Disability and barriers in Kenya
Disability and barriers in Kenya
Abstract and Keywords
People with impairments encounter many barriers in their daily life. This chapter describes the variety of barriers and looks at how the collected sum of many barriers influences access to what is considered essential and indispensable for all humans: healthcare services and education. It describes some of the mechanisms that create and maintain a difficult life in a resource-poor context by describing the particular challenges people living in poverty with disabilities encounter. The chapter also describes some of the given options of coping with these challenges. It argues that a family perspective should direct actions that are implemented in order to reduce barriers, as well as to develop coping strategies.
People with impairments encounter many barriers in their daily life. In this chapter we describe the variety of barriers and see how the collected sum of many barriers influence access to what is considered essential and indispensable for all humans: healthcare services and education. We illuminate some of the mechanisms that create and maintain a difficult life in a resource-poor context by describing the particular challenges people living in poverty with disabilities encounter. We also describe some of the given options of coping with these challenges. We argue that a family perspective should direct actions that are implemented in order to reduce barriers as well as to develop coping strategies.
Interrelationship between poverty and disability: a double exclusion
People with functional impairments are often disabled not so much because of their impairment, but because of being denied access to education, labour markets and public services. This exclusion leads to poverty and in a vicious circle, poverty can lead to more disability by making people more vulnerable to malnutrition, disease and unsafe living and working conditions (Elwan, 1999; Yeo and Moore, 2003). The situation of disabled people living in poverty can be understood as a double exclusion as they are hindered in social and political participation and the opportunity to develop abilities because of poverty, which is a situation that is worsened due to the impairment.
The understanding of both disability and poverty has undergone changes during the last decades. Poverty is a complex and multidimensional phenomenon, covering a range of aspects such as income, education, health, social and political participation, environmental quality, security and freedom, as well as social justice and human rights (Eide and Loeb, 2004; Wolfensohn and Bourguignon, 2004). This has led to increased interest in micro-level decisions and instruments and measures intended to improve poor people's access to food, shelter, education and healthcare. Focus has been directed both towards improving service delivery to poor people and to ensuring increased influence on important decisions affecting their lives (World Bank, 2000). Health, education and work are decisive factors in this respect and considered fundamental human rights (UNESCO, 2006).
Disability, similarly, places its focus on participation and activity, thus expressing disability as a complex process involving a number of different elements at (p.154) individual and societal level (Grönvik, 2007). Disability arises when the individual's ability to do daily activities, to participate in local and communal activities and to carry out social roles that are considered normal or common by the individual and the community is limited or hindered because environmental barriers do not take into consideration the individual's bodily, sensory, mental and/or intellectually reduced functional ability.
Living conditions among disabled people in high-income countries are low compared with non-disabled people, (Hem and Eide, 1998), and a similar pattern seems to be the case in low-income countries (Eide et al, 2003; Loeb and Eide, 2004). There is, however, scant information on the dynamics of how the presence of impairment combined with poverty affects the daily life of the individual in a resource-poor setting. And there is scant information on individual coping strategies. However, there is sufficient knowledge to conclude that people with disabilities are at risk of being and remaining among the poorest. Among the most prevailing exclusion mechanisms are illiteracy or low education (O'Connor, 2006; Jandhyala, 2007, Wedgwood, 2007); low priority for access to limited resources such as food, health services, clean water and land; unemployment and limited social contacts; lack of support for high costs associated with the impairment; and exclusion from political and legal processes (Yeo, 2005). In addition to lack of money, which is only one of many barriers for access to services, limited awareness about available services and bureaucratic obstacles are significant barriers (Saloojee et al, 2007).
The exclusion is not necessarily intentional. As we show in this chapter, exclusion easily happens when people's different functional abilities are not taken into consideration when developing services that are intended to be accessible for everyone. Lessons learned from this study are to recognise that people's functioning level varies significantly. It is necessary to account for individual functional differences when designing programmes and services that are meant to promote economic and social well-being for all. In resource-poor settings it is important to focus on the situation for the whole family group.
Methodology and empirical basis for the study
The empirical basis for the study draws on fieldwork in Kenya conducted during two weeks in 2005 and in 2006 (Grut and Ingstad, 2006). The work was commissioned by the World Bank as part of a larger effort to focus on the intertwined relationship between disability and poverty. The focus was to gain a deeper understanding of people's daily lives and the challenges and coping mechanisms in place. Given the focus of the study, a qualitative approach with visiting local settings and carrying out semi-structured interviews was selected as the most appropriate methodology.
The informants and the sites visited were chosen for their diversity, representing a variety of ethnic groups and ecological zones as well as covering the urban–rural dimension. The idea was to capture a variety of causes of disability and poverty (p.155) in its different manifestations. We had to choose accessible places and at the same time obtain as complete data as possible. To meet the requests of adequate samples, we chose populated and also multicultural areas.
The sample comprised different types of impairments: bodily, visual, hearing and intellectual. The principle of variety also concerned congenital and acquired impairments, and impairments due to accidents and disease. The sample comprised a variety of ages: parents of children (newborn to youth), adults from 18 up to older people. The preferred place for the interviews was the informant's home, as this represented an opportunity to focus on the total situation of the person and the viability of the household. In all, 91 interviews were conducted during the two field visits.
The sample was strategically chosen among people who represented a wide variety of life situations (Miles and Huberman, 1994; Kvale, 1996). Our preconception of the challenging relationship between disability and poverty led us to seek the poorest areas, whether this was the city slums or poor, remote, rural areas. While urban poverty in Kenya may be of the extreme kind, rural poverty is sometimes met by having a small plot with vegetables for a family's own consumption and perhaps a goat and a few chickens. Proximity to relatives and established networks ensure that there are some coping mechanism at hand if a crisis occurs. The urban poor, on the other hand, are often alone, with their families living far away; the much sought after freedom and independence can become a liability when there is dire need.
It must be considered a possible bias that some areas as well as some cultures and tribes were omitted from the study. We did not have the opportunity to visit every district in Kenya nor to interview every person in each area visited, but had to pick a sample that could give information covering as many relevant aspects of the research questions as possible. Due to limitations in time and resources we chose not to visit the more remote areas. As we were dependent on local assistance to identify informants, we chose places with organisations working for the benefit of people with disabilities, disabled people's organisations (DPOs) in particular. This implies a possible bias in only reaching people benefiting from these activities and services and not those who do not benefit from any kind of assistance. On the other hand, we discovered that many of the informants, even if they were known by the organisations, did not benefit from any services and were not informed of the possibilities for assistance. People with mental ill health were not included in the study. This implies that this study could be less suitable to throwing light on the situation for people with mental ill health.
Disability in a Kenyan context
Kenya is a low-income, food-deficient country with a population of 34 million and with great ethnic diversity. About 43% of the population is under 15 years of age and about 58% live below the poverty line. Approximately 75% of the workforce is engaged in agriculture, mainly as subsistence farmers. Most city workers retain (p.156) links with their rural, extended families and leave the city periodically to help on the family farm (MPND, 2003a).
Knowledge on disability prevalence and living conditions of people with disabilities is scant as well as knowledge on the impact of the available services. According to a health and demographic survey in 2003, Kenya is expected to have a population of over three million disabled people, which is about 10% of the total population (MPND, 2003b). The occurrence is expected to vary from district to district, due to diverse living conditions and the conception of impairment and disability. Trauma, particularly due to road traffic accidents and violence, is a growing public health problem and a significant cause to impairment (Masiira-Mukasa and Ombito, 2002). Screening in Bondo District in the Nyanza Province among children between the ages of two and nine found that 64 (16%) out of 399 children had a disability (Muga, 2003). There is indication of a considerable burden of moderate/severe neurological impairment (NI) in Kilifi District in Kenya, with prevalence for moderate/severe NI of 61/1,000 (Mungʼala-Odera et al, 2006). Epilepsy, cognition and hearing are the most common domains affected.
Issues of particular relevance to this study
Many of the diseases that are significant causes for morbidity and mortality are widespread in Kenya as in many other low-income countries. Malaria, infections, untreated epilepsy, malnutrition, diarrhoea, HIV/AIDS and tuberculosis are all strongly related to poverty and impairment. All these diseases were identified as major causes during the fieldwork for this study. Pregnant women and their unborn and newborn children are particularly vulnerable to malaria, which can have a critically damaging impact on children's cognitive development (WHO, 2005, 2006). In Kenya all those suffering from malaria have been entitled to free treatment at health facilities since the end of 2006, and pregnant women are entitled to malaria prophylaxis in the weeks around the delivery. Still, the disabling consequences of malaria infections confronted us when visiting the areas at Lake Victoria and the areas around Mombasa.
HIV/AIDS is believed to infect one in every 18 adults in Kenya. Although Kenya has made significant progress in preparing for institutionalising care and treatment (WHO, 2004), knowledge of treatment is very low due to high levels of stigma among health workers and the general population. Although an estimated 11,000 people are receiving antiretroviral therapy, systematic monitoring and evaluation is lacking. Kisii District, included in this study, had its first AIDS case in 1987. The extent to which HIV/AIDS has infected or affected disabled people in Kenya has not been determined. The combined effect of disability and HIV/AIDS has received little attention, but it is anticipated that the situation is similar to many other African countries. People with disabilities are more vulnerable than the rest of the population, therefore it is to be expected that they suffer the same level of prevalence, or even higher, as the rest of the population (Groce, 2004; (p.157) Yousafzi and Edwards, 2004; Thomas, 2005). Women with disabilities encounter various barriers to accessing safe motherhood and reproductive healthcare services in particular regarding HIV/AIDS. A generalised assumption among healthcare service providers is that women with disabilities will not be sexually active, and thus do not require reproductive healthcare. This leads to increased vulnerability to sexually transmitted infections. Traditional beliefs about the transmission of disabilities can create barriers to integration in ante-natal clinics. Furthermore, midwives' fear of delivery complications in women with physical impairments can result in over-referral to a tertiary maternity facility which is outside the locality and difficult to get to (Smith et al, 2004). A special focus on HIV/AIDS and disability is also important because HIV/AIDS weakens the family group, on which the disabled family member is particularly dependent.
Polio has been a major cause of impairment in Kenya as in many other countries in the world. There have been no reported cases since 1984, but recently the risk is appearing again, as polio has been found in the refugee camps in the north east (Dolan, 2006). Today many of the adults affected as children are living with the consequences of the disease – as they grow older many are facing postural dysfunctions from an early childhood infection.
A study of children with hearing impairments in Kisumu District showed that the mean age of identifying hearing loss was 5.5 years (Omondi et al, 2007). The median travel distance to the preferred healthcare centre was 2km, but with great variations. Despite the parents being aware of the child's impairment, health facilities were underutilised and parents seldom sought help for their hearing-impaired children.
The limitation in attainment of education and challenges to economic development and self-support is a critical challenge. Unemployed people with disabilities have difficulties in contributing to family income and welfare and this may put a strain on the limited resources as their families attempt to provide special care. Thus, education is considered the most important tool for participation in the socioeconomic life. Achieving education for all is one of the Millennium Development Goals and Kenya is committed to this. Education in Kenya has been based on a system with eight years of primary, four years of secondary and four years of university education since the late 1980s. Primary education in government schools became free and compulsory in January 2003, 40 years after it was first promised. The importance of money for sending children to school was clearly demonstrated when free primary schooling was introduced as the number of children and adults enrolled in school increased dramatically. There is an obvious lack of teachers to deal with the demand. In spite of school fees waiver initiatives, parents have to pay for books, school uniforms and meet other requirements as the demand for them arises. It is estimated that less than 10% of all disabled children in developing countries go to school, and less than 3% of children with physical or mental impairments. Studies from other low-income countries show that teachers in the mainstream schools are reluctant to help learners who have functional and/or learning limitations (Sharma et al, 2006), (p.158) findings that are also supported from this fieldwork. A number of low-income countries have adopted inclusive policies, as is the situation in Kenya. However, no country worldwide has as yet implemented a fully inclusive educational system (Jonsson and Wiman, 2001).
Organised care for people with disabilities
Kenya has had a history of organised care for disabled people since the Second World War.1 Stakeholders offer a wide range of services, mainly based on charity. There has been a certain governmental contribution to establish public bodies for the benefit of people with disabilities. However, the services reach only a small percentage of the people in need and they are unequally distributed regarding types of impairments. The volume and quality of services are marginal and reach out to only a small proportion of those in need. Ten rural vocational rehabilitation centres have been established countrywide, offering artisan courses such as carpentry, dress making and leatherwork. A special education section was set up in 1975 within the Ministry of Education to coordinate education for children with special needs. In 1981, the National Fund for the Disabled was set up as a trust, making available direct assistance to both individuals and institutions. The Ministry of Education introduced the Educational Assessment and Resource Services (EARS) in 1984. EARS has enhanced the inclusive education delivery strategy that promotes placing children with disabilities in integrated programmes. DPOs exist both as national associations2 and as community-based groups. Kenya has a Persons with Disabilities Act brought into effect in June 2004, with the establishment of a National Council for Persons with Disability whose mandate is to implement the rest of the Act on the rights, privileges and protection of people with disabilities.
Barriers: lessons learned from the fieldwork
Encountering barriers when seeking health services
The primary healthcare system is not sufficiently developed to cover all of Kenya. People in rural areas live across the region while health facilities are centralised in the towns and cities. This implies that rural people have to travel long distances to get to the healthcare services. Many disabled people have considerable problems with walking long distances, which means that healthcare facilities are only accessible for those who can afford to pay for transport causing a considerable expense for poor people. Consequently people do not seek healthcare treatment or they are brought to the hospital too late. Take, for instance, Edna, who lives in a small village, a two-day walk from the nearest healthcare centre. She did not manage to get to the hospital to collect her malaria prophylaxis when she was pregnant – a prophylaxis that is free of charge for pregnant women. She got sick and was in difficult labour for several days with the child. The family did not (p.159) seek emergency help in time because money for transportation was not there. This unhappy situation caused brain damage to her child. Despite the fact that she has later taken the child to both modern doctors and traditional healers, she has not received any counselling on how to deal with a child who is severely mentally impaired.
But even when the family manages to raise money for transport, the effort sometimes is in vain. When they get to the hospital there is no guarantee that there are healthcare personnel present to help them. They could just as well be told to come back another day. Several families mentioned how they got appointments to see doctors and managed to mobilise family and friends to raise the money to go, only to be told when they got there that the doctor was not in and asked to come back several months later. Not knowing how to raise the money a second time, they might easily give up at this stage. This is the situation for Aisha and her family:
We see from this that even if services are in place, as both a local school and a health clinic are in the area, they are not necessarily accessible for the people in need. This situation illustrates very clearly some of the consequences of healthcare services depending on foreign medical personnel who visit on an irregular basis. Children with treatable conditions are not treated because the health facilities lack sufficient personnel and there is a lack of both knowledge and medical equipment. Because of this situation, conditions that would be considered rather trivial in developed countries will worsen the situation for a disabled child in a low-income country.
(p.160) By using the wooden stick Aisha is able to make herself useful by helping with the household work and looking after her younger siblings. Assistive devices are vital to lessen the consequences of the impairment. However, there is a severe lack of adapted assistive devices in low-income countries, representing important barriers in themselves. The available devices, such as crutches and wheelchairs, are old and worn out and rarely adapted to the individual. When visiting people who had a wheelchair, we noticed that very often it was not used. The explanation given was either the difficult terrain or that there was no one to push the disabled person. Modern wheelchairs work well on a city street, but are not fitted for terrain with rocks, fine sand and ditches. Wheelchairs and crutches are typically not adapted to the individual's body. This causes in particular severe consequences for children as the child grows and the impairment becomes aggravated. Crutches that once were given to the small child do not grow with the child. Wheelchairs fitted to adults will trap the child in passivity as they are too big and heavy to manoeuvre. The result is a paradoxical situation where the aid that is intended to minimise the consequences of the impairments instead increases them. This was the situation for many of the people we met with polio, as, for instance, Grace, a young woman in her twenties. As a young girl she got callipers and crutches. As she has matured, both the calliper and the crutches have become too short. Still, she is dependent on the devices in order to move around. When she walks, she has to bend down and this has caused postural related dysfunctions that also give her pain in her back and hips. She needs to have the crutches and callipers adjusted, something that should have been done several years ago. Adjustments are expensive and must be done at a rehabilitation workshop. In order to have this done she must go either to Nairobi or to Kijabe, which is far away from her town. She constantly postpones this because she is not able to raise the money. When we sit and talk she says hopefully: “Maybe I will get some next year.” But after a short pause she adds: “But I am used to these ones so will manage,” indicating that she does not really believe in it.
Obviously, it is challenging to get to a hospital or medical clinic. But even when a disabled person manages to get there, the clinic itself creates many obstacles. The medical personnel might not be in place or the routines at the clinic do not take into consideration the particular needs of people with functional impairments. Several of the people with physical impairments we met told us that they had to queue up like the other patients in spite of difficulties connected to walking and standing. If they left the queue to sit down, they risked losing their place in the queue. Benado, a young man, told us about his difficulties when he visited the hospital to get treatment for postural dysfunctions from polio. He always asks for an appointment to avoid queuing up and every time the hospital refuses, claiming that they must treat everybody the same way, “… but to treat me the same way as the non-disabled is to discriminate me because I am not able to line up in the same way and if I go and sit I lose my place in the queue,” he said. In this way the clinic's requirement for equal treatment creates barriers, leading to inequality.
Free education in Kenya is not free in the sense that the parents do not have to pay. Parents have expenses for books, uniforms, shoes and transport and in some schools the children also have to pay for meals. These expenses represent a considerable amount for poor families with many children. Let us have a closer look at the situation of Frida's family. Frida is widowed and has three children. Wilson, the youngest one, at 13, is mildly mentally impaired. Frida works all day as a very low-paid housemaid in a better-off area on the other side of the city. Two years ago, a special class for children with learning difficulties was opened at the local school. This was very fortunate for Wilson who has since followed this special class. Frida has many reasons for sending Wilson to the local school. First and most importantly, it represents an opportunity for him to learn. He likes being in school and has started to learn how to write his name. He is also taught social skills by the teacher who is a specialist in working with children with mental impairments. Second, being in school means that he is looked after properly while she is working. The school is free, but they have to pay for a food programme. The children who are not able to pay for the food programme are sent home at lunch time and not allowed to come back that day. Frida cannot afford the food programme, so Wilson is missing the opportunity of a nutritious meal as well as half a day's education. He gets less training than his classmates from better-off families. Thus, he is only looked after during the mornings and from lunch time on he strolls around the streets begging for food until his mother finishes work.
Many local schools do not accept disabled children at all. Special schools and boarding schools for disabled children are expensive and dependent on donors. Consequently, the expenses connected to having a disabled child in school easily exceed the expenses for the non-disabled one. Faced with such expenses, many poor parents still have to make priorities among their children and often end up sending the non-disabled children to school before the disabled children.
Many parents try hard to keep a disabled child in school, selling a goat and some chickens to keep up with the school fees. Still, many end up having to withdraw the child after some time because they are unable to raise money to continue paying the school fees. Poor parents have to have a year-to-year perspective when it comes to sending the disabled child to school.
We have already described some of the challenges disabled children face in getting to school. For many children, transport to and from school by public buses or simply by walking along the road is not possible. Many disabled children are not sent to school because they are not able to walk that far and there is no possibility for transport. But even parents who can pay find that the transport is inaccessible. The father of an autistic boy told us that his son could manage to take the bus on his own, but he needed assistance to get off at the right stop. The parents were unable to accompany him themselves as they both had to work in order to make money for the family, among other things, to be able to pay for the boy's special school. The bus drivers refused to help the boy, as did the other (p.162) passengers. After several traumatic incidences where the boy did not get off the bus at the right stop and therefore got lost, the parents decided to take him out of school.
Lack of education for a person with a disability is not only a question of being able to get to school or to afford the school, but also of accessibility and suitability of the school itself. Very few schools have classrooms that are accessible for children with physical impairments and very few have teaching materials that are adapted to either mental, hearing or visual impairments. If a disabled child needs assistance during the day in a ‘normal’ school, the other learners are the ones who are asked to help. If they refuse, the child is most likely left on his/her own. We met several parents who had taken their disabled child out of school because classmates or teachers were reluctant to assist during the day. This was the situation for Mildred, who is bodily impaired and uses a wheelchair. She only went to the local school for a short time before her parents took her out. The wheelchair is big and heavy and she has to be pushed by someone. Her mother brought her to school every morning before she went to work and collected her every afternoon. To enter the building she needed to climb the stairs and therefore the chair had to be left outside. She crawled to take herself to the classroom and managed fairly well inside the classroom. But the school day was long and she needed to go to the toilet during the day. The toilet is a hole in the floor, as is quite common, and therefore not accessible to her without adult assistance. However, the teachers were not willing to assist outside the class. Faced with these obstacles the mother saw no other option but to take her out of the school: “When she moves around in the buildings she has to crawl and nobody is willing to help her when she needs to go to the toilet. I do not want my child to crawl in the other children's droppings.”
Parents of disabled children often make very realistic assessments and conclude that their child will not be able to cope in such an environment.
The number of teachers with special education is slowly increasing in Kenya, but there is still a real lack of teachers with skills in teaching children with hearing and visual impairments, not to mention children with mental impairments. To be in a so-called ‘normal’ school for a child in need of adapted teaching will most likely lead to no skills at all. The most common solution by the teacher seems to be to let the child sit in front of the class and then let him/her manage as best as he/she can. Irene was born deaf and attended the local school for four years. Then her mother could not afford it any more. Anyway, the mother says, it was a waste of money: “She did not learn anything. She does not know how to write and read. She just sat there learning nothing.”
Coping in the context of disability and poverty
Poverty and disability is intertwined in such a way that sometimes poor families seem to have lost what we may call a ‘fighting spirit’ and have given up. Faced with the many losses and obstacles that poverty creates, the care for a disabled family member is one burden too many and just becomes too much. The fragile (p.163) family is tipped off balance and there is just not enough labour capacity, resources or time to give the disabled person proper care, to seek help or to receive help that is available. This was the situation for a family we visited in the poor outskirts of Mombasa. The father is a day worker, and the mother was severely injured from burn wounds. The children include four girls and a 14-year-old boy with cerebral palsy and epilepsy. The doctor suggested amputation of the mother's leg, but she refused, afraid that this would make her even more impaired than she already is. The boy was able to move around with callipers and crutches until about a year ago when his seizures started to increase because his family could no longer afford to pay for his medicine. Within a fairly short time he was no longer able to walk. We found him lying on a plastic sheet on the concrete floor of the family's small house. His legs had become spastic and to keep them from crossing the family had kept his callipers on. This had given him big sores on his knees and heels on which flies were feeding, and he cried desperately in pain when we tried to turn him around. He was very dirty and smelled of urine. We suggested getting him up from the floor and onto softer bedding but the parents only gave us a blank, helpless look. They only had one mattress to share among the family members and could not afford to have it soiled by urine: “We have one and that one is shared among the other ones. Where shall we get money from to buy one for just him to use?”
This case could reasonably be interpreted as one of extreme abuse and neglect. What we saw in the eyes of the parents was not lack of love and interest, but desperation over a situation in which they were no longer able to cope; they were unable to care for the disabled boy or with his four other non-disabled siblings. The father was unemployed and only occasionally got small day jobs. On days without work they often had to go without food. The mother was in severe pain because of her infected leg and it was difficult for her to walk around and manage her household duties. So how can we accuse them of neglect? We find it more useful to see this family as the victim of poverty created mainly by social and political forces outside their control and by a weak social security system that is not able to detect and prevent situations like this. Thus, the best way to help this boy would first of all be to help his family regain a viable way of life in which fulfilling his needs is only one challenge out of many in the daily struggle to cope.
Often we were told about disabled people who were kept at home, apparently ‘hidden’ by their family. When visiting these families we learned that there was always a reason for keeping the disabled family member more or less inside the house or the compound. Looking only superficially into these cases, we could have easily interpreted them as cases of ‘hiding’ the disabled family member. Our interpretation, however, is that of coping with a difficult situation. Wherever we went, parents told us not only about bad treatment and stigmatisation from others, but also and often about fear of such treatment. The risk of mistreatment and abuse is particularly present for girls but also for disabled young boys when they are exposed to the world outside the close family and the village, or when they move into the big cities to seek more opportunities. Several of the boys (p.164) with mental disabilities had encountered negative reactions from neighbours who had hit and kicked them because they had failed to behave in a manner to be expected from a child of that age. Young disabled girls living in the more crowded areas of the cities were vulnerable to strangers' abuse, risking early pregnancy and possible HIV infection. Thus, fear of stigmatisation and actual stigmatisation is linked within a vicious circle.
A typical example was Makot's situation, a boy with a mental disability. Makot wanted to go to school, but he was not accepted at the local school and his family could not afford a boarding school for mentally impaired children. Makot suffered from epilepsy and his social behaviour sometimes caused conflicts with the neighbours. He had an urge to take long walks away from the village and this had caused great concern for his parents. He needed to be looked after constantly. He is both “strong and determined and he needs a strong person to control him”, according to his father. The father decided to stay at home in order to take care of the boy who was kept inside the house most of the day while the mother worked in the fields. The fact that the father stayed at home caused a severe strain on the family's economy. No one had ever offered counselling to the family on how to deal with the boy's behaviour and the father was exhausted and worried about Makot's and the family's future.
Often a majority of the poor households we visited were not viable entities to the extent that although innovative ideas could be made with regard to addressing the problems of the disabled member, it was often almost impossible to realise this given a poor resource base. Someone could suggest that the neighbours should contribute in such cases. We discussed this in a group interview when talking to family members and neighbours of disabled people in a village. The neighbours defended their non-involvement by saying that they too had little to spare. They already found themselves in a strained situation looking for work, fetching firewood and water, or farming their small piece of land. Poor families very often have poor relatives and there is not much to spare. During the past few years, social security systems, with basic disability-related grants, have emerged in some low-income countries. There are indications that the take-up of these grants is increasing, albeit slowly (Booysen, 2004; Loeb et al, 2008). Still, we lack knowledge on how these grants contribute to the benefit of the particular individual and the family.
In some families relatives played an active role in raising money for either school or health services for the disabled family member. Another way luck can strongly contribute to resilience was the luck of running into an organisation and sponsors who would help a disabled person through operations, school or vocational training. Disabled children from poor families who are at boarding school or in vocational training often had experienced such luck. This was the situation for Josef, who was functionally deaf as a boy, due to middle-ear inflammation on both sides. He was detected by some missionaries who offered to send him to Europe for an operation and the opportunity to get an education. This has changed his life dramatically. From being a possible burden to his family he has (p.165) become a resource to them all as well as to the community. But donors come and go. We met several young people who had been in school because the school had sponsors from abroad. But they had to leave when the school introduced high school fees as the sponsors decided to withdraw.
Poverty and lack of education lead to reduced self-confidence and limit knowledge on where to go for help, no money to buy a radio to listen to informative programmes and fewer opportunities to utilise the help that is actually offered. In this matter DPOs play an important role in sensitising people about the possibilities that may exist. It was very encouraging to see the role that some local representatives of DPOs played in relation to other disabled people. In several of the districts we visited they worked closely together with the officers of the Social Development Office in detecting cases, offering advice and counselling and referring them when severe needs were detected. “They know everything about the disabled people here,” some of the district officers said when we were introduced to the representatives of the local DPO.
Engagement in the DPO gave volunteers an opportunity to contribute to coping with their own situation and to helping other people with disabilities. Some young people in the towns and cities join a DPO and build groups to support each other, whether this is emotional, practical or financial support. This could easily be interpreted as a ‘peer family’ – a replacement of the family that is not around. The ‘peer family’ could be understood as a way of building a social security network in a society where family ties are about to weaken and public social security is almost absent. This added qualities to a life that otherwise could easily have been without meaningful activities. However, DPOs work for idealistic reasons and only rarely do they have sponsorship. There was consequently a limit to how much they could achieve and how much time they could spend on the task.
Collected sum of the many barriers that influence daily life
Looking on each barrier separately without understanding the connection between them can easily make us think that some are quite trivial. By taking a deeper look into the situation of poor people with disabilities and their families it is evident that many different elements appear together and operate in synergy to influence each other, creating a situation with significant obstacles. Through this fieldwork we have demonstrated the necessity of conceptualising the complexity in the interaction of the many barriers that influence people's daily life. The study shows that disabled people meet different kinds of barriers in many areas in their everyday life. From the person's point of view everyday life is about handling situations that are characterised by the intertwinement of barriers. Such situations lead to systematic exclusion from life areas that are considered important. Key barriers are evident, notably the lack of resources, inaccessible infrastructure, social barriers and weak or non-existent policies that prevent people with various mental, physical and sensory impairments from participating in the economic and social endeavours within their communities as they strive to better their lives. The (p.166) intertwinement of the many barriers in the various arenas of social life and during different stages of the life cycle represents almost insurmountable hindrances.
An example of how the sum of many barriers creates a life of passivity and helplessness is Mary's situation. She lives in a small village together with her parents and three older siblings. They live in a small hut made out of soil. The place is quiet and nice and a large mango tree offers protection from the sun. A couple of hens and chickens move freely around in the courtyard. Her father is a day worker and her mother does the household work. According to her parents, Mary was born normal, but two years ago they discovered that she had started to lose her eyesight. She apparently has a progressive eye disease and her sight is gradually growing worse. She is in first grade at school and her eye disease makes it difficult to keep up with her lessons. The only option in class is to sit in the front that does not help much as it is still difficult for her to read from the books. Without an eye operation she most likely will have to leave school before completing primary grades, facing the prospect of being blind before she reaches adult age. Her parents have taken her to the doctor and they have been told that the disease is curable through an eye operation, something that would be manageable for a family that is well off. And once a year medical experts from Europe visit the regional hospital, so there is a possibility for an operation. But there are many in need of the family's scarce resources and even if the operation was not expensive, by any standard it still costs money that the family can ill afford. A way out for the family is to find a sponsor in order to pay for the treatment. Until now, however, they have not succeeded. In the meantime, Mary is gradually losing her sight. Another option for Mary is to stay at home and make herself useful to the family by helping her mother with the household work and looking after the animals. The hut is small, with only a small hole in the wall to let the day light in, and the oven is an open fire on the floor in a corner. Because of her eye impairment Mary cannot see to work in the dim light inside the hut and her mother is reluctant to make her cook as there is a risk that she could stumble and fall into the open fire. Outside she is blinded by the bright sunlight which makes it difficult for her to manage. Consequently, there is not much she can do. She is slowly becoming more and more passive. Her prospect is to remain dependent on her parents, or maybe her siblings, for the rest of her life.
The household as a resource system
Like most other low-income countries Kenya does not have a comprehensive public welfare system that grants protection when an individual is not able to care for him/herself, which, for instance, is to be found in most European countries. In general, the family is the social security system that tends to the individual. Many of the informants in this study have supportive families. In addition to the parents, elderly brothers and sisters devote themselves to lifelong care for a disabled sibling. In the wake of the HIV/AIDS epidemic, many grandmothers (p.167) have been left to take care of their orphaned grandchildren, with a disabled child representing a particular challenge and cause for concern.
By focusing on the complexities of the difficult situation for poor people with disabilities we have seen the importance of applying a family perspective and a focus on ‘the disabled household’ (Ingstad, 1990), whether this be the spouse or the extended family. By focusing on the complexity of the many barriers and the situation of the household of which the individual is a member this enables us to better understand the pattern of elements that creates what is called the ‘evil circle of poverty and disability’, thereby also, hopefully, enabling us to propose how this circle could be broken.
We look on the household as a system in which resources are distributed in relation to the needs of the members in order for the household as a whole to be viable (Ingstad and Saugestad, 1987). Viability of the household means coping in a way that takes care of the needs of every member. With an impaired household member, the resources of labour capacity, time and capital – income, land and livestock – have to be redistributed. This redistribution affects every member of the household. Thus, rarely will a person with an impairment fare better than the average household member. Generally, regardless of the kind of rehabilitation efforts made, poor households make poor disabled people. A household with a disabled person will call for a rearranging of the resources in order to cope with the challenges of care and to restore viability. There is a real risk that the vulnerable viability of an already poor household will tip the balance.
So the situation of the family group must be reflected in all initiatives that are carried out to improve the situation for people with disabilities. The initiatives, whether policies for people with disabilities, implementation of activities directed towards the individual, or sensitisation of the general public, should be founded in a comprehensive perspective in order to be sustainable. When implementing specific activities directed towards individuals it is necessary to recognise that the family is the social security net for the individual. In countries without, or with poorly developed, public welfare systems, initiatives to help the individual should target the family as a unit. This perspective should accompany public welfare policies and initiatives by DPOs as well as other NGOs that are engaged in this field.
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