Defining disability

This definition of disability from a 2014 article, Access to buildings: How People With Disabilities struggle, gave me cause to think:

Disability, according to an online dictionary, is any damage to muscles, nerves, skin, or bones resulting into difficulties in moving about, or performing activities such as dressing, eating, or cleaning.

No definition of disability will ever be complete. There will always be room for improvement. Here is what some persons with disabilities (PWDs) in Uganda had to say (see Poverty and Disability in Uganda 1: Definitions):

• “You are disabled if you are missing any one of your limbs or body parts, or if one of your limbs is deformed”.
• “A disabled person is one who cannot look after himself or herself due to physical or mental limitation”.
• “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”
• “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”.

The United Nations Convention on the Rights of Persons with Disabilities defines disability like this:

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

The Ugandan Persons with Disabilities Act 2006 gives the following definition:

"Disability" means a substantial functional limitation of daily life activities caused by physical, mental or sensory impairment and environment barriers resulting in limited participation. 

How do you define disabilities?

These are the words I use most on Facebook

It made me happy to see this. These are the words I have used most on Facebook.

Transforming the Lives of Deaf People

This short video shows how sign language has transformed the life of a young boy, Patrick, in rural Uganda. It is a follow up to a longer documentary from Channel 4 in the UK, which you can see here: See how sign language can transform lives.

Before learning sign language Patrick and his father faced insurmountable communication barriers. Patrick was disabled by the barriers he encountered. He had low selfesteem, was isolated and did not contribute to society.

With sign language he has an impairment but he has ceased to be disabled.

Education and Disability: Uganda and the World

Persons with disabilities (PWDs) are adversely affected by negative attitudes like stigma and prejudice (see Summary of findings of the Uganda Disability Review Part 1 of 2). Stigma and prejudice severely limit educational opportunities.  Moreover PWDs score significantly less across the board on all socioeconomic indicators: That is education, employment and social class (see Poverty and Disability in Uganda). In opposition to this an Overview of Poverty in Uganda and Poverty and Disability showed that small gains in education have had important benefits on reducing poverty. Moreover education is key to overcoming stigma and prejudice. Education then is a priority issue for PWDs  throughout the world.

The United Nations Educational, Science and Cultural Organization (UNESCO) published the Education for all Global Monitoring Report in 2014. This report is a summary of what is known about the effects of disability upon education. It opens noting that stigma and discrimination related to disability, gender, wealth, language ethnicity and location are holding up progress towards education for all (EFA). The report continues:

Ensuring that all people have an equal chance of education, regardless of their circumstances, must be at the heart of new goals post-2015. No person should be denied access to good quality education because of factors such as disability.

The report notes that there is often a lack of data about disabilities, and where there is data it is not linked to educational outcomes. It gives the following information about disabilities worldwide:

• Globally 93 million children under the age of 15 (5.1% of the world's children) were living with moderate or severe disability. 13 million or 0.7% of the worlds children live with severe disabilities.
• About 80% of children with disabilities (CWDs) are in developing countries. The number of moderate or severely disabled children is comparatively higher in sub-Saharan Africa.
• The scale of disabilities is often under reported.

The following information is drawn selectively from the summary:

Children with disabilities are less likely to complete primary school

• In Malawi and the United Republic of Tanzania, having disabilities doubles the probability of children never having attended school, and in Burkina Faso it increases the risk of children being out of school by two and a half times. 

Having a parent with a disability can also affect a child’s chances of going to school 

• Children whose parents have disabilities often face tensions between schooling and care demands at home. Having a poor parent with a disability increases the likelihood of 7- to 16-year-olds never having been to school by twenty-five percentage points in the Philippines and thirteen points in Uganda – a reminder of how poverty, disability and education interact.

Those with disabilities are more likely to be illiterate 

• In Uganda in 2011, around 60% of young people with no identified impairment were literate, compared with 47% of those with physical or hearing impairments and 38% of those with mental impairments. 

• In the United Republic of Tanzania, a survey found that the literacy rate for people with a disability was 52%, compared with 75% for people without a disability 

Poverty is both a potential cause and a consequence of disability

• In several countries, the probability of being in poverty rises in households headed by people with disabilities. In Uganda, evidence from the 1990s found that the probability was as much as 60% higher. 

• Girls and women already facing gender barriers to education are also most likely to be affected by poverty. These disadvantages will be further compounded by disability when it comes to access to education. Better data and analysis is needed in order to address this inequality. 

• Those with disabilities are much less likely to be working. Other family members may also be out of work (or school) to care for them. Inadequate treatment, along with poor families’ inability to invest sufficiently in health and nutrition, reinforces the problems people with disabilities face.

• Very few young people in Kenya living with disabilities study beyond primary level. They face constraints in employment because of their low level of education, little or no adaptation of their workplaces, and limited expectations among families and employers.

• In Malawi and Swaziland, less than half of those aged 15 to 29 with disabilities had ever been to school, and employment rates among 15- to 29-year-olds were under 3% in Swaziland and 28% in Malawi.

• Kenya’s 2008 National Survey on Persons with Disabilities found that 3.6% of youth aged 15 to 24 had disabilities. In the week preceding the survey, only 8% had worked for pay, and 14% had worked on the family business. Over 50% had not worked.

• A pilot survey conducted in 2009 in five urban areas of Sierra Leone found that 69% of people living with disabilities had no income at all, and 28% were living in households with no income. Youth aged 15 to 25 with disabilities were 8.5 times less likely to work than those without disabilities

Different disabilities create very different education-related challenges

• In Uganda, dropout rates are lower among children with visual and physical impairments than among those with mental impairments 

• In Burkina Faso, children reported as deaf or mute, living with a mental impairment or blind were far less likely to be enrolled in school than those with a physical impairment. In 2006, just 10% of deaf or mute 7- to 12-year-olds were in school.

Reaching children with disabilities will require increased financing.

• Additional resources are needed to provide teachers with specialized training and children with specially designed learning materials to realize their potential. Families may also require additional financial support. One study in Bangladesh found that the parents of children with disabilities faced costs for aids, appliances and health care that were three times the average household budget for raising children

Education policies can counteract marginalization caused by disabilities:
1. Inclusive curriculum can help break down barriers faced by children with disabilities in the classroom.

• Integrating children with disabilities into the standard education system can break down the segregation that reinforces stereotypes. Moreover, special schools are often chronically underfunded and lack either skilled teaching staff or the equipment needed to deliver a good education. But integration is not a panacea. Children with severe disabilities may require highly specialized support.

• Research in Eastern Cape, one of South Africa’s poorest provinces, found that inclusive education produced significant gains, ranging from improved physical access to support for specialized teaching practices and increased admission of learners with disabilities. 

• In Ethiopia, with the support of the non-government organization Handicap International, a school for deaf students operates as both a special school and a resource centre, supporting education for deaf learners in other schools and the development of sign language.

2. Teachers need support to reach children with special needs:

• Some non-government organizations and governments, including those of Uganda and the United Republic of Tanzania, have supported ‘itinerant teaching’ approaches, which enable specialized teachers, experienced in teaching children with disabilities, to reach a larger group of pupils in satellite schools, and support and train teachers.

3. Hiring more teachers with disabilities can reduce marginalisation of children in the classroom

• Teaching often fails to recruit enough people with disabilities. Mozambique has been running teacher education programmes for visually impaired primary school teachers for more than ten years. Communities have become familiar with their children being taught by visually impaired teachers, resulting in a positive change of attitude and helping create a more welcoming environment for teachers and students with disabilities.

4. Schools should be physically accessible for children with disabilities

• Many schools, particularly in remote rural areas or in slums, are physically inaccessible to some children with disabilities. In 2005, just 18% of India’s schools were accessible to children with disabilities in terms of facilities such as ramps, appropriately designed classrooms and toilets, and transport. 

5. Better monitoring of disabilities is necessary to assess the best way to address them

• A 2008 survey in the United Republic of Tanzania provided a detailed profile of impairments across the country. It found marked regional disparities and a higher incidence of disability in rural areas.

Breaking down educational barriers in Uganda

The above information is a summary of the situation in the world for CWDs. There is very little knowledge about the status of CWDs receiving education. The following newspaper report from 2015 by the National Council for Children in Uganda, Don’t deny children with disabilities quality education, summarizes the situation for CWDs in Uganda:

National statistics indicate that 80 per cent of childhood disability is a result of preventable causes, especially immunisable diseases and poor treatment of common illnesses. And 7 per cent of the total population of Uganda has a disability.
Basing on the current projected population of about 34 million Ugandans there would be about 2.5 million children living with a disability. Accordingly, the majority of these children living with disabilities (CWDs) live in rural areas often hidden away from society, abused and exploited!
During a routine monitoring exercise on the situation of children, National Council for Children (NCC) discovered that some parents have denied CWDs access to quality education, and protection at home. Leaders in the communities have not played their role in providing appropriate services for the rehabilitation of CWDs. Very few of the CWDs are able to access education within inclusive settings in regular schools while only about 10 per cent access education through special schools and annexes.
This, therefore, implies that the majority of CWDs stay home without any form of education! This type of situation, therefore, calls for urgent attention from the relevant duty bearers.
NCC further calls for scaling up interventions on children with disabilities. We also call for a tax-waiver on facilities for CWDs such as: the braille, the tri-cycles, the white – canes, information materials and logistics for sign language, among others.
The facilities are costly making it unaffordable to most parents to purchase for their children with disabilities.
Martin Kiiza, National Council for Children

Education and disability interact in a complex way. This issue is compounded by their being no one single approach to educating CWDs. Many problems are not clear because of lack of access to good data. However there are several findings that can have an effect:

• Policies of inclusive education are vital for counteracting the marginalization and segregation that CWDs experience. 
• It is vital that teachers working with special needs children get support in the field. 
• Employing more disabled teachers has important effects.
• School need to be more accessible.

Many challenges remain, for instance in Uganda more than 50% of young people with disabilities are illiterate, rising to more than 60% for those with mental impairments. Progress in providing education for CWDs is slow but the situation is always improving.

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.

Poverty and Disability in Uganda 4: Children and Mental Health

This is the fourth part of a series of blog posts examining the experiences of persons with disabilities (PWDs) living with poverty in Uganda. Poverty and Disability in Uganda 1: Definitions provided definitions for poverty and disability drawn from the experiences of PWDs. Poverty and Disability in Uganda 2: Emloyment and Marginalization examined issues of employment, isolation, exclusion, fear and neglect. Poverty and Disability in Uganda 3: Wome and Politics discussed issues faced by women: Giving birth to a disabled child, having a disability and facing stereotyping. This blog post will look at the problems of children with disabilities (CWDs) living with chronic poverty.

We have seen how being a woman with a disability compounds the risk of living in poverty. Now consider the plight of a woman giving birth to a CWD. The 2003 report Chronic Poverty and Disability in Uganda gives the following case study:

Thrown out of marriage for having a disabled child.

Jaliya Namwanje is 35 years old, a mother of two sons. She was happily married to her husband (name not disclosed) when at five years one of their sons, Isma, suffered from a bout of Malaria, which later turned into cerebral malaria. For two years the family struggled with Isma. “We were admitted to Mulago for two years, but all was in vain. Despite some improvement, Isma became disabled, unable to talk or even hear. After being discharged from Hospital my routine changed since Isma needed much attention all the time. I was unable to continue working the same way I had done in the past. But my failure to work was resented by my husband who started insulting me and tormenting me with the words: “Move out of my house, have you ever seen a disabled person in our family? Take your child where it belongs.” “I did not believe that my husband was serious, though he kept on insisting and threatening to kill me. In the end he chased me out of our marital home, and asked me to take “my” son with me. But I was 6 months pregnant when all this happened. My husband did not care at all about my condition, or the condition of our disabled son.. So I went back to my parents in Luwero where I stayed until the baby was delivered. After delivery I returned to Bwaise, Kampala to try and earn a living. I rent a small and carry out petty trade business, selling roasted bananas and charcoal”. “I now take care of my two children without any assistance from their father. Isma is now in Ntinda School for the deaf where I have to foot Shs.80,000/= per term for fees. My other son, Isaac, is at Bat Valley Primary School”. “Ntinda School for the deaf has offered to teach us (parents and care givers) sign language so that we can ably communicate with our children, but I am unable to attend as missing work for long means there will not be food for us”. - Jaliya, Namwanje, Bwaise Disabled and Elderly Association

The above case study highlights how women are seen as responsible for disability. The CWD becomes a burden and a curse for the family. What is the Ugandan point of view of CWDs?

Motivation training sessions teach mothers how to care for their disabled children and give them an opportunity to make friends.

Most Ugandan society regards children with disabilities as “unfortunate”, in need of a health cure, incapable of performing all activities that other children are able to perform, and a burden on society, representing a ‘problem’ to be dealt with separately from other children’s issues.
The example of community frustration with the management of Nkokonjeru Providence Home in Mukono which encourages disabled children to grow their own food and to participate in activities that promote their livelihood is a case in point. Because many disabled children are borne into chronically poor families, such children grow up believing that their disabilities are simply an economic and social curse and burden on their families. Evidence from studies carried out by the Uganda Society for Disabled Children (USDC) reveal that disabled children are unable to defend themselves, are often alone at home, and are often undervalued by those around them makes them particularly vulnerable to physical, sexual and emotional abuse. Such children are also less likely than their siblings to attend school, to go on outings, or to experience situations where they have to solve problems or to contribute to household chores. As a result, they grow to be disempowered adults, unable to take decisions, solve problems or take the initiative. As a consequence many disabled children lack self-esteem and confidence which, in later adult years, contributes to high unemployment figures, and consequently to poverty.
Disabled children in particular are a vulnerable group in Uganda because the population’s attitude to disability is influenced by, among other things, ignorance and superstition. The official strategy for addressing disability among children is to educate the disabled in the formal education system and integrate them into local communities. The programme comprises two components: training specialised teachers and developing a nationwide network of district centres to assess children’s disabilities to ensure appropriate education and adequate support systems. However, funding for these activities is extremely limited.
Evidence from the field (Ibanda, Mukono and Iganga) indeed confirms that dependency, social isolation, rejection, vulnerability and powerlessness characterise the experience of disabled children. Many disabled children, especially adolescents, are exploited (including sexual abuse) and are discriminated, denied access to social economic activities. Confirming findings from Penny’s study on school access (2000), the current study also observed that children without disabilities are sometimes cruel to their disabled counterparts, nicknaming, punching, slapping, beating, teasing and bullying.

People with Severe Intellectual or Mental Disabilities do no better:

The study revealed did not come across any organisations working on the specific needs of people with severe mental/intellectual disabilities. Discussions with various professionals working with disabled people in the four districts revealed also that policy was unclear on how this category of disabled persons should be handled.
People with severe mental or intellectual disabilities are particularly vulnerable either when they are not able to access professional institutions, or during the period of transition from institutionalisation towards community-based services. Anecdotal information suggests that gross human rights violations exist both in and outside institutions for people with mental and/or intellectual disabilities, and yet for those housed in institutions a move from institutionalisation often results in people with severe intellectual or mental disabilities becoming homeless and living on the streets, with little or no community support. Chances are also very high that people with intellectual disabilities or mental illnesses are vulnerable when confronted with the justice system. Their testimony is often not taken seriously, they are not regarded as reliable witnesses and they seldom have access to advocates through whom they can speak.

With the above in mind it is interesting to consider this newspaper story about the educational achievements of a young boy, Bukoyo’s Tenywa proves disability is not inability:

IGANGA- Among the Basoga, it is believed that when hard times hit a disadvantaged or vulnerable person, they are like torrential rains that never cease.
The saying strikes a chord with 19-year-old Abdu Tenywa, the young man with a disability who scored 18 points in History, Economics, Islamic Studies and two subsidiary passes in ICT and General Paper to emerge one of the best students who sat for UACE at Bukoyo Secondary School in 2014.
Born to Mr Hussein Isabirye and Ms Fauza Nangobi, the first in a family of eight children was according to his mother born with very weak bones, which made it impossible for him to develop proper legs and arms.
Though he managed to start school at the age of six, Ms Nangobi had to carry him to the nearby St Michael Primary School for the entire lower primary education.
With time, he developed the ability to move on his own, but the legs never developed like normal ones. He walks like a person who is squatting.
At the age of 9, an acute onslaught of diabetes saw his father bedridden, a state in which he has stayed for the last 10 years.
With the bread winner down, the mother was forced to settle for selling pan cakes and farm produce to raise money for the children’s school fees and other needs.
“As you see my husband is down and I have been selling pan cakes and farm produce mainly maize and beans to get for him fees,” Ms Nangobi explains.
That Tenywa managed to study and sit for his UACE exams is testimony that she is putting up a great fight, but the leaking roof of the family’s house in Bulimira village in Busembatya Town Council is a stark reminder of the poverty in which the family still lives.
The family, which is largely dependent on agriculture to provide the bulk of its income, has a love-hate relationship with the rains.
Failure of the rains means diminished incomes, but it is at the same time with apprehension that they receive the rains because of the leaky roof over their heads. That will, however, not dampen the spirits of the family.
“I made it, I made it! Thanks be to Allah for His Mercies. Who am I to get 18 points?” he asks amid cheers from family members.
The headmaster of Bukoyo Secondary School, Mr Ali Kayuyu, attributes Tenywa’s success to hard work.
“We have a devoted staff who always try to give their all, but at the end of the day it is very important that the students work hard and in this case the student played his part,” he said.
Tenywa, whose life so far has been riddled with challenges, is keen on pursuing a law course, but uncertainty over the future still hovers over the family.
“My family is poor and now the remaining hopes are in government to give me a sponsorship at university. I need to do law such that I help vulnerable people like me to get justice,” he says.

CWDs are vulnerable. As soon as they are born they are stigmatized and seen as a burden. The woman that gives birth to a CWD inherits the stigma and prejudice of that birth. Moreover CWDs brought up in poverty often come to regard themselves as an economic social curse to their families. This has the effect of disempowering the child in later life. The newspaper article shows that a lucky few CWDs are able to battle stigma and prejudice to get a good education. Though after getting an education they still face the myriad challenges of PWDs discussed in this blog.

Poverty and Disability in Uganda 3: Women and Politics

This is the third part of a series of blog posts examining the experiences of persons with disabilities (PWDs) living with poverty in Uganda. In Poverty and Disability in Uganda 1: Definitions we saw how PWDs define disability and poverty and further how PWDs understand the interaction of poverty and disability. Poverty and Disability in Uganda 2: Employment and Marginalization looked the issues of employment, isolation, exclusion, fear and neglect. This blog post will look at issues that affect women, it will also consider the effects of politics and stereotyping on chronic poverty and disability.

The 2015 report Women in Poverty: The Key to Breaking the Cycle? notes that: "The feminization of poverty – or the growing number of women in poverty – has been ongoing for the past 4 decades. It means that the proportion of women in the world who suffer from poverty keeps growing and that it is becoming a problem that affects more women than men." It is hardly surprising that being a woman compounds the effects of disability and chronic poverty.

The 2003 report Chronic Poverty and Disability in Uganda talks about women who give birth to children with disabilities are seen as being responsible for causing disability. The report talks about these issues under the heading of feminization of disability:

(a) Disability a “curse” to the family: Among some people in three out of four districts (Mbarara, Mukono and Iganga) disability was considered to be “a curse” brought to the family through the woman (mother of the disabled child). Thus it was evident in these districts that if disabled children are borne to a family, not only does the burden of care fall on the shoulders of the woman, but she too is often blamed for bringing “kisirani” (a curse) to the family. In Mbarara and Iganga disability was believed to be “transmitted” by a mother, who was sometimes blamed for failing to perform some marital rites or simply “looking at the wrong people” during the course of pregnancy. The common remedy when a woman, therefore, produces a disabled child, is for the man to “find another wife (woman) who does not produce disabled children”.

(b) Disability diminishes a woman’s chances to marry: Disability for female children, it was observed, created additional challenges. Communities’ expectation that girl children will be married off at puberty to start their own life - working for their husbands and bringing forth babies - was noted not to hold for disabled girls. Having a disability often meant that one was unable to cultivate, prepare food for self and others, do household chores or even have personal care. This tended to “reduce the value of disabled girls” which further condemned them to exclusion and poverty. For such young women no marriage meant no livelihood and hence very marginal survival. 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.

(c) Disabled co-wives more resented than other women: In Iganga District it was revealed that disabled women who are married as second or third wives faced particular resentment from “first wives” who could not come to terms with a disabled person being their co-wife. Such disabled women, once they came to the household, faced intra-household exclusion and were at times discriminated against. The situation was not, however, the same for all disabled co-wives, especially those who were successful in business.

The report moves on to discuss the role of PWDs in politics. Following this discussion, the report moves on to discuss stereotyping and concludes with a discussion about women with disabilities:

Issues of political exclusion took on a slightly different dimension during the research. Disabled respondents from Bwaise, Mbarara and Iganga complained that they are rarely invited to community meetings, and on a few occasions when they are invited, their views are not taken into consideration. But there was also insufficient organisation of disabled people at Village, Parish and Sub-County levels, with the consequence that no discussed agenda were ever developed in a bottom-up manner. Indeed many of the disabled people that the research team talked to bemoaned the top-heavy nature of the National Union for Disabled Persons of Uganda (NUDIPU), arguing that its much acclaimed national profile was not matched with results on the ground.
Intra-disability politics was noted to be the other factor leading to confusion and hence exclusion of particular categories of disabled from the mainstream of disability politics. Many disability unions, especially at district level, were led by physically disabled persons. Most of these were themselves people with very minor disabilities. This relegated people of other disabilities to second rate consideration in the activities and programmes developed by the unions. As a result many disabled people who are not physically disabled generally feel that there is marginalisation even withing the disability movement itself.
Given the now much acclaimed affirmative action for disabled people it was assumed that articulation of disabled people’s needs in existing governance structures through disabled people’s representatives had now taken root, and was beginning to yield positive results. The reality on the ground was rather different. In nearly all sites that the study team visited disabled councillors were unclear about the role that they were supposed to play. For many preoccupation was with what appeared like “peripheral issues” in disability, such as obtaining some mobility appliances for members (Gamba, Mukono and Ibanda, Mbarara), or having some money voted for supporting disabled persons in undertaking their livelihood (income generation) activities (Iganga). Once a vote was created in the Local Council’s budget, any disabled councillor trying to raise an issue regarding the welfare of their constituents would be quickly rebuffed with such words as: “your budget already exists - use that”. Sadly, too, even when votes have been created there is little evidence to suggest that such monies are ever realised.
The limited focus by disabled people’s councillors, has led to budgeting for resources at the local level to continue to be carried out in traditional fashion. Focus has been on the same old priorities, the only difference now being that some monies are voted for disability. In addition the monies voted for disability have not only consistently been negligible but their expenditure focus has also been peripheral. Popular expenditure items include “celebrating the day for the disabled” and awareness raising workshops for disabled people. The missed opportunity at the political level is for issues of disabled people to be mainstreamed into all aspects of planning and budgeting, regardless of whether a vote on disability exists or not.
An important aspect of exclusion for disabled people was noted to be in the justice system. While the law does not deliberately exclude disabled people, in practice many are excluded from having a fair hearing. The research team observed that in nearly all lower courts there were no sign language interpreters, which rendered such courts inaccessible to deaf persons.

Stereotyping disability: A recurrent finding in all districts that the research team went to was that disabled people were not only being lumped together as one homogeneous group that needed similar assistance, but that most were also stereotyped as helpless, unworthy and “lacking in substance”. First, the homogeneous lumping together of all disabled people envisioned physical disability, mostly of those challenged by mobility, walking with crutches or in a wheelchair, as the central definition of disability. This perception completely ignored the diversity of disability and the variety of needs experienced by people with different types of disability. Even disabled people’s organisations at both grassroots and national level tended to downplay or even be unaware of the diversities that exist among people with disabilities. Similarly some categories of disabled people experienced greater exclusion. People with different disabilities faced different levels of exclusion. This had implications not only for how disabled people organise themselves or seek services, but also for specific targeting. Categories of disabled people that faced greater exclusion among others include:

• 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

Women with Disabilities: Ugandan society is still very patriarchal and discriminatory. Although attitudes are changing, women’s social role is primarily defined through motherhood and homemaking. With little or no opportunity to live up to the demanding ideals of womanhood that are imposed by society, disabled women experience more discrimination than other women. As a result of exclusion, disabled women are more likely to be poor or destitute and also have a lesser chance of founding a family or benefiting from social capital and protection that are often associated with family relationships. Asked for an opinion, disabled men in Namulesa, Mukono asserted that “one sure way of entrenching poverty in your household, particularly if you are a disabled man yourself is to marry a disabled woman”. Thus the stigma of disability, its myths and fears are likely to increase women’s social isolation in society, and hence poverty.
But women with disabilities, especially widows, are also more vulnerable to poverty because in addition to having to look after their children single-handedly, such children have fewer opportunities for inheriting properties since they would be considered to have been borne out of wedlock.

Margaret was stricken by polio in childhood and has no use of her legs. She moves around by crawling on hands and knees... She was married, but her husband has most likely left her... She has three children aged 17, 13 and 11, all of them able-bodied.

This section of the report highlights the issues for women with disabilities living in chronic poverty. It further discusses issues of PWDs in politics and the stereotyping of disability. Women - whether disabled or not - must face the stigma of giving birth to a disabled child. This quote about women with disabilities sticks in my mind: "one sure way of entrenching poverty in your household, particularly if you are a disabled man yourself is to marry a disabled woman”. This article Disabled women remain largely ignored by society, sums up the position of disabled women in Ugandan society:

If you are not a disabled woman, pray to God that you remain that way for the rest of your life. You will have been saved the double discrimination which disabled women face in this country.
Generally speaking, disabled persons in this country suffer discrimination from all sectors of society. They are also more likely than their able counterparts, to live in abject poverty and exclusion. While this is true for them all, disabled women suffer double discrimination of being women and disabled women. This double discrimination makes the achievement of the Millennium Development Goals a far cry for this segment of our society.
If a woman is sighted on wheelchair, she is looked upon with condescending pity, if those women do not use a wheel chair, it is assumed that she is not disabled, and if she uses a wheel chair and still has some mobility, it is assumed that she does not really need it in the first place.
It is shocking that in the enormous list of sub-groups of the disadvantaged population, seldom is any mention made of disabled women. Disabled women, therefore, comprise one of the most neglected, if not, almost totally ignored segment of the society. Being a woman with physical disability can be very challenging. Though many are affected by physical disabilities, there is little understanding of their feelings and concerns among the population as a whole.
The first major limiting factor responsible for their plight is lack of accurate data on the extent of disabled women in the population provided in recognised local sources or international data for one to appreciate clearly why and how disabled women are at greater disadvantage compared with disabled men; in this scenario of data gaps on the nature and the extent of disability, sex disaggregated data is even more difficult to obtain. As a result, disabled women remain invisible in the arena of planning, formulation of policies, and programmes of poverty eradication and development.
While the representation of disabled persons in our Parliament should be lauded as a major step, this is downplayed by lack of data or any serious research which seeks to capture the voices of the poor in decision making and policy implementation needed to shape the destiny of the country.
Then we have the issue of lack of transportation for disabled persons which limits their accessibility to education, health, employment and leisure activities. Disabled women remain often isolated in their homes. They are also discriminated when it comes to marriage, being unable to have sufficient exposure to potential suitors and who, after all, are always on the lookout for able-bodied and hardworking women.
They are perceived as a problem rather talented people with creative minds who can make a contribution to development. We must realise that continuing to deny women with disabilities their rights is not acceptable. The United Nations Convention on the Rights of Persons with Disabilities of 2016 in Article 9 requires countries to identify and eliminate barriers and obstacles to accessibility and to ensure that people with disabilities can regularly and conveniently access transportation, public faculties and services, and information and communication technologies.
Article 9 wants these persons to live independently and participate fully in all aspects of life, which cannot be possible where issues to do with transportation are ignored.

This part of the survey of disability and poverty in Uganda discussed  various issues associated with women and disability. Being a woman and disabled is significant, but for a non disabled woman giving birth to a child with a disability can lead to chronic poverty. This section also noted how the opinions and contributions of PWDs are consistently undervalued and ignored. It also brought to life the consequences for PWDs of negative stereotyping discussed so many times in this blog.

Poverty and Disability in Uganda 2: Employment and Marginalization

This is the second part of a series of blog posts examining the experiences of persons with disabilities (PWDs) living with poverty in Uganda. The blog post Poverty and Disability in Uganda 1: Definitions presented definitions of disability and poverty. This post begins to investigate the complex interactions that link chronic poverty and disability. The basis for this investigation is the 2003 report Chronic Poverty and Disability in Uganda which is a qualitative study that discusses the experiences of PWDs and their carers in Uganda. 

This blog post begins by looking at one of the major drivers of chronic poverty, employment; then looks at exclusion and isolation. Other drivers of chronic poverty and disability will be discussed in subsequent posts. What work activities do PWDs do?

Overall, the respondents that the research team talked to in Kampala and the rural districts observed that the type of activities that disabled people carry out in pursuit of their livelihoods differ for urban and rural areas and between men and women. They also differ depending on the nature of disability that a person faces. In the majority of cases, however, the activities were closely related to what able-bodied persons do in similar geographical areas, although it should be added that involvement often tended to be at the marginal ends of the activities in question. In some communities where the growing of grains was pronounced, such as in Iganga for example, disabled people were sometimes confined to “keep birds away from eating seeds put out for drying”. Similarly, in urban areas a number of “disabled entrepreneurs” stopped at repairing shoes at street corners. Table 1 below summarises the activities that disabled persons carry out, as recorded by the research team.

Table 1: Activities carried out by disabled persons

Nature of disability	Urban (Kampala)		Rural (Mbarara, Mukono and Iganga)
	Male	Female	Male	Female
Blind	-Begging -Switchboard operator	-Petty Trade -Handouts	-Agriculture -Crafts making	-Agriculture -Handouts
Deaf	-Carpentry	-Left at home	-Casual Labour	-Left at home
Physically Handicapped	-Petty trade -Shoe making/ repair -Welding -Carpentry -Begging	-Tailoring -Home/roadside selling -Hand crafts	-Agriculture	-Agriculture -Petty trade -Hand crafts

Many PWDs experience discrimination. An important thread in the study was the experience of marginalisation. The study continues:

Exclusion, isolation and neglect were observed to be among the leading causes of marginalisation, failure to access resources, and hence chronic poverty among disabled people. There is fundamental ignorance around disability at all levels of society. In Mukono and Iganga witchcraft was blamed, especially if mental illness was involved, in which case individuals and their families were likely to be rejected by both their families and by communities. Widespread fear of disability, especially of mentally ill individuals, is based on a common perception that disability and mental illness are contagious. The perception is even more deep-rooted for epilepsy. Evidence from Mulago in Kampala revealed that even within the medical profession, disability is given little time in training and negligible allocation of resources hence ignorance is very widespread outside of the tiny number of people that are trained specifically in this area. Approaches that are used by traditional practitioners in dealing with disability follow the “curative medical model”, but often lend themselves to physical and sexual abuse in “treatment”. Awareness raising appears to be an urgent need for all community members and professionals.
(a) Attitude-based exclusion: Exclusion was noted to happen in three different ways: economic, social and political. Economically, exclusion centred around obstacles to participation in livelihood activities, especially those of an income generation nature. Access to financial resources was noted to be a major factor in this regard. While there was no evidence of official policy by financial institutions to exclude disabled people from accessing loans, most disabled were on record for having been denied credit facilities in nearly all such financial institutions “simply because managers thought they had no ability to pay back”. People with disabilities were excluded from joining credit groups by able-bodied group members. In such instances members of the groups feared that if allowed disabled people would never be able to pay back their loans. In one instance, in Iganga, this left only the specifically designed ADD-IDIWA Income Generation programme to serve disabled persons. But income generation opportunities were not the only challenge. The majority of disabled people interviewed by the research team in rural areas themselves seemed to prefer being given grants to obtaining loans. The preference is in conformity with the age-old practice of seeking for handouts.
At the community level, also, attitude-based exclusion remains a major problem. In Bwaise a disabled food vendor who moves on her fours revealed that she could not compete with other women as some customers referred to her as “dirty” (because she has to crawl on the ground to move from one place to another.).
There were, however, other challenges too. Disabled people meet high levels of overheads whenever they try to engage in income generating activities.

“The physical facilities in markets are not conducive to disabled people’s work. In order, for example, to be able to make bulk purchases from the market a disabled person needs to take along with him/her an assistant, which increases the operating costs for disabled persons”. - Disabled workers, Bwaise-Mulago, Kampala
“When I need to travel, I will have to put into consideration the cost of transporting my wheelchair. Often taxi drivers will reject this, citing lack of space”. - Disabled person in Iganga
“We work in direct competition with able-bodied colleagues who are also involved in informal trade activities. Whenever, however, Law Enforcement Officers make a raid on informal sector workers, everyone else runs off and saves their wares, except disabled persons who are unable to run”. - Disabled informal sector workers from Bwaise-Mulago.

But negative attitudes are not confined to simple exclusion of disabled people from participating in economic activities. In certain instances it was clear that able-bodied community members “sympathised with the condition of disabled persons” to the extent that they “pitifully excluded” them. Evidence from Nkokonjeru Providence Home in Mukono revealed that community members who live around the home complained of disabled children being involved in agriculture as part of their routine schedules. To the majority of such people disabled children should never, in the first place, have been “subjected to hard tasks” such as agriculture. The story from the disabled children themselves was however quite different:

“By participating in agriculture we have shown the world that we are able to do things by ourselves” - Disabled Children at Nkokonjeru Providence Home
“Growing crops and doing work towards personal livelihood has been an empowering process for us." - Disabled Children at Nkokonjeru Providence Home

A common problem expressed by respondents in nearly all districts was the inappropriateness and lack of access of information on agriculture, especially that which comes via radio waves. Disabled farmers in Mbarara complained about not getting information on agricultural development projects, such as that on availability of clonal coffee seedlings. First, certain categories of disabled people, specifically deaf persons, simply cannot access such information. Yet even in instances where information is available the content of the messages assumes that users (the farmers themselves) are all able-bodied and hence the examples given can only be used by able-bodied persons. Other disabled persons are themselves so poor that they cannot afford a radio, and hence cannot benefit from radio messages. It was further remarked that agricultural extension services only go to those that can afford them, completely leaving out disabled farmers who are often struggling to get started. Further, there were complaints about agricultural practices not being adapted so as to fit the needs of particular people with disabilities. Similarly, disabled people in Gamba, Mukono wondered why no Government agency had ever conceived a type of agriculture that is suitable for people with disabilities, and which took account of the different disabilities.

Uganda, city Kampala, a mentally handicapped
child is all alone in the shadow of his home.
His parents are so poor that they have to
 work and have no time to care for the boy.

 (b) Social exclusion Evidence on this took different forms. Disabled children, it was noted, were rarely given an opportunity to go to school, hence their socialisation was limited at an early stage. Reasons for this varied considerably. In a few instances, such as in Namulesa, Mukono, some parents “felt ashamed” to show their disabled children. In other instances children taken to schools also found little or nothing to do there as schools lacked trained teachers, appropriate equipment or the disabled children even met with outright negative reactions from other children. This discouraged them (the disabled children) from participating in school activities.

In Ibanda and Iganga children with disabilities could not easily access education because schools were at least 5km away from home and parents were unable to pay the requisite transport money. Some children also lacked mobility appliances. However another limitation were the unusually high fees at special needs schools, such as Mbarara, which charges Shs. 40,000/- per term in fees, 38 kg of maize flour and 8kg of beans as opposed to between 8000/- and 21000/= in UPE schools. In Ntinda school of disabled school fees is 80000/= per term. Failure to benefit from educational opportunities condemned disabled children to perpetual poverty. To many parents of disabled children, therefore, their children’s disability was quite expensive.
The architecture in most schools continues to be a major physical barrier to participation of disabled children in education. In Wandegeya Muslim School, for example, disabled children supported by Salvation Army cannot be promoted to higher forms simply because upper classes are physically located “upstairs”. Similarly, deaf and blind children are sometimes excluded from enrolling in UPE Schools because teachers lack the necessary skills to teach. In all districts visited, these children are not enrolled at all.
Involuntary exclusion was also noted with some special categories of children. In Ibanda (Mbarara), Nalukolongo (Kampala) and Nkokonjeru (Mukono) children suffering from Ostomolisis and epilepsy were kept at home “to avoid them getting problems while at school”. Regrettably, when such children are kept away from school no compensatory lessons are held for them.
Other types of exclusion are not so easy to note. Children with motor neuron challenges, children that are blind or those that are deaf cannot sit the same types of examinations as do other children. Similarly, in instances where concepts have to be translated into sign language the mode in which such translation is done, including time that is allocated to perform tasks, need to vary. But perhaps the greatest obstacle to further education of disabled children is the stereotyping of children with disabilities as best only for “vocational skills” - shoe making, carpentry, tailoring, etc.
Disabled teenagers on the other hand, especially as they explore and discover their sexuality, find it extremely difficult to find boyfriends or girlfriends, which in turn makes them vulnerable to “any willing sexual partners”, sometimes carrying with them the risk of HIV/AIDS. Several reports, however, also mentioned men who only want to “explore” the sexuality of a disabled person but have no intention of entering into long-term relationships. Adult disabled persons, also, neither had genuine friendships nor fully participated in social activities.
Exclusion from health services was noted to be a widespread problem in nearly all the research districts. While overall disabled people believed that the quality of health service delivery to disabled persons had generally improved in the last years, cases of alienation from the service were still many. In Iganga a case was mentioned of blind persons being skipped “because they had not come with proper guides” (apparent reference to corruption money). Distance was also a critical factor, with journeys being as long as 2-5 kms. This problem aside disabled people even when they turned up at local dispensaries with certain ailments were automatically referred to bigger hospitals as at the lower levels staff were unsure how to handle disabled persons.
On the other hand the research team observed that most health facilities lacked specialised health personnel such as ENT clinical officers or psychiatric nurses (Kamwokya) which sometimes led to aggravation of the disability conditions of some people. The priority given to specialist psychiatric drugs was also noted to be very low with only drugs for well-known illnesses such as Malaria being put on the purchase list of essential drugs. As a consequence many children with disabilities in Mukono and Ibanda were either being given local herbs, or taken to traditional healers.
Most disabled women were observed to be particularly vulnerable because:

• They lack permanent marriage partners
• They are unable to defend themselves in case they are attacked 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 social exclusion ranged from missed opportunities in education, to seclusion and non-participation in development activities. Many disabled persons also missed out on development-oriented information in health, governance, etc. which further marginalized them from participation in mainstream activities.

PWDs experience poverty for many reasons. Employment is in marginal and unskilled work. Common ways of earning money were begging and handouts, some PWDs were left at home. This was contrasted with the issues of marginalisation and exclusion that PWDs are commonly subjected to. 

The following article, No borders: Hiring the disabled can still get you results, discusses the experiences of the hearing impaired. Of particular note is the use of the derogatory "deaf and dumb" to describe the hearing impaired in this report:

Like any other Ugandans, the skills, experience and educational qualifications of the deaf and dumb are widely varied, but they tend to be an under-utilised talent pool.
If companies look beyond someone’s disability and seize the potential of everyone who wants to work for them, they could benefit immensely.
A recent report from the International Labour Organisation: Disabled persons and employment, indicates that disabled persons comprise of more than 600 million of the seven billion people that make the global population.
“While many disabled persons are successfully employed and fully included in society, as a group, they face disproportionate poverty and severe unemployment,” the report reads in part.
“A lack of global data about their numbers and situation is only one piece of evidence supporting the discrimination and exclusion they often face. National data, when it exists, verifies the fact that people with disabilities, and especially women, are less likely to access education, training and employment of any kind.”
Some companies in Uganda are adopting employment of disabled persons in their policies.
“We strongly adhere to our human resource policy that does not discriminate against job seekers and employees on any grounds. We believe that including people with physical impairment in our workforce increases our pool of talent and skill,” Ms Brenda Kyasiimire, the human resource manager at Rwenzori Bottling Company Limited, says.
Recognised: Ms Barbra Gwosusa and MsFlorence Aguti have not had a fair share of life because both are deaf and dumb.
It is with their current job placements at Rwenzori Bottling that they are starting to realise their worth.
Ms Aguti studied in Arua District but later moved to Jinja District where she studied a tailoring course.
Tailoring was not earning her enough money to buy “beautiful shoes and jewelry” as the 29-year-old says through an interpreter Isaac Lukyamuzi. She later joined the teaching profession at Gayaza School for the Deaf tutoring primary one and two in sign language.
However, she did not give up on the job search. She applied for a vacancy at the company last September and luckily there was a vacancy that she is currently filling.
“My life is better now because of the good working conditions and relations I have with other employees. Everyone loves and cares for us,” Ms Aguti says. “I am more confident now and have realised that I can do anything that a normal person can do or even better.”
For the future, Ms Aguti dreams of meeting a good man who will love her for who she is.
Bitter side: Her colleague Ms Gwosusa has tasted the bitter side of being employed with a disability.
She studied in Ntinda School for the Deaf. However, she did not go beyond Senior Four because of school fees constraints. She was previously working as a caterer in a hotel in Wandegeya but could not stomach the oppression she was facing from some of her workmates and the Shs60,000 per month was so meagre.
“I was reduced to rubbish in that place. No one believed in me not even the managers,” she said, engrossed in deep thought.
She threw in the towel early this year and a visit to her former school cast good luck upon her.
It is her former headteacher in Ntinda who told her about the openings at Rwenzori.
“My mother passed on when I was still very young. I am thankful to God that I can now look after myself. I am no longer a burden to my father, who also hardly manages on his own,” says the 29-year-old whose dream is to board a plane and become a manager at the company.
“I am glad that I took on these people in my department because they are my best employees. They are diligent and hardworking,” Mr Innocent Obong, the quality manager at Rwenzori says, lashing at those who look at employing the deaf in bad light.

This survey of disability and poverty in Uganda discussed the employment of PWDs. Besides the begging, handouts and being left at home being, it is also noted that most work available to PWDs is unskilled manual labour. PWDs also commonly face discrimination that leads to isolation and neglect. It was shocking as to read about attitudes of stigma and prejudice that have been discussed many times in this blog. Stigma and prejudice are feeding into chronic poverty through discrimination and are compounding the already precarious position of PWDs. Perhaps these barriers are greater than the problems of disability?

Poverty and Disability in Uganda 1: Definitions

The blog posts Poverty and Disability and Poverty and Disability Around the World highlight the complexity of any solutions to poverty. The Overview of Poverty in Uganda showed that poverty is a multidimensional problem affecting everyone throughout their lifetime. Disability predisposes persons with disabilities (PWDs) to poverty (see Poverty and Disability In Uganda), therefore, when disability is combined with poverty a complex problem is compounded. 

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:

• “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

• “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.

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.
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.

Having defined disability, the report moves on to define chronic poverty:

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.
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 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 

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.

What then is the relationship between disability and chronic poverty?

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.

Paul Tibaboneka and Theopista Babilaba at their home in Naluko village, Nabitende Sub-county, Iganga District

With these definitions in mind it is possible to get a deeper understanding of the issues discussed in the following article which describes the experiences of 2 Ugandan PWDs living in poverty. Read this carefully, A life of poverty, disability, blindness, and remember the definitions given above:

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.