During a recent trip to Uganda, I had the chance to link up with an old friend of mine. We know each other since the early 2000s when we were both living and working in Gulu in northern Uganda. It was back in the days when a brutal civil war was raging in the Acholi subregion of this East African country. I was working with the Justice and Peace Commission of the Catholic Archdiocese of Gulu while Davide was committing his time and expertise to the health sector. As an experienced physiotherapist and with an immense passion for providing desperately needed services to people with disabilities, he was instrumental in setting up the orthopedic workshop of the regional hospital and working on landmine awareness programs in Uganda and neighboring Sudan. Since 2015 Davide is the CEO of Comprehensive Rehabilitation Services in Uganda (CoRSU), a private non-profit, non-government organization. Together with an amazing team of highly committed people, they have created an impressive centre that aims at expanding and improving the medical rehabilitation services for children and people with disability in Uganda. Since its foundation in 2006 CoRSU has changed the lives of thousands of people in East Afrika. And the Easter Special of The Active Amputee is dedicated to this amazing organisation and the impressive services they are providing, day in day out.  Today’s post will provide you with some background information of what it means to be disabled in Uganda. Tomorrow you will meet some of the patients and later on in the week you will hear from one of the volunteers who is committed to making in difference in the lives of the people for whom CoRSU is often the only hope.

An anonymous quote that goes, “disability does not discriminate; systems, infrastructure, services and people do” would epitomize the challenges people living with disability face globally. Uganda has little variance with most of the world’s historical and current demographics on persons with disability, particularly in sub-Saharan Africa. The well documented experiential and systemic challenges of living with disability, the social stigma and segregation of people with disability is not any different in Uganda from most countries.

A classic example is the one of Scovia, a 17-year-old patient with us, the Comprehensive Rehabilitation Services in Uganda (CoRSU). She was born with clubfoot. Scovia’s uneven and angled walk was not her biggest let down, but rather, the fact that when the other children teasingly mimicked her walking. The was no proper social support from school for her. Nor any deliberate measures by those in authority (like her teachers) to educate her ignorant peers. Apart from her loving family, she had no other support system within her community. Scovia had to navigate an unforgiving world at such a tender age, with all the vulnerability her disability exposed her to, in a highly ignorant and inconsiderate community. Although her school was the only alternative community, nobody noticed her need for consideration, emotional and intellectual support through empathy, affirmation and acceptance. Her family was her only fall back but it was not enough given the fact that she spent most of her productive time at school and not at home.

Scovia was fortunate, though. Her family’s income placed them in the top 10 privileged percent in Uganda, a nation whose per capita income is just over USD 600. She had the privileged of receiving assistive devices, accessing therapy with support from her family. 

The situation was completely different for Rehema, a 7-year-old patient with CoRSU who is from a poor family. When her father realized that she had a clubfoot, he disowned her. At that time Rehema was 3 years late for school compared to her age mates. She was also physically and emotionally underdeveloped and faced with the same discrimination; i.e. an unprotective and inconsiderate school environment for children with disabilities, and with little emotional and financial support from her family.

These two stories are a reflection of so many of the patients that have walked through the doors of CoRSU. One could easily change the names, ages, sexes or any other demographic of the amazing children here and the sad story lines would still be the same. Uganda, according to the Uganda Demographic Health Survey of 2016, with an estimate population of 42 Million, has 12.5% of its population living with a disability on one domain and 5.6% on at least two domains. The most commonly observed disabilities were loss and limited use of limbs (35.3%), spine injuries (22.3%), hearing difficulties (15.1%), seeing difficulties (6.7%) and mental health issues. 

CoRSU Hospital, a specialized rehabilitation hospital registered as an non-governmental organization offers medical services to persons with a disability, focuses on plastic and reconstructive surgeries, orthopedic surgeries and rehabilitative procedures as a direct contribution to alleviating the challenges faced by people with physical disabilities. Having produced assistive devises through some of the latest technologies and having carried out over 32,000 surgeries and over 64,000 Rehabilitation sessions over the last 10 years, there is a lot that still needs to be done. We believe that everyone counts and we will not shy away from our mandate to prevent disability and to mitigate the debilitating effects of disabling physical conditions.

Abubakar, born as one of a twin, developed a benign tumor at the age of four years. Earlier on, his parents thought it was a form of witchcraft. They spent a lot of valuable time and resources going from one local herbalist to another - but to no avail. The tumor got worse. Abubakar eventually was locked away for a long time; whether due to shame or other social stigma, it is not clear. As a result , the little boy was left behind in social development because he could not talk or eat properly. He lost out on his chance for a proper education when he stopped going to school and his hope of ever enjoying childhood waned because he was not allowed to integrate normally as any other child. Abubakar was lucky, though. A social worker in his community had heard about CoRSU’s ability to offer plastic reconstructive surgery for such conditions and referred his mother to us. He has had a successful reconstructive surgery that has enabled him to socially integrate within his the community. 

Not many are as fortunate as Abubakar. Often children with a disability are hidden from the public and never accorded the opportunity for surgery and rehabilitation. The ignorance about corrective procedures and the lack of the societal will to ensure the necessary services and infrastructure often do not allow people with disabilities to socially integrate. This has made many people with disabilities unable to access services that would allow them to live in dignity.

The cost of surgical services and rehabilitative devices for various disability conditions are often high. That is a fact. But what is even more appalling in most Ugandan health facilities is that even when the services are available and affordable, people with disabilities have often been considered less and undeserving of these services by families and the society. The law of the land also does not offer enough support to the people who most need it: People with disabilities.

There is hope, and that is the story that CoRSU lives to write and tell. Education on disability, progressive legislation, the growth in facilities and personnel that specialize in disability management, the global investment in inclusive development and stories of hope and dignity from other people leading fulfilled lives, despite their disability, have all contributed to Uganda’s quest to allow the self-actualization of persons with disability.