I Am Not a Problem to Be Solved

Boaz Muhumuza is the disability rights program officer for Eastern Africa at the Open Society Foundations. Muhumuza grew up in Uganda and lost his sight to retina blastoma at a young age. He graduated with a law degree from Makerere University in Kampala and holds a postgraduate diploma in legal practice.

Growing up in Uganda, I had to travel over 600 kilometers from my home in order to find a school for the blind. But I was lucky. Many children in East Africa who are blind, deaf, or have an intellectual disability never receive a proper education. People with psychosocial disabilities are often put into treatment centers that are as good as prisons.

Beyond institutional barriers, people with disabilities also struggle against attitudes. People often assume that we cannot make our own decisions, like where and with whom we want to live. We are denied the freedom to make wrong or right choices. People don’t understand that an impairment—like being unable to see—does not affect my other faculties. The fact that I don’t see doesn’t mean that I don’t think. The fact that a person has a mental health problem doesn’t mean that he or she doesn’t have desires, that they are unable to like certain things and hate others.

Fortunately, there is real hope for a change in how people view disability rights in Africa thanks to the United Nations Convention on Rights of Persons with Disabilities. The convention is an international legal instrument that enshrines the rights of persons with disabilities. It was enacted in 2006, and almost every country in East Africa has signed and ratified the convention. By virtue of ratification, these countries are now legally bound to ensure that the rights contained in the convention are put into practice.

But even though so many countries in the region ratified the convention, its details are not well understood—even for those of us who are working on them. We still struggle to figure out what the rights mean in practice. What does it mean for a person with disabilities to have choice? What does it mean for you to say that a person with a mental health challenge has a right to vote?

Understanding the convention in the African context is even more complex. What does it mean if you’re fighting for inclusion of people with disabilities in the community when there are no institutions? In Europe or America the answer is easier. There people with disabilities are put into institutions, and inclusion has a clear meaning. But in Africa—where there are fewer institutions—discrimination happens most often in the community in which the person lives. We need experts who can flesh out the policy in a local context.

This will mean shifting the framework for how people view disabilities. Previously disability was seen in one of two ways, either as a medical problem or a condition that evoked sympathy or pity. People have often asked me, “Have you tried to go to a hospital for your eyes to be treated?” They look at my lack of sight as the problem that should be solved. Or they see me only as someone to be pitied. This approach leads to placing people in institutions. Because the blind need services, people think the solution is to put all blind people into one building.

The human rights framework is meant to shift the problem from the person to the environment. The problem is not that I cannot see, but that my environment is limiting.

Let’s take an example. If you have an elevator in a building and I’m using a wheelchair, I will come with my wheelchair, enter this elevator and arrive at the seventh floor. If you have no elevator you will have disabled me. I’ll come with my wheelchair, but I will be unable to reach my intended floor. But if I had a wheelchair and you have the elevator it means that whether someone is walking with his or her legs and I’m using a wheelchair, who cares? We are all able to get to the same place. If the environment is improved then the person who is blind or paralyzed or deaf can perform as well as the others. That’s where the human rights approach comes in.

People often wonder how these environmental changes can be made when resources are scarce, but much of what we are requesting is not big. Reasonable accommodation allows for changes that are neither too expensive nor too difficult for someone to implement. After all, why should someone be able to construct an 8-floor building and say that they don’t have resources for an elevator?

The question of resource scarcity is a challenge. But governments must realize that people with disabilities constitute 10 percent of the world, and many of the changes we need are quite small and don’t cost too much money. Even changing attitudes—for example having doctors address me and not the person I came with—would go a long way.

We need awareness and education, so that people can understand disability. We need laws and policies to create an environment that is positive to persons with disabilities, and we need to respect the choices of persons with disabilities. Their choices, their capacity, and their abilities, we need to respect them.

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Totally agree, the fact is solidarity between disabilities (so-called) populations is not a problem to be solved it is a solution to other problems.

Second comment, it is those who are in solidarity with those incapacitated whom have the active will to commit to professionalized compassionate care that it falls to in order to be able to bolster the capacities of those they are in solidarity with and this can be done by making full sensory use of whatever means provides for increased understanding with those who sympathize acting to help facilitate solutions from those deemed problems through putting *them* together and helping them experience intermediary incapacities in ways that allows independent judgments of those at the outermost edge of societal neglect to fruitfully collaborate to solve the problems of others. It is the ability of the incapacitated to experience the ability to make full use of themselves that should be the focus in creating problems for their abilities to develop solutions: more specifically, I advocate the fiscal inclusion in newly innovative crowdsourcing workflow processes as part of ADA and standards of help to the incapacitated. the help should focus on lowering any barriers to inclusion by respect of the participation of other populations so that those incapacitated do not "play catch up" to the changes in society. I advocate that they lead solutions processes, in fact, but that is a bit strong for common use.

It is ironic that Mr. Muhumuza explains that people become disabled when others deny them access when this video does just that - disables Deaf people. Please caption this video and all of your videos so everyone has access.

Amy, this is an important point that we overlooked. We will input captions for this, and all other Open Society multimedia pieces in the coming weeks.

Hi Amy, just wanted to let you know that subtitles are now up on Boaz's videos. We'll be posting subtitles on all Open Society videos in the coming weeks. Best, Rachel

Thank you for now putting captions on this video, I enjoyed watching it and appreciated being able to access it as a deaf person. I will look forward to seeing captions on the other videos as well.

What a pleasant surprise to return to your site to find captioning! Our students at Gallaudet University studying International Development focusing on persons with disabilities will now be able to access your site to learn of the important work the Open Society is doing. Thank you, Rachel.

Thanks for your comment Amy. We are slowly making our way through the Open Society YouTube channel. We've captioned 20 videos thus far, and are working on captioning all of them. http://www.youtube.com/opensocietyinstitute

Society let's us down all the time!!! Boaz you are a true inspiration I always knew this even studying with you in school.

Boaz, I would like to thank you so much for believing in yourself. I saw you several times at Makerere University and you were more determined and focused on your studies than other students that don't have disability issues.No wonder, you have reached this far. Other people with disabilities should perhaps emulate your example; with support of course from family, friends and the nation at large.

Having a disability does not mean that one is any different from anyone else without a disability. In actual sense we all have a neurological disability that we are not aware of.
Also why do bosses need a secretary? If you can answer this question then you will be in a better position to define a disability. Thanks for reading this.

Mr.Boaz, thank you very much for this inspiring article. You are really an enthusiastic and courageous gentleman . Its very true, that we PWDs are not problem to be solved, but rather solution to even unemployment problem Uganda like creating job for sign language interpreters in parliament and institutions of learning . Your video is full of enthusiasm, however it has no caption and therefore as deaf persons we cant hear or even understand whatever you are speaking except what you have written for us in your article. I congratulate you for the best work you are doing for us at open society foundation and I look forward to reading and watching more of your video

Hi Thomas, thanks for your comment. Subtitles should be available by clicking the cc button once the video starts playing. All best, Rachel Hart

Kudos Boaz! You are an inspiration to many others. Disabled people appear to be in the same position in the development debate as women were 20 years ago. Not employed by the development industry, invisible, and so anonymous. So, what stops the aid industry professionals from ensuring that their development work involves and benefits disabled people equally? Is it possible that disablism, the notion that disabled people are inferior, rears its ugly head so high that most still perceive disabled people as an inferior "special interest group" not worth taking an interest in?

My appeal to the mainstream is this: employ representative numbers of disabled people. Make all your offices accessible. Ensure your development work involves and benefits disabled people equally. Open Society is already doing this; otherwise Boaz wouldn’t have been here. I am challenging the mainstream to emulate Open Society Foundation.

Thank you Boaz for reminding us you do not need pity but improved enviroment. I hope investors and those in authority will see the sense. Kudos, am previllaged to work with you, you're an inspiration!

Boaz, I concur with you. Pwds we are not a problem to solve. Like any other person we just need help to enable us to get somewhere but not helpless as very many people would think. The truth is that people need to appreciate that disability is just a challenge that you need to just overcome.

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