This is the first part of a series of blog posts examining the experiences of PWDs living with poverty in Uganda. This blog post describes how PWDs in Uganda understand chronic poverty and disability. It first asks what are their definitions of disability and chronic poverty then explains how PWDs see their relationship.
The 2003 report Chronic Poverty and Disability in Uganda is qualitative research that provides an insight into what Ugandan people understand by disability and poverty. The report provides an overview of many of the issues faced by PWDs living in poverty. The report opens by asking what is disability and who is disabled? These are the answers to those questions:
Evidence from the field revealed different, but complementary, types of definitions and conceptualisation of poverty. Different respondents defined disability in the following ways:Having defined disability, the report moves on to define chronic poverty:
- “You are disabled if you are missing any one of your limbs or body parts, or if one of your limbs is deformed” - Group of disabled persons in Ibanda.
- “A disabled person is one who cannot look after himself or herself due to physical or mental limitation”. - Disabled women in Iganga.
- “A person is considered disabled if any one of the senses that were given by God are missing. These may include lack of sight, hearing, touch or reasoning” - Group of Youth Kalerwe
The above definitions marry two important aspects: physical limitation and powerlessness (attitudinal). First they bring out the stereotypic view among some people that disability is the absence of a limb or that it is defined by a person missing “any part of the (normal) body”. It is a view that begins from a supposition that there is such a thing as a “normal physical outlay of a person”, and that any form that differs from this “norm” is disability.
- “Disability is when your life is not in your hands - when your physical or mental state is such that other people have to decide for you what to do, where to go, what to eat and who to associate with. You are just an object of pity, and whatever opinion that you give can never be taken seriously. Some people will treat you as if you are a child, even when you are well over 30 years”. - Disabled Cobbler, Kansanga, Kampala.
On the other hand, the definitions from Iganga and from Kampala (Kalerwe), of a disabled person being one who is not able to look after himself or herself, was echoed in Mukono and Mbarara. It emphasises the helplessness of people with disabilities with respect to livelihood and their dependence on others for survival. In one response in Kalerwe, one disabled person summed up this challenge by pointing out that “…. if you are disabled, and you are looked after by people who are poor themselves, there is no way you can break out of that poverty yourself, even if you had the will to”.
The definitions that were obtained seemed to focus on the medical model of disability, glaringly leaving out the social model that looks at disability as a condition in the environment and among society that impedes particular categories of people from accessing basic facilities and resources.
The concept of chronic poverty among disabled people was easily understood by all respondents that the research team interviewed. Various examples were given to illustrate this. The overriding concept was one of poverty that stays with disabled people for a very long time. Some groups of respondents argued that the period sometimes extended for up to 15 or 20 years or more. In Kamwokya and Mulago (Kampala) groups of disabled people observed that their (disabled people’s) failure to acquire education in their earlier years meant that they could neither build skills nor obtain formal employment opportunities. This, they argued, in turn “condemned them to perpetual income poverty”. Similarly, because of its menial nature, most informal sector employment was unsuitable for severely disabled persons or for particular categories of the disabled, such as the blind. As such disabled people were obvious candidates for being edged out of both formal and informal employment.What then is the relationship between disability and chronic poverty?
Elsewhere, in Iganga, Kampala and Mbarara disabled women respondents observed that they, as disabled people, were often unable to care for themselves and their children (when they had them), often resulting into disablement for the children as well. This was particularly the case for disabled women that lived off begging but who also bore children “on the street”. The result for such offspring was deprivation of social amenities, proper parenthood, psychosocial support and hence poverty.
Definitions and concepts of chronic poverty that were derived from various respondents are best summarised by the following quote from Nkokonjeru in Mukono District:
Obwavu obwolutentezi bwe bwaavu obutavaawo. Ekyalo kyammwe kyonna bwekiba nga kyaavu, nammwe muba baavu ebbanga lyonna. Obwaavu obumu buba buzaale. Abaana babuyonka ku bazadde baabwe, ate nabo nebabugabira ku baana. Ate bwoba nga tewasikira ttaka, oba nga toil mukulembeze oba mukulu wa kika, ate nga tewasoma, era nga n’ekika tekikwenyumirizaamu, okwo bwogattako obutakola, awo obwavu buba butuuse okukuluma emirembe nemirembe nti amiina.Kati nno jjukira nti omulema tasikira ttaka. Waakiri basisa omwana wa mugandawo mu kifo kyokusisa omulema. Ate era omulema taweebwa bukulembeze. Ate ekirala abalema tebasoma. Kati obunkuseere n’obwavu kakongoliro obusingako awo obusanga wa? - Group of disabled people in Nkokonjeru Providence Home, Mukono.The above conceptualisation brings to light the issue of multi-dimensionality and compounding factors in determining the poverty circumstances and status of disabled people. Seen from the point of view of the “key capitals” - natural (land?), human (education/skills?), social (networks and confidence of family members in disabled person), and political (opportunity to lead others), one may argue that it is the depletion of all the capitals that further entrenches disabled people into poverty.
(The words above are translated into English).
Chronic Poverty: Chronic poverty is that poverty that is ever present and never ceases. If the whole of your village (community) is poor, then all its residents will be perpetually poor. Some poverty passes from one generation to another. (It is as if) offspring suck it from the mother’s breast (inherited), and they in turn pass it on to their children. IF you did not inherit land; And you are not a political leader; And you did not go to school (no education); And your relations do not feel proud of you; THEN poverty will bite you for ever and ever - amen Now remember that a disabled person cannot inherit land. A brother’s child may even be preferred in inheritance if he is not disabled. Similarly disabled people do not get to leadership positions, and most are not even educated. Where else can you find this dire poverty and pauperism? - Group of Disabled Women in Nkokonjeru Providence Home, Mukono
Having defined disability and chronic poverty, respondents were asked to describe the relationship, if any, between chronic poverty and disability. A clear relationship was established by groups of disabled people in Mbarara, Kampala and Mukono,between disability and chronic poverty. Most argued that the two are mutually reinforcing, as captured in the following quote from a disabled youth from Kansanga in Kampala:
Obwavu n’obulema kyekimu, era bikolagana. Bwoba omulema oteekwa okuba omwavu, kuba tewali kyosobola kwekolera ate era n’embeera tekuganya. Abo abalema abasobola okubaako kyebakola beebatono ddala, ate mpozzi nga bali mu bitundu bya bibuga. Omulema tosobola kulima kuba tolina busobozi, ate tosobola kukola mirimu gya kkalaamu kuba tewasoma. Bwoba omwavu kyenkana olemala mu byonna - omubiri n’omwoyo. Tosobola kweriisa, era bwoba n’abaana bagongobala bugongobazi olwendyambi. Ekivaamu nga nvunza mu bigere ne ku ngalo. Ekiddirira kufuuka masikini na bulema. - Ahmed Kimbugwe and family , Kansanga.
English Translation: “Poverty and disability are similar and mutual. If you are disabled you must be poor, because you are incapacitated and cannot look after yourself, yet the conditions around you (environment) may not be favourable. You cannot grow crops because you are physically weak to cultivate. You also cannot do skilled work because you did not go to school. If you are poor, it is similar to being disabled in many ways - body and soul. You cannot feed yourself, and if you have children, they all become disfigured and physically disabled due to bad feeding (malnutrition and under-nutrition). The next thing you see are jiggers in one’s feet and fingers, followed by pauperism”. - Ahmed Kimbugwe and family , Kansanga.
In Ibanda (Mbarara) and Gamba (Mukono) disabled people pointed out the very limited range of opportunities that are open to them, either because of discrimination, or lack of skills, or simply absence of an enabling environment. At the Ibanda School for the Deaf, for example, it was pointed out that many deaf children were unable to get to schools simply because there were no teachers of deaf children. Similarly physically disabled children who lacked assistive devices could not access schools, and even when they did the attention that was given to them was not adequate enough to keep them in school. As a consequence, many disabled children grew into illiteracy, absence of skills and totally alienated from the socio-economic development of other peoples. This, they argued, was a clear recipe for perennial poverty.
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| Paul Tibaboneka and Theopista Babilaba at their home in Naluko village, Nabitende Sub-county, Iganga District |
What does it mean to be an impoverished, elderly, disabled and blind couple?
Only Paul Tibaboneka and Theopista Babilaba, both residents of Naluko village in Nabitende Sub-county, Iganga District, can tell the joy or sadness that they have rode through the years. The couple is a signature feature for those seeking for direction of any place in the area surrounding their semi-permanent house.
It is not alien to hear people saying: “That place is just next or after the blind couple or bamuzibe [in reference to their lack of sight]”. At 60 years, Tibaboneka can just second guess how his wife looks now ever since he got a visual infection last year that gave him permanent blindness.
His wife, in contrast, does not have a single idea of how his husband looks like since her blindness is a childhood problem.
Their defects have spread through the family’s core and are visible among some of their children and grandchildren.
The couple spends much of their time seated helplessly seeming to wonder when their daughter, who does odd jobs, will get back home to whet their knurling stomachs. Their semi-permanent house seats on a small piece of land inherited from Tibaboneka parents.
Babilaba became blind at childhood when she was about eight months old.
Her husband who looks frail seems to be getting weaker everyday but holds onto her as a strong consolation that gives him the energy to push him on.
Tibaboneka got crippled after he fell ill immediately after he had married Babilaba, who was already blind.
“I became crippled at about 22 years shortly after marrying her. This is when we started suffering,” he throws us back into the couple’s youthful years.
The family seems to lack everything from food, medicine; beddings are scarce resources in their household.
To add insult to injury, the family has no pit-latrine but such reality is out of their reach as seem to blame their misfortune on evil spirits in their clan.
The couple had been blessed with three children but all had disabilities.
Two of them have since passed on but Alayisa Nanangwe, who quit her marriage to look after them now holds their hope together. She is 37 and has four children but three of these are physically disabled.
From her casual work, she looks after herself, her children and the seeming frail parents.
“Life is hard for us and as you can see, it is already lunch time but I have not yet got food to prepare. I am from working in somebody’s garden where I have been paid only Shs1,000,” she says with a twinge of poverty and sadness written on her face.
The misfortunes in this family seem to grow on and as we learn after the one-hour we have been talking that the couple has urinary problems but with no medication.
Babilaba has fistula while her husband can hardly pass urine.
Steven Mudhasi, who lives in the neighbourhood, narrates this families story with a sad face, saying it is really hard to explain what they go through.
“Most of the days they sleep on empty stomachs. It is their daughter who tries to look for food but nothing much is done given the fact that she also has disabilities,” he says.
But with a fighter’s spirit its only God who can change this family’s story as they seem to be held together by optimism that better days are probably ahead.
The above article picks up on the sense of helplessness used to describe disability in the research article. Furthermore the chronic poverty seems to overshadow the whole of their lives. It is almost as if the writer of the article had read the words of the research above.
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