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Rebecca Haque
Handicap International
Yei, South Sudan

In the first weeks of July, one of my responsibilities was to help organize an awareness raising session on disability, with local authorities and disabled people’s organizations (DPOs) in Yei. Ironically, our venue was not accessible to PWDs, but was the “most accessible” in the spectrum of accessibility in venues around. One of the individuals in the DPO groups, paralyzed from the waist down, had to crawl from his tricycle to his seat in the conference hall. Later as we were sitting outside the lunch hall he couldn’t access, he tells me that this was a pretty good way to drive home the point to the authorities in attendance that action is needed, pretty desperately, to allow people with disabilities dignified access to basic service providers.

Our mobile team facilitated the presentations and I felt overwhelming envy with the ease with which they navigated and disseminated the information in English, Kakua (apart of the Bari language group) and South Sudanese Arabic. During quiet moments in the office, I find myself contemplating the complexity of their jobs. They are the meeting point between HI’s internationally standardized and locally categorized definitions of disability. Their day-to-day operations are completed in three languages. They have the phenomenally difficult task of reconciling the international rights conventions such as the CRPD and the Cluster Munitions Treaty with the notions of disability that they’ve grown up around and continue to live in. It is fascinating for me to watch their compromise, their adaptation to the human rights rhetoric that I take for granted. I can only hope that they will be a larger reflection of what our project will do to the consciousness of the communities we are operating in.

A theme of the discussions that emerged following the presentations were the differences between the “old Sudan” and the new. Notions regarding statehood, and the protection of citizen’s rights by the government are also present in the general assessments that we do in the community. Unprompted, people with disabilities are invoking their government’s responsibility to support and recognize them. This makes me swell with hope every time I come across it. Even with minimal socialization to the human rights discourse, I realize it was embarrassingly naïve of me to think that the same notions about rights do not exist in less formal articulations.

(I realize I am absolutely failing with photographs, but it’s a tricky
issue here, with the suspicion surrounding media, as well as the vulnerability of the population I’m working with. But here’s a picture of the compound I live on!)

Rebecca Haque
Handicap International
Yei, South Sudan

Time does a funny thing in Yei. If I think of my time here as a whole, I feel overwhelmed with the pace with which it has passed me by. But individual moments stay with me, and if I isolate trains of thought to these moments, I’m surprised that my time here has been so short. As trite as it sounds, I think this is because I have learned something from every moment, and enjoyed most. As I keep telling those close to me, it feels strange to use the word “enjoy” considering the dire reality here. It is a strange reality, to have to be conscious of landmines while visiting people’s homes. It is a strange reality, to wake up to the sounds of low flying aircraft tracking LRA movements. Strange, to notice the impassivity with which a colleague announces the death of her sister in childbirth. More than anything, over the past 7 weeks I have realized the privilege of strangeness.

I have been told, on multiple occasions, that Yei is the best place to live in South Sudan. It has been described to me as “little London.” It is a historic nickname, used to highlight the cleanliness of Yei in contrast to the capital Juba, Yei being “clean like London.” The more modern connotations of the name, barring the consistent rain and grey skies during monsoon, include the rate at which Yei is growing as a trading center. The proximity to the border with Uganda is a contributor to its business activity.

To me, Yei is red earth, packed down on ridden roads when it rains, sinkable-soft in the ditches, and then dry red dust by afternoon. Not a hint of tarmac. Power from 7 am till midnight, which is more than the capital city can boast, and borehole water has proven to be pretty reliable too. The market is stocked, first with mangoes, and now passion fruit, and always, always avocado. My departure is definitely going to show in the books of the Ethiopian restaurant in town.

The project I am working in is a Victim Assistance project in its first stages. It is a style of project that HI has been implementing since its inception, and aims to aid the victims of landmines/ERW as well as people with disability. As there is no database of such victims, one of the first stages of this project is identification. Most days, I join a mobile team of three national staff who walk around communities and identify a person with a disability through word of mouth. This practice, of course, is a perfect one to observe given my research project: how people identify disability is a linguistic manifestation of their perception of what disability is.

Upon initial identification, the mobile team carries out a lengthy “general assessment” survey. These questions, relating to accessibility to health, livelihood, basic services assistive devices etc. then inform a “quality of life” score. The score also takes into account the psychosocial situation of the person with a disability: do they feel involved in the community? Are they happy with their role in the household? This is the main indicator for the project, meaning that through referrals to mental health services, livelihood service providers, as well as partnering with the county health department to set up rehabilitation spaces and train health staff in physical rehabilitation, HI is aiming to improve the quality of life of people with disabilities.

Needless to say, quality of life is a tricky measure, particularly in a place where answers to such questions are often just confounded by disability. Most people are in a high state of vulnerability, and on the best of days it is tricky to make the judgement on who the project can best help. On the worst, of course, it goes to a place of immorality and ethical unsoundness, that is ultimately helpful to no one.

My first few days with the project are documented in 13,000 words worth of notes, so I recognize a massive failure in just sitting down to complete a blog post now. I will be better! What is heartening to see, in this collapse of time, are the questions that I asked in the copious notes from those. Not all, but most of these questions, I find that I can answer now. Suddenly, inexplicably, I have just over two weeks left on my contract. Time does a funny thing, here.

Rebecca Haque
Handicap International
Yei, South Sudan

As my fellow fellows launch into their sophisticated human rights analyses, I can’t help but feel a little lacking in coherent articulation myself. Over the past semester’s seminar my views on human rights clicked into place with Sally Merry’s observations that Human Rights is akin to language: both are vernacularized according to the contexts in which they operate. Presently, I am struggling with providing that context, for both my (numerous, I’m sure) readers, as well as for my own mind.

I obsessively scroll through news articles about South Sudan to find those two sentences that give context to the situation here. Lately, in the reports about the town of Pibor being ransacked by rebel troops and the army alike, it’s a “about two million people died in the war that was fuelled by divisions over religion, oil, ethnicity and ideology and ended in 2005 with a deal that paved the way for Juba’s secession.” The “deal” refers to the Comprehensive Peace Agreement (CPA), a set of agreements signed by the government of Sudan and the Sudan People’s Liberation Movement (SPLM). It was the official end to the Second Sudanese Civil War, and made the South semi-autonomous in an attempt to develop democratic governance and “pave the way” for the referendum that resulted in the creation of the world’s newest nation in 2011.

So, due to the nature of conflict the country has faced, the category of “disability,” covers a broad spectrum—from victims of mines and unexploded ordnance, to those with cognitive disabilities as a consequence of malnutrition. What is significant is that an official governmental definition of People With Disabilities (PWDs) does not exist in South Sudan. Disability is most commonly associated with war injuries, with war veterans being the favored target group of Disabled People’s Organizations as their recognition is aided by their ease of recognition through formal registration. This reveals an interesting dynamic- while there is little recognition of the spectrum of disability, those injured from the war are greatly respected and valorized. Government programs that provide support to PWDs almost exclusively tend towards the local production and dissemination of prosthetic limbs for persons with physical disabilities.

South Sudan is not yet a signatory of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and there is no mention of PWDs in the present draft of the South Sudanese constitution. These facts are deeply significant for a number of reasons. Firstly, it is difficult to engage Human Rights discourse surrounding a particular population when there is no official recognition of a population in need of special attention. I have realized that organizations like HI are establishing the disabled as a vulnerable population—they are explicitly identifying PWDs as their own particular social category.

Secondly, because they are not identified within any official framework it is very difficult to hold violations against PWDs to any sort of legal framework or jurisprudence. There are very few larger scale stakes for the Government of South Sudan in leaving the broader needs of the disabled unfulfilled. Bringing this into the realm of development, until programs towards the disabled are mainstreamed into development programs, there will be little accountability.

Rebecca Haque
Handicap International
Yei, South Sudan

I’m not quite sure how it came to be the 30th of April. As I keep loudly exclaiming at the start of every conversation, “One month!” This time next month, I’ll be in Juba, the capital of South Sudan. This time next month (plus two days) I’ll be starting my internship with Handicap International. This time next month the people and activities that exist so essentially in my present everyday will suddenly be very far away.

It wouldn’t be an exaggeration to say that every second thought since leaving Juba last summer has been on my return. I have thus become an expert on the art of summarizing my project:

I’m going to Yei, South Sudan to intern for the NGO Handicap International. I will be doing research on the perceptions of disability, more specifically on how disability is socially constructed. The research will be used to create evidence based projects in health and education sectors that will allow people with disabilities to live with dignity and fully function in South Sudanese society.

People usually do this wide-eyed-thing when I say “South Sudan,” make a little “o” with their mouths by the time I get to “socially constructed,” and a scrunched eyebrow appears at “evidence based.” I don’t blame them—the scope of this project is huge, and in this brief explanation sounds vague and practically impossible. I know I’d be skeptical if I heard something so complex being squeezed into three sentences.

So, over a series of pre-departure posts, I’ll attempt to unpack those sentences, try to do the evolution of the project justice, and have a record of how I conceptualize it before I meet the realities on the ground. Though invoking a human rights discourse, my methodology is devised through anthropological techniques, framed through questions that come from work in Disability Studies and Medical Anthropology. I’ve been lucky to work with Professor Rayna Rapp in the Anthropology Department on my Independent Study about disability in Africa.

I was fortunate to intern with the British Council in South Sudan for the duration of the 2012 summer vacation. It was an experience that was satisfying in the amount of experience that I garnered (which you can read about in more detail here) and the relationships I developed with people I worked with there. And yet it was also deeply confounding to be present when a nation is in its infancy. It is somewhere in between experiencing those two feelings that I decided I want to learn more. The alignment of fates seemed almost comical: Handicap International was looking for a research intern, the Gallatin Global Fellowship in Human Rights was asking for applications, and here I was, a hopeful scholar.

South Sudan has gripped me in an academic and intellectual level that has spilled over into a deeply personal experience. And though it is tempting at this point, when departure is so very close, to get all existential on what it means to be leaving New York, I keep myself grounded in practicalities: getting final approval on methodology from the NGO, sending off my passport for a visa before I leave, and trying to find the least expensive storage space in the downtown area.