The Gulu Disabled Persons Union is the oldest and largest organization working for persons with disability (PWDs) in northern Uganda. GDPU was set in 1979, following the fall of the dictator Idi Amin, to make it easier for PWDs to receive food aid. Its mission expanded after the rebellion of the Lord’s Resistance Army, which caused widespread death, destruction and disability in the north. In the years since the war, GDPU has sought to integrate disability rights into reconstruction, as described in these pages.
GDPU is a network of associations which represent different constituencies: landmine survivors; women with disabilities; the deaf; and the blind.
GDPU is managed by an executive committee of 12 delegates from the sub-county associations, all of whom have a disability. Five of the nine staff members also have a disability. This ensures that the organization is representative and also motivated. GDPU has also reached down into the villages to strengthen its grass-roots membership.
GDPU approached AP in 2007, and we sent two Peace Fellows to GDPU in 2008 and 2009 – Annelieke Van Der Weil (2008) and Bryan Lupton (2009). Annelieke helped GDPU with fundraising and Bryan built the GDPU’s website.
Also in 2008, AP was asked to work with a new organization, Survivor Corps, in building a program of support for disability rights in three African countries – Burundi, Rwanda and Uganda. AP invited GDPU to participate as the Ugandan partner and over the next two years, GDPU undertook a number of important initiatives for the program which are described on this page.
AP continued to support GDPU’s advocacy, and Peace Fellow Christine Carlson (2010) helped GDPU members to produce a colorful advocacy quilt which described many of the challenges facing PWDs following the long war. Peace Fellows Rebecca Scherpelz (2011), Dane Macri (2012), John Steies (2013), and Lauren Halloran (2017) have focused on the lack of services for people with disability, particularly toilets. These pages owe much to the thoughtful writing of our Peace Fellows, and we thank them all.
Give a S#!T! for Accessible Toilets!
AP is supporting a campaign by GDPU to make sanitation services more accessible to persons with disability in Gulu district. Peace Fellow Rebecca Sherpelz raised the alarm in 2011 and donated some of her fellowship money to the construction of an accessible toilet at the Gulu Bus Park. Rebecca raised $2,500 for the project through her university in early 2014. Peace Fellows Dana Macri and John Steies have kept up the good work and helped AP to raise over $14,000. AP will be sending a long-term Fellow to Uganda in 2014, to help GDPU persuade the local government to integrate disability into long-term sanitation planning. Please, click here to donate to GDPU directly.
The crisis of disability that still grips northern Uganda was caused by war. Yoweri Museveni’s victory in 1996 was deeply resented by the northern Acholi tribesmen, and triggered two Acholi rebellions. The first, led by Alice Lakwena, was defeated in 1988. The second, headed by Joseph Kony became the Lord’s Resistance Army and spread terror across north Uganda for the next twenty years. The LRA was able to maintain bases in Sudan, which was hostile to Museveni’s government.
The long-running LRA rebellion produced enormous suffering and devastation. The rebels abducted thousands of children to serve as soldiers, and turned them against civilians. In response, the authorities set up internment camps. According to the UN Office for the Coordination of Humanitarian Affairs (OCHA), the war displaced nearly 95 percent of the Acholi population in three northern districts. By 2006, 1.7 million Ugandans lived in more than 200 internally displaced person (IDP) camps.
Displaced and Disabled by the LRA
Millions of Ugandans were displaced by the Lords Resistance Army, and many lost limbs during the war. This square was painted onto cloth by Patrick Okyoyo for the Gulu Disability Quilt. It shows an IDP family fleeing from LRA fighters. For more on the quilt click here.
This resulted in massive disability. Poor living conditions in the camps led to spinal meningitis, spinal injuries (paraplegia/ quadriplegia), preventable blindness, and polio. Almost 1,000 Ugandans lost limbs to LRA landmines. By the end of the war, according to the Acting District Planner of the Gulu local government, the number of Ugandans with a disability in the district of Gulu alone stood at around 50,000 – 14% of the population. This compared to the national average of 10%. None of these figures were precise, however, and accurate data was difficult to come by.
No Sporting Chance: GDPU has led efforts to increase recreational facilities for people with a disability.
After the LRA rebels withdrew to neighboring countries in 2008, the government pressed ahead with the transition to peace. But the special needs of PWDs were overlooked in the rush. Mendi Njonjo, AP’s field officer in Uganda, visited the large IDP camp of Opit in spring 2008 and found that most able-bodied IDPs had returned home. Most of those remaining were elderly or had a disability. Yet services for PWDs were totally inadequate. Public toilets and vocational schools were without ramps for wheelchairs. The camps were short of food.
Mendi met one visually-impaired woman, Elyphansia Nyaga, who was caring for seven grandchildren on five cups of maize a month – and even that was delivered two weeks late. Ms Nyaga was totally dependent on the generosity of other IDPs. Yet it was at this time that the World Food Program began to reduce food rations.
The goal behind this was to empty the IDP camps and restore an appearance of normality to the north. Those who owned the camp land also began to put pressure on IDPs to leave, so that they could clear the land and qualify for compensation. Yet many disabled IDPs like Ms Nyaga, who was elderly and had many dependents, lacked the means to return home. In addition, it takes several months for abandoned farms to start producing food again and many disabled IDPs lacked the resources and help from able-bodied relatives to get their farms running again. Ms Nyaga had no adult relative to help, because her daughter had died in the Opit camp. Nor did these IDPs even know if their land would even be waiting for them, because so much land had been seized in the wake of the conflict.
At the heart of these problems lay a profound lack of understanding about the needs of PWDs. Peace Fellow Annelieke van de Wiel, wrote in a blog: “The radio broadcasts urging people to go home disappear into thin air when it comes to targeting the deaf. Government support in the form of supply of hoes and seeds are useless to the blind. If you are dependent on your wheelchair for some form of mobility, how are you going to find transport to go back home? And what is ‘home’ after having been away for so long?”
The Challenge of Accessibility: Even with wheelchairs, very few public services are accessible to people with a disability. Police stations, law courts, schools and hospitals not only provide essential services, but open the way to the enjoyment of rights that should be enjoyed by all.
The rush to empty the camps meant that the crisis of disability was transferred to the villages, where it would be much more difficult to manage. Villagers were in a mood to move on past the war, and unlike the crisis of displacement, which had affected everyone, most viewed disability as a private matter for the affected individuals. This ignored the fact that large numbers of families coped with the challenge of caring for disabled family members – making this very much of a community issue. The attitude was one of ignorance, indifference and ever fear.
The added so much to the anguish of parents that they would think of their disabled child as a mistake or aberration. As Peace Fellow Rebecca Scherpelz (2011) wrote in a blog: “A child with a disability may be ‘counted’ differently by parents who say, ‘We have four children and one who is disabled.’”
Parents would also blame each other for what was perceived as a misfortune or curse from God. This could lead neighbors to assume that the wife had done something wrong with her life. According to Peace Fellow Dane Macri: “Fathers sometimes abandon the family to rid themselves of the shame and increased responsibility of taking care of a child with a disability. The child may be forced to live far away from home in neglect and isolation due to misplaced resentment. Opportunities for educational and social development are often nonexistent. It is not entirely uncommon for the child to be fed only once a day to reduce the frequency of the child’s bowel movements as there are no adequate and accessible facilities for a person with a disability to use the washroom.”
The Disabler: Monica Piloya embroidered this square for the Gulu Disability Quilt. Landmines were widely used during the LRA rebellion and took a terrible toll on civilians. For quilt profiles, click here.
Indiscrimination flourished in this atmosphere of ignorance and shame. Blind people were ignored on the roads. People with epilepsy were turned away from restaurants, out of a mistaken belief that epilepsy could be contracted from saliva. As Rebecca observed: “In a society with so many prevalent transmittable diseases (malaria, tuberculosis, and HIV/AIDS, to name a few of the most common), you cannot necessarily blame society for their ignorance.”
When the National Union of Disabled Persons of Uganda (NUDIPU) hosted a workshop in Gulu in July 2012, it was discovered that the venue had been double-booked, NUDIPU’s workshop was moved to the yard under a tent, which lacked accessible facilities. The director of GDPU, Mr. Semakula Fred was forced to leave early because he used a wheelchair. Less than a week later, a GDPU team traveled to Nwoya, a new district, to meet with the local government. The meeting took place in a new government center that lacked ramps. The two GDPU members had to be pulled inside.
As Rebecca and others have written, this type of discrimination was far more subtle than bigotry or violence, but harder to combat. Indeed, says GDPU, disability rights is challenging precisely because it asks that a person’s worth should not be determined by “disability.” As Rebecca wrote: “Until that notion is fully realized, subtle discrimination of PWD persists: being pitied rather than championed; assumed incapable rather than empowered; spoken to rather than listened to; led rather than followed.” PWDs will remain marginalized, excluded from the decision-making process and lacking in confidence – which will deepen their isolation.
Uganda ratified the UN Convention on disability rights (CRPD) in September 2008. Five years later, there are still no national guidelines on accessibility, the lives of PWDs have not visibly improved, and advocacy on behalf of PWDs is still an uphill battle. At the district level, PWDs are excluded from government programs on return and resettlement because they cannot even enter government offices for policy discussions.
PWDs also find it hard to obtain justice from police stations and law courts, most of which offer no sign language for the hearing-impaired. PWDs are prevented from getting health services because many hospitals and health centers are inaccessible. 61.5% of PWDs in Guly had not received HIV/AIDS education by 2011. In 2012, 51% of the children with disabilities in Gulu did not go to school. There are no technical specifications for the building of ramps and other assistive devices (eg door knobs). Even when ramps exist, they are often too steep or narrow to allow for proper use. All of this has perpetuated the misconception that PWDs are helpless and dependent on handouts and pity.
In our own words: Members of the GDPU express their hopes and dreams in this moving video by Peace Fellow Rebecca Scherpelz.
Sanitation services symbolize these many challenges. In the summer of 2011, Gulu had precisely one accessible public toilet – and that was in the GDPU compound. Peace Fellow Rebecca Scherpelz blogged about the scandal in one September 2011 blog, which she appropriately called ‘When Nature Calls, And Society Hangs Up:
’“The toilet. The latrine. The bathroom. The washroom. The WC. The commode. The john. No matter what you call it and no matter where you are, the fact of the matter is, you use it. Consider how many trips you make to the restroom each day. At least two or three? Think of any public restroom in an airport, movie theater, office, etc, built or renovated in the last 20 years; since the American with Disabilities Act of 1990 (for my US readers), we likely take for granted that lone stall at the end with the wider door, strong handrail, and turning space for a wheelchair.”
Women with disability are commonly thought to be immune to HIV/AIDS, which makes them more vulnerable to rape. This photo was taken by Peace Fellow Christine Carlson at a mass testing for people with disability in the township of Lakwana. Four out of the 76 people tested were positive.
Women with a disability are at a particular advantage, particularly if they have lost a husband and are heading the family. Peace Fellow Dane Macri (2011) blogged: “In an interview with Human Rights Watch, Erica, an Acholi woman who is deaf, expresses how she lost one of her children during childbirth because the nurse did not communicate to her that she was going to have twins. Women with disabilities experience stigma and sexual violence. They can find it hard to build meaningful and lasting relationships. Women with a disability who give birth are often abandoned by the male counterpart and the woman is left to take care of the child by herself.”
Uganda has brought down the rate of HIV-AIDS by using common-sense and avoiding moral judgments – but not when it comes to PWDs. Rebecca listed some of the myths in a blog: “One myth is that PWDs are immune to HIV/AIDS. Some even think that having sex with a PWD can be a cure!” As Rebecca observes, this myth can have dangerous consequences because it means that women with disability are targets for “casual” sex:
“A PWD might think, ‘Well, this person wants to have sex with me; there may not be another person who comes along.’ In one case reported by NUDIPU, a woman with disability infected 50 people after 25 married men engaged in unprotected sex with her, consequently infecting their wives. While some responsibility lies with the woman, the 25 men exploited her vulnerable situation because they thought (a) she was immune and (b) would be lucky to have them.
“The reality is that PWDs have all of the same desires, interests, and rights as someone without a disability. They want to have sex. They DO have sex. They – like everybody – deserve to know about the risks of unprotected sex, especially in regards to HIV/AIDS. Those who take on the important role of educating the community on HIV/AIDS also must take responsibility for making that information accessible: host the session in a building with a ramp; hire a sign language interpreter; provide materials in Braille; etc.
“Yet one 2010 survey by NUDIPU found that 61.5% of respondents – primarily females – had NEVER received HIV/AIDS services! Once again, there is a problem of accessibility: HIV/AIDS training centers are not physically accessible; education materials are not available in Braille for people with visual impairments; educators and health care workers do not speak sign language. How does a person who is blind know that a condom is expired if it is not marked in Braille? How does a person who is deaf know that free condoms are available at the local health center if it was a radio broadcast?”
The challenge facing PWDs has been worsened by their lack of political representation. PWDs are one of the few groups that do not participate in the work of village committees, where important decisions are taken on local issues and budgetary matters. Seats have been reserved for PWDs on district councils, and some leading GDPU members like Caroline Adong taken advantage. But they are the exception. At the national level, several MPs with disability have formed a caucus and GDPU has close relations with them. But they have to vote along party lines on budgetary issues.
Government policy – or rather the lack of it – has compounded the problem. In 2010, the government was still working with the 2002 census. Early drafts of the government’s Peace, Recovery and Development Plan – the road map for reconstruction in Northern Uganda – made no mention of PWDs. Later versions simply referred to PWDs as “vulnerable.” Overall, Uganda’s donors have showed little of the urgency in peace that they appeared to feel during the war although USAID and OSI have made disability a priority and are helped by imaginative funds like the Leahy War Victims Fund. They, however, are in the minority and much of their money goes to northern NGOs to be sub-granted to Ugandan NGOs. External funding is critically important because Ugandan advocates are almost entirely dependent on donor support.
Fortitude: GDPU’s biggest asset comes from members like Simon Ojok. After being almost blinded by LRA fighters, he earned a degree at the university. He and his partner Joyce care for the four children of Simon’s brother, who was killed in the war. He is pictured here with the square he made for the Gulu Disability Quilt.
GDPU was a seasoned advocate, with many achievements to its name, when it formed a partnership with AP and Survivor Corps in 2008. The two years that followed produced important outcomes. These are summarized in the box below and laid the foundation for GDPU’s work with AP today.
Between 2008 and 2009, GDPU was supported in the field by John-Francis Onyango, a well-known Ugandan lawyer who headed Survivor Corp’s Uganda program and by Mendi Njonjo, AP’s Africa representative. The team began by canvassing GDPU members. They found that access to public buildings – police stations, law courts, health centers – was the number one priority. With this in mind, John Francis helped GDPU to develop a consistent set of standards, which could be used by government inspectors and building in making buildings more accessible. Later in 2008, the field team secured an important commitment from a one of the district sub-committees (Lalogi) to modify buildings. In 2009, John-Francis (a lawyer by training) drafted by-laws which would give the standards some legal teeth.
Meanwhile, Survivor Corps organized training for GDPU activists in advocacy and peer to peer support – two of the Corps’ specialities. (The same approach is used by AP’s partner in Vietnam). The program then purchased three computers for GDPU. This allowed AP to provide IT training for GDPU staff, and 2009 Peace Fellow Bryan Lupton helped GDPU to post a new website.
The fact of working with international partners helped GDPU reach out to aid agencies and the International Criminal Court, which was seeking civil society allies as it built a case against the Lord’s Resistance Army. The ICC agreed to seek testimony from disability advocates like GDPU.
All of these efforts finally came together on November 25, 2009 when the Gulu municipal and district councils responded to the pressure and agreed voted to make schools, hospitals and health centers throughout Gulu accessible. It was the most significant outcome from two years of advocacy and represented a major policy change.
The campaign continued to bear fruit after funding ran out and Survivor Corps withdrew. GDPU officials later reported that these two years of intense advocacy had given GDPU the confidence to petition the Ugandan authorities and international agencies. At the GDPU’s urging, the World Food Program (WFP) agreed to organize a distribution of emergency food aid for PWDs, as they had done after the Amin era, and increase the food ration. The GDPU was also invited to join the disaster management committee of NGOs in Gulu.
In the years since, GDPU has expanded its efforts to break down the barriers that were described earlier. One popular program, which provides sports for children with a disability has been funded by several GDPU friends – War Child Holland, Motivation UK, Comic Relief, and The Kids’ League. It kicked off in June 2012 with a series of training for volunteer coaches, and tournaments for 300 children from five primary schools. The athletes took part in wheelchair basketball, showdown, volleyball, and baccia. The sports program has continued into 2013, with the enthusiastic involvement of AP’s Peace Fellows.
GDPU also offers villagers with disability a rare chance to participate, through its decentralized structure. GDPU’s individual members meet in villages and elect representatives to serve on parish committees; parish representatives then elect representatives to the sub-country or municipality level. The representatives then elect members to the district level.
Thanks to the advocacy of GDPU and others, people with disability are also guaranteed seats at the level of local government. PWDs sit on the village committees at the level known as LC1. Two PWDs are also represented at the next level up (LC2); at the sub-county level (LC3), which oversees the provision of services; on municipal councils (LC4), which decide on local government by-laws and ordnances; and finally on the district council, which administers the district of Gulu (LC5). Caroline Adong, a prominent member of the GDPU, sits on the Council and has become a powerful and well-respected advocate for disability rights in general and women in particular.
In 2011, Peace Fellow Rebecca Scherpelz shone a spotlight on accessible services with a powerful blog,
Changing Policy and Improving Lives in Gulu District
GDPU’s advocacy in 2008/2009 produced an impressive list of outcomes, with support from Survivor Corps and AP:
Setting standards: Working with the Uganda National Action on Physical Disability (UNAPD), GDPU drafts technical standards for modifying buildings and improving accessibility.
Acquiring skills: The program trains 25 GDPU activists in peer to peer support and advocacy in Gulu. Ten are selected to work as “accessibility auditors” and survey buildings (October 2008).
Community buy-in: Representatives from 20 parish development committees in the Lalogi sub-county sign the Lalogi declaration, committing them to modifying buildings (December 2008) Identify buildings: A GDPU audit team conducts a survey and identifies 34 public buildings in 3 sub-counties which require modification (spring 2009).
Legal standards: John-Francis Onyango, the program’s field officer, drafts legal by-laws to enforce the technical standards (Summer 2009).
IT support: The program provides GDPU with three computers and IT training (August 2009).
Access to justice: The International Criminal Court (ICC) agrees to include PWDs in outreach to civil society.
Humanitarian aid: In response to a GDPU petition, the World Food Program increases emergency food aid for displaced families with a disability and sets up a distribution process.
Participation: GDPU is invited to join the NGO disaster management committee, which meet regularly in Gulu to coordinate humanitarian activities.
Political action: Responding to pressure from the campaign, the Gulu municipal and district councils votes to make schools, hospitals and health centers throughout Gulu accessible (November 25, 2009).
When Nature Calls, Society Hangs Up. The blog exposed the scandalous lack of accessible public toilets for people with a disability in Gulu. It produced a powerful impact – not least at AP. Here, once again, was a recurrence of the problem of accessibility which we had worked on with GDPU and Survivor Corps in 2008-2009. We decided to re-engage, and were able to draw on the skills and energy of two remarkable Peace Fellows.
Give a S#!T! for Accessible Toilets: GDPU oversaw the construction of this accessible toilet at the Gulu Bus Park in 2013 and is hoping to build more toilets and lobby the district government. Click here to donate.
In 2012, Peace Fellow Dane Macri from Canada picked up where Rebecca left off and secured a grant from Handicap International to build a toilet at the Bus Park. However the project ran into difficulties and could not be completed. Rebecca and Dane generously contributed funds that were left over from their own fund-raising as Fellows.
This enabled the 2013 Fellow, John Steies, to hire a new contractor and improve the design of the toilet. The toilet was inaugurated on August 14, with GDPU members and local dignitaries in attendance. The Aworowinny Construction Company had produced a sturdy building, complete with running water, and pledged to monitor it for the next six months.
AP and GDPU returned to the project in early 2014. Their goal was to build on the foundation laid by Rebecca, Dane and John, and urge the district authorities to incorporate accessibility into the long-term sanitation plan for Gulu district. AP also returned to the fundraising trail. Dane was able to raise a significant sum from a generous benefactor in Canada, and Rebecca launched her own fundraising appeal at the University of Maryland. With GDPU committed the search is now on to send another peace fellow out to Gulu to build one more toilet and develop a long-term strategy that would benefit the entire district.
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 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)
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)
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)
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)
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 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)
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 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)
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)
|Ugandan Philanthropy: AP’s 2008 Peace Fellow, Annelieke Van Der Weil, organized a fundraiser in Kampala with Dora Mwima (Miss Uganda) that raised $3,000 for displaced Ugandans with a disabled family member.|
Between 2009 and 2013, AP recruited 6 Peace Fellows to work at GDPU. The first, Annelieke Van Der Weil, helped GDPU to organize a major fundraiser in Kampala for IDP families with a disability. She hosted the event with Dorah Mwima (photo), a friend and well-known beauty queen. The event attracted 12 Ugandan corporations and raised $3,000. Philanthropy, it appeared, was alive and well in Uganda.
2013: John Steies
(University of Minnesota)
2012: Dane Macri
2011: Rebecca Scherpelz
2010: Christine Carlson
2009: Brian Lupton
2008: Annelieke Van Der Weil
Brian Lupton, the 2009 Peace Fellow, helped GDPU to post a website and use its new computers. Christine Carlson (2010) helped GDPU members to produce panels for an advocacy quilt which was exhibited at the Gates Foundation and has since been shown at several other exhibitions in the US. Christine also produced photos which were used in the prestigious Forced Migration Review.
Improving accessibility has remained a major goal for GDPU and its partners, and in 2011, GDPU embarked on an “accessibility audit” with support from World Vision. A GDPU Accessibility Audit team visited seven buildings in three sub-counties (Paicho, Bungatira, and Unyama) and checked out 2 schools, 3 health centers, and 2 public offices.
The 2011 Peace Fellow, Rebecca Scherpelz brought the focus back to on accessibility in a powerful blog When Nature Calls, Society Hangs Up, which exposed the scandalous lack of accessible public toilets in Gulu. The following year, Dane Macri (photo) from Canada, who followed Rebecca as a Peace Fellow, secured a grant from Handicap International to build a toilet at the Bus Park. The project ran into difficulties and could not be completed, so Rebecca and Dane generously contributed funds left over from their own fund-raising as Fellows. This enabled the 2013 Fellow, John Steies, to hire a new contractor and improve the design of the toilet. The toilet was inaugurated on August 14, with GDPU members and local dignitaries in attendance
Peace Fellow Christine Carlson (2009) wrote an article on GDPU for the prestigious Forced Migration Review – one of the many cases where Fellows have publicized their hosts in the media.
GDPU is monitoring the toilet to ensure that it is not vandalized. If this can be achieved, AP and GDU hope to identify at least five more sites for accessible toilets. Looking further ahead, GDPU will use this most basic human need to demand that the district government integrate provide accessible services – something that would benefit the entire region.
The message that drives this GDPU program, like all others, is inclusivity, movingly captured in a short video by Rebecca Scherpelz in 2011. In much the same vein, Peace Fellows have continued to support GDPU’s sports program, which is aimed mainly at children. Dane Macri and John Steies took part with great gusto (photos), produced videos, and wrote lively blogs about the experience.
Read about the Gulu Disability Quilt by clicking on the image below.