Living with Disabilities in Uganda

Med Ssengooba at the White House.

I met disabled Ugandan lawyer Med Ssengooba at an event titled "Challenges of Living with a Disability in Africa: A Legal Approach," organized by The African Justice Initiative, a group highlighting and creating discourse on African issues from a legal perspective. He spoke about the challenges of being a Person(s) with Disabilities (PWD). Below are excerpts. 

Who is Med Ssengooba?

I was born in 1981 in Uganda when polio was prevalent. The situation was further exacerbated by political unrests. In 1984, at three years old, I contracted polio, suffered the resultant paralysis and became a wheelchair-dependent PWD.

After years of treatment, I began my education late at seven years old, because there were few nursery schools that would accept young PWD. I later attended a special needs school for young PWD for my primary education. Studying in a specialized school was better because the physical environment was more accessible, and I didn't receive questions from fellow students, as we were all PWD. Receiving a secondary and university education was very challenging, as I had to cope with a very disability-unfriendly environment. I experienced disability discrimination, including almost losing a year of high school because schools weren't interested in admitting a PWD with better grades than many of their students.

Access to school facilities has always been difficult and sometimes impossible for me because most schools don't have handicap-accessible amenities, including toilets. I'd have to restrain myself for the day. Classrooms, libraries and dormitories weren't any better. I also faced negative behavioral attitudes through my undergraduate education, which carry financial and psychological costs. I cannot measure the impact such situations like writing exams without being given extra time, and being lifted on steps by kind but untrained people and the associated injury risks, have had on my academic grades. The inconveniences caused by very limited accommodation of PWD questions the saying, "Disability is not inability," because they directly impact one's grades, which are subsequently used to measure one's intellectual abilities.

Being a PWD and disability rights advocate has exposed me to numerous unchallenged human rights violations PWD endure. Our society excludes and construes PWD in a demeaning way. Changes are occurring to positively impact African PWD—they have allowed few PWD like me to acquire an education and assume leadership positions—but improving the lives of PWD at the family, society, state and national levels is still needed.

My parents sponsored and facilitated my education up until high school. I then received a government scholarship for my undergraduate degree and a Ford Foundation Fellowship for my masters of law degree. This shows the relevance of coordinated efforts among different actors, which, if adopted by all sectors, including the employment and health sectors, will lead to more independence and positive societal impact for PWD.

The realities of PWD in Africa

As an attorney in Uganda, I am an exception. In Africa, disabilities are often associated with evil spirits, curses and punishment for ancestral wrong doings. There's little understanding that PWD are human beings, equal to everyone else and entitled to the same rights, privileges and opportunities. PWD are often totally dependent on others who often mistreat them, with no means to effectively manage their disability and related needs, such as with mobility devices, medication and regular medical treatment. Many PWD have no capacity to decide their fate and are abandoned in the rural areas and stay poor, helpless, neglected, and betrayed by family and community members.

Generally, PWD in Africa lack access to public and government facilities, including health centers, schools, and legal centers like police stations and courts. Many are left homeless, live on the streets where they are more vulnerable, and endure unwanted conflicts and assaults. Female PWD also endure sexual exploitation. Due to rape and defilement, many have contacted HIV/AIDS, and unwanted pregnancies have resulted. The additional burden of raising fatherless children alone increases their difficulties. Many are unemployed because they are uneducated and vocationally unskilled. Many with employment opportunities are destined for menial jobs. This partly explains the large numbers of disabled beggars on the streets of many African countries' capital cities.

Current African disability trends

Fortunately, international civil society organizations have prioritized PWD, targeting the issue either directly or indirectly in African programs they support. The current trend is associations and partnership formation, such as disabled-persons organizations, community-based organizations, and international partnerships with donors, the community and advocacy-based agencies. The nonprofit organization at which I'm an administrator, Legal Action for Persons with Disabilities (LAPD), was receiving financial and technical support in its legal aid service provision to PWD in Uganda from different actors from the United States, United Kingdom and Denmark.

Legislative and disability policy measures are underway. Uganda, South Africa, Ghana and Tanzania have either enacted laws on disability or restructured their domestic laws to reflect disability needs. Numerous policies and strategies have been generated to guide disability work in several African countries. Many have included and captured disability performance data for Millennium Development Goals, and to report to groups including human rights committees.

International conventions like the U.N. Convention on the Rights of PWD (UNCRPD) have guided laws on disabilities in countries like Uganda and Tanzania. Much still needs to be done to implement and fine-tune these laws to reflect the authors' real intentions, but there's now a ray of hope. The CRPD has led to the creation of numerous disability rights agencies sponsoring African disability work, including Disability Rights Fund, Open Society Institute's Disability Rights Initiative, and International Disability Alliance's CRPD Forum, all of which are targeting effective and full implementation of rights enhancement for PWD worldwide, based on the UNCRPD, with some offering technical support. There are now enhanced conceptualizations of disabilities from a human-rights perspective, and national human-rights commissions have established units on disabilities in Uganda, Nigeria, South Africa and Ghana.

Effects of wars on PWD in Uganda

There have been several political unrests, including the recent Lord Resistance Army-led conflict in northern Uganda, which lasted from 1987 to 2007 and created almost a million internally displaced persons who were subsequently constantly raided by rebels.

One of the greatest effects of this war was the increase in the number of PWD. Many victims suffered physical, sensory, psychological and emotional trauma, including loss of limbs, sight and hearing, due to attacks with weapons and land mines. Physical trauma is often addressed first; however, mental trauma, if untreated, may lead to mental illnesses and post-traumatic stress syndrome disorders. Unfortunately, people with mental illness aren't often deemed victims of war because their scars aren't visible.

In camps, lack of mobility devices like wheelchairs, white canes and hearing devices restricts mobility and access to service providers, so it is very complicated or impossible for some. Some can't walk to where food is being shared to get their portions. A female PWD I encountered said she can't go to receive the portions she should for her and her 10 kids. Even when she does, it's not enough.

Many female PWD were sexually assaulted. While coping with their disabilities, they were impregnated and raised children by unidentified rapist fathers alone in a war zone with no means to. Many acquired HIV/AIDS, with access to medicine being difficult for them. They experienced triple marginalization as women PWD with HIV/AIDS, in a war-torn developing country.

Organizations like CARE, AVIS, World Vision and CARITAS are providing support such as food and basic necessities. Resettlement programs haven't clearly addressed the needs of PWD, especially from a gendered perspective. Interacting with victims in Northern Uganda made me realize that the resettlement efforts may not be productive because they can't go home. No thought or effort is being put into what they will go home to. For example, water, wheelchairs, schools and healthcare facilities aren't being provided. Also, confiscated lands, destabilized families, deserted spouses and a significant aging population that's hastening their marginalization are also issues faced.

On the horizon

I attended President Obama's town-hall meeting with African youth at the White House. My attendance was to highlight the plight of PWD. Also, LAPD, one of the first nonprofit organizations providing legal assistance for African PWD, is dealing with employment, accident claims, child neglect, land and property confiscation, accessibility, discrimination, and education. Mediation and out-of-court settlements, especially in civil cases, is our preference. We also conduct public awareness campaigns, electoral sensitization, and we are helping to revise Uganda's laws to match the U.N. Convention on the Rights of PWD, which Uganda signed and ratified.

African countries must enact, repeal, amend, revise and implement disability laws. They should also design workable regulations and guiding policies, utilizing the CRPD model. Many countries have no definition or understanding of disabilities. Disability concerns are often sidelined during policy making. Consequently, the resultant service delivered is inadequate or inappropriate. Specialized policies must be generated and introduced in international environments for the policies to be effected. In Uganda there is a National Policy on Disability and the PWD Act, but implementation is challenging. Affirmative action is also required by law, and statutes should be enacted for special groups and PWD. The state should lead in employing PWD, and organizations that employ significant numbers of employees should be required to hire members of special groups.

PWD are often isolated, and conditioned to accept and not question anything, even things done to them. Therefore they must be empowered and encouraged to speak up for themselves and speak out against negative occurrences. For example, a female PWD told me, "There's a man who comes and rapes me daily, but who can I tell?" This happens because often PWD are not considered human, so crimes against them are ignored by law enforcement. Crimes against PWD should be challenged, and their inclusion in mainstream society should be made essential. Also, education and vocational skills training should be available to enable PWD become independent, self-sustaining and productive members of society.

Solution providers must be aware that Africa's environment is different from the West's and solutions must be tailored. I had a wheelchair made in the United States that didn't last because it's not designed for Africa's rugged terrain, and if it breaks, there aren't replacement parts readily available to repair it.

If people want to help, they can promote, protect and respect the rights of PWD, and teach future generations to ensure continuity. Everyone can make contributions towards the fulfillment of the rights of PWD.

View the Worldpress Desk’s profile for Susan Majekodunmi.