A Voice For the Voiceless
The Advocacy Project helps marginalized communities to tell their story, claim their rights and produce social change. We recruit graduate students to volunteer as Peace Fellows with partners.
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Peter Kilama
Peter Kilama is not a soldier. Or a rebel. In 1996 he was working in his own garden at his own home when he was blown up by a landmine. He lost his left leg above the knee, and nearly his life. He spent more than six months in the hospital living in “a lot of pain and fear.” He recovered, and received his first artificial leg in 1999; the same one he has today. Generally in the US, prosthetic limbs are replaced every two or three years.
Peter joined the Advocacy Committee last year to learn about his own and his community’s rights. The training at Alero helped him understand the mandates that exist to guarantee rights to persons living with disabilities, but which are not enforced in Uganda, or in much of the rest of the world for that matter. He told me, “The training has given me strength and a lot of skills. I’m very happy about it.” Now he says he wants to “help other people who don’t know this information about disabilities.”
Now that he has this information, Peter’s group is responsible for disseminating this information to other members of the community. They will be performing dramas, writing songs, and eventually, holding their own trainings on the rights of persons with disabilities. This kind of information sharing is critical to the development and rehabilitation of Northern Uganda. In fact, everyone at the training agreed that unless you know your rights, you can’t ever expect to receive them. The Alero Advocacy Committee knows that, and they’re doing something about it. (Profile by Bryan Lupton)
Richard Okech
Richard Okech is the Odek Sub-county Association Chairman. He assumed this role in 1999 because he realized that the local government at the time was not concerned with the rights of people living with disabilities. “They promise, but they don’t bring,” he said, simply.
Richard elaborated: “I can help people. Only the government can’t help by itself. I decided that I must do some of the work myself.”
Richard explained how he felt about the information he had received at a recent training put on by the GDPU concerning the rights of Persons with Disabilities. He said “It’s very good. I never knew, but now I have it. I will carry on the information by teaching other people.”
Richard has not led an easy life. He lost an eye when he fell into a cooking fire as a toddler. His daughter was abducted by Joseph Kony’s LRA and she never came back. After taking his daughter, the rebels stole all of animals as well, wiping out a lifetime of saving and investment. I came to find out as well that Okech and Kony even belong to the same clan, a loosely-defined extended family relationship.
Apparently, Kony doesn’t care about his own clan any more than anyone else’s, though. “What he is doing is not good.” Okech told me, “He is my clan brother, but he has killed many people from our clan. We are related on my father’s side, but he (Kony) doesn’t care.”
After all of this, Okech remains hopeful. As for how he sees the future of Uganda, Okech told me that he focuses on “the small changes for the better. Things are improving. In Odek, there used to be no changes, but now there is a little bit. We are trying…”
That’s what it all boils down to. In a country and a region that have seen so much destruction, rehabilitation comes in very small, almost inperceptible amounts. The relief is incremental, but with focus, one can see it. And when you can see it, you can add to it and help others notice it as well. Okech Richard can see it, and he’s showing others where to look. (Profile by Bryan Lupton)
Otto Jinaro
In 2003, Otto was working for the food aid program of African Christian Fellowship (ACF) and was on his way back to Gulu from Odek when his caravan was ambushed by rebels. The rebels opened fire on the vehicles simply because they dared to enter the area of Uganda which the rebels claimed to “own.” It didn’t matter that the vehicles were part of a humanitarian mission; any and all movement on the roads was prohibited.
People took this warning seriously, for the most part, and it was not uncommon during the late 1990s to see people flying to destinations less than 50 miles away.
During this particular ambush, Otto was shot in the ankle and escaped with relatively minor injuries. Unfortunately, three women and one man from the group were killed, including a board member from the Gulu Disabled Persons Union.
After recovering physically, Otto began to look for ways in which he could continue working to help people affected by the war in Northern Uganda. There was a strong sense of dependency on donors, he told me, but he realized that dependency will not take you very far. “Do not wait for anyone to help you, go out and do a little job (to raise money),” he told me.
Otto went out and joined the local government to try and expand his influence. He is now the Secretary of the Odek Subcounty Association for Disabilities. He was in Odek today to attend a training on the UN Convention on the Rights of Persons with Disabilities. In addition to that, he has been spearheading an income-generating project for people with disabilities. They are designing concrete slabs for the construction of latrines. Of course, the design also improves the accessibility of the latrines for PWDs. I was impressed by the innovative nature of this project, which not only creates financial opportunity but also spurs inclusive development; the best of both worlds.(Profile by Bryan Lupton)
Concy Ajok
Kidnapped by the LRA in 1994, Concy escaped during a clash between the rebels and government soldiers in which she was shot in the groin and had her legs and feet injured by shrapnel from a bomb. She made it home in 1995 just in time to witness the LRA murder her husband in the garden. Widowed in her mid-twenties, Concy has a past that would shake anyone who heard it.
But that’s not what she wants to talk about. She wants to talk about the future. She wants to talk about the work of the Advocacy Committee in Alero.
Concy wants to talk about the future because she has children that need her to. One of her sons is deaf and he has not been able to attend school regularly for several years. Either he faces ridicule from fellow students, or worse, the school administrators flat out refuse to allow him to attend because of his disability. Unfair, sure, but also illegal.
Uganda has laws in place that guarantee the right to health, education, employment and participation in public and private life to all persons living with disabilities. The Advocacy Committee that Concy is a part of is part of the mechanism that will hold the Ugandan government to these promises that they have made to their people. The more people that become aware of the responsibilities of the Ugandan government, the more likely it is that the government will enforce its own policies. With more trainings done by the GDPU on disability rights, and more committee members like Concy, the change will not be a long time coming. (Profile by Bryan Lupton)
Patrick Okullu
In 1999, when Patrick was 12 years old he fell out of a mango tree. He was only about six feet off of the ground, but he suffered a dislocation of his spinal cord and fell into a coma that lasted for ten days. When he woke up, he couldn’t move his legs. He spent more than a year in the hospital and saw little improvement in his condition. He told me “Life was not easy at the start, but I was still hopeful.”
As the months and years went on, and he wasn’t able to make much progress in healing, Patrick began to lose his grip on the hope that he once had. “People were seeing me like a burden to them, they were neglecting me. I wasn’t going to school. Life was meaningless and I began to think of suicide.”
Patrick just wasn’t able to believe the doctors and counselors that were telling him that he was going to be okay. They weren’t paralyzed and they didn’t understand what he was feeling. One day, though, the doctors allowed him to participate in a Peer Group Training that was happening at his hospital. The training was being led by Fred Semakulu, an Advocacy Trainer who was himself paralyzed from the waist down after a fall from a tree.
Being supported by a fellow survivor changed Patrick’s outlook. He remembers, “I realized I had to think twice. Now I’m not the only one in this condition. There are others and they are still living.” He made a promise that day to choose to live as well. He met with Fred after the program and began on the path to get certified as a Peer Group Trainer as soon as he was out of the hospital.
Now, Patrick is a trainer of trainers for the Peer Group Trainers Project. “My testimony is to inspire. I need people to know that ‘You’re not useless.’ I want to share my experience. I’ve gone through the same thing and I’m still living. The sharing of the stories always helps to build self-esteem.”
In the future, Patrick has plans of joining local politics so that he can expand his influence and further advocate for the rights of persons with disabilities. PWDs, he explained, “are still seen as being a burden, there is a lot of sensitization that needs to be done.”
Patrick is grateful to those who helped him pull through some very difficult times, and he’s grateful that he can help others through that process now. The testimony of survivors is extremely profound to someone struggling with similar circumstances. “It helped me to change,” Patrick says, “and if I do it with other people then they can also change. It will improve their quality of life.” (Profile by Bryan Lupton)
Justin Okello
A survivor of polio at age 3, Justin lost the use of his left leg and uses crutches to get around. In addition, his family was torn apart by the war with the LRA, with two of his siblings killed, five abducted, and two of those five having yet to return. No one knows if they are still alive.
Justin has been living with his wife and daughter in the Alero IDP camp for more than 10 years, but refuses to remain idle. He lacks the capital to move out of the camp and start entirely anew, but he is working to realize that goal by the end of the year. He began making furniture from his home, and has turned his skill into a small business. He is now training three of the other “stranded people” and hopes to expand even further. Justin has been cultivating community relationships and has joined the Advocacy committee for Alero because, he told me, “some people think you can do it alone, but in advocacy, you need to have allies to help you.”
The Gulu Disabled Persons Union and Survivor Corps are exactly that: allies. No single person or organization is able to fix some of the damage done by the war in Northern Uganda, but as the peace expands, and the survivors and survivor organizations begin to band together into alliances, the progress speeds up and will spread exponentially. It is people like Justin Okello that give their communities new skills that translate into empowerment, which in turn becomes hope, which ultimately leads to positive change. (Profile by Bryan Lupton)
Simon Ongom
Simon is currently the chairman of the Gulu Disabled Persons Union. Simon has been physically disabled since the age of five.
Simon cites the war as eroding the cultural norms of the Ugandan people. The communities no longer care for persons with disabilities. PWDs are more dependent than before, but they are not being taken care of by families, the government, or non-governmental organizations. The war has made everyone poor. Because of the relative peace, people are going back home. However, persons with disabilities are staying behind.
The government and NGOs need to focus specifically on the needs of PWDs. PWDs will not be able to return home until they have the support they require.
Simon still sees a future of challenges and problems for disabled persons. “PWDs are still neglected and maternalized in all aspects of life. What pains me most is that even parents of PWDs have not realized a child with a disability has potential just like other children. When I see that PWDs do not access services just like other citizens I see there is still a lot to do.”
Simon has been an active advocate since 1998 when he was elected treasurer of the Gulu Disabled Persons Union. As chairman he has succeeded in incorporating PWD interests in the budget of development plans for some governmental units. He works to reverse the suffering PWDs endure both as children and adults. His commitment to disability rights is unending, “Not until PWDs have equal opportunities, I will not relax.” (Profile by Annelieke van de Wiel)
Teddy Luwar
Honorable Councilor Teddy Luwar is the Representative for Women with Disabilities on the Amuru District Council. She entered local politics in 2002 because she was passionate about supporting people living with disabilities in Northern Uganda.
When she was 16 Teddy stepped on something that cut her foot and made her entire left leg swell up. It was a “local poison” she told me, and wouldn’t elaborate further. Whatever it was, it severely damaged her hip joint and she underwent two surgeries and more than a year of walking with crutches.
The experience of being excluded for a year, and being left behind when her friends and family went places that she couldn’t, left an indelible mark on Teddy. “Isolation is painful,” she recounted to me, “I was seeking a community so we could support each other.” Teddy started a women’s group, and it was popular and influential enough to gain Teddy a seat on the District Council within a few years.
Now, Teddy is advocating for not only women with disabilities, but for anyone affected by epilepsy, physical disabilities, vision impairment, deafness, mental retardation, leprosy and even those people whose children are living with a disability. Teddy is also on the Accessibility Audit Team for the Gulu Disabled Persons Union which inspects public buildings and grades them according to how easily accessible they are for people living with disabilities. Sadly, most buildings she audits do not receive a passing grade.
Nevertheless, Teddy is optimistic about the progress being made in Northern Uganda. “There is increased participation now,” she says. People are forming groups and working together, she explains. That is partly because they have a strong leader like Councilor Luwar to rally around. “I treat all of them like my children,” she told me. “I feel very happy, because (PWDs) are starting to come out. They used to be pointed at, looked at, and laughed at, but now they have more information about their rights and they have started coming out.” (Profile by Annelieke van de Wiel)
Santos Okumu
Santos is chairman of the Gulu District Association of the Blind and a board member of the Gulu Disabled Persons Union. Santos became blind when he was older, and as a result his education ends at the senior four level.
Before the war Santos was employed by the local government and used the money he earned for cultivation of his land and the purchase of cattle. The conflict displaced him and his community to internally displaced persons camps. There has been a major disruption in the economic growth of his community. The biggest challenges facing them now are food and shelter.
Santos’ role in the persons with disabilities movement in the region and nation can be traced straight back to the roots of the movement in 1980. Santos explains this was when Idi Amin was overthrown. “During the [following] crisis humanitarian aid came to Uganda to provide food items. We were not able to access this aid. We were unable to line up. We became one voice… We mobilized people and we went to the District Commissioner. They brought the food to this very centre. That is how we got it.”
Santos became an active advocate for PWDs political representation: “We struggled for [PWD representing] MP’s and councilors. I was one of the activists. I was part of the beginning of NUDIPU [National Union of the Disable Persons Uganda]”. Hon. Betty Bigombe, the minister of Northern Uganda, ordered a meeting so that PWDs could communicate their needs to the government. This is when Santos and others organized themselves as the National Union of the Disabled Persons Uganda in 1981.
There is a pervasive negative attitude of the public towards the blind. Health services in Uganda are not disability friendly. As Santos states, “Accessibility is more than a ramp. It is also about information, communication and employment.” Santos divides accessibility into three parts: accessibility to public buildings, accessibility to information and communication, and accessibility to service delivery from government, donors, non-governmental organizations and the community.
Santos wishes to increase his knowledge and skills to become an active and more effective disability advocate. (Profile by Annelieke van de Wiel)
Caroline Rose Adong
Rose is active in the Gulu Disabled Persons Union and is physically handicapped in both legs.
She was in a school for the disabled when the war began in Uganda. Her school was destroyed and eventually her family was forced to move. For six years Rose was unable to walk and could not attend school. The only way Rose was able to move around was through crawling, and this was restricted to her home. The war was intense during this time, and her parents were unable to adequately care for her.
In 1992, when she was sixteen, she had an operation which enabled her to return to school after spending a year recovering in the hospital. Rose had to be taught how to walk again.
Rose began school where she had left off when she was ten. She focused her efforts on the future and not dwelling on the past. Rose now holds a bachelor of business administration.
“What moves me is seeing the life of PWDs change. If you see a person moving into a building that he couldn’t access before, it keeps you going. I voice out for other people to realize change. If you keep quiet nothing will ever change. That’s why I keep on advocating…I am going to advocate for disability rights for the rest of my life because I have seen the importance of advocacy.” Rose has overcome devastating challenges in her past to succeed and advocate for change in the lives of others like herself. (Profile by Annelieke van de Wiel)
Christine Adong
In 1997 Christine was on her way to the market when the car she was travelling in was struck by an exploding landmine. A man took her and her infant son by bike to the regional hospital.
Upon returning home, Christine was not able to walk. Her husband refused to help her and left Christine. She went to her parents who took care of her and paid her medical bills. Five months after her accident, Christine looked for ways to help other landmine survivors. She began peer support activities and visited with survivors in hospitals.
Christine's husband thought as a disabled person, Christine was useless. As Christine emphatically said, “I am not useless! I can still work and make a difference.” Christine more than demonstrates that just because she is disabled, she is not useless. She is giving back and helping other survivors change their lives. Christine was one of the original founders of the Gulu Amuru Landmine Survivors Group and took part in the drafting of the constitution.
Christine notes that even though peace is returning to Uganda, there are still big problems remaining for people with disabilities. Survivors cannot get health services because of unavailability of transport to hospitals and inaccessible buildings for disabled persons. There remains an unmet need for counseling of both survivors and neighbors on inclusion within a community. There is a general lack of respect for PWDs in villages.
Christine has been a female representative in the Gulu Amuru Landmine Survivors Group since 2005. (Profile by Annelieke van de Wiel)
John Bosco Odong
John is a gunfire survivor who has been displaced by the war. In 1989, as government forces raided his village he was hit by a bullet. He was severely injured and spent six months in the hospital. In 1998, while traveling to Anaka, he was caught in cross-fire and hit by bullets in the arm and leg.
Prior to being injured, John was a farmer. Afterwards, his injuries hurt him too much and he was forced to rely on his wife and family for support. His life changed when in 2005 he received a grant to start his own business. At the same time he was trained in peer counseling and began his advocacy efforts.
He currently lives in an internal displaced persons camp with his wife and children. He has not returned to his land because he has no house to live in and is unable to build one himself. “Now people are moving back from the camps, people like me do not have the capacity to build a hut. Also, my kids do not go to school because of lack of money.”
John said that, “Peer counseling helped me. Before, I had a hard time. I was not doing anything. Peer counseling made me realize the injury was not the end of my life.”
John has also been busy working with authorities to help PWDs with small businesses as well. A tax exemption for PWD business owners that he advocated for is now in effect. John’s advocacy work with the landmine survivors group is helping other PWDs realize that despite their injuries, there is hope for the future. (Profile by Annelieke van de Wiel)
Otika Kagwa
Otika Kagwa is the Local Councilor representing People with Disabilities in Local Council III. He was elected to the position in 2006 and wasted little time before plunging into advocacy work for his constituents. I asked him what propelled him into local politics and he explained that the plight of PWDs in his sub-county was virtually unknown to many of the local politicians. There was no representative for PWDs, and when Otika sent requests for aid, they fell either on deaf ears or on no ears at all.
Otika’s struggles with physical disability began in 1997 when he was part of a caravan of vehicles that was ambushed by Lord’s Resistance Army Rebels. He was traveling with five people, and three of them were killed. As Otika was running away, he was shot in the back of the leg. The bullet shattered his femur and left permanent bone, muscle and nerve damage. The wound is a dozen years old and has never healed completely. He cannot bend his left knee.
After leaving the hospital, Otika began to understand the gravity of his injury and the challenges it presented for him. He also began to sympathize with others in his community who were living with disabilities. When he realized that there was no government representation for PWDs in Odek, he took action and undertook the burden himself. I found Otika at a training for the Rights of Persons with Disabilities and he told me that he was very interested in the topic. “This is very good for awareness,” he told me, “I will take this information to the local council meetings when we discuss funding.”
It is meetings like this that help to integrate PWDs into the local government system and into the general community. “It is important for people to know that PWDs can actually do some things. It’s good that we mix with able-bodied people,” Otika told me. He is a proud man, and wants to be recognized for his capabilities and contributions.
The same can be said for the Disability Rights Fund, the Advocacy Project and Survivor Corps. None of these organizations want special treatment for Persons with Disabilities, they simply want to encourage integration, fair treatment and respect into communities that may think that PWDs are nothing more than a burden. With more meetings like the one where I found Otika, and more people getting involved at a local level like Otika is doing, integration and fair treatment are appearing more clearly on the horizon for Uganda. (Profile by Bryan Lupton)
Alice Grace Aber
Alice is involved with the Gulu Deaf Women Development Association. She is deaf and requires a sign language interpreter. She used to be a sign language instructor in the Gulu district.
The main focus of her advocacy work has been opportunities for income generating activities for deaf women and promoting cooperation between the women on such activities. Alice is interested in learning how to effectively run an income generating business. These activities will allow deaf women to lead more independent, secure lives.
Alice is now chairperson of the Gulu Deaf Women Development Association. She is also the deaf representative for an NGO that works in her village. She says her organization wants “to see that all the members stand strong.” Through helping deaf women learn business skills, Alice is allowing them to live more self-sufficient lives. (Profile by Annelieke van de Wiel)
Allan Ogwang Nume
Allan has been active in the disability movement since 1999. He suffered from malaria at the age of ten, and due to overmedication of anti-malaria drugs, he was left with hearing impairment. He can somewhat hear with the help of a hearing aid. Following his hearing impairment, Allen dropped out of school while he struggled with the fear of failure. After a year, he had the courage to return to school. He continued his education and has since studied Science and Development Studies at Gulu University. When he was in Senior 4, he was identified by the chairman of the Disability Association in Kampala as a capable deaf and educated young man, and he became vice-chairperson of the Ntinda Disability Association.
Allan was elected vice chairperson for the Ntinda Disability Association for 1999 through 2000. After moving, he joined the Lira District Deaf Association in 2001 and has been an advocate for the deaf since then. Allan has had wide success in his work advocating for the deaf. In the first advocacy project he was involved with, the association visited with government representatives and advocated for the construction of an independent school for the deaf. Allan is an original founder of the Nancy School for the Deaf, a government supported school that educates deaf children from Primary 1 to the Senior 4 level.
Allan participated in the implementation of the Action on Disability and Development Advocacy Program in Lira from 2001-2007. He helps to act as an advocate for the deaf community in Gulu together with the chairman. Allan also attended the enactment of the disability rights in Lira District Council for disabled persons and participated in the distribution of the Act to various sub regions in the district under Pact Omega – USAID.
When asked what inspired him to become active for his fellow deaf: “I thought I was the only deaf person in the world, I felt lonely. After a while, I realized I was not alone.” He wants to become a better advocate and continue to influence the government. Allan is giving a voice to the voiceless, and helping others like himself understand and exercise their rights. (Profile by Annelieke van de Wiel)
Bernard Odong
Bernard has been a deaf blind advocate and a member of the Gulu United Deaf Blind Association since 1996. Bernard was born deaf and blind.
According to Bernard the main challenges for the deaf blind are communication issues with doctors, citizens, neighbors, and government representatives. Survivors cannot receive health services because of the lack of sign language interpreters. Bernard and the Association have experienced a loss of one of their members because of these communication issues. “One of our members died because of that: communication problems. The medical team did not understand his condition so he died.” Not enough sign language interpreters in general and in specific settings are a significant barrier to communication between the deaf and others. This has a sizable impact on all aspects of the lives of the deaf blind.
In a cycle that repeats itself, the lack of sign language interpreters and advocates for the deaf blind result in the inability to communicate their needs to the government. The government in turn does not recognize the needs of the deaf blind community and does not support measures to help the deaf blind.
Bernard, like many others talked about the minimal support for returning displaced persons with disabilities. The disabled who return to their villages have special needs in comparison to the non-disabled. They should receive special programs from the government and non-governmental organizations working in the area to help with their relocation needs. Unfortunately, neither the government nor NGOs have programs or aid geared towards disabled persons.
Bernard has been an advocate since 1996, when he was elected chairman of the Gulu United Deaf Blind Association. He held this position until 1997 when he was elected the Northern representative at the Makono executive meeting. In 2007 he was elected chairman of the Gulu United Deaf Blind Association. He wishes to expand his advocacy skills and advocate to the government on the behalf of deaf blind awareness. (Profile by Annelieke van de Wiel)
Charles Akena Odong
Charles became a member of the Gulu Disabled Persons Union in 2000. Charles was born without a disability and became physically disabled at the age of twelve. Even so, he finished his Bachelor degree in Social Sciences at Makerere Univeristy in 2006.
Even though Charles has his degree, he is still unemployed. According to him, the lack of access to employment is one of the main problems faced by persons with disabilities. There is a lot of discrimination in the job market towards PWDs. Charles has been invited for interviews, yet never hired. He related that in the Gulu Disabled Persons Union (GDPU) there are five other people with academic degrees and none of them have been successful in gaining employment.
Other problems include the lack of accessibility to facilities, services, and information from HIV/AIDS campaigns. Charles tries to accompany the development workers when they campaign among communities to connect and explain the issues of PWDs and HIV/AIDS. He says that PWDs are not targeted in HIV/AIDS campaigns because people without disabilities do not believe people with disabilities will get the disease.
Along with these issues, Charles encourages PWDs to take advantage of affirmative action to attend university. He was admitted to Makerere University under affirmative action, and he wants others with disabilities to be able to obtain their education as he did.
After becoming a member of the GDPU, Charles received mobility assistance. In 2006, he was elected treasurer of the GDPU. From 2000 to the present he has been active in the Union mobilizing PWDs to become involved and unite for governmental support. (Profile by Annelieke van de Wiel)
Elizabeth Abur
Elisabeth has been a general member of Gulu District Association for the Blind since 1998, when she fled to Gulu municipality from the violence in her sub-county.
Elisabeth describes her experience being blind during the conflict in Uganda, “I might sit outside, and other people might see the rebels coming from far, run and leave me, whereas I cannot see them. This happened to me. They [the rebels] gave me millet to grind and chicken so I prepared food for them. When they were finished they locked me in a hut so I could not hear which direction they were going and they left me there.” As a result, Elisabeth left her village in 1998 and stayed at an IDP camp for six months. After witnessing an increase in violence, she left the camp for Gulu with assistance from missionaries.
PWDs have suffered disproportionately during and after the conflict in Uganda. Disabled persons either did not know of the impending violence or were unable to leave with others, similar to Elisabeth’s experience. Refugees fled to the internally displaced persons camps, which could scarcely address the issues from people who were not disabled, let alone the disabled. In the congested IDP camps the blind have particular difficulty moving around. Seeking out food and water is a big problem. The deaf have problems communicating with others because of the lack of sign language interpreters in the camps. Disabled persons must depend heavily on others in order to survive the IDP camps.
Elisabeth has benefitted from her membership of the Gulu District Association for the Blind. She has gone to workshops given by the association and participated in the Business Development Support Program. Additionally, Elisabeth has been active in mobilizing people for meetings and cooking for those meetings. She sees a lot of improvements that the government can make to existing facilities that would benefit PWDs.
Elisabeth looks forward to her future and the possibility that elected office holds for advocacy. “In the future I might campaign to be an LC3 [Local Councilor at sub-county level], so that I can advocate for other people’s rights. I want to make district leaders aware of the rights.” (Profile by Annelieke van de Wiel)
Josephine Ayat
Josephine has been involved as treasurer with the Gulu United Deaf Blind Association since the conception of the organization in 2006. Josephine is both deaf and blind. She was born blind, and became deaf at the age of fourteen as a result of an infection that affected her auditory nerves.
There is a pervasive negative attitude in communities towards persons with disabilities. Josephine has personal experience with this negative attitude. This damaging attitude affects her, and other PWDs, lives. The war in Uganda has also negatively affected the daily lives of PWDs. The war not only increased the number of persons with disabilities in Uganda, but has caused migration, hunger, poverty, and disruption in education among the general population and PWDs. However, the government and non-governmental organizations working on reconstruction and development have failed to address the issues and problems facing PWDs.
The main achievements of the association have been raising money for its programs and training in HIV/AIDS prevention and awareness. The main focus now for Josephine and the association are breaking down the communication barriers between the deaf/blind and others. The ability of the disabled to communicate with their neighbors is limited. Braille and sign language interpreters are rarely available to help the communication between the two parties. There is also limited communication in hospitals between deaf and deaf/blind patients and doctors. PWDs have difficulty explaining their health problems to doctors to be able to receive the correct treatment.
Josephine also described the lack of representation and an association for the deaf/blind at the national level. There are separate associations for the deaf and the blind, the Uganda National Association for the Deaf and the Uganda National Association for the Blind, respectively. Reaching out on the national level is what the deaf/blind should be focusing on now, according to Josephine.
Asked why she joined the association Josephine said, “If I would not join my life would be worthless. I had to join them to uplift the group as a whole. Alone you cannot reach anything. With a group you can be more effective.” Josephine’s work raising awareness through the Gulu United Deaf Blind Association is helping to dismantle barriers and increase the visibility of disabled persons in Uganda. (Profile by Annelieke van de Wiel)
Lucy Adong
Lucy has been a member of the Gulu Disabled Persons Union’s board since the beginning in 1992.
When Lucy was three years old, she had eye cancer and became blind. She began her education at the Madera blind school. Lucy finished her primary education and began her secondary education. Unfortunately, due to the lack of Braille materials she was unable to continue her education further. She attended a domestic/agricultural training school for the blind for a year.
After the agricultural school, Lucy went home with her uncle to Pece. This was in 1971, when she was 15 or 16 years old. She stayed at his home for 6 years. She then heard a rehabilitation centre in Kampala had been opened. She traveled to Kampala where she followed training in weaving furniture out of cane materials.
Back home in Gulu, she worked for two years in a workshop putting her weaving skills into practice. Then everything changed. In 1979 the revolution took place. Amin was ousted and Obote returned to power. The exiles that had stayed in Tanzania now came back. Lucy says: “During that time, there was a lot of destruction. All the materials [necessary for weaving the furniture] were spoiled. I could no longer continue with my employment.”
Since that moment, Lucy spent her time mainly at home. Finally, in 1994, she decided she wanted to be a teacher. She applied to become a licensed teacher and she became employed. In 1998 she went for training as a grade 3 teacher. She completed the training in 2002.
Being disabled has hurt Lucy’s opportunities for marriage. Lucy has never officially married. She met a man who wanted to marry her, but her parents refused. She then met another man who never had any intention of marrying her. However, she has given birth to six of his children. Due to stereotyping of people with disabilities, potential mates do not want disabled partners.
During the war in Uganda, persons with disabilities were threatened and tortured because they had disabilities. “We lost many lives. Many got killed, their families were ruined. [The war] affected us [PWDs] a lot. In the rural areas it was worst for persons with disabilities. They could be tortured. The rebels would say that persons with disabilities were the mothers and father of the UPDF. If they did not find any other people [while raiding a village] they would target persons with disabilities. They would think we were reporters. They would target [us] for torture.” Lucy described her friend, Charles Okoya Laliya who was shot then pushed into his hut. His hut was then set on fire.
Those in the municipality stayed in the GDPU compound. When violence was at its peak, many persons with disabilities took refuge in the GDPU compound and its buildings. The centre is located just outside town but right next to the police barracks. During the time when many persons with disabilities camped at the GDPU compound, the LRA never attacked the place. Even though it was safe, the conditions were crowded, with people sleeping in small buildings, cooking and washing outside.
Lucy stayed in the compound during this time as well. “I stayed in the centre for six months. It wasn’t easy. We had to go for water far away. We used to go to town for food. At the time here it was sort of remote. This was an outskirt of town. In the evening many would leave for town but we stayed here. By then there was only one building [to sleep in]. Eleven families stayed here by then. People would sleep on their mats, we would cook outside.”
Lucy was encouraged to join the board of the GDPU by the current MP in 1992. At that point she was a member in the disability movement and took part in marching and organizing concerts. At first she was hesitant to join, but he saw her potential and helped Lucy gain confidence. In 2002, Lucy lost her position on the board but was re-elected later as the Municipality representative.
Lucy’s work with the disability movement and on the board has changed her immensely. “Being active has built a lot of confidence in me. Now I have the courage to stand up and declare what should be done and what are our rights when fellow persons with disabilities are abused and mistreated. First I was shy and I would walk away. Now I have the courage.” Lucy has been a member of the Gulu Disabled Persons Union’s board since the beginning in 1992.
When Lucy was three years old, she had eye cancer and became blind. One year later, she had an eye operation. After the operation, she began her education at the Madera blind school. Lucy finished her primary education and began her secondary education. Unfortunately, due to the lack of Braille materials she was unable to continue her education further. She attended a domestic/agricultural training school for the blind for a year.
After the agricultural school, Lucy went home with her uncle to Pece. This was in 1971, when she was 15 or 16 years old. She stayed at his home for 6 years. She then heard a rehabilitation centre in Kampala had been opened. She traveled to Kampala where she followed training in weaving furniture out of cane materials.
Back home in Gulu, she worked for two years in a workshop putting her weaving skills into practice. Then everything changed. In 1979 the revolution took place. Amin was ousted and Obote returned to power. The exiles that had stayed in Tanzania now came back. Lucy says: “During that time, there was a lot of destruction. All the materials [necessary for weaving the furniture] were spoiled. I could no longer continue with my employment.”
Since that moment, Lucy spent her time mainly at home. Finally, in 1994, she decided she wanted to be a teacher. She applied to become a licensed teacher and she became employed. In 1998 she went for training as a grade 3 teacher. She completed the training in 2002.
Being disabled has hurt Lucy’s opportunities for marriage. Lucy has never officially married. She met a man who wanted to marry her, but her parents refused. She then met another man who never had any intention of marrying her. However, she has given birth to six of his children. Due to stereotyping of people with disabilities, potential mates do not want disabled partners.
During the war in Uganda, persons with disabilities were threatened and tortured because they had disabilities. “We lost many lives. Many got killed, their families were ruined. [The war] affected us [PWDs] a lot. In the rural areas it was worst for persons with disabilities. They could be tortured. The rebels would say that persons with disabilities were the mothers and father of the UPDF. If they did not find any other people [while raiding a village] they would target persons with disabilities. They would think we were reporters. They would target [us] for torture.” Lucy described her friend, Charles Okoya Laliya who was shot then pushed into his hut. His hut was then set on fire.
Those in the municipality stayed in the GDPU compound. When violence was at its peak, many persons with disabilities took refuge in the GDPU compound and its buildings. The centre is located just outside town but right next to the police barracks. During the time when many persons with disabilities camped at the GDPU compound, the LRA never attacked the place. Even though it was safe, the conditions were crowded, with people sleeping in small buildings, cooking and washing outside.
Lucy stayed in the compound during this time as well. “I stayed in the centre for six months. It wasn’t easy. We had to go for water far away. We used to go to town for food. At the time here it was sort of remote. This was an outskirt of town. In the evening many would leave for town but we stayed here. By then there was only one building [to sleep in]. Eleven families stayed here by then. People would sleep on their mats, we would cook outside.”
Lucy was encouraged to join the board of the GDPU by the current MP in 1992. At that point she was a member in the disability movement and took part in marching and organizing concerts. At first she was hesitant to join, but he saw her potential and helped Lucy gain confidence. In 2002, Lucy lost her position on the board but was re-elected later as the Municipality representative.
Lucy’s work with the disability movement and on the board has changed her immensely. “Being active has built a lot of confidence in me. Now I have the courage to stand up and declare what should be done and what are our rights when fellow persons with disabilities are abused and mistreated. First I was shy and I would walk away. Now I have the courage.” (Profile by Annelieke van de Wiel)
Simon Ojok
Simon is on the board of the Gulu Disabled Persons Union. He is visually impaired, and uses materials in Braille. In spite of his disability, he has received his Bachelor degree in Development Studies from Makerere University.
Everything Simon had was destroyed in the war. He was displaced and now cannot return to his land because others have already moved back to it.
Simon explains his own experience in the context of others with disabilities, “I myself started being independent from P1 up to university. Other people should also be independent, economically and politically. They should be made free. This can only happen if they unite and focus.” Simon emphasizes that, “The best way to help a person is to make this person help himself. It is important to give some guidance here.”
In Simon’s view, an important issue for disabled youth is training in income generating activities, so that they can become independent and do not have to rely on their families, but can actually provide for the families. Simon also mentions that youth with disabilities can be utilized in resettlement. Youth with disabilities have not benefitted from government programs for youth participation.
He also has a suspicion that most governmental officials are not familiar with or do not even know about the persons with disabilities laws and policies. Unfortunately, government officials view the advocates as trying to challenge the government. This hampers the dialogue between the two groups, and government representatives become defensive. However, there can be positive gains from working with the government when the government sees the advocates as partners rather than challengers.
Simon explains what keeps him going in his advocacy efforts, “People approach me with so many challenges that they face. It is this and their appreciation which keeps me going.” As a university student, Simon was involved in the PWDs movement at the national level with UNAB, who he still has contact with. Simon currently represents Omoro County and the youth in Gulu and Amuru through his work on the board of the Gulu Disabled Persons Union. (Profile by Annelieke van de Wiel) Back
Advocates
"People with disability live in families and live in communities. We cannot be separated from society.” — Simon Ong’om, Chairperson of the Gulu Disabled Persons Union (GDPU).
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Peter KilamaPeter Kilama is not a soldier. Or a rebel. In 1996 he was working in his own garden at his own home when he was blown up by a landmine. He lost his left leg above the knee, and nearly his life. He spent more than six months in the hospital living in “a lot of pain and fear.” He recovered, and received his first artificial leg in 1999; the same one he has today. Generally in the US, prosthetic limbs are replaced every two or three years.
Peter joined the Advocacy Committee last year to learn about his own and his community’s rights. The training at Alero helped him understand the mandates that exist to guarantee rights to persons living with disabilities, but which are not enforced in Uganda, or in much of the rest of the world for that matter. He told me, “The training has given me strength and a lot of skills. I’m very happy about it.” Now he says he wants to “help other people who don’t know this information about disabilities.”
Now that he has this information, Peter’s group is responsible for disseminating this information to other members of the community. They will be performing dramas, writing songs, and eventually, holding their own trainings on the rights of persons with disabilities. This kind of information sharing is critical to the development and rehabilitation of Northern Uganda. In fact, everyone at the training agreed that unless you know your rights, you can’t ever expect to receive them. The Alero Advocacy Committee knows that, and they’re doing something about it. (Profile by Bryan Lupton)
Richard Okech Richard Okech is the Odek Sub-county Association Chairman. He assumed this role in 1999 because he realized that the local government at the time was not concerned with the rights of people living with disabilities. “They promise, but they don’t bring,” he said, simply.
Richard elaborated: “I can help people. Only the government can’t help by itself. I decided that I must do some of the work myself.”
Richard explained how he felt about the information he had received at a recent training put on by the GDPU concerning the rights of Persons with Disabilities. He said “It’s very good. I never knew, but now I have it. I will carry on the information by teaching other people.”
Richard has not led an easy life. He lost an eye when he fell into a cooking fire as a toddler. His daughter was abducted by Joseph Kony’s LRA and she never came back. After taking his daughter, the rebels stole all of animals as well, wiping out a lifetime of saving and investment. I came to find out as well that Okech and Kony even belong to the same clan, a loosely-defined extended family relationship.
Apparently, Kony doesn’t care about his own clan any more than anyone else’s, though. “What he is doing is not good.” Okech told me, “He is my clan brother, but he has killed many people from our clan. We are related on my father’s side, but he (Kony) doesn’t care.”
After all of this, Okech remains hopeful. As for how he sees the future of Uganda, Okech told me that he focuses on “the small changes for the better. Things are improving. In Odek, there used to be no changes, but now there is a little bit. We are trying…”
That’s what it all boils down to. In a country and a region that have seen so much destruction, rehabilitation comes in very small, almost inperceptible amounts. The relief is incremental, but with focus, one can see it. And when you can see it, you can add to it and help others notice it as well. Okech Richard can see it, and he’s showing others where to look. (Profile by Bryan Lupton)
Otto JinaroIn 2003, Otto was working for the food aid program of African Christian Fellowship (ACF) and was on his way back to Gulu from Odek when his caravan was ambushed by rebels. The rebels opened fire on the vehicles simply because they dared to enter the area of Uganda which the rebels claimed to “own.” It didn’t matter that the vehicles were part of a humanitarian mission; any and all movement on the roads was prohibited.
People took this warning seriously, for the most part, and it was not uncommon during the late 1990s to see people flying to destinations less than 50 miles away.
During this particular ambush, Otto was shot in the ankle and escaped with relatively minor injuries. Unfortunately, three women and one man from the group were killed, including a board member from the Gulu Disabled Persons Union.
After recovering physically, Otto began to look for ways in which he could continue working to help people affected by the war in Northern Uganda. There was a strong sense of dependency on donors, he told me, but he realized that dependency will not take you very far. “Do not wait for anyone to help you, go out and do a little job (to raise money),” he told me.
Otto went out and joined the local government to try and expand his influence. He is now the Secretary of the Odek Subcounty Association for Disabilities. He was in Odek today to attend a training on the UN Convention on the Rights of Persons with Disabilities. In addition to that, he has been spearheading an income-generating project for people with disabilities. They are designing concrete slabs for the construction of latrines. Of course, the design also improves the accessibility of the latrines for PWDs. I was impressed by the innovative nature of this project, which not only creates financial opportunity but also spurs inclusive development; the best of both worlds.(Profile by Bryan Lupton)
Concy AjokKidnapped by the LRA in 1994, Concy escaped during a clash between the rebels and government soldiers in which she was shot in the groin and had her legs and feet injured by shrapnel from a bomb. She made it home in 1995 just in time to witness the LRA murder her husband in the garden. Widowed in her mid-twenties, Concy has a past that would shake anyone who heard it.
But that’s not what she wants to talk about. She wants to talk about the future. She wants to talk about the work of the Advocacy Committee in Alero.
Concy wants to talk about the future because she has children that need her to. One of her sons is deaf and he has not been able to attend school regularly for several years. Either he faces ridicule from fellow students, or worse, the school administrators flat out refuse to allow him to attend because of his disability. Unfair, sure, but also illegal.
Uganda has laws in place that guarantee the right to health, education, employment and participation in public and private life to all persons living with disabilities. The Advocacy Committee that Concy is a part of is part of the mechanism that will hold the Ugandan government to these promises that they have made to their people. The more people that become aware of the responsibilities of the Ugandan government, the more likely it is that the government will enforce its own policies. With more trainings done by the GDPU on disability rights, and more committee members like Concy, the change will not be a long time coming. (Profile by Bryan Lupton)
Patrick Okullu In 1999, when Patrick was 12 years old he fell out of a mango tree. He was only about six feet off of the ground, but he suffered a dislocation of his spinal cord and fell into a coma that lasted for ten days. When he woke up, he couldn’t move his legs. He spent more than a year in the hospital and saw little improvement in his condition. He told me “Life was not easy at the start, but I was still hopeful.”
As the months and years went on, and he wasn’t able to make much progress in healing, Patrick began to lose his grip on the hope that he once had. “People were seeing me like a burden to them, they were neglecting me. I wasn’t going to school. Life was meaningless and I began to think of suicide.”
Patrick just wasn’t able to believe the doctors and counselors that were telling him that he was going to be okay. They weren’t paralyzed and they didn’t understand what he was feeling. One day, though, the doctors allowed him to participate in a Peer Group Training that was happening at his hospital. The training was being led by Fred Semakulu, an Advocacy Trainer who was himself paralyzed from the waist down after a fall from a tree.
Being supported by a fellow survivor changed Patrick’s outlook. He remembers, “I realized I had to think twice. Now I’m not the only one in this condition. There are others and they are still living.” He made a promise that day to choose to live as well. He met with Fred after the program and began on the path to get certified as a Peer Group Trainer as soon as he was out of the hospital.
Now, Patrick is a trainer of trainers for the Peer Group Trainers Project. “My testimony is to inspire. I need people to know that ‘You’re not useless.’ I want to share my experience. I’ve gone through the same thing and I’m still living. The sharing of the stories always helps to build self-esteem.”
In the future, Patrick has plans of joining local politics so that he can expand his influence and further advocate for the rights of persons with disabilities. PWDs, he explained, “are still seen as being a burden, there is a lot of sensitization that needs to be done.”
Patrick is grateful to those who helped him pull through some very difficult times, and he’s grateful that he can help others through that process now. The testimony of survivors is extremely profound to someone struggling with similar circumstances. “It helped me to change,” Patrick says, “and if I do it with other people then they can also change. It will improve their quality of life.” (Profile by Bryan Lupton)
Justin Okello A survivor of polio at age 3, Justin lost the use of his left leg and uses crutches to get around. In addition, his family was torn apart by the war with the LRA, with two of his siblings killed, five abducted, and two of those five having yet to return. No one knows if they are still alive.
Justin has been living with his wife and daughter in the Alero IDP camp for more than 10 years, but refuses to remain idle. He lacks the capital to move out of the camp and start entirely anew, but he is working to realize that goal by the end of the year. He began making furniture from his home, and has turned his skill into a small business. He is now training three of the other “stranded people” and hopes to expand even further. Justin has been cultivating community relationships and has joined the Advocacy committee for Alero because, he told me, “some people think you can do it alone, but in advocacy, you need to have allies to help you.”
The Gulu Disabled Persons Union and Survivor Corps are exactly that: allies. No single person or organization is able to fix some of the damage done by the war in Northern Uganda, but as the peace expands, and the survivors and survivor organizations begin to band together into alliances, the progress speeds up and will spread exponentially. It is people like Justin Okello that give their communities new skills that translate into empowerment, which in turn becomes hope, which ultimately leads to positive change. (Profile by Bryan Lupton)
Simon OngomSimon is currently the chairman of the Gulu Disabled Persons Union. Simon has been physically disabled since the age of five.
Simon cites the war as eroding the cultural norms of the Ugandan people. The communities no longer care for persons with disabilities. PWDs are more dependent than before, but they are not being taken care of by families, the government, or non-governmental organizations. The war has made everyone poor. Because of the relative peace, people are going back home. However, persons with disabilities are staying behind.
The government and NGOs need to focus specifically on the needs of PWDs. PWDs will not be able to return home until they have the support they require.
Simon still sees a future of challenges and problems for disabled persons. “PWDs are still neglected and maternalized in all aspects of life. What pains me most is that even parents of PWDs have not realized a child with a disability has potential just like other children. When I see that PWDs do not access services just like other citizens I see there is still a lot to do.”
Simon has been an active advocate since 1998 when he was elected treasurer of the Gulu Disabled Persons Union. As chairman he has succeeded in incorporating PWD interests in the budget of development plans for some governmental units. He works to reverse the suffering PWDs endure both as children and adults. His commitment to disability rights is unending, “Not until PWDs have equal opportunities, I will not relax.” (Profile by Annelieke van de Wiel)
Teddy LuwarHonorable Councilor Teddy Luwar is the Representative for Women with Disabilities on the Amuru District Council. She entered local politics in 2002 because she was passionate about supporting people living with disabilities in Northern Uganda.
When she was 16 Teddy stepped on something that cut her foot and made her entire left leg swell up. It was a “local poison” she told me, and wouldn’t elaborate further. Whatever it was, it severely damaged her hip joint and she underwent two surgeries and more than a year of walking with crutches.
The experience of being excluded for a year, and being left behind when her friends and family went places that she couldn’t, left an indelible mark on Teddy. “Isolation is painful,” she recounted to me, “I was seeking a community so we could support each other.” Teddy started a women’s group, and it was popular and influential enough to gain Teddy a seat on the District Council within a few years.
Now, Teddy is advocating for not only women with disabilities, but for anyone affected by epilepsy, physical disabilities, vision impairment, deafness, mental retardation, leprosy and even those people whose children are living with a disability. Teddy is also on the Accessibility Audit Team for the Gulu Disabled Persons Union which inspects public buildings and grades them according to how easily accessible they are for people living with disabilities. Sadly, most buildings she audits do not receive a passing grade.
Nevertheless, Teddy is optimistic about the progress being made in Northern Uganda. “There is increased participation now,” she says. People are forming groups and working together, she explains. That is partly because they have a strong leader like Councilor Luwar to rally around. “I treat all of them like my children,” she told me. “I feel very happy, because (PWDs) are starting to come out. They used to be pointed at, looked at, and laughed at, but now they have more information about their rights and they have started coming out.” (Profile by Annelieke van de Wiel)
Santos OkumuSantos is chairman of the Gulu District Association of the Blind and a board member of the Gulu Disabled Persons Union. Santos became blind when he was older, and as a result his education ends at the senior four level.
Before the war Santos was employed by the local government and used the money he earned for cultivation of his land and the purchase of cattle. The conflict displaced him and his community to internally displaced persons camps. There has been a major disruption in the economic growth of his community. The biggest challenges facing them now are food and shelter.
Santos’ role in the persons with disabilities movement in the region and nation can be traced straight back to the roots of the movement in 1980. Santos explains this was when Idi Amin was overthrown. “During the [following] crisis humanitarian aid came to Uganda to provide food items. We were not able to access this aid. We were unable to line up. We became one voice… We mobilized people and we went to the District Commissioner. They brought the food to this very centre. That is how we got it.”
Santos became an active advocate for PWDs political representation: “We struggled for [PWD representing] MP’s and councilors. I was one of the activists. I was part of the beginning of NUDIPU [National Union of the Disable Persons Uganda]”. Hon. Betty Bigombe, the minister of Northern Uganda, ordered a meeting so that PWDs could communicate their needs to the government. This is when Santos and others organized themselves as the National Union of the Disabled Persons Uganda in 1981.
There is a pervasive negative attitude of the public towards the blind. Health services in Uganda are not disability friendly. As Santos states, “Accessibility is more than a ramp. It is also about information, communication and employment.” Santos divides accessibility into three parts: accessibility to public buildings, accessibility to information and communication, and accessibility to service delivery from government, donors, non-governmental organizations and the community.
Santos wishes to increase his knowledge and skills to become an active and more effective disability advocate. (Profile by Annelieke van de Wiel)
Caroline Rose AdongRose is active in the Gulu Disabled Persons Union and is physically handicapped in both legs.
She was in a school for the disabled when the war began in Uganda. Her school was destroyed and eventually her family was forced to move. For six years Rose was unable to walk and could not attend school. The only way Rose was able to move around was through crawling, and this was restricted to her home. The war was intense during this time, and her parents were unable to adequately care for her.
In 1992, when she was sixteen, she had an operation which enabled her to return to school after spending a year recovering in the hospital. Rose had to be taught how to walk again.
Rose began school where she had left off when she was ten. She focused her efforts on the future and not dwelling on the past. Rose now holds a bachelor of business administration.
“What moves me is seeing the life of PWDs change. If you see a person moving into a building that he couldn’t access before, it keeps you going. I voice out for other people to realize change. If you keep quiet nothing will ever change. That’s why I keep on advocating…I am going to advocate for disability rights for the rest of my life because I have seen the importance of advocacy.” Rose has overcome devastating challenges in her past to succeed and advocate for change in the lives of others like herself. (Profile by Annelieke van de Wiel)
Christine AdongIn 1997 Christine was on her way to the market when the car she was travelling in was struck by an exploding landmine. A man took her and her infant son by bike to the regional hospital.
Upon returning home, Christine was not able to walk. Her husband refused to help her and left Christine. She went to her parents who took care of her and paid her medical bills. Five months after her accident, Christine looked for ways to help other landmine survivors. She began peer support activities and visited with survivors in hospitals.
Christine's husband thought as a disabled person, Christine was useless. As Christine emphatically said, “I am not useless! I can still work and make a difference.” Christine more than demonstrates that just because she is disabled, she is not useless. She is giving back and helping other survivors change their lives. Christine was one of the original founders of the Gulu Amuru Landmine Survivors Group and took part in the drafting of the constitution.
Christine notes that even though peace is returning to Uganda, there are still big problems remaining for people with disabilities. Survivors cannot get health services because of unavailability of transport to hospitals and inaccessible buildings for disabled persons. There remains an unmet need for counseling of both survivors and neighbors on inclusion within a community. There is a general lack of respect for PWDs in villages.
Christine has been a female representative in the Gulu Amuru Landmine Survivors Group since 2005. (Profile by Annelieke van de Wiel)
John Bosco OdongJohn is a gunfire survivor who has been displaced by the war. In 1989, as government forces raided his village he was hit by a bullet. He was severely injured and spent six months in the hospital. In 1998, while traveling to Anaka, he was caught in cross-fire and hit by bullets in the arm and leg.
Prior to being injured, John was a farmer. Afterwards, his injuries hurt him too much and he was forced to rely on his wife and family for support. His life changed when in 2005 he received a grant to start his own business. At the same time he was trained in peer counseling and began his advocacy efforts.
He currently lives in an internal displaced persons camp with his wife and children. He has not returned to his land because he has no house to live in and is unable to build one himself. “Now people are moving back from the camps, people like me do not have the capacity to build a hut. Also, my kids do not go to school because of lack of money.”
John said that, “Peer counseling helped me. Before, I had a hard time. I was not doing anything. Peer counseling made me realize the injury was not the end of my life.”
John has also been busy working with authorities to help PWDs with small businesses as well. A tax exemption for PWD business owners that he advocated for is now in effect. John’s advocacy work with the landmine survivors group is helping other PWDs realize that despite their injuries, there is hope for the future. (Profile by Annelieke van de Wiel)
Otika KagwaOtika Kagwa is the Local Councilor representing People with Disabilities in Local Council III. He was elected to the position in 2006 and wasted little time before plunging into advocacy work for his constituents. I asked him what propelled him into local politics and he explained that the plight of PWDs in his sub-county was virtually unknown to many of the local politicians. There was no representative for PWDs, and when Otika sent requests for aid, they fell either on deaf ears or on no ears at all.
Otika’s struggles with physical disability began in 1997 when he was part of a caravan of vehicles that was ambushed by Lord’s Resistance Army Rebels. He was traveling with five people, and three of them were killed. As Otika was running away, he was shot in the back of the leg. The bullet shattered his femur and left permanent bone, muscle and nerve damage. The wound is a dozen years old and has never healed completely. He cannot bend his left knee.
After leaving the hospital, Otika began to understand the gravity of his injury and the challenges it presented for him. He also began to sympathize with others in his community who were living with disabilities. When he realized that there was no government representation for PWDs in Odek, he took action and undertook the burden himself. I found Otika at a training for the Rights of Persons with Disabilities and he told me that he was very interested in the topic. “This is very good for awareness,” he told me, “I will take this information to the local council meetings when we discuss funding.”
It is meetings like this that help to integrate PWDs into the local government system and into the general community. “It is important for people to know that PWDs can actually do some things. It’s good that we mix with able-bodied people,” Otika told me. He is a proud man, and wants to be recognized for his capabilities and contributions.
The same can be said for the Disability Rights Fund, the Advocacy Project and Survivor Corps. None of these organizations want special treatment for Persons with Disabilities, they simply want to encourage integration, fair treatment and respect into communities that may think that PWDs are nothing more than a burden. With more meetings like the one where I found Otika, and more people getting involved at a local level like Otika is doing, integration and fair treatment are appearing more clearly on the horizon for Uganda. (Profile by Bryan Lupton)
Alice Grace AberAlice is involved with the Gulu Deaf Women Development Association. She is deaf and requires a sign language interpreter. She used to be a sign language instructor in the Gulu district.
The main focus of her advocacy work has been opportunities for income generating activities for deaf women and promoting cooperation between the women on such activities. Alice is interested in learning how to effectively run an income generating business. These activities will allow deaf women to lead more independent, secure lives.
Alice is now chairperson of the Gulu Deaf Women Development Association. She is also the deaf representative for an NGO that works in her village. She says her organization wants “to see that all the members stand strong.” Through helping deaf women learn business skills, Alice is allowing them to live more self-sufficient lives. (Profile by Annelieke van de Wiel)
Allan Ogwang NumeAllan has been active in the disability movement since 1999. He suffered from malaria at the age of ten, and due to overmedication of anti-malaria drugs, he was left with hearing impairment. He can somewhat hear with the help of a hearing aid. Following his hearing impairment, Allen dropped out of school while he struggled with the fear of failure. After a year, he had the courage to return to school. He continued his education and has since studied Science and Development Studies at Gulu University. When he was in Senior 4, he was identified by the chairman of the Disability Association in Kampala as a capable deaf and educated young man, and he became vice-chairperson of the Ntinda Disability Association.
Allan was elected vice chairperson for the Ntinda Disability Association for 1999 through 2000. After moving, he joined the Lira District Deaf Association in 2001 and has been an advocate for the deaf since then. Allan has had wide success in his work advocating for the deaf. In the first advocacy project he was involved with, the association visited with government representatives and advocated for the construction of an independent school for the deaf. Allan is an original founder of the Nancy School for the Deaf, a government supported school that educates deaf children from Primary 1 to the Senior 4 level.
Allan participated in the implementation of the Action on Disability and Development Advocacy Program in Lira from 2001-2007. He helps to act as an advocate for the deaf community in Gulu together with the chairman. Allan also attended the enactment of the disability rights in Lira District Council for disabled persons and participated in the distribution of the Act to various sub regions in the district under Pact Omega – USAID.
When asked what inspired him to become active for his fellow deaf: “I thought I was the only deaf person in the world, I felt lonely. After a while, I realized I was not alone.” He wants to become a better advocate and continue to influence the government. Allan is giving a voice to the voiceless, and helping others like himself understand and exercise their rights. (Profile by Annelieke van de Wiel)
Bernard OdongBernard has been a deaf blind advocate and a member of the Gulu United Deaf Blind Association since 1996. Bernard was born deaf and blind.
According to Bernard the main challenges for the deaf blind are communication issues with doctors, citizens, neighbors, and government representatives. Survivors cannot receive health services because of the lack of sign language interpreters. Bernard and the Association have experienced a loss of one of their members because of these communication issues. “One of our members died because of that: communication problems. The medical team did not understand his condition so he died.” Not enough sign language interpreters in general and in specific settings are a significant barrier to communication between the deaf and others. This has a sizable impact on all aspects of the lives of the deaf blind.
In a cycle that repeats itself, the lack of sign language interpreters and advocates for the deaf blind result in the inability to communicate their needs to the government. The government in turn does not recognize the needs of the deaf blind community and does not support measures to help the deaf blind.
Bernard, like many others talked about the minimal support for returning displaced persons with disabilities. The disabled who return to their villages have special needs in comparison to the non-disabled. They should receive special programs from the government and non-governmental organizations working in the area to help with their relocation needs. Unfortunately, neither the government nor NGOs have programs or aid geared towards disabled persons.
Bernard has been an advocate since 1996, when he was elected chairman of the Gulu United Deaf Blind Association. He held this position until 1997 when he was elected the Northern representative at the Makono executive meeting. In 2007 he was elected chairman of the Gulu United Deaf Blind Association. He wishes to expand his advocacy skills and advocate to the government on the behalf of deaf blind awareness. (Profile by Annelieke van de Wiel)
Charles Akena OdongCharles became a member of the Gulu Disabled Persons Union in 2000. Charles was born without a disability and became physically disabled at the age of twelve. Even so, he finished his Bachelor degree in Social Sciences at Makerere Univeristy in 2006.
Even though Charles has his degree, he is still unemployed. According to him, the lack of access to employment is one of the main problems faced by persons with disabilities. There is a lot of discrimination in the job market towards PWDs. Charles has been invited for interviews, yet never hired. He related that in the Gulu Disabled Persons Union (GDPU) there are five other people with academic degrees and none of them have been successful in gaining employment.
Other problems include the lack of accessibility to facilities, services, and information from HIV/AIDS campaigns. Charles tries to accompany the development workers when they campaign among communities to connect and explain the issues of PWDs and HIV/AIDS. He says that PWDs are not targeted in HIV/AIDS campaigns because people without disabilities do not believe people with disabilities will get the disease.
Along with these issues, Charles encourages PWDs to take advantage of affirmative action to attend university. He was admitted to Makerere University under affirmative action, and he wants others with disabilities to be able to obtain their education as he did.
After becoming a member of the GDPU, Charles received mobility assistance. In 2006, he was elected treasurer of the GDPU. From 2000 to the present he has been active in the Union mobilizing PWDs to become involved and unite for governmental support. (Profile by Annelieke van de Wiel)
Elizabeth AburElisabeth has been a general member of Gulu District Association for the Blind since 1998, when she fled to Gulu municipality from the violence in her sub-county.
Elisabeth describes her experience being blind during the conflict in Uganda, “I might sit outside, and other people might see the rebels coming from far, run and leave me, whereas I cannot see them. This happened to me. They [the rebels] gave me millet to grind and chicken so I prepared food for them. When they were finished they locked me in a hut so I could not hear which direction they were going and they left me there.” As a result, Elisabeth left her village in 1998 and stayed at an IDP camp for six months. After witnessing an increase in violence, she left the camp for Gulu with assistance from missionaries.
PWDs have suffered disproportionately during and after the conflict in Uganda. Disabled persons either did not know of the impending violence or were unable to leave with others, similar to Elisabeth’s experience. Refugees fled to the internally displaced persons camps, which could scarcely address the issues from people who were not disabled, let alone the disabled. In the congested IDP camps the blind have particular difficulty moving around. Seeking out food and water is a big problem. The deaf have problems communicating with others because of the lack of sign language interpreters in the camps. Disabled persons must depend heavily on others in order to survive the IDP camps.
Elisabeth has benefitted from her membership of the Gulu District Association for the Blind. She has gone to workshops given by the association and participated in the Business Development Support Program. Additionally, Elisabeth has been active in mobilizing people for meetings and cooking for those meetings. She sees a lot of improvements that the government can make to existing facilities that would benefit PWDs.
Elisabeth looks forward to her future and the possibility that elected office holds for advocacy. “In the future I might campaign to be an LC3 [Local Councilor at sub-county level], so that I can advocate for other people’s rights. I want to make district leaders aware of the rights.” (Profile by Annelieke van de Wiel)
Josephine Ayat
Josephine has been involved as treasurer with the Gulu United Deaf Blind Association since the conception of the organization in 2006. Josephine is both deaf and blind. She was born blind, and became deaf at the age of fourteen as a result of an infection that affected her auditory nerves.
There is a pervasive negative attitude in communities towards persons with disabilities. Josephine has personal experience with this negative attitude. This damaging attitude affects her, and other PWDs, lives. The war in Uganda has also negatively affected the daily lives of PWDs. The war not only increased the number of persons with disabilities in Uganda, but has caused migration, hunger, poverty, and disruption in education among the general population and PWDs. However, the government and non-governmental organizations working on reconstruction and development have failed to address the issues and problems facing PWDs.
The main achievements of the association have been raising money for its programs and training in HIV/AIDS prevention and awareness. The main focus now for Josephine and the association are breaking down the communication barriers between the deaf/blind and others. The ability of the disabled to communicate with their neighbors is limited. Braille and sign language interpreters are rarely available to help the communication between the two parties. There is also limited communication in hospitals between deaf and deaf/blind patients and doctors. PWDs have difficulty explaining their health problems to doctors to be able to receive the correct treatment.
Josephine also described the lack of representation and an association for the deaf/blind at the national level. There are separate associations for the deaf and the blind, the Uganda National Association for the Deaf and the Uganda National Association for the Blind, respectively. Reaching out on the national level is what the deaf/blind should be focusing on now, according to Josephine.
Asked why she joined the association Josephine said, “If I would not join my life would be worthless. I had to join them to uplift the group as a whole. Alone you cannot reach anything. With a group you can be more effective.” Josephine’s work raising awareness through the Gulu United Deaf Blind Association is helping to dismantle barriers and increase the visibility of disabled persons in Uganda. (Profile by Annelieke van de Wiel)
Lucy AdongLucy has been a member of the Gulu Disabled Persons Union’s board since the beginning in 1992.
When Lucy was three years old, she had eye cancer and became blind. She began her education at the Madera blind school. Lucy finished her primary education and began her secondary education. Unfortunately, due to the lack of Braille materials she was unable to continue her education further. She attended a domestic/agricultural training school for the blind for a year.
After the agricultural school, Lucy went home with her uncle to Pece. This was in 1971, when she was 15 or 16 years old. She stayed at his home for 6 years. She then heard a rehabilitation centre in Kampala had been opened. She traveled to Kampala where she followed training in weaving furniture out of cane materials.
Back home in Gulu, she worked for two years in a workshop putting her weaving skills into practice. Then everything changed. In 1979 the revolution took place. Amin was ousted and Obote returned to power. The exiles that had stayed in Tanzania now came back. Lucy says: “During that time, there was a lot of destruction. All the materials [necessary for weaving the furniture] were spoiled. I could no longer continue with my employment.”
Since that moment, Lucy spent her time mainly at home. Finally, in 1994, she decided she wanted to be a teacher. She applied to become a licensed teacher and she became employed. In 1998 she went for training as a grade 3 teacher. She completed the training in 2002.
Being disabled has hurt Lucy’s opportunities for marriage. Lucy has never officially married. She met a man who wanted to marry her, but her parents refused. She then met another man who never had any intention of marrying her. However, she has given birth to six of his children. Due to stereotyping of people with disabilities, potential mates do not want disabled partners.
During the war in Uganda, persons with disabilities were threatened and tortured because they had disabilities. “We lost many lives. Many got killed, their families were ruined. [The war] affected us [PWDs] a lot. In the rural areas it was worst for persons with disabilities. They could be tortured. The rebels would say that persons with disabilities were the mothers and father of the UPDF. If they did not find any other people [while raiding a village] they would target persons with disabilities. They would think we were reporters. They would target [us] for torture.” Lucy described her friend, Charles Okoya Laliya who was shot then pushed into his hut. His hut was then set on fire.
Those in the municipality stayed in the GDPU compound. When violence was at its peak, many persons with disabilities took refuge in the GDPU compound and its buildings. The centre is located just outside town but right next to the police barracks. During the time when many persons with disabilities camped at the GDPU compound, the LRA never attacked the place. Even though it was safe, the conditions were crowded, with people sleeping in small buildings, cooking and washing outside.
Lucy stayed in the compound during this time as well. “I stayed in the centre for six months. It wasn’t easy. We had to go for water far away. We used to go to town for food. At the time here it was sort of remote. This was an outskirt of town. In the evening many would leave for town but we stayed here. By then there was only one building [to sleep in]. Eleven families stayed here by then. People would sleep on their mats, we would cook outside.”
Lucy was encouraged to join the board of the GDPU by the current MP in 1992. At that point she was a member in the disability movement and took part in marching and organizing concerts. At first she was hesitant to join, but he saw her potential and helped Lucy gain confidence. In 2002, Lucy lost her position on the board but was re-elected later as the Municipality representative.
Lucy’s work with the disability movement and on the board has changed her immensely. “Being active has built a lot of confidence in me. Now I have the courage to stand up and declare what should be done and what are our rights when fellow persons with disabilities are abused and mistreated. First I was shy and I would walk away. Now I have the courage.” Lucy has been a member of the Gulu Disabled Persons Union’s board since the beginning in 1992.
When Lucy was three years old, she had eye cancer and became blind. One year later, she had an eye operation. After the operation, she began her education at the Madera blind school. Lucy finished her primary education and began her secondary education. Unfortunately, due to the lack of Braille materials she was unable to continue her education further. She attended a domestic/agricultural training school for the blind for a year.
After the agricultural school, Lucy went home with her uncle to Pece. This was in 1971, when she was 15 or 16 years old. She stayed at his home for 6 years. She then heard a rehabilitation centre in Kampala had been opened. She traveled to Kampala where she followed training in weaving furniture out of cane materials.
Back home in Gulu, she worked for two years in a workshop putting her weaving skills into practice. Then everything changed. In 1979 the revolution took place. Amin was ousted and Obote returned to power. The exiles that had stayed in Tanzania now came back. Lucy says: “During that time, there was a lot of destruction. All the materials [necessary for weaving the furniture] were spoiled. I could no longer continue with my employment.”
Since that moment, Lucy spent her time mainly at home. Finally, in 1994, she decided she wanted to be a teacher. She applied to become a licensed teacher and she became employed. In 1998 she went for training as a grade 3 teacher. She completed the training in 2002.
Being disabled has hurt Lucy’s opportunities for marriage. Lucy has never officially married. She met a man who wanted to marry her, but her parents refused. She then met another man who never had any intention of marrying her. However, she has given birth to six of his children. Due to stereotyping of people with disabilities, potential mates do not want disabled partners.
During the war in Uganda, persons with disabilities were threatened and tortured because they had disabilities. “We lost many lives. Many got killed, their families were ruined. [The war] affected us [PWDs] a lot. In the rural areas it was worst for persons with disabilities. They could be tortured. The rebels would say that persons with disabilities were the mothers and father of the UPDF. If they did not find any other people [while raiding a village] they would target persons with disabilities. They would think we were reporters. They would target [us] for torture.” Lucy described her friend, Charles Okoya Laliya who was shot then pushed into his hut. His hut was then set on fire.
Those in the municipality stayed in the GDPU compound. When violence was at its peak, many persons with disabilities took refuge in the GDPU compound and its buildings. The centre is located just outside town but right next to the police barracks. During the time when many persons with disabilities camped at the GDPU compound, the LRA never attacked the place. Even though it was safe, the conditions were crowded, with people sleeping in small buildings, cooking and washing outside.
Lucy stayed in the compound during this time as well. “I stayed in the centre for six months. It wasn’t easy. We had to go for water far away. We used to go to town for food. At the time here it was sort of remote. This was an outskirt of town. In the evening many would leave for town but we stayed here. By then there was only one building [to sleep in]. Eleven families stayed here by then. People would sleep on their mats, we would cook outside.”
Lucy was encouraged to join the board of the GDPU by the current MP in 1992. At that point she was a member in the disability movement and took part in marching and organizing concerts. At first she was hesitant to join, but he saw her potential and helped Lucy gain confidence. In 2002, Lucy lost her position on the board but was re-elected later as the Municipality representative.
Lucy’s work with the disability movement and on the board has changed her immensely. “Being active has built a lot of confidence in me. Now I have the courage to stand up and declare what should be done and what are our rights when fellow persons with disabilities are abused and mistreated. First I was shy and I would walk away. Now I have the courage.” (Profile by Annelieke van de Wiel)
Simon Ojok
Simon is on the board of the Gulu Disabled Persons Union. He is visually impaired, and uses materials in Braille. In spite of his disability, he has received his Bachelor degree in Development Studies from Makerere University.
Everything Simon had was destroyed in the war. He was displaced and now cannot return to his land because others have already moved back to it.
Simon explains his own experience in the context of others with disabilities, “I myself started being independent from P1 up to university. Other people should also be independent, economically and politically. They should be made free. This can only happen if they unite and focus.” Simon emphasizes that, “The best way to help a person is to make this person help himself. It is important to give some guidance here.”
In Simon’s view, an important issue for disabled youth is training in income generating activities, so that they can become independent and do not have to rely on their families, but can actually provide for the families. Simon also mentions that youth with disabilities can be utilized in resettlement. Youth with disabilities have not benefitted from government programs for youth participation.
He also has a suspicion that most governmental officials are not familiar with or do not even know about the persons with disabilities laws and policies. Unfortunately, government officials view the advocates as trying to challenge the government. This hampers the dialogue between the two groups, and government representatives become defensive. However, there can be positive gains from working with the government when the government sees the advocates as partners rather than challengers.
Simon explains what keeps him going in his advocacy efforts, “People approach me with so many challenges that they face. It is this and their appreciation which keeps me going.” As a university student, Simon was involved in the PWDs movement at the national level with UNAB, who he still has contact with. Simon currently represents Omoro County and the youth in Gulu and Amuru through his work on the board of the Gulu Disabled Persons Union. (Profile by Annelieke van de Wiel) Back