Children with disabilities suffer greatly in Gulu. In extreme forms of Acholi religious practices these children were  used as human sacrifices.  Today their caretakers struggle to increase their value in society and secure the care that  is their human right.

Boy with severe cerebral palsy. 

The other children love to wheel him around. Everytime I came near he would scream with delight.

Catherine confined to a floor mat due to bed sores.

Baby with spinal cord deformity and mental impairment. A volunteer attempts to help her sit up correctly. She was abandoned as a baby at the orphanage. Her father is believed to be a General in the Lord’s Resistance Army.

Able bodied children and boy in wheelchair play in St. Jude’s field.

Girl with mental impairment laughing at St. Jude’s.

Statue of Jesus and children in the center of St. Jude’s Orphanage playfield.

After a harrowing six hour bus ride north from Kampala to Gulu I have finally arrived at Gulu Disabled Persons’ Union (GDPU). On the bus a mazungu (white person) missionary laid hands on a man with an injured leg in an effort to heal him. After a week in Gulu I have begun to learn that this is a common occurrence. Streets are lined with NGOs and churches offering a range of effective and ineffective aid to worn torn Gulu.

So when I accompanied the GDPU team to the St. Jude’s orphanage I was shocked to see, despite the heroic efforts of the staff, how few resources and little support the children with disabilities have.

I sat for a long time with Catherine whose bed sores are so bad that the rotting flesh of her buttocks attracts a swarm of flies that hum around her. She was laid out on a mat in front of her shared room and her glazed over eyes and hot skin showed that she had an extremely high fever and no hope of relief due to the lack of all medicine including a simple aspirin.

She still managed to smile when the other children crawled, wheeled or limped over to tease the mazungu that was greeting their friend. The enormous love these children showed each other left an indelible impression on my heart.

I rode back to our office past sign after sign for one NGO and church after another. I was disgusted that any of them could allow a child to live in such state.  I realize that there are competing priorities, complicated politics, corrupt leaders, a history of war to deal with, and many souls to save, but surely a suffering innocent child deserves to be the absolute priority.

Precariously held together with a patchwork of grants, and heroically negotiating between a tug-of-war of government and donor politics, GDPU stands guard over its constituents and works tirelessly to help children and adults like Catherine. “All issues concerning persons with disabilities in the northern Ugandan District of Gulu, are sent to GDPU,” Patricia Okwir, Program Assistant.

GDPU is officially a chapter of National Union of Disabled People of Uganda (NUDPU).  These agencies are recognized by the government as the service coordinators for PWDS, but receive negligible government funding. GDPU represents sub-agencies that focus on particular disabilities: from blindness, spinal cord injuries to mutilation from the war.  Depending on funding their staff fluctuates from 1-5 and does everything from coordinate resources, provide livelihood training and educate PWDs on their rights.  It will be a great honor to work this summer with Fred Semakula, and his team Simon Ojok, Patricia Okwir, John Aluma, Santo Oryema.

As my blogging continues I will highlight the work of GDPU and its sub-agencies carried out amidst the palpable legacy of civil war that taints every aspect of Gulu society.

Mr. Ambrose Murangira is running for Uganda’s Parliament! But he does not want to run for the seat reserved for persons with disabilities he is running for the Youth Seat instead. “I do not want to be defined by my disability.” We sat and talked through an interpreter for hours over African spicy tea.  I learned how after a bad case of the measles he became deaf at a very young age.  Ambrose has been a leader for equal rights for deaf persons all his life and at 28, he is currently the Chairperson for the Uganda National Association of the Deaf. From his incredibly positive attitude you would think that he had never encountered any adversity. I found him incredibly inspiring. He spoke about how there has been a lot of legislation for persons with disabilities though little money and little action by the Ugandan Ministry of Health or Ministry of Gender, Labour and Social Affairs.  I hope that his campaign succeeds and that he will create legislation that forces the Ugandan government to live up to its promises. The primary election is this month. Good luck Ambrose!

A few days ago I met with the impressive Mr. Apollo Mukasa (pictured above) who works for the Uganda National Physical Disabilities (UNAPD).  He has been working in coalition with other advocates including the outspoken, brilliant lawyer, Francis Onyango (pictured with me below) to formalize guidelines for accessibility. Uganda has demonstrated a commitment to increasing the standard of living for persons with disabilities (PWDs) by passing the Persons with Disabilities Act in 2006 and approving of the UN Convention on the Rights and Dignity of PWDs in 2008. PWDs are also guaranteed seats at every level of government including 5 in parliament.  However, in general private and government buildings lack basic accessibility accommodations, especially for persons with spinal cord injuries.

Apollo Mukasa:

“What does Apollo do if there is no wheelchair ramp? I must be carried in like a baby to my formal meeting. It is undignified. This must change in Uganda.”

The Building Control Bill has been approved by the Ugandan Cabinet and will proceed to parliament for a vote. If PWD advocates can add the accessibility standards guideline to the bill this would be an incredible victory. Uganda would become a leader in Africa for persons with disabilities.

Day one in Kampala. I pushed my load of luggage out of the airport to the welcome area and scanned the crowd for a sign with my name.  Thirty pairs of eyes laughed when I just blurted out “Fairway hotel?””Ah Fairway Hotel!”  Ten fingers pointed outside to a smiling uniformed man carrying a sign with “Mr. Christine” printed on it. In the distance were rolling hills covered with little lights and a starry night above.  In complete contradiction to what I was told the climate felt ideal for the human body… almost nurturing. It immediately made sense that this was the cradle of humanity. It was a brilliant greeting. Thirty minutes later I was covered in mosquito bites (thank goodness I had already started my malaria meds) and breathing smoke from open fires and kerosene lamps that line the teeming road to Kampala. 

Dina Buck,(http://advocacynet.org/wordpress-mu/dbuck/) my summer colleague was waiting for me the hotel. We shared some fresh pineapple juice and Indian food in the lush garden patio and planned how we would maximize our time before heading to Gulu. We agreed that we wanted a balance of meetings, preparation/shopping time and a good dose of local culture.  Dina agreed to let me drag her to dance shows! Breakdance Project Uganda- here we come.(http://www.myspace.com/breakdanceprojectuganda)   Later, lying under our mosquito nets we giggled sharing stories of home. To our surprise we both have a deep connection to the Puget Sound in Washington state and we cooed as we recalled smacking the sea water at night with our oars to ignite the glowing sea plankton.  We are going to have great time together.

We were brutally awoken by the sound of giant birds cawing outside our window and joked that a pterodactyl was trying to break in.  We enjoyed some of the best fruit I’ve ever had and then cabbed it to the center of town. After Dina guided me through purchasing a cell phone and exchanging money-neither of which were straightforward at all, I repaid her kindness by dragging her through some overwhelming street markets that probably sell everything one could imagine.

 It was in this hustle and bustle that I had my first heart wrenching encounter with a person who had lost the use of their legs and was required to crawl through the filthy streets.  In one hour I witnessed at least five more persons with similar disabilities. No wheelchairs or handicap accessible buildings in sight.  My work is cut out for me, but it’s going to be a magical summer.

The countdown to Gulu is approaching. DC training is over. Trying to read everything I can about where I’m about to go and hopefully get some good work done. When the stories seem overwhelming I think back to my work tutoring children with East African Community Services in Seattle. http://www.eastafricancs.org/.  Every story has a face. Cultural difference can be overcome with a little humor and grace.

Uganda Sketches:

“The first thing I missed about Uganda was how affectionate everyone was. When I got off the plane on my return home tried to hold my Mom’s hand and she pulled away. I wanted to go back immediately.” Friend in Seattle.

“Travel in the vicinity of Gulu, Lira and other areas north of the Nile is highly risky; if not downright suicidal.” Philip Briggs “Uganda” (1993)

“Uganda is great, the people are mostly very friendly, and Gulu especially has a really cool feel to it.” US Official in Kampala, Uganda.

“Today, I signed into law the Lord’s Resistance Army Disarmament and Northern Uganda Recovery Act of 2009. The legislation crystallizes the commitment of the United States to help bring an end to the brutality and destruction that have been a hallmark of the LRA across several countries for two decades…” President Obama, May 24, 2010

I LOVE ACHOLI BEADS: “Everyone in their Acholi tribe lost someone. (The Acholi tribe is from northern Uganda) They ended up in a hillside slum just outside of Uganda’s capital, where the only way they could feed their families and the orphans they cared for was working in a dangerous rock quarry, crushing rocks for $1 per day – the international standard for Extreme Poverty. Now these women earn a professional wage making Acholi Beads. They handcraft each bead from a piece of recycled paper, and creatively string them together into the beautiful pieces…They work from the comfort of their homes, or together in common areas, and have started their own legal cooperative to manage their successful jewelry business.”  http://acholibeads.com/story/

last night in carmel

After exams were over for my first year of graduate school I celebrated with champagne in a posh bar in Carmel. The table of strangers across at the next table congratulated me and my colleagues and asked me what was next, “Advocating for the disabled in northern Uganda.” The contrast of settings was surreal. They shifted uncomfortably in their seats and made a few comments about all those “poor victims in Africa.”  I smiled and explained that the region I’m going to is experiencing a renaissance of hope and that the individuals I’ve connected with during my planning have sent me the warmest letters of gratitude and joy.  A woman in the group asked how she could help. (Of course I gave them my AP website that includes a donations link!)

Once I threw myself into the idea that I was actually going to Uganda for the summer and started making inquiries the connections flooded in. I’m eager to meet all the wonderful people in Gulu who have sent me such warm messages.  The tone of their corrospondance astounds me after having read of the unfathomable horror that took place there.  Everyone I have met tells that the memories press closely but the sense of hope is equally present.

My images of mondern Gulu were best formed by my conversations with fellow graduate student Muwor Dior who is from southern Sudan. I gave him a worried look about finding accommodation and he returned with a belly laugh and, “Oh Christine, a family will take you in, everyone is wonderful there. You will have a great time.” The next day he connected me with Joyce Laker who is also an alumna from our school and from Gulu.  Not only was she extremely kind in offering me assistance with securing lodging but, to my surprise she she wrote, “My mother was the coordinator for the Union for a long period of time since its inception. …I am so excited for you and my mum will be very proud of you.” One more incredible sign that I’m supposed to be going to Gulu.

My heart is open and ready for more confirmation that not only will I be fine in Gulu,but my fellowship with GDPU will manifest incredible opportunities.  http://www.advocacynet.org/page/campaigngdpu