Poverty and Disability in Uganda 6: Conclusion

This is the final part of a series of blog posts examining the experiences of persons with disabilities (PWDs) living with poverty in Uganda. The basis for this series of blog posts was the 2003 report Chronic Poverty and Disability in Uganda which is a qualitative study of chronic poverty and disability. The report gives insights from PWDs and their carers. It shows the complex relationship between poverty and disability in Uganda. It also offers insights from the people affected by poverty and disability.

Poverty and Disability in Uganda 1: Definitions provided definitions of poverty and disability drawn from the experience of PWDs and their carers. The definitions of disability brought out 3 important points:

• Disability is a departure from the norm, there is such a thing as a "normal" body. A PWD departs from the "norm" in that they have a limb missing, or they cannot look after themselves because of a limitation, or they are not in control of their lives. 
• There is a sense of helplessness because something is missing thus the disabled person requires help or is an object of pity. 
• The definitions also relied on the medical model in that there is such a thing as a normal body that if the body was fixed it would be normal again. 

Chronic poverty was defined as poverty that lasts for a long time and is multidimensional in nature. Besides being a lack of access to political power, land, social networks and employment, poverty is further compounded by lack of access to education and health.

Chronic poverty interacts with disability. To bring out this point 2 examples was given:

1. For women with disabilities, their poverty may lead them to beg. The begging may lead to a child being born on the street becoming disabled because they cannot access proper care. 
2. Disability may prevent someone from getting a proper education so they always have a lack of knowledge and may never be able to improve themselves.

Quite simply poverty and disability reinforce each other. 

Poverty is often about living in a resource poor environment. Like for instance when there are no teachers available to teach deaf children. Deaf children are condemned to a life of illiteracy, socioeconomically alienated from society with an absence of skills they are unable escape poverty.

Poverty and Disability in Uganda 2: Emloyment and Marginalization notes that the types of work performed by PWDs were often menial or unskilled at the marginal end of labor. Work was often closely related to the work able bodied people did in the area where they lived.

Marginalization is caused by attitudes that exclude, isolate and cause neglect. This leads to a failure to access resources. Which is further compounded by a fundamental ignorance about the causes of disability which affects all levels of society. For instance when disability is blamed on witchcraft it leads to marginalization. There is also a deep seated fear of disability. The medical profession is often given little training in working with PWDs during their training.

Financially, PWDs are more often denied loans because managers don't think they will be able to pay them back. In contrast, PWDs in rural areas prefer to be given grants where money doesn't need to be paid back, they prefer the age old system of handouts.

Exclusion that leads to marginalization and takes many forms:

• Access to facilities like markets not being conducive to PWDs. 
• PWDs need to take assistants for their work causes increased overheads. 
• PWDs have to also consider the additional cost of transporting equipment they required like wheelchairs. 
• PWDs are often excluded from doing heavy manual work out of pity because it is considered that PWDs should not be doing this kind of work. 
• PWDs living in poverty do not own radios and are not able to benefit from public information messages. 
• High school fees are a barrier to education.

Attitudes of exclusion and marginalization also affect Children with disabilities (CWDs) and adolescents with disabilities, for instance:

• CWDs are denied education because some parents feel ashamed of their children and did not send them to school. 
• Often a lack of trained staff prevents the inclusion of CWDs. 
• CWDs are excluded from some classes because they are upstairs. 
• CWDs are often the victims of stereotyping, for instance being considered as only good for unskilled menial tasks. 
• Disabled adolescents are emotionally vulnerable, they become easy targets and partners for people with HIV/AIDS.

Disabled women are particularly vulnerable and are often excluded and marginalized for the following reasons:

• They lack permanent marriage partners
• They are unable to defend themselves if they are attacked, they are sometimes raped.
• They may themselves be seeking to have a child at any cost and with anybody able and willing to father the child.
• They are unable to make firm decisions on matters of sexuality due to powerlessness resulting from various forms of social discrimination
• Many are made to believe that they are “simply being helped to satisfy their sexual desires”.
• Communication materials that are prepared on important health messages such as HIV/AIDS are either inaccessible or the mode in which they are transmitted unfriendly.
• They lack sensitisation on reproductive issues

The implications of marginalization through social exclusion mean missed opportunities in education and missing out on opportunities for development. It also means missing out on important information about health or government information. 

Condemned by Richard Hammond

In Poverty and Disability in Uganda 3: Women and Politics it was noted that poverty is becoming feminized, it is increasingly a problem for women. For instance women are often seen as the cause of disability and therefore responsible for bringing the curse of disability into a family when they give birth to CWDs. Disabled women and girls are seen as valueless because they are unable to cultivate the land, prepare food, clean the house or provide their own personal care. For such women no marriage is possible, hence no livelihood, which leads to a life of marginalization and exclusion. This point is made clearly(see Chronic Poverty and Disability in Uganda):

Since access to prime resources for survival, such as land, are through a husband or male relative, being a disabled girl meant at the outset that there would be no access at all to any important resources.

Disabled co-wives are often resented if other wives cannot come to terms with them. However, if the disabled woman is good at business there are no problems.

Ugandan society is patriarchal and a woman's role is defined through home making and bringing up children. As a result disabled women are more likely to be destitute, have neither a family nor the support network that implies. Someone commented:

“one sure way of entrenching poverty in your household, particularly if you are a disabled man yourself is to marry a disabled woman”. 

An inevitable result of stereotyping is that disabled widows will have to bring up children on their own because it is assumed that all their children must be born out of wedlock.

Politically the views of disabled people are often ignored and seen as being of little importance. PWDs do not have well formed organisations to represent them at village, parish and sub-county levels. PWDs are not immune to exclusion and marginalization within their own ranks. Many unions of disabled people are led by PWDs with minor disabilities. This leads to further exclusion within the disability community.

Financial concerns of PWDs are not taken seriously at political meetings. Once money is allocated in a budget, disabled councilors raising further money issues would be rebuffed because a budget already exists. Money voted for PWDs seldom gets to them. 

Political representatives of PWDs are often unclear in what direction they should work. Budgeting therefore tends to follow traditional lines. All this amounts to a missed opportunity for disabled people to have their issues mainstreamed.

PWDs are often stereotyped as being helpless, unworthy and “lacking in substance”. Further all disabled people are envisioned as physically handicapped, ignoring the diversity of disability. 

Certain groups of disabled people face more marginalization and exclusion. These are:

• Women with disabilities
• Children with disabilities
• People with severe mental and intellectual disabilities
• People who are disabled by epilepsy
• Elderly people with disabilities
• Youth with disabilities
• People with multiple disabilities

Poverty and Disability in Uganda 4: Children and Mental Health looked at the problems of CWDs. Women are seen as responsible for bringing the cursed CWD into a family. The child is considered unfortunate and in need of a cure. Many disabled children born to chronically poor families consequently grow up believing they are an economic burden. Such children are often undervalued and left at home. They are vulnerable to physical, sexual and emotional abuse. CWDs are less likely to go to school, go on outings or do chores around the house. They become disempowered adults. Consequentially they lack selfesteem and confidence which contributes to unemployment and poverty.

Disabled children are vulnerable to ignorance and superstition. 

The official strategy of education is unsuccessful because trained teachers do not exist and the funding is extremely limited.

The mentally disabled do little better. There is no clear policy for dealing with the mentally disabled. The mentally disabled are vulnerable if they cannot access professional institutions. Anecdotal evidence suggests that gross human rights violation exist inside and outside institutions. Poor community support often results in the mentally disabled becoming homeless and living on the street. The mentally disabled are vulnerable in the judicial system. There evidence is often not seen as credible. They often do not have advocates that can speak for them.

Poverty and Disability in Uganda 5: Barriers provided a summary of obstacles to participation which is well worth a read. It is important to consider each disability separately because there is no one size fits all solution to the problem. It is clear that much more study is required to understand the intricate interplay of chronic poverty and disability.

In conclusion, this study has shown that exclusion and neglect of PWDs cause the greatest harm. The attitudes of exclusion run through all strata of society. It is important to educate and inform as to the needs of PWDs. Put quite simply there is an overwhelming sense of helplessness felt by PWDs. Chronic poverty seems to overshadow their lives.

The most important point made by this report is that PWDs don't need to live in poverty. It is the attitudes of discrimination and prejudice that lead to marginalization and exclusion. Education changes attitudes, education to raise awareness of all aspects of disability throughout the whole community is a valuable tool for fighting attitudes that cause discrimination and prejudice.