hygiene and sanitation' (Grant number 66469). The views expressed in this publication are those of the authors and not necessarily those of the Commonwealth of Australia. The Commonwealth of Australia accepts no responsibility for any loss, damage or injury resulting from reliance on any of the information or views contained in this publication. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
Introduction
The Sustainable Development Goals (SDGs) aim to provide access to improved sanitation and improved water sources to all by 2030 [1]. This will require services to be delivered to the hardest to reach, the poorest and those whose water, sanitation and hygiene (WASH) needs are currently not addressed by mainstream programming. Disabled people are reported to be at increased risk of having inadequate access to WASH facilities [2, 3]. The World Disability Report estimates that 15% of the world’s population are disabled [3]. Consequently, the new SDG will not be met unless access to WASH is improved for disabled people.
Both disability and WASH access are related to poverty. It is estimated that 80% of disabled people live in the developing world, [4] and in the poorest quintiles of low-income-country populations as many as 1 in 5 individuals are disabled [4]. Although the definition of ‘disabled’ used here is unclear, the higher prevalence of disability in low-income settings can be accounted for in three ways. Firstly there are inadequate health care and rehabilitative services in these countries. Secondly, the incidence of impairment may be higher due to unsafe environments and prevalent infectious diseases. Lastly, there are greater environmental and social barriers which result in individuals being more disabled by their impairments. Households in the poorest wealth quintile are also 5.5 times more likely to lack access to an improved water source and 3.3 times more likely to lack adequate sanitation compared with the highest wealth quintile in the same country [5–7].
The term ‘disability’ is defined and used in different ways reflecting differences in theoretical perspective. Throughout this paper the term ‘impairment’ is used to denote a loss or limitation in physiological or cognitive function (e.g. visual or hearing impairment, or impairment of mental functions). The terms ‘disabled person’ or ‘disability’ are used to denote a reduction in the ability of an individual to perform activities or participate fully in society (e.g. take part in employment). The discussion of disability and WASH has been informed by the social model of disability which views disabled people as an oppressed group who have “disability imposed on them” by society through exclusion and limitations on an individual’s opportunity to participate [8]. The social model arose in opposition to the medical model of disability which conceptualised disability as a consequence of an individual’s impairment and proposed medical interventions as the primary means to address this [9]. An alternative way of understanding disability has been put forward in the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) framework [10]. The ICF framework aims to synthesise elements of the social and medical models, recognising disability as a complex phenomenon requiring interventions that operate at different levels, ranging from the medical to the socio-political [11]. While the social model sees disablement as a consequence of external factors in the environment, the ICF model views it as the consequence of an individual’s personal characteristics, such as body function, their social and demographic characteristics and characteristics of their social and physical environment, and as such is a bio-psycho-social model of disability.
Following the social model of disability the barriers disabled people face in accessing WASH have been categorised into three qualitatively distinct types [4, 12–17]. Physical barriers comprise environmental factors such as uneven terrain or muddy ground, as well as barriers associated with built infrastructure, such as steps or inappropriate pump handles. Institutional barriers include policies and institutions within the WASH sector that overlook the needs of disabled people or prevent their participation in the design and delivery of WASH programmes [12]. Lastly, social barriers arise through interaction with other people and result from cultural beliefs or practices. Social barriers may include beliefs that disability is due to a curse, and consequently that disabled people should be kept away from WASH facilities. They may also include overprotective parental attitudes preventing a disabled child from fully participating in community life. This taxonomy of barrier types suggests the challenges disabled people face when accessing WASH are largely due to factors in the external environment. The ICF framework, consistent with its incorporation of perspectives from the medical model, recognises the role of factors that are intrinsic to an individual with impairment.
Purpose of study
Planning for and addressing the needs of disabled people within WASH programmes will be better achieved if based on a sound understanding of the needs and priorities of disabled people, the barriers they face and their coping strategies. The primary objective of this study was to understand barriers faced by disabled people in Malawi, across a range of WASH practices and to explore how these vary with differences in impairment, setting, gender and socio-economic status. The study also explored the extent to which WASH access is regarded as a problem by disabled people.
Methods
Study site
The study took place in 10 Traditional Authorities (TAs) and townships in Malawi (See Table 1). These were purposively selected from across the Northern, Central and Southern regions. Data collection was done through local languages and with the support of three field assistants from the Federation for Disabled People in Malawi (all of them disabled people). Data collection took place between July and October 2014.
Sample and recruitment
A sample of 36 disabled individuals and 15 caregivers (each caring for one of the 36 disabled individuals) was recruited. Respondents were purposively sampled to reflect a range of impairments as well as variety in location and socio-demographic characteristics. The sample was not intended to be statistically representative. Respondents in each TA were identified through a two-step process beginning with consultation of ‘key informants’ who included village chiefs, representatives of Disabled Persons Organisations (DPOs), local social welfare officers and other service providers. Following the Washington Group short list of screening questions [18], key informants were asked to identify individuals in their community who they thought would experience ‘some difficulty’, ‘a lot of difficulty’ or be ‘unable to do’ any of six specified activities: seeing, hearing, walking, remembering/understanding, communicating and self-care. Lists of up to 20 names, along with descriptions of each individual’s impairment type, were generated by key informants in each region. Based on these lists the research team purposively selected participants based on impairment type, gender, age and geographical location. The second step in the process involved the research team confirming the eligibility (determined by having at least ‘some difficulty’ in doing at least one of the six activities) of each of the purposively selected participants using the same short set of questions with the participant and/or the caregiver.
Data collection
The study employed a range of participatory and qualitative methods. These are described in Table 2. These methods drew on tools developed by the Water, Engineering and Development Centre (WEDC) at Loughborough University[19], WaterAid, The Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the Leonard Cheshire Disability and Inclusive Development Centre (LCDIDC) at University College London. All research tools are available at: http://ehg.lshtm.ac.uk/wash-disability.
Data management and analysis
In-depth interviews were audio recorded, translated, transcribed and then thematically analysed by the lead author with the aid of nVivo 10, following a six-step analysis process [20]. Data were also captured via photographs and video. Footage from video observations and WASH demonstrations were annotated and coded with other data. Responses generated from the free listing and ranking of challenges were entered into a spreadsheet and coded together with interview transcriptions. The same was done for Photovoice rankings. Data were anonymised and categorised by respondent gender, age, geographical location, employment status and impairment. Coding was done through a deductive, ‘top down’ analysis [21] based on the study objectives. This included coding of responses by barrier types, priorities and type of WASH activity. Emergent themes were identified across the entire dataset and refined. Quotes were selected to illustrate themes.
Ethics approval and consent
This study received ethical approval from the London School of Hygiene & Tropical Medicine and the Republic of Malawi National Committee of Research in the Social Sciences and Humanities. Participation was on the basis of informed, written consent (or use of a thumb mark in the case of illiteracy). Guardians provided consent for individuals under 18. Three participants with intellectual impairments were unable to give independent consent. In these cases consent was obtained from their primary caregiver. Wherever possible, interviews with caregivers or disabled participants were done separately and in private in the participant’s home.
Results
Characteristics of sample
The sample (described in Table 3) was 55% male. Participants ranged in age from 8 to 87 years (median age: 37.5). Participants were predominantly unemployed or in informal work (58%). Of 5 school-aged participants only 1 attended school. Of the 15 caregivers, 14 were women and all were family members, the majority being mothers or grandmothers of disabled children. Carers were interviewed if they played a role in aiding WASH access. In the majority of cases this was found to be with participants who had intellectual impairments and profound physical impairments.
Prioritisation of WASH challenges
A sub-sample of six respondents with physical or sensory impairments and three carers of individuals with intellectual impairments free-listed and ranked the biggest challenges they faced in daily living. A further five respondents with physical or sensory impairments identified and ranked their biggest challenges using Photovoice. A total of 65 challenges of daily living were generated by the disabled respondents and 16 challenges were generated by the three caregivers.
Two of the disabled respondents did not list any WASH related activities. Both had previously found bathing and toileting to be such a profound challenge that they had invested in adaptations to overcome these barriers. They explained:
“Where I used to live these things were very difficult for me. So now that we have our own house I made sure that there was a nice toilet like this and piped water. But I know for most people like me it’s unaffordable.”
(Woman, 24, blind, urban)
“It made me feel sad and angry that I lost independence to even do these simple things…That’s why I purposely designed it as you can see to suit my needs for bathing and toileting, these were the first things I learnt to do on my own again.”
(Man 45, partial paralysis, rural)
These individuals were well educated and relatively wealthy compared with other study participants. These factors are likely to have enabled them to adapt their environment to their needs.
All of the remaining disabled respondents reported at least one WASH access challenge. Seven individuals ranked at least one WASH related activity within the three biggest challenges they faced in daily living and one reported that all of their top three challenges were WASH related. Water access was the most commonly reported challenge among disabled respondents (Table 4). These challenges included difficulties accessing stored water for drinking, bathing and handwashing, as well as barriers to collecting water.
After ranking their free-listed challenges, all respondents were asked specifically for any other WASH related challenges they faced. Five individuals added issues relating to toileting and/or bathing to their list and in most cases chose to insert them fairly high up in their ranking order. Among WASH challenges, toileting was generally ranked as a high priority on individual lists.
When disabled respondents were asked why WASH-related challenges ranked high on their lists. They explained that it was because limited WASH access:
i) led to increased health risks,
“I am very sad when it comes to the way I use the toilet because I can catch infectious diseases in these places, it has implications on my health.”
(Man, 46, double amputee. Peri-urban.)
“The toilet problem is a serious problem because if I open bowels or suffer from diarrhoea, I defecate where I am and they clean me…it becomes a health problem to other people around me.”
(Woman, 78, arthritis and spinal curvature. Peri-urban.)
Ii) increased dependency
“It makes me feel sad and angry that I have lost independence to even do these simple things.”
(Man, 46, amputee. Peri-urbanl.)
and iii) had negative consequences for their self-image.
“Let’s say within the night I have seizures but there is limited water. That means I cannot wash my body and clothes properly so this is a major challenge. It means there are a number of people who you can tell have epilepsy because of how they smell….It’s a tough moment for me.”
(Man 27, Epilepsy. Urban.)
“The way I get water and use the toilet makes me feel different.”
(Woman, 20, partial paralysis. Rural.)
Table 4 shows the number of respondents reporting each type of challenge, while Table 5 shows the number of caregivers reporting each type of challenge. The daily living challenges identified by respondents were grouped into 18 categories by the lead author.
For caregivers of people with intellectual impairments the availability of sufficient soap and sufficient clothes emerged as important concerns. These challenges were not reported by disabled respondents. For two of the three caregivers WASH issues comprised all of their top three challenges of daily living. None reported that the person they cared for had problems accessing water, but access to sufficient quantities of water was seen as a problem for the family in relation to increased bathing needs. Carers explained that these issues ranked high among their priorities because they took up a substantial amount of their time, had a physical and psychological impact on household members and presented challenges for long term care.
“These things are very important because this child needs to be clean and well taken care of all the time, most of my attention goes into bathing him.”
(Carer of a boy, 8, with cerebral palsy. Rural.)
“It takes a lot of effort from all of us. For every 5 buckets of water, we would use three or four on bathing her and we have to carry her to the bathroom, it’s a strain now because she is heavy.”
(Carer of a girl, 14, with intellectual impairment. Rural.)
“It hurts me a lot…it’s kind of psychological because other children of that age can clean themselves and bath themselves but for him I think I will probably have to help him do that for the rest of his life.”
(Carer of a boy, 13, with intellectual impairment. Peri-urban.)
The three respondents who participated in the emotion mapping exercise each reported that they were unhappy in some of the WASH environments at their home. The first participant, a young man with an intellectual impairment, was unhappy in the toilet. He explained that he found it difficult to squat down in the toilet. His carer was surprised to hear about his unhappiness, explaining that “I did not know about this issue until now, but I think now I will try and make a seat for him.” Later in the interview the participant explained that sometimes he didn’t like bathing either but was often forced to by his carer. The second participant, a young boy with a physical impairment, explained that although he felt happy when he was pumping water he hardly ever went to the water point because it was difficult for him to get to. He also reported being unhappy in the toilet and the bathroom because they were smelly places and they made him feel embarrassed because he had to use them differently. The last respondent, a girl with an intellectual impairment, reported that the tap near her house was an unhappy place because it was hard for her to turn it on. The other environments (bedroom, living room, kitchen and outside space) were reported to be happy places.
Categorisation of WASH access Barriers
Reported and observed barriers were categorised by the lead author using the physical, social and institutional categories [4, 12–16] and disaggregated by the nature of the respondent’s impairment (Table 6). No two individuals in this study faced the same set of barriers. The barrier classification presented is subjective and barriers often fitted more than one category. For example people with intellectual impairments were often excluded from community events on the assumption that they could not understand or contribute to them or would disturb the process. This barrier was classified as institutional because it is something that implementers of WASH programs may enable rather than actively challenge but is also a social barrier maintained by societal attitudes and values.
Some of the barriers identified did not fit into the categories which were based on a social model of disability. Many such barriers occurred as a direct result of the individual’s impairment and are described in Table 6 as ‘barriers associated with body function’. All of the institutional barriers mentioned by participants related to community-level participation. No participants referred to barriers relating to higher-level policies, systems or institutions.
Urban / rural differences
The way in which water and sanitation are provided can vary between urban and rural contexts with implications for the barriers faced by disabled people. For rural respondents piped water was not available. One rural respondent used an unimproved water source near their home but most relied on communal handpumps. These had minimal usage costs but were rarely close to the house. Thus physical barriers associated with distance and the need to carry water emerged as important concerns for disabled people in rural areas. In urban areas piped water was available for those with the ability to pay. Respondents with piped water reported no barriers to water access. Most urban respondents without piped water were reliant on water purchased from kiosks which were perceived by disabled people to be too far from their houses (based on observations and anecdotal evidence these were generally within 500m). As a result they faced barriers associated with distance to the water point as well as physical barriers associated with the design of the kiosks (poor drainage, types of taps, steps and rims). Several respondents reported this led to a double financial burden which made them compromise on quantity of use.
“In my community there are kiosks where they sell water, so like the way I am, using a wheelchair, I can’t take a bucket to buy water … I pay twice, once for the water itself and once for the one carrying water for me.”
(Woman 35, paralysis. Urban)
Those who could not afford to use kiosks relied on unimproved water sources such as rivers and shallow, hand-dug wells. These participants were more concerned by the consequences for their safety and health. One example of this was a household with a boy of 14 who had an intellectual impairment. The boy was incontinent and required family members to wash him and his clothes regularly. The amount of water and soap they required as a household was much greater than neighbouring families. Consequently the family was unable to afford their piped water bills and had to make water and hygiene compromises.
“Normally we all have diarrhoea at least twice a week…It’s because we drink the water straight from the river. We used to have piped water to a tap near the house and when we were using that water we didn’t have diarrhoea as much…it’s hard because in town if you don’t pay for piped water then you have to get water from the river, there are no water pumps where you can get water for free like in other places. It’s really not healthy to drink out of the river. Just today there was a dead dog upstream.”
(Caregiver of a boy, 14 with an intellectual impairment. Peri-urban)
A comparison of observations in rural and urban settings revealed that sanitation access and use was also likely to be more challenging for urban dwellers. The quality of latrine superstructures were observed to be poorer in urban areas, providing little support for individuals with mobility impairments. Latrines in urban areas were also more commonly shared between several families, making them less clean and less well suited to the needs of a disabled person. Drainage was also observed to be a common problem in urban areas.
Gender
Traditionally, Malawian men and women play different social roles. This affects performance and perceptions of WASH activities. One respondent highlighted an association between marital status and water access.
“In our culture for woman to be a woman, you need to be able to fetch water. If a man is looking for a wife he wants a woman who is able to draw water and collect firewood, that’s what being a good wife is.”
(Woman, 47, paralysis. Urban)
WASH demonstrations and observations of two respondents with physical impairments in a poor area of Lilongwe provided another example of gender differences relating to water access. The male respondent was married and gave the following summary of his water access.
“Because I am happily married it’s my wife who does the water collection. It’s normally easy for me to access the water as she brings it close to me. I am not happy with the life I live because I would like to be more independent. It worries me that sometimes I might need to access water but my wife might not be there… but this never really happens because my wife is so close and so supportive to me.”
(Man, 40, paralysis. Urban)
The other respondent was a 24 year old female. She explained that “even though I live with my brother, he does not help draw water so I have to do it all myself”. It was observed during her WASH demonstration that as an amputee it was difficult for her to cross the uneven, muddy ground and lean down to draw water from a well before having to haul the bucket onto her head. None of the disabled men in the study reported collecting water on a regular basis yet 10 of the disabled women were responsible for getting water.
Menstruation also imposes different WASH needs on women which can be more pronounced for disabled people. One respondent, a local government employee, explained that she frequently met girls with disabilities who have been encouraged to go to school but who then drop out when they begin menstruation:
“When they are in periods they don’t go to school, they stay one week, two weeks at home… Because imagine, if you are like the way I am [a wheelchair user] sitting down the whole time you are in periods, I wouldn’t be able to hear anything the teacher is teaching because I would be worried that maybe things are wet and I need to change.”
(Woman 47, paralysis. Urban.)
Menstruation challenges were found to be a source of shame, discomfort and worry for all of the disabled women interviewed. Menstruation was particularly challenging for women with visual impairments, for whom it was hard to identify when their period began and ended, for wheelchair users who experience discomfort due to being always seated and for people with intellectual impairments who were often not able to manage their periods independently.
“The challenge during menstruation is that all I can do is sit here. I do feel hot during that time and often the blood can go out through the clothes and it is embarrassing for me.”
(Woman, 35, paralysis. Rural.)
“It’s a challenge because of my visual impairment because I am caught unaware that I have messed up my beddings. It’s an embarrassment because I assume that this may be seen by others. Sometimes you can tell with the signs that you are going to start menstruating but it’s more difficult when you don’t get those signs and that concerns me hygienically.”
(Woman, 43, blind. Urban.)
Wealth and education
Although poverty was not measured empirically in this study, disabled people who appeared less poor (based on observed assets and housing) were found to have better WASH access. Higher levels of education and regular employment meant that individuals were more able to connect with services, participate in community events, be aware of policy and community structures and be able to independently mitigate their WASH challenges.
“Now I am one of the lucky ones, in my house I have been able to pay for piped water to be installed and I built a toilet inside so I have no problems now, but I am a special case, the majority of people with disability in this country don’t have this opportunity, they can’t afford it.”
(Woman, 27, blind. Urban.)
“I imagine somebody who is not working might experience more stigma and more challenges than me. I am accepted because am educated, I am accepted because I make money for myself. But I understand that those who are in the villages are experiencing more stigma up to this day.”
(Man, 37, albinism. Peri-urban.)
Poorer disabled people were more likely to rent accommodation and feel disempowered or discouraged from improving their household environment.
“The best thing for me would be to have a permanent place then I could build my own toilet and bathroom. Here [in rented accommodation] I could be chased away any time so any changes I make would be a waste of money. So it is about money, but in this situation it’s also more complex than just having the money.”
(Man, 46, double amputee. Peri-urban.)
Discussion
Access to improved water supply and sanitation as well as safe hygiene practices remains low across low-income countries. Given the challenges in addressing these issues for many low-income households it is not surprising the situation faced by disabled people, disadvantaged both physically and socially, is even worse. Previous studies have pointed to the importance of water [22] and sanitation [4, 23] in the lives of disabled people. The current study explored how these issues ranked in relation to other priorities of daily living. The study found that WASH access was a prominent concern for disabled people and one that negatively affected their lives and those of their carers. WASH-related tasks were perceived as a priority because of their association with self-esteem, independence, and also because of the health and the productivity consequences they have for individuals, their households and the broader community.
Literature on WASH and disability has frequently focused on WASH barriers. However, respondents in the current study highlighted not only barriers to WASH access but also the WASH needs associated with disability and the consequences experienced as a result. Examples of these are given in Table 7.
Removing or reducing barriers is likely to be the primary means by which WASH interventions might achieve greater inclusion for disabled people. However, as shown previously [24] the current study found that people with impairments may have different or greater WASH needs than others in their community. Implementers may therefore need to consider how to achieve equitable rather than equal WASH access. This may require thinking beyond adaptive technologies to include community support (e.g. assistance to collect greater amounts of water) and hygiene promotion tailored to specific needs (e.g. providing guidance to carers of people with severe impairments on how they can mitigate their unique hygiene challenges).
Understanding WASH consequences provides important context to this issue. It can inform broader agenda setting by highlighting the measurable impact that inaccessible or unacceptable WASH has on the lives of disabled people and the wider community including its association with productivity, disease transmission and self-esteem.
This study highlighted the variation that existed between people with disabilities with regard to the WASH barriers they faced. Some of this variation was related to the nature of individual impairments. Respondents with hearing impairments, epilepsy and mental health challenges were not found to face physical barriers while those with physical disabilities faced predominantly physical barriers. Institutional barriers were faced by all to some extent. However, people with sensory impairments, such as visual and hearing impairments, were found to be most disadvantaged when it came to participation in WASH events and access to information. Social barriers were found to affect people with most types of impairments. However, people with intellectual impairments, epilepsy and albinism were more likely to be affected by social barriers associated with cultural beliefs. People with only physical impairments were less likely to face social barriers.
The distinction between social, physical and institutional barriers is useful because it points towards different courses of action to facilitate WASH access. However, the analysis of barriers also revealed challenges arising as a direct consequence of an individual’s impairment. For example, people with hearing impairment may have difficulty in communicating WASH needs. Some people with physical impairments struggle to carry enough water to meet their needs or experience pain when they do so. People with intellectual impairments or severe physical impairments may experience incontinence. Consequently households in which such individuals reside are likely to need more water to mitigate the associated hygiene challenges. For some individuals with incontinence, toilet use may not be a feasible expectation.
Unlike the social model of disability, the ICF framework explicitly acknowledges that an individual’s impairment can directly contribute to reduced participation in WASH activities. Furthermore this reduced participation may not be addressed entirely through changes in infrastructure, social attitudes or institutions. Recognising this may be an important step towards identifying and creating appropriate support for individuals and their carers.
The extent to which impairments translate into disabilities depends not only on characteristics of the impairment but also characteristics of the individual and their environment [25]. This study, albeit with a small sample, explored the variation in barriers associated with gender, education, wealth and location (urban or rural). Being female and having limited resources and education were factors that made WASH barriers more pronounced. These findings are consistent with patterns of inequitable WASH access in the non-disabled population [26]. Our study supports earlier findings with respect to disabled women and urban and rural differences [4, 27].
Given the diversity in individual contexts, needs, barriers and impairments this research could not provide a comprehensive picture of the ways in which these factors interact to disable people with respect to WASH access. Further work with larger and more homogenous samples is needed to understand specific risks of disability associated with particular combinations of impairment and external factors. Individuals with mental health challenges are one example of a group that have been relatively neglected in the WASH literature. Further work might also seek to quantitatively measure the specific health and economic consequences faced by disabled people as a result of poorer WASH access.
The diversity of WASH barriers, needs and consequences is a challenge for implementers as well as researchers. Solutions need to address a variety of needs and this may contrast with the use of standardised approaches to deliver WASH interventions at scale. There are low-cost, simple hardware adaptations that can address some physical barriers for individuals with certain impairments [28]. However, there are other impairments for which, when combined with poverty and poor infrastructure, effective solutions are more challenging. One important approach in the face of this diversity continues to be efforts to make WASH interventions more inclusive with respect to listening to the needs of disabled individuals [29]. The right to be included is perhaps the lowest common denominator cutting across individual variation. Interventions such as Community Led Total Sanitation, which are implemented at scale and follow a relatively uniform protocol, may offer opportunities for the addition of standardised steps to improve inclusiveness. Such an approach might allow for the generation of solutions that are context specific and responsive to the needs of the individual but still feasible to deliver at scale.
Upstream influences such as policies and institutional structures no doubt have an important role to play in creating or removing barriers to inclusion and to WASH access. Discussion of these barriers was not a focus of this study simply because they did not feature in the perceptions of barriers presented by respondents. This in itself may be indicative of a certain degree of exclusion of disabled people from the agenda setting process. Partnerships with key agencies beyond the WASH sector are also likely to play an important role in meeting the needs of disabled people. However the study did not explore this topic.
The research methods employed in this study helped generate data that would not have been achieved through in-depth interviews alone. Emotion mapping helped ensure the perspectives of children and people with intellectual impairments were not overlooked in favour of interviewing only their caregivers. The Photovoice method was described by participants as “memorable”, “fun” and “unlike anything I have ever tried before” and has subsequently provided advocacy opportunities for the perspectives of participants to be shared with a wider, non-academic audience [30]. WASH demonstrations and observation were found to be acceptable and helped facilitate discussions around taboo issues. The study also benefited from the input of disabled people, recruited as field assistants, to facilitate interviews and data collection during fieldwork. These people were able to use their own experiences to inform the design of the research tools and the scope of questioning. Their presence also helped to build rapid rapport with respondents. The research was also guided by the feedback generated through a stakeholder workshop at the inception of the project, which included disabled people and representatives of disabled people’s organisations as well as service providers.
Conclusions
Documenting the range of WASH challenges faced by disabled people and identifying commonalities within this range may facilitate the development of innovative hardware and software solutions. This study took an initial step along this path in Malawi, exploring the utility of existing models of disability and experimenting with novel data collection methods in the process. Analysing the perspectives and experiences of disabled people through two dominant theoretical models of disability enabled this study to highlight WASH needs and challenges which are not fully addressed by WASH programming. Addressing these shortcomings and reaching out to the individuals who are currently excluded will be critical to achieving WASH access for all.
Acknowledgments
The authors would like to acknowledge the support of the Malawian Ministry for Gender, Social Welfare and Disability and the Federation of Disability Organisations in Malawi (FEDOMA) for their support throughout this research. We would like to recognise the contributions of Lizzie Shaba, Fiskani Ndhlovu Msutu, Overstone Kondowe, Juma Mkandawire and Hermes Tebulo who assisted with data collection and transcription. Lisa Danquah, Hazel Jones and Maria Zuurmond shared their existing data collection tools with us and made useful contributions to the development of the tools used in this study. We would particularly like to thank the disabled participants and their carers who took time to share their personal experiences with us as part of this research. Lastly we would like to thank Brian Reed and an anonymous reviewer for their comments which improved the overall strength of this paper.
Author Contributions
Conceived and designed the experiments: SW AIP RH AB HK. Performed the experiments: SW. Analyzed the data: SW. Contributed reagents/materials/analysis tools: SW AIP RH AB HK. Wrote the paper: SW. Provided theoretical, contextual and structural contributions and edits: HK AIP RH AB.
References
- 1.
United Nations, "Transforming our World: the 2030 Agenda for Sustainable Development—Finalised text for adoption., " August 2015,.
- 2.
OHCHR, "Human Rights of older persons—Summary report of the Secretary General to the General Assembly," 2011.
- 3.
WHO and World Bank, "World Report on Disability," ed, 2011.
- 4. Jones H. and Reed R. A., "Why should the water and sanitation sector consider disabled people," WELL—Resource Centre Network for Water, Sanitation and Environmental Health, 2005.
- 5. Moe C. L. and Rheingans R. D., "Global challenges in water, sanitation and health," J Water Health, vol. 4 Suppl 1, pp. 41–57, 2006.
- 6. Rheingans R., Anderson J. D., Luyendijk R., and Cumming O., "Measuring disparities in sanitation access: does the measure matter?," Tropical Medicine & International Health, vol. 19, pp. 2–13, 2014.
- 7. Rheingans R., Dreibelbis R., and Freeman M. C., "Beyond the Millennium Development Goals: public health challenges in water and sanitation," Glob Public Health, vol. 1, pp. 31–48, 2006.
- 8.
UPIAS, "Fundemental Principles of Disability," 1975.
- 9. Llewellyn A. and Hogan K., "The Use and Abuse of Models of Disability," Disability & Society, vol. 15, pp. 157–165, // 2000.
- 10.
WHO, "Towards a Common Language for Functioning, Disability and Health: ICF—The International Classification of Functioning, Disability and Health ", Geneva 2002.
- 11.
Shakespeare T., "Chapter 16: The Social Model of Disability " in The Disability Studies Reader, Davies L. J., Ed., ed New York Routledge, 2013.
- 12.
H. Jones, K. Parker, and R. Reed, "Water supply and sanitation access and use by physically disabled people—a literature review," 2002.
- 13.
H. Jones and S. House, "Water supply and sanitation access and use by physically disabled people—report of field-work in Cambodia," 2003.
- 14.
H. Jones and R. A. Reed, "Water Supply and Sanitation access and use by physically disabled people—report of field work in Bangladesh," 2003.
- 15.
H. Jones and R. Reed, "Water supply and sanitation access and use by physically disabled people—Report of field work from Uganda," 2003.
- 16.
Jones H. and Reed R., Water and Sanitation for disabled people and other vulnerable groups—designing services to improve accessibility UK: WEDC Loughborough University, 2005.
- 17. Groce N., Bailey N., Lang R., Trani J. F., and Kett M., "Water and sanitation issues for persons with disabilities in low- and middle-income countries: a literature review and discussion of implications for global health and international development," J Water Health, vol. 9, pp. 617–27, Dec 2011.
- 18.
Washington Group on Disability Statistics. (2010). Recommended Short Set of Questions. Available: http://www.cdc.gov/nchs/data/washington_group/WG_Short_Measure_on_Disability.pdf
- 19.
WEDC, "Accessibility audit of water & sanitation facilities," Loughborough University, UK 2012.
- 20. Braun V. and Clarke V., "Using thematic analysis in psychology.," Qualitative Research in Psychology, vol. 3, pp. pp. 77–101., 2006.
- 21.
Hayes N., "Theory-led thematic analysis: social identification in small companies. In Hayes N.," in Doing Qualitative Analysis in Psychology. Hove, ed UK: Psychology Press., 1997.
- 22. MacLeod M., Pann M., Cantwell R., and Moore S., "Issues in access to safe drinking water and basic hygiene for persons with physical disabilities in rural Cambodia," J Water Health, vol. 12, pp. 885–95, Dec 2014.
- 23. Beresford B., Rabiee P., and Sloper P., "Priorities and Perceptions of Disabled Children and Young People and Their Parents Regarding Outcomes from Support Services " Social Policy Research Unit, University of York 2007
- 24. Tesfu M. and Magrath P., "Water and sanitation access for people with motor disablities " WaterAid (Ethiopia) 2006.
- 25. Altman B. M., "Definitions, concepts, and measures of disability," Annals of Epidemiology, vol. 24, pp. 2–7.
- 26.
WHO/UNICEF JMP, "JMP Working Group on Equity and Non-Discrimination—Final Report," Available at http://www.wssinfo.org/fileadmin/user_upload/resources/JMP-END-WG-Final-Report-20120821.pdf, Joint Monitoring Program2012.
- 27.
Norman W. R., "Water, Sanitation and disability in rural West Africa—Enhancing access and use of WASH facilitites," Messiah College, P.A. USA 2010.
- 28.
Jones H. and Wilbur J., "Compendium of accessible WASH technologies," WEDC, SHARE, WaterAid 2014.
- 29.
J. Wilbur and H. Jones, "Frontiers of CLTS Issue 3: Disability- making CLTS fully inclusive—Community-Led Total Sanitation," 2014.
- 30.
White S. and Biran A., "Photographing the unspoken: A photo exhibition depicting the daily struggle faced by people with disabilities in accessing water, sanitation and hygiene.," LSHTM, UK 2015.