GDPU Chairman Simon Ongom and Beneficiary Onen Francis

The Councilor

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.”

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.

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.”

The Gulu Disabled Persons Union is on a mission. A mission to physically change the environment around them to ensure that accessibility becomes more than just a catchphrase for the Disability Rights movement. There is an Accessibility Audit team working with the GDPU that includes Okumu Santo, Chairman of the District Association of the Blind, Teddy Luwar, Local District Council III Representative for Women with disabilities, and Adong Carolyn Rose, the Vice Chairperson for the Gulu Disabled Persons Union. Together, they have been taking the Gulu Municipality to task for its shortcomings in accessibility issues.

“Accessibility” has several connotations, and relates to much more than the wheelchair ramp that I’m sure you envisioned when you first heard it. There are several other capacities of accessibility, in fact. There needs to be accessibility to information, accessibility to services, accessibility to communication, and even accessibility to the accessibility debate. Consider this:
For a person in a wheelchair, a building without ramps and adequately wide doorways is an inaccessible environment.

-For those unable to speak, a hospital that has no staff members trained in sign language is attempting to provide an inaccessible service
-For those unable to hear, important announcements broadcast over the radio are promoting inaccessible information
-For those without representation in the local government, political decisions are part of an inaccessible public process

People living with disabilities are shut out of life in so many ways that it can be discouraging to even leave the house. This is an issue that all communities struggle with and it occurs in a vicious circle: PWDs feel excluded and unheard so they stop speaking up about their particular issues, policy makers lack input from PWDs and fail to implement appropriate measures into policy, PWDS feel excluded and discouraged and things don’t change, and so on and so on.

This is where the auditors come in. I have had the opportunity to go around with this team from the GDPU as they inspect public buildings and meet with public officials about the need to include the interests of PWDs in the budgeting and planning process. The team is generally met with enthusiasm about the proposed partnership and real progress seems to be on the horizon. Currently, there have been some good faith efforts on the part of the government to build more accessible buildings but the work is sometimes misguided. The wheelchair ramps that the District Engineers build are generally not up to standard and generally just look like someone smoothed out a staircase. Consequently, the ramps are usually far too steep and not functional. The GDPU has recently developed a standardized set of accessibility guidelines that it is busy distributing to contractors throughout the country.

The Accessibility Audit team has made large strides towards bridging the divide between civil society at large and the people living with disabilities that it sometimes unwittingly excludes. These are issues that need to be addressed all around the world to some extent and Uganda’s policies, if implemented correctly, would be quite progressive. A large burden of the coordinating work is falling on the GDPU, but as this accessibility gap narrows, Uganda will continue on its way to becoming a model nation for not only Africa, but also for the world.

Accessibility Audit Team

Kilama Peter

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.

I went to a training on the UN Convention on the Rights of Persons with Disabilities in the Alero IDP camp and met several extraordinary individuals. One of these is 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.

Okello Justin

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.

I met this woman last weekend at an Internally Displaced Persons Camp. She has been living there since the mid-1990s, the most violent period of the war with the LRA. She was shot in the hand during an exchange of gunfire between rebels and government soldiers, but couldn’t get proper medical treatment. At the time, a line was drawn between the two sides and this woman was on one side, and the hospital was on the other. She couldn’t cross the street to get to the hospital, so she didn’t. She went home and was treated locally. Her friends and family brought her to a traditional healer who started by cutting her hand off at the wrist. The inevitable infection followed, and her arm was amputated up to the elbow. Without proper care, the infection refused to subside and she lost her arm up to above the elbow. After a month of local treatment, she finally got the opportunity to visit a hospital. There, in a final measure to control the injury, her arm was amputated nearly up to the shoulder.

She could have gone home and removed herself from her day-to-day responsibilities, but she didn’t. She could have sat under a tree and had everything brought to her, but she didn’t. Instead, she took in children who had been orphaned or abandoned. Some were related to her, some were not. She now has six kids relying on her for everything. She wouldn’t have it any other way, and she would never complain about it. She simply tells the story in a straightforward, unemotional narrative and goes back to work. She lost her home, and her arm, and much of her family, but she never lost her sense of survivorship. Or her smile.