A Voice For the Voiceless


The Advocacy Project (AP) recruits students to help marginalized communities tell their story and claim their rights.

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Speak. Encourage. Move. Curb. Understand. RESPECT.

Rebecca Scherpelz | Posted September 27th, 2011 | Africa

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Though I’ve been back in the US for almost two weeks, I’ve been having trouble sitting down to write this entry. The jetlag is over, so that excuse is no good since I can sleep past 4am again…I’m a week away from starting a new job (continuing disability advocacy work stateside in Indiana – yay!), but my current schedule is free, so I can’t peg busy employment, either…If I’m honest with you—and myself—writing this blog means that it’s over. That I’m home. That GDPU is 7,500+ miles away and yet somehow as close as ever.

In the last few weeks with GDPU, I had some good conversations with Fred, Project Coordinator, about “unpacking the vision,” as he called it. I know what GDPU’s mission and vision are: empowering persons with disabilities to lead dignified lives. But what does that mean, exactly? Like actually mean? Our conversation led to some great realizations for GDPU, and for myself. What does dignity look like to people with disabilities? To Gulu? To Ugandans? To post-war regions? To Americans? To the West? To you? To me? To people with disabilities (PWD)? To Fred, Monica, Simon, Irene, Komakech, Richard, Allan, Josephine, and others? To PEOPLE? How do they strive to maintain it, and how do others – including you and me – deny, define, or promote dignity?

This is the painting I got for GDPU when I left. It was done by a local artist in Gulu, Timothy, based on the theme "Disability is not Inability."
This is the painting I got for GDPU when I left. It was done by a local artist in Gulu, Timothy, based on the theme "Disability is not Inability."

This is the painting I got for GDPU when I left. It was done by a local artist in Gulu, Timothy, based on the theme "Disability is not Inability."

As a Peace Fellow with The Advocacy Project, my role was to amp up their efforts, mainstream their mission, promote their purpose both locally and abroad, and jump in with technological and grant-writing support where needed. I hope I succeeded in that task, with some admitted slip-ups along the way. And I’m excited to share that GDPU’s website is 95% finished, pending some aesthetic/technological switches (Check it out! www.guludisabledpersonsunion.org). If the training stuck, hopefully the website will be updated regularly by GDPU staff and become a source for services and sharing within the region. Also, see below for the short “In our own words” video featuring people with disabilities at GDPU.

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Truly, sustainability is always on my mind when it comes to international development: long-term impact versus short-term polish. Did my three months with them really make a difference? A marked change? Was it “not a summer for me, but a summer for them,” as I wished in my opening video blog? For now, time is my scapegoat to avoid answering. We’ll see…but I hope so.

I’m finding that where I take comfort in my departure is that though I am adjusting, missing, reliving, trying to maintain a relationship with GDPU, worrying about impact, and pining to return to Gulu, GDPU continues to do their work. More so, GULU continues to do their work. While Advocacy Project fellows often bring new ideas, energy, and knowledge in certain fields (especially technology), GDPU is its own everyday “advocacy project,” ready to face the task at hand.

Advocacy doesn’t stop when a Peace Fellow leaves her station. Advocacy doesn’t stop when the power goes out in the office, leaving the staff in the dark for hours or days at a time. Advocacy doesn’t stop when grants are rejected, policies are ignored, meetings are cancelled, roads are rained out, or wheelchairs break.

Advocacy is about educating yourself and others - like these caretakers of children with cerebral palsy in Koyo.
Advocacy is about educating yourself and others - like these caretakers of children with cerebral palsy in Koyo.

Advocacy is about educating yourself and others - like these caretakers of children with cerebral palsy in Koyo.

Advocacy stops when the job is finished; the mission met; the people served; the purpose fulfilled; the promise delivered. The best non-profits work for the day when they won’t be needed – when they can close their doors, turn off their computers, retire their logos, and make their fight a chapter in history because the problem is solved.

Realistically, that will probably never happen for most groups, including GDPU: war and violence will always leave destruction in its wake (like landmine survivors Irene, Stephen, and others from the LRA insurgency); children will lack quality and equal education (like the 51% of Gulu’s children with disabilities who don’t go to school); discrimination and prejudice will deny services (like the 61.5% of PWD who never received HIV/AIDS education); lack of leadership to enforce policies will perpetuate problems (like the government building in Nwoya without a ramp); dependence on donations will drive programming (like the grant-to-grant survival of GDPU); and everyday rights will be denied as others take it for granted (like going to the bathroom with ease and dignity). *See my previous blogs for more on each of these http://advocacynet.org/wordpress-mu/rscherpelz/feed/.

Advocacy is about demonstrating and sharing your purpose - like these partcipants in GDPU's HIV/AIDS awareness parade and debate in July.
Advocacy is about demonstrating and sharing your purpose - like these partcipants in GDPU's HIV/AIDS awareness parade and debate in July.

Advocacy is about demonstrating and sharing your purpose - like these partcipants in GDPU's HIV/AIDS awareness parade and debate in July.

But is that a reason NOT to speak up? Can progress not be made? Does short-term defeat warrant long-term surrender? For the people of GDPU, it is a resounding “NO.” They have already seen improvement and change and won’t throw in the towel. Even oppression, ignorance, discrimination, and the harshest of all, apathy, can’t stop advocacy. Much like a tree falling in the woods, as long as there is a voice and the courage to use it, advocacy happens. And thenyou hope that someone has the courage to hear it. GDPU can be an advocate. I can be an advocate. YOU can be an advocate.

That’s the beauty of it. I don’t have to be living in Gulu to support GDPU, PWD, and the disability movement in general. YOU don’t have to have a passport, speak the language, get the vaccinations, or shower with a bucket to lend your voice. Speaking up at your office if you notice there isn’t an accessible entry helps. Encouraging your child that his classmate with cerebral palsy ALSO likes Spongebob Squarepants helps. Moving a bike or trashcan that is blocking a ramp, Braille sign, or automatic button helps. Curbing your discomfort to stare at a “missing” appendage (or worse: staring so intently elsewhere that the veins of concentration in your face bulge…Note: a person with one leg knows he has one leg. He knows YOU know he has one leg. Act normal because it IS normal) helps. And understanding that access, opportunity, equality, justice, and support for people with disabilities is not a FAVOR but an inherent RIGHT changes things. If I’ve learned anything in my three years working with people with disabilities it’s that they don’t deserve, warrant, or want your pity – they deserve, warrant, and want your respect.

Advocacy is about creating, implementing, and maintaining policies and expectations, like GDPU's Accessibility Audit team checking out a ramp.
Advocacy is about creating, implementing, and maintaining policies and expectations, like GDPU's Accessibility Audit team checking out a ramp.

Advocacy is about creating, implementing, and maintaining policies and expectations, like GDPU's Accessibility Audit team checking out a ramp.

The “Thank You” Part:

On a personal note, there are many people to whom I owe the utmost and heartfelt gratitude for support, guidance, love, and help. To GDPU – it was an honor to serve with you. Thank you for welcoming me to work alongside you and learn from you. I hope we meet again. To the members and friends of GDPU – thank you for lending your voice and efforts to support PWD everyday. It. Is. Inspiring. To Mama and her family, ages 1 and up – thank you for housing, feeding, and embracing me each and every day. It was a joy to come home to you! To Gulu in general, thank you for your spirit of joy, generosity, and healing from the deepest hurts. I admire you so much.

Stateside, I owe countless thanks to the supporters and donors who made the experience possible – I hope I put your generosity to good use. If you ever get the chance to visit, please take the opportunity! To Iain, Karin, Erika, and Pegah at AP – thank you for guiding us fellows through the process and more importantly, for driving peace, advocacy, and collaboration on the global scale! Lastly, a fervent thank you to Mom, Dad, and my closest family and friends who let me rant via email, stayed up late to catch me on Skype, heard about my best and worst days, and curiously answered spontaneous phone calls from “out of area” numbers. I couldn’t have done it without you.

To those who I had the pleasure of getting to know, I am family – a daughter, a sister, an “auntie,” and a friend. To most of Gulu, though, I’m likely still an outsider: a munu, an aid-worker, a hassle, a helper, a donor, a development worker, a burden, a rich Westerner, an annoyance, a curiosity. And really…that’s okay. This is their Gulu, their Uganda, their suffering, their healing, their growth. If I’ve done even the slightest bit to support, promote, or champion their efforts, then I hope my time was well spent.

To GDPU and my Gulu family: Apwoyo matek tutwal. Apwoyo tic ki apwoyo konya. Cwinya opoke, mokena di kuja ki mokena di can. Aciro dugo. Amari. Apwoyo.

Kuc ki mara,
Akello Rebecca

The (in)accessible toilet: when nature calls and society hangs up

Rebecca Scherpelz | Posted September 8th, 2011 | Africa

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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. So why an entry about toilets? It might not be glamorous, but goodness knows it’s essential.

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.

Now shift your imagination to Gulu and the life of a wheelchair user. It’s the middle of the day; you’re busy at work; and it’s time for a “short call.” Out the door and down the hall, right? Not quite. Imagine if that most simple and essential of tasks was interrupted by any number of obstacles: steps, narrow doors, ditches, carelessly placed items…you know—discrimination and exclusion.

Gulu's only public accessible pit latrine - at GDPU.

In Gulu, GDPU has the ONLY public bathroom that is accessible to people in wheelchairs or tricycles. It is a small, 6-stall pit latrine located on the GDPU compound. Not only is there a ramp, but several stalls have handrails and cement seats for people who are unable to squat. With that in mind, consider the possible scenarios:

Scene 1: You work in downtown Gulu as a tailor, maybe 1 kilometer from GDPU. Nature calls and you prefer the 15-minute outdoor commute in your wheelchair or tricycle to use the facility at GDPU. You enter GDPU, greet the staff, wheel your way to the latrine, and head back to work after a 45-minute bathroom break.

Scene 2: You don’t have time to head to GDPU and spend nearly an hour of your day on the road. Instead, you opt to use one of the public bathrooms, maybe paying 200/=. Since it is a public pit latrine, it’s likely incredibly filthy from who-knows-what by who-knows-who; since your disability does not allow use of your legs, you slide to your hands and knees to crawl into the latrine and balance yourself as best as possible before crawling back outside, climbing back on your wheelchair, and returning to work.

Take your pick.

Here in Uganda, the 2005 UN Convention on the Rights of Persons with Disabilities (Article 9 on Accessibility) argued that the state parties would “Develop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public.” These are standards Uganda has committed to but has yet to meet, as implementation has been sluggish or policies have been ignored.

Seeing as Gulu and the Northern Region in general is in the midst of post-war reconstruction, it seems timely for newly built or renovated structures to keep these policies in mind. Yet Gulu remains largely inaccessible, especially but not limited to areas of personal hygiene.

One of my first assignments when I got to GDPU in June was helping to draft and polish a grant for UNDP (United Nations Development Programme). If approved, the $7,000 would go towards the renovation of the public toilet in the Gulu bus-park downtown. Additionally, seven homes in select Gulu sub-counties will receive updates to make homes – especially latrines – accessible. In addition to training the engineers and construction teams, these spaces would serve as models for future structures.

Meanwhile, GDPU has embarked on an “accessibility audit” with support from World Vision. Visiting seven structures in three sub-counties (Paicho, Bungatira, and Unyama), members of the Accessibility Audit Team checked out 2 schools, 3 health centers, and 2 public offices. Though seven is a small sampling of the district, it’s a start…

Honorable Adong Caroline and GDPU staff Ojok Patrick conduct an accessibility audit of local buildings.

The findings were neither surprising nor inspiring, as most buildings did not meet or barely met requirements. None of the places had policies on accessibility, and one person surveyed had no idea what “accessibility” means. Still, that’s why the audits were done, to lend fodder to the fire that accessibility is an ISSUE, and whether it’s due to ignorance, money, discrimination, or any other number of factors, GDPU is taking a stand.

An example of an accessible pit latrine. Note the wide doorways, firm handrails, and adaptable seat. And thank you for getting over the fact that it's a picture of a toilet.

Along with the audit, GDPU is doing a seven-day blitz of trainings and workshops, including: 2 days with service providers to discuss accessibility; 2 days of advocacy training for disability leaders; 1 day with teachers to learn how they can be better equipped to work with children with disabilities (CWD); and 1 day with parents of CWD to offer guidance on how to be supports and champions for their children.

And that’s how change happens – one connection, one workshop, one encounter, one empathetic moment that makes an able-bodied person stop, think, and realize. Will Gulu have ramps in every building before I leave on Monday? No. In a year? No way. In a decade? That’s pushing it…but will people be aware? Will they consider spending the same amount to build a ramp instead of steps? Will they consider accessibility a right and not a favor? Will change happen slowly but surely?

For now, I’ve gotta run…nature calls. I’m just glad I can make it past the three steps, narrow hallway, slippery floor, and high door handle to get there…

Twero Pa Lugoro: The Disability Rights Music Video

Rebecca Scherpelz | Posted September 7th, 2011 | Africa

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Call MTV. Get Ryan Seacrest on this. Is Casey Kasem still in the business? However it gets out there, be sure to check out this music video, straight from the heart of Gulu.

I hadn’t met Lagum Faith before she walked into the GDPU office selling copies of her latest music video. After seeing her video and hearing her original music, I knew I had to learn more. A few weeks later, I sat down with Faith as she shared her music and her story. Watch the video, follow the translated lyrics below, and read on for Faith’s powerful, sad, and inspiring story.

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Twero Pa Lugoro  (Rights for Disability) - Lyrics
By Lagum Faith

When you see a disabled person, please provide support.
Don’t despise the person.
What God has created, you can never change.
Me, who is singing, I don’t even see. I am blind.
I have sung for the rights of persons with disability.
In this world, people are just struggling with life.
Respect rights of persons with disability.

If you see I am blind, don’t steal from me. I am struggling for my life.
AVSI, we thank you for supporting us.
Even the government, we also thank you for supporting us.
If you see a disabled person moving on the road, please don’t despise.
Disability is not inability.

“My name is Lagum Florence Faith. I am a musician. Right now, I guess I’m 18-20 years old. Before I was blind, I tried to study in Pece Primary School, until the year 2001-2002 when I stopped studying in P3. I became blind in 2005 when I was abducted by the rebels.

I was rejected. My mother rejected me when I was still young. Then I grew up with my grandmother. My maternal home didn’t love me well…

When I sell, people steal. When I’m walking on the road, people ridicule me. So this made me sing this song about we disabled people. When you see someone, don’t ridicule. If you see a person selling, don’t steal.

I encounter a lot of problems. First of all, my own parents should have loved me. Now I’m renting alone. The fact that I am now renting a house alone, getting money to pay the rent and eat is now hard.

…If I wasn’t blind, at least I would work in someone’s business. But I can’t work because I am blind. Whenever I start selling anything, the business fails because there are those who come to steal. Above all, I also need to eat. I run out of money. These are the major problems I have.

I started playing music in 2008. I started with gospel songs. My first song was entitled MY BLOOD. It’s about Jesus’ blood poured down for me b/c I’m a sinner. Jesus’ blood washed me clean. [The other song] is called “Twero Pa Lugoro” (Rights for Disability)…

This song I sing is for the world to know that the disabled person can also do something. Or, for a parent who has a disabled child, to know that his/her own child is also able to do something like I’m doing.

It’s for this reason that I sing. And sometimes, I sing to show the abled people that I am able. And possibly, that’s a way to beg for help. I can’t beg people to give to me, but I beg them through songs. If I sang and it made you happy, you pick something and give it to me, I will have begged you.

In my future, the way I think, I must be a respected person. I will become a big person who is respected. That’s why I struggle to sing so that people know me throughout the whole world…so that they have that respect for me, and that support will be there.

Because if I sit quietly, nobody will know about my problems and help me. But now there is nothing. That’s why even education has defeated me.

I want if people are going to hear me, this is what I tell them: Whenever and wherever in the world they live, they should know that a disabled person is also a human being and can do anything an abled person can do. Secondly, if anybody who can help me with anything, support me because I don’t have the strength. Anything any person who can help me in the way of my education, I’m able to study whenever. …Help the disabled persons to educate them because disability doesn’t prevent one from being educated. You can even travel outside in the world.

And also through my songs. I want to continue with the song, but I don’t have the money. I want it to be put on the internet and I want help in any way possible.”

Interested in helping Faith? Contact me at rscherpelz@advocacynet.org for details.

(Lyrics translated from Acholi with help from Ojok Patrick and Aciro Moreen. Interview translated and transcribed with help from Ojok Patrick and Okumu Dickson – thank you!).

Band-Aids for headaches: Putting the “Do” in Donation

Rebecca Scherpelz | Posted August 29th, 2011 | Africa

As a disclaimer to the following, I’d like to start by saying that this is not an attack on donors…it’s not an ungrateful dismissal of people’s generosity…it’s not a childish tantrum that I wanted an orange lollipop when I got strawberry. When done right, donations (financial, in-kind, or otherwise) can truly be one of the most humbling ways for human compassion to shine, for both the giver and the receiver.

However, what happens when donations do more harm than good? When good intentions + poor assumptions of an organization’s needs + NGO’s fear of turning down donations = incomplete results? In the last few weeks with GDPU, several instances have come up where I smile through gritted teeth at the “impact” of donations.

A few weeks ago, Gulu received a generous donation of 50 wheelchairs from two organizations, one in Uganda and one from the states. A team of volunteers came to help assemble, fit, and distribute the wheelchairs. It was an empowering few days as most beneficiaries were receiving their first-ever wheelchair, a HUGE improvement from those who were accustomed to crawling on hands and knees. Some of the wheelchairs were especially excellent, as they were adjustable for children and had supportive headrests, a particularly important feature for children with Cerebral Palsy or hydrocephalus who may need more assistance to sit upright.

New wheelchairs: great fit!
New wheelchairs: great fit!

Three girls enjoy their new wheelchairs. These are examples of a great fit: not only do they fit each individual; the type of chair (large base + a large castor wheel out front) is ideal for Gulu's rough terrain.

New wheelchair!
New wheelchair!

A boy with hydrocephalus checks out his new chair, with a headrest!

Unfortunately, “great fits” were in the minority that day. Why?

a. “Second choice” chairs: Gulu received chairs after Kampala, meaning the best-quality chairs were already distributed. Maybe 60% of the chairs that made it to Gulu were hospital chairs. These are GREAT for wheeling somebody a short distance…but for people with spinal injuries they need more support than a fabric seat; people who have the ability to push themselves can’t have such armrests in the way of the wheels; anybody living in Gulu can’t use a chair like that on the mud roads here without risk of tipping, getting stuck, etc. Additionally, many hospital chairs are “one-size-fits all,” meaning they are often too big. In that case, the user has to overcompensate by leaning to one side; in turn, this leads to pressure sores and additional back problems (GDPU’s Fred, for example, was given a poor wheelchair after his accident as a teenager. He developed scoliosis because he favored his right side).

Wheelchairs in waiting
Wheelchairs in waiting

A fleet of chairs waiting to be distributed.

b. Informing and transporting people was difficult: Honestly, GDPU dropped the ball here, as mobilizing 50 people that they have a 2-day window to travel to Gulu for their new chair takes time and money that GDPU didn’t prepare for. For recipients (and their parents or caretakers), it takes money they don’t have to travel to Gulu. It takes proper transport that can carry a wheelchair home. It takes planning. They weren’t informed early enough, and in some cases, they weren’t able to come.

c. A “give away to anybody!” mentality: Poor mobilization and other challenges meant only SEVEN of 50 recipients showed up on Day 1 of Wheelchair Distribution. The volunteers doing the fittings were frustrated, and rightly so, as each chair takes time to assess and fit. But a mandate that “if people don’t start arriving soon, the chairs will go back to Kampala” caused a bigger scramble to make sure the chairs got to SOMEBODY, even if they weren’t on the original list. As a result, many recipients were from Gulu Municipality because they are close. Gulu town often takes priority over the villages because the concentration of demand is higher and the people are easier to access. Thus, the villages are often the last to receive aid.

I don’t have the perfect answer to this, but is it better to (a) ship wheelchairs from across the world or (b) invest that shipping money in Gulu to manufacture tailor-made chairs?

The other way that dependency on donations has manifested itself at GDPU – and, I’d imagine, many NGOs – is a “take what you can get” approach to soliciting funding. Having worked on multiple proposals and grants with GDPU, I can’t tell you how many times I heard “The donor wants to fund XYZ, not ABC, so let’s make sure we include a lot of X and leave out the B.” It’s the real-world version of “teaching to the test.”

But, what if GDPU would be better off with option B? What if PWD in Gulu could benefit, grow, and achieve MORE with B instead of X? Is GDPU really in a position to challenge the donor and say, “Thanks, but, here’s how your donation could REALLY make a difference…Here’s the type of programming this proposal really should support.” They are scared of angering the donor, so they ask for what they think they can get, rather than, maybe, what they need.

I’ll concede that donors have the right to give what they want and to request accountability. But shouldn’t they also donate responsibly to know WHY it is needed? Organizations should feel empowered to work WITH the donor to determine what is needed – and not face repercussions or risk rejection if their request differs slightly from the offer. Don’t hand me a Band-Aid if I tell you I have a headache.

Is an ill-fitting wheelchair better than no wheelchair at all? I don’t know…you’d have to ask the user. And I’m sure some of you are thinking, “Beggars can’t be choosers.”

But why do they have to be beggars? Why are recipients of donations less worthy of quality support than somebody who can pay for it? Why isn’t accessibility and movement a right, not a favor?

I don’t fault people for being desperate. I fault the system that isn’t supporting them to be otherwise.

Tip-off at GDPU

Rebecca Scherpelz | Posted August 21st, 2011 | Africa

Whizzing by in the shiny new athletic wheelchairs, you might have thought these children had been playing basketball all their lives. Yet for many of these children with disabilities in Gulu, this was a first-time experience – and they loved it!

Thanks to GDPU, War Child Holland, Motivation UK, Comic Relief, and The Kids’ League, 300 children will have a chance to learn, practice, and compete through a new project, Inclusive Disability Sports for Children in Northern Uganda (IDS). The pilot program started in Gulu, though as recently as July, GDPU exchanged a Memorandum of Understanding with the local government of Nwoya, the newest district in Uganda. Nwoya’s officials have expressed interest and a commitment to make IDS part of their regular programming! (Note: this was a big step, seeing as the local government building where we met wasn’t accessible…see my previous post, “Discrimination’s Veil,” for details!).

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A multi-year project supported by Motivation UK, IDS kicked-off its inaugural season in June, training volunteer coaches and recruiting participants from five primary schools: Gulu Primary, St. Jude, Laroo Primary, Laroo Boarding, and Mother Theresa. Tournaments have been taking place all summer long, bringing together more than 50 children with disabilities. They eagerly participated in a variety of games, including wheelchair basketball, showdown (think of a fusion between ping-pong and air hockey, where athletes with visual impairments listen for a ball with a bell inside), volleyball, and baccia (a game that is particularly good for children with more severe physically disabilities).

An athlete enjoys basketball practice at GDPU.
An athlete enjoys basketball practice at GDPU.

Explaining the importance of inclusive disability sports programming, GDPU Field Officer, Ojok Patrick, said “This is the first effort to provide opportunities for inclusive sports. The importances are many: one, it raises awareness that disabled children can also play sports. Two, it promotes the physical health of children with disabilities. Three, it creates awareness and advocacy issues for the community.”

Mr. Semakula Fred, GDPU Project Coordinator, added, “Kids in PE at school, they might just be the timekeeper, or stay in the classroom while the others are out. Sport is a tool for social inclusion and self-efficacy for PWD.”

This awareness also spreads to the community as a whole. At home, the children who participate in the IDS program may be able to more easily identify with their parents. Aloya Michael, Coordinator with The Kids’ League, added that these children “want to share what they have learned with their parents. Parents can be surprised to see boys and girls are picked up every evening” to practice and participate in this activity. Additionally, the “community has its own understanding of these boys and girls, so seeing them in this capacity changes that.”

Local officials from Gulu, who were also on hand for the ceremony where GDPU officially received the donated equipment, have gotten behind the program, too. Otto Aldo Okot, the District Sports Officer, announced that starting next year, inclusive sports would be included in the district sports calendar along with all other programming.

Volunteer coach Nume Allan, who also works for one of GDPU’s Member Organizations (Gulu Women With Disabilities), summed up the importance of inclusive disability sports. When asked why it was necessary for children with disabilities to be involved with sports, he did not miss a beat before enthusiastically answering, “Because they are human! They are capable! Disability is not a person. Deaf is not the person. Separate the disability from the person. Treat the person, not the disability. They can do anything!”


Discrimination’s Veil

Rebecca Scherpelz | Posted August 4th, 2011 | Africa

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The beast of “discrimination” takes many forms. Sometimes it is a blatant and vehement cry of hatred: a 1960s restaurant refusing to serve blacks or the homophobic murder of Matthew Shepard. Sometimes it is done with intentional stealth, in the hopes that nobody will notice: an employer overlooking a female candidate for a position when a pregnancy is disclosed. Sometimes it is subtle and inadvertent: a teacher asking for “four boys to help move a table” when four girls could have done it, too.

In Gulu, I’ve witnessed first-hand discrimination of Persons with Disabilities (PWD). Fortunately, it’s been neither violent nor aggressive, for the most part. People aren’t walking through Gulu pointing and laughing at PWD. They aren’t berating them. This, of course, is a good thing. I can only assume that 20 years of war in Northern Uganda not only caused a heightened number of PWD (estimates show 14-20% of Northern Uganda is a PWD, well above the national average); there’s also a sense that nearly everybody is dealing with something in post-conflict Gulu, whether it’s a physical disability, loss of family members, psychosocial trauma, land-disputes, poverty, etc.

What I’m getting at, however, is the notion of discrimination fueled by ignorance, a catalyst for exclusion, prejudice, and denial of services. It might not be that people WANT to exclude PWD from services, leadership, and employment…it’s just seen as an “easier” solution when you don’t have all the “baggage” that comes with accommodating “special needs.”

Recently, there were several instances of “harmless” discrimination that directly affected GDPU. On July 15, a local hotel in Gulu hosted a workshop for the National Union of Disabled Persons of Uganda (NUDIPU). When it was determined that the venue had been double-booked, NUDIPU’s workshop was moved to the yard under a tent, making the meeting space and bathroom facilities inaccessible for people in wheelchairs. The director of GDPU, Mr. Semakula Fred, attended the workshop…yet he chose to leave early because of the frustrating circumstances, as he uses a wheelchair. Fortunately, the hotel apologized (), which was a huge step; but greater awareness of PWD could have avoided that.

Less than a week later, a GDPU team traveled to Nwoya to meet with the local government. Nwoya is a brand new district, so when we arrived at the government center, construction was actively underway. The office where our meeting took place, however, was just completed…with steps. Only. Two GDPU members – Semakula Fred as well as the Secretary of the Board of Directors – had to be pulled inside the GOVERNMENT center where the cement and paint was still drying. The official apologized sheepishly and ensured a correction…but why now, in 2011, when the government is meant to be at the heart of implementing policies and promoting human rights, is something as simple as a ramp overlooked?

Nwoya Government Center
Nwoya Government Center

Discrimination exists within the disability community, too. When it comes to leadership opportunities for PWD (a label that includes blind, Deaf, deafblind, physical disability, people with epilepsy, and mental health, among others), 77.5% of District Union leaders are physically disabled, a gross misrepresentation of the different categories of disability (2010 NUDIPU Baseline Survey). Additionally, PWD are generally elected specifically to represent PWD concerns and fill a quota; it’s a start, in terms of representation…but is “disability rights” the only thing a person with a disability is capable of promoting? As a history nerd, I recall that my favorite US President led us through a World War from a wheelchair…

It’s understandable that there would be conflict, as painting “disability” with the same brush of is ultimately unfair. A person who is Deaf, for example, does not necessarily require a ramp to enter a public facility. A person in a wheelchair likely would not need a Sign Language interpreter available at a presentation. And while the sub-communities within the disability movement are supportive of one another, there’s still independent agency required from disability to disability, and again from person to person.

Disability rights is challenging, as one of the goals is a mutual understanding between the PWD and the community at large that “disability” does not – or should not – determine worth or potential. “I might have a disability, but I am capable of the same goals as you. I will do it in my own way.” 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.

Sometimes I find that it is “easier” to fight the crueler versions of discrimination. It’s easy to identify hatred spewed out through bigoted violence and derogatory comments. It’s the subtleties of discrimination that have become woven in our societal fabric, an accepted order of worth, perception, and ability, that will continue to divide.

PWD are immune to HIV/AIDS…?????

Rebecca Scherpelz | Posted July 23rd, 2011 | Africa

It is no secret that there is a high prevalence of HIV/AIDS in Sub-Saharan Africa, as “An estimated 22.5 million (http://www.avert.org/hiv-aids-africa.htm) people are living with HIV in the region – around two thirds of the global total.” Fortunately, people with disabilities (PWDs) are immune to HIV/AIDS, so HIV/AIDS awareness, education, and prevention is not applicable to them. The end.


In the 5+ weeks that I’ve spent with GDPU, a continuous concern and theme is the lack of support for PWD, specifically when it comes to HIV/AIDS awareness. In four districts covered by Nudipu’s (http://www.nudipu.org.ug/) 2010 baseline survey, an average of 61.5% of respondents – primarily females – had NEVER received HIV/AIDS services! Though some reports (http://www.avert.org/aids-uganda.htm) celebrate Uganda’s efforts in HIV/AIDS prevention (thumbs up!!), Gulu district remains a risk factor (http://allafrica.com/stories/201005260864.html) as numbers surged from 9.4% (2008) to 16% (2009). Gulu Municipality rates as high as 22.1%! Statistics like these plus the disparity in HIV/AIDS awareness for PWD increases the risk for ALL of Gulu. So why the void?

Logistically speaking, HIV/AIDS training isn’t accessible to PWD: training centers are not physically accessible to people with mobility issues; education materials are not available in Braille for people with visual impairments; educators and health care workers do not speak sign language to communicate with people who are deaf, etc. 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?

While these issues of inaccessibility are disturbing and undoubtedly deserve attention, there is a relatively straightforward solution to train and sensitize HIV/AIDS educators on proper communication techniques to support these populations. GDPU is focusing on education, advocacy, training, and lobbying to help combat these issues, and slowly but surely, there is progress (stay tuned for a report from yesterday’s National Debating Competition on HIV/AIDS, featuring four Gulu primary schools. The theme: “HIV/AIDS doesn’t discriminate; people and services do!”).

Still, the deeper concern lies with the degree of ignorance that is caught up in misconceptions, myths, and abusive treatment towards PWD, especially in regards to sex as a way of transmitting and contracting HIV. For instance:
➢ Misconception: “PWD are not sexually active, so Disabled Person A couldn’t have HIV.”
➢ Misconception: “PWD cannot and SHOULD NOT have children. How will they raise them?” PWD often experience ridicule if they are pregnant, as people scorn them . Without supportive health care workers, PWD may avoid going to health centers for information at all.
➢ Myth: “PWD are immune to HIV/AIDS. In fact, having sex with a PWD can cure me!”
➢ Abuse: In some cases, their social isolation makes them 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 surveyed by NUDIPU, an HIV+ woman infected a total of 50 people when 25 married men engaged in unprotected sex with her, consequently infecting their wives. While some responsibility lies with the woman, the greater concern were the 25 men who abused her vulnerable situation under the auspices that (a) she is immune and (b) she would be lucky to have them.
➢ Abuse: Mobility and/or communication barriers make PWDs a vulnerable target for rape and sexual abuse, as they may have difficulty escaping, alerting, or reporting an attack.

The reality is that PWD 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. They – like everybody – are susceptible to contracting HIV in all of the same manners, sexual or otherwise. And above all else, they – like everybody – have ownership and agency over their bodies, including the right to say “NO!”.

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. Additionally, HIV/AIDS awareness should address the fact that PWD share the same desires, wants, risks, and RIGHTS as any other person. Otherwise, why host a training at all if you are going to (a) exclude a sexually active portion of the community that may – out of ignorance – practice risky sexual behavior; and (b) perpetuate the perspective among the non-disabled community that PWD don’t need the information.

The solution is two-fold. Education and empowerment:
➢ Education for PWD to understand the nature of HIV/AIDS;
➢ Education for the community that HIV/AIDS does not discriminate;
➢ Empowerment for PWD to know, understand, and practice their rights.

Gulu – A Day in the Life

Rebecca Scherpelz | Posted July 11th, 2011 | Africa

6-6:30am: Generally I sleep through the night and wake up under my canopy mosquito net. I wake up by phone alarm and/or an anxious rooster crow. My room is a private guest house behind Mama Margaret’s house, where Mama and a revolving-door of 2 to 4 adult children and 1 to 4 young grandchildren live. For a family who has VERY little, it is almost embarrassing that they have insisted that I stay there for free, but it’s one of countless examples of the generosity of even the most impoverished people of Gulu. I hope to find other ways to support them before I go.

6:30-7am: Get ready for the day, including a daily dose of Doxycycline (anti-malarial meds), a jerrycan/bucket shower, and the constant fight to avoid the red-orange dust. It’s also expected that I brush my teeth prior to eating, too!

7-7:30am: Mama has breakfast ready for me: bread, Blue Band “butter,” a hard-boiled egg, and Ugandan tea (including at least two heaping scoops of cane sugar for the locals).

In the kitchen
In the kitchen

Helping to prepare a “traditional American meal” my first weekend in Mama’s kitchen. Here, I am pictured with Beatrice, Rosetta, and baby Asifer.

7:30-8am: 15-20 minute boda-boda ride into town with my favorite boda and friend, James. Recent rain has kept the dust to a minimum; however, on the hotter days, the dust is heavy by morning. After showing up on my first day with my right shoulder caked with dust (I sit side-saddle on the bikes), I learned to apply sunscreen AFTER reaching work!

*Side note on transport: Most of Gulu is a web of two-ish lane roads—some paved, most dirt. To call them “potholes” is an understatement, as boda drivers have to navigate very specific paths to avoid holes, rocks, water, etc. As far as movement goes, there is a definite hierarchy on the roads: (walkers) step aside for (bicycles) veer left for (boda-bodas) who steer clear of (cars/trucks/NGO vehicles). And everybody gets out of the way for the large coal/material trucks that rumble by, as the inevitable dust cloud that swarms up takes several seconds to settle. Rain will essentially shut down transportation, as there are very few covered taxis in town.

8am-5pm – Work at GDPU! Staff makes their way in between 8-9, as road and weather conditions make all the difference. Tea happens promptly at 10am, often including cassava chips. Power is pretty spotty, often leaving the staff frustrated and idle (cross your fingers for a generator!). At lunch, I prefer to walk into town and pick up a few mangos; however, I’m constantly reminded of the “big African stomach” and encouraged to eat a full, hot meal. On the hottest days, warm malikwong (a bitter green simmered in sim-sim paste. Think spinach + liquefied peanut butter), beans, and potatoes isn’t always appealing, but it definitely fills me up!

As for the work itself, I’m starting to get a hang of my tasks. Goals for the summer include several proposals to help bring in funding for GDPU. Recently, we completed the first one for UNDP to fund the construction of accessible home modifications and a public, accessible toilet. Cross your fingers for $7k! Tech training and building a website is also on my to-do list.

5-6:30pm – I make my way home. Sometimes, this includes a stop in town to run errands or visit with friends (including the Sisters of St. Monica, the convent where I lived in 2008). On occasion, I will meet my host-brother, Brian, at his school, and we will walk the 3 or 4 kilometers home. He knows the back roads through the bush to avoid the dust.

Giving it a try...
Giving it a try...

I joined Beatrice and Rosetta to fetch water. Though they carry the 44-pounds of a 20L jerrycan with ease, I had a hard enough time standing still!

6:30-7pm – Mama Margaret insists that I take tea. Afterwards, I usually sit with Beatrice in the pharmacy out front where she works while the kids run around outside. She wants to learn French, so I’m reliving my days in French 1 to teach her the basics. People in the neighborhood of Forgod recognize me by now, but I can’t help but feel like a zoo attraction to those who walk by and stare at the curious white woman.

7-9pm – If there is power, Mama tries to get dinner ready earlier so we can eat with some light and enjoy their favorite television programs (dubbed soap operas from the Philippines and Mexico). This time of year, it gets dark by 7:30 or 8, and “dark” means something very different here without even the faintest glow from a streetlight or a city. Though there are a few windows in the home, they close up by 6:30pm when the mosquitoes have their nightly reservations for dinner.

9-10pm – I usually head back to my room (a 30 yard walk behind the main house) around this time, guided by a flashlight. Grateful for a laptop on hand, I’ll do a little work, use a portable modem to check email, and maybe watch an episode of West Wing on DVD, a small comfort of home! Otherwise, I make my way to bed and fall asleep to any number of sounds: silence; television from the house next store; packs of wild dogs running through and quarreling; maybe a mouse exploring my shoes; and always, mosquitoes. I can tell how many there are based on their slightly different pitch as they try angrily (but in vain) to get into my carefully tucked net. If I’m lucky, at least their different pitches will create a harmonic lullaby.

And with that: Goodnight, Gulu moon.

Disability, war, and the social context of PWD

Rebecca Scherpelz | Posted June 27th, 2011 | Africa

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One of my roles with GDPU is to help facilitate weekly “Capacity Building.” Each Friday, one person presents on a specific area to help enhance the overall skill set of the staff. Last Friday, we had our first one: Common Disabilities in Uganda, presented by Ojok Patrick. What was supposed to start at 2PM and involve the staff of nearly 10 people ended up starting at 3:00 and was attended by Patrick, Ojok Simon, and me. At first frustrated by the small turnout, it ended up being one of the most enlightening, intimate, and eye-opening conversations I’ve had here.

Disability Overview:
Sparing you the specifics, the training was a basic overview of the cause/effect of the most common physical disabilities in Uganda. Obviously, disabilities caused by accidents, genetics, or complications before, during, or after birth (such as hearing/visual impairments, spinal injuries, spine bifida, or cerebral palsy) are not unique to Uganda. The fascinating and new information, rather, was in regards to disabilities that are (a) caused by disease such as polio, malaria, poor nutrition, and situations that are primarily eradicated in the US; or (b) a direct result of the 20+ years of violent war that ravaged Northern Uganda (and continues in other parts of East Africa today). During this “height of insecurity,”* the population of PWDs rose dramatically due to gunshots, landmines, forced amputations, and other war-based tragedies.

*Side note on the war:
Briefly, the Lord’s Resistance Army (LRA) is a rebel group who is responsible for countless atrocities in Northern Uganda and the surrounding region since 1986. During more than two decades of extreme violence, the LRA forced more than 2 million people into Internally Displaced Persons (IPD) camps, abducted between 30,000-55,000 children to serve as soldiers and sex slaves, and terrorized the region. Though Gulu and most of Northern Uganda has been considered relatively peaceful since 2006, the damage, poverty, and trauma of their ruthless brutality left deep scars on the people and the region (For more, visit http://www.resolveuganda.org/about-the-crisis).

In regards to disabilities, the 20+ years of rebel insurgency had both a direct and indirect impact on the people of Acoliland. The LRA planted an unknown number of landmines, leaving 800+ landmine survivors who live today with lost limbs, shrapnel scars, and nightmares of the incident. Monica – a GDPU worker who trains fellow landmine survivors how to plait hair – lost more than just her leg…she also lost the child she carried on her back.

Beyond the obvious physical and mental trauma associated with these and other tragedies of the insurgency, the societal impact on PWD leaves them among the poorest of the poor. Feeling like it was okay to ask more direct questions to Patrick and Simon (both PWDs themselves), I pried a bit into the current perception of PWD in Gulu and the surrounding region (For info on PWD in IDP camps, visit http://tinyurl.com/5vqs6wy).

Social Context of PWD in Gulu:
Though PWD account for 14-20% of the population of Northern Uganda (more accurate data is not available), they are among the first to be excluded. As Patrick and Simon explained, there is a lack of information regarding the causes of disabilities, leaving parents to blame each other for what is perceived as a misfortune or curse from God. Additionally, a child with a disability may be “counted” differently by parents who say, “We have four children and one who is disabled.” People also feel that PWD do not have the same needs as “able-bodied” individuals and are consequently not a priority. As a result, they might not receive essential medical treatment, assistive devices, go to school, or be empowered with basic skills in independence and responsibility. This feeds into the misconception that PWD are helpless, dependent individuals who are only the recipients of handouts and pity. PWD are favored and receive too many support services. Why does a PWD need such an expensive wheelchair? All expensive things are a luxury, and luxuries are not needed! Why should a PWD be allowed to be pregnant, anyway? Just another burden!

Gloria, Ojok Simon, and Moreen
Gloria, Ojok Simon, and Moreen
During another conversation with Moses, Gloria, and Moreen, other GDPU staff, we talked about this more. “People don’t see PWD as important. They cannot do anything,” Moreen said. “The blind are neglected. On the road, they are finding their way, but people don’t move from their way.” Moses added, “They need to go to town safely. They have needs, too. They can’t sit at home.” He went on to share about the discrimination factor towards PWD. In some instances, people with epilepsy were not allowed to eat at a restaurant because of the false fear that you can “catch” epilepsy through saliva. 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. Still, where do awareness, understanding, and acceptance start for a region plagued with so many challenges?

PWD + Advocacy:
I’m quickly learning that “advocacy” for PWD is a complex demand. As Friday’s discussion continued, Patrick noted, “Without the war, advocacy wouldn’t be such a problem.” An impoverished nation even prior to the LRA, Northern Uganda experienced major setbacks that only perpetuate the cycle of poverty today. When the biggest concern is the immediacy for a short-term solution to feed your family for tomorrow, is there really time or energy left to mobilize support for such a specific population?

The short – though difficult – answer is a resounding YES. For the sake of the individual PWD as well society as a whole, there has to be. And that’s where GDPU and its advocates come in. More on advocacy, opportunity, and leadership for PWD coming soon…

In appreciation of “different”

Rebecca Scherpelz | Posted June 20th, 2011 | Africa

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Apwoyo from Gulu!

After one week in Uganda, I’m settling into my role as a Mzungu/munu visitor in a Ugandan world (“Mzungu” or “munu” are the local words for white person, foreigner, etc…basically anybody the locals can pick out as an outsider!). The welcome here has been wonderfully positive, and the generosity of friends and the kindness of strangers have gone a long way to help me feel at home. For the first few days, I experienced life with a fellow Butler graduate, Genni, who has relocated to Uganda to start a family and a new life! Special thanks to Genni, Julius, and baby Dominic for the amazing hospitality as I got my bearings in Ntinde (near Kampala), adjusting to the 7-hour time change, constant heat, and local food. Weebare!

Traveling to Gulu, it was a 6-hour bus-ride north. Heading that direction, the road becomes increasingly rough, the weather increasingly warm, and the lifestyle increasingly impoverished. Though poverty and struggle exists across all of Uganda (and much of Sub-Saharan Africa, for that matter), the post-war North is in the midst of a long and slow climb up following more than 2½ decades of war. Still, the overall attitude in Gulu – the largest city in the north – is one of incredible faith, eagerness, and yearning for a better tomorrow.

For me – a “munu” in Gulu – I’m constantly aware of how I stick out, for better or for worse. To be fair, the presence of a munu even a decade ago would have been more rare than it is today, as an influx of NGOs descended on the city, bringing with it workers, researchers, missionaries, peace builders, and young idealists (like me). Today, only in the more rural areas would the first “sighting” of a munu be an event (even a fearful one!) for a young child. Still, as I walk through town, attempt to buy mangos, stand by the road to meet friends, greet people in the local language, ride by on a boda-boda (local motorcycle, aka one-person taxi), and try to cautiously integrate my personal lifestyle with respect to Ugandan culture, I am ever-aware of sticking out. An attempted “Apwoyo! Atyi maber?” and a friendly conversation may quickly change the attitude, but without that personal contact, I worry that I am judged as an outsider. Someone different. And rightly so, as I am both! However, my own paranoia reads that as a judgment that I am incapable and inept, an invader sent to impose my Western ways or sit and be served. It may take me longer to fetch a 30-kilo gerry can of water and haul it the ¾ kilometer home…but I can do it. I might splash a bigger mess and still somehow end up with dusty feet when I bathe with a bucket and cold water…but I’m still clean. I might prefer different foods and eat a different portion as my stomach adapts to new flavors…but I’m well fed!

So why delve into my insecurities as a white American amongst black Ugandans? I realize it is a bit of a stretch, and pardon any offense in my comparison. But as I work to serve the population of Persons With Disabilities (PWD) in Gulu, I’m drawn to the idea that they, too, might have an idea of what it feels like to be an outsider…to be unjustly viewed as inept…to feel a step behind while striving to maintain the same dignities and opportunities as the rest, despite what the non-disabled population is offering. I’m only two days into my work with the Gulu Disabled Persons Union, but I am inspired by the inclusive nature and broad advocacy of the nine staff members, five of whom have a disability (including visual impairments, deafness, and a spectrum of mobility issues). Additionally, all 12 Board Members live with a disability. In spite of – or, rather, because of – their disabilities, productivity and devotion to the mission is strong. What many in the Gulu community may see as a fault is simply their way of life…neither better nor worse, just different.

So here am I, too – neither better nor worse, just different. We may all find ourselves where we feel like fish out of water…still, it can’t mean that the Deaf man doesn’t want to “hear” what you are saying; that a woman on crutches doesn’t want to enter the same building; that a munu isn’t interested in embracing a new way of life. Here, the GDPU is working tirelessly to help change this perception within the Gulu community; to increase the standard of living, both socially and economically for PWD; and to empower PWD to lead dignified lives. Time to get to work. : )

GDPU (Gulu, Uganda)
GDPU (Gulu, Uganda)

Fellow: Rebecca Scherpelz



accessibility Advocacy Project AP apfellows audit blind musician disabilityrights Disability Rights GDPU Gulu Gulu Disabled Persons Union Peace Fellow persons with disability PWD Rebecca Scherpelz The Advocacy Project Uganda visual impairment visually impaired




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