Disability Rights in Uganda - Research Blog

I was asked to fill in a survey by a PhD student in an English University. I would like to share my answers with wider audience. Your views on universal education in Uganda What comes to your mind when you hear ‘education’? One of the turning points in life. What do you consider to be the purpose of universal/ free education in Uganda? equal opportunity for all including marginalised groups of children in principle. To what extent is universal education available, acceptable and accessible in Uganda? even if “universal”, many of my interviewees told me that they have to pay for stationeries, uniforms etc. When families cannot afford to purchase them to their all children, then priorities are given to certain children only. Often children with disabilities are left out as a result. Also schools are not always accessible, both physically and attitudinally. Many teachers are not trained and equipped with skills of, for instance, Sign Language. Moreover, the society as a whole is often disabling, in which education and schools are located. Thus, even when education is universal and schools are accessible, many children with disabilities cannot reach education, due to lack of prerequisites for education such as assistive devices, positive attitude of families and community members, self-esteem etc. In this regard, education as a part of social structure cannot be available, acceptable and accessible without changing the whole environment as enabling rather than disabling as of now. What do you consider to be the successes of universal education in Uganda? In policy, the priority is given to marginalised children including children with disabilities. Although it has not been materialised in practice, this is a success at the policy level. When all children including those with disabilities are in schools with equal opportunity and reasonable accommodation, then that would be the success. Without children with disabilities, there is no success but failure. What do you consider to be the challenges of universal education in Uganda? Universal education is a good idea in principle and in policy. But it has not been realised for many children with disabilities. The challenge is that decision makers are satisfied for the universal education already and do not problematise the fact that many children with disabilities are excluded still from the mainstream. Mainstreaming is important, but without careful attention to children with disabilities, that often makes them invisible as if problems are solved. How could universal education be improved in Uganda? Not only education but the whole society need to change. People need to perceive that it is natural and common sense to include persons and children with disabilities in everything and everywhere with reasonable accommodation. Section 3 Your views on education for children with disabilities in Uganda What comes to your mind when you hear the word ‘disability’? Both positive and negative experiences of persons and children with impairments. What do you consider to be the purpose of education for children with disabilities in Uganda? The same as peers without a disability. To what extent is education for children with disabilities available, acceptable and accessible in Uganda? I already answered this question. What do you consider to be the successes of education for children with disabilities in Uganda? I dare to repeat that not only education stakeholders but the whole society needs to change for successful education for children with disabilities in Uganda. What do you consider to be the challenges of educating children with disabilities in Uganda? I’m not in the position to enlist challenges of educating children with disabilities in Uganda, as I feel the challenges of each child are different from each other due to different environments and different personal capacity including personal characteristics. There is no universal solution for such diverse group of children, and thus tailor made attention should be paid to each child and his/her environment so that he/she can receive proper education. How could education for children with disabilities in Uganda be improved? Once again, I am not in the position to answer on behalf of each child with a disability, as their situations and realities are so different from each other. Not all children are discriminated all the time. Many families are supportive and some community members are aware of equality. However, in general, the society as a whole needs to change to the better so that they are naturally mainstreamed with reasonable accommodation. Section 4 Your views on education and disability in armed-conflict settings What do you consider to be the purpose of education in settings that have been affected by long-term armed-conflict? In principle, the same as any education elsewhere. However, different meanings would be attached, I assume, such as sense of security, normalisation of lives, peer support etc. Perhaps education plays more roles in such areas. What should education in settings recovering from long-term armed conflict such as Northern Uganda look like? I think strongly that this is not the question I should answer. Northern Ugandans who have been affected by the civil war would like to answer it to decide themselves how and what they achieve in the recovery process. They know their needs the best, and it’s not an external person to decide on what “should” something look like. However, in general, as I repeated above, children and people with disabilities need to be included in any post-conflict reconstruction process as active actors. What do you consider to be the purpose of education for children with disabilities in settings recovering from armed-conflict like Northern Uganda? I feel each child with different background of war experiences, impairments and environments has different purpose towards his or her education. Children with disabilities are so diverse that it is difficult to answer this type of question. What activities should be considered ‘educational’ for children with disabilities in settings recovering from long-term armed-conflict such as Northern Uganda? Once again, it’s difficult to answer this type of generalised question, because of the diversity of children and their experiences before, during and after the conflict. Each child would need different attention so that interventions become educational. I assume activities both in and out of schools that make people and children without a disability to perceive equal opportunity of children and people with disabilities are actually educational. It’s not always children with disabilities who are educated, but those who are around them need to be also educated to understand the human diversity and equality, I think. In what ways could ‘educational’ activities for children with disabilities be maintained in future armed-conflict settings or wars? I don’t know what are to be maintained. What are there at the moment, and to whom? Are all children with disabilities in the same position to benefit from existing educational activities in Northern Uganda? I hope children and people with disabilities are involved in making important decisions on what to maintain and what to improve in their areas.

"Equal before the Law: Access to Justice" project with Central Asian countries started in 2011 and has been financially supported by the Finnish government with Venice Commission and Eurasia Foundation. Today, we had the privilege of giving our four-hour-lecture to the invited Central Asian law professors in our Institute for Human Rights at Åbo Akademi University. The topic was of course "Disability and Human Rights." It is always very interesting to meet experts of a different discipline and from a different context. I enjoyed the discussion very much. I hope they also did.

On 7-8th of June, Finnish Disability Studies Conference was held at Turku, Finland. This is an annual conference and the third one. Jukka and I participated in this conference. It was attended by 100 people both from universities and organisations of persons with disabilities. Very active interaction took place throughout the conference: very good mixture of academics and activists. One of the keynote speakers was Associate Professor Helen Meekosha who has published extensively on marginalized groups of persons with disabilities among persons with disabilities. This time, her presentation was on Aboriginal people with disabilities in Australia. It was very striking to observe how many structural barriers are on such marginalized persons with disabilities, while many persons with disabilities have been empowered and mainstreamed elsewhere. This heterogeneity of persons with disabilities was often revisited in different discussions on different themes in different contexts. For me, this conference was particularly interesting to understand the variety of research interests in Finland: from bio-ethics on cochlear implant for pre-lingual children to rights to self-determination of persons with developmental disabilities on housing; from legal study to music. In disability studies, I feel at home. This is an important forum for many of us who are marginalized in academic world. Finland is finally going to have a professor on disability studies at Helsinki University most probably from next year onwards for five years. A number of disability organizations raised fund for establishing this position and donated their contributions to the University. Thus the process is already very significant. We are living in a very exciting time in Finland!

Today, representatives of 8 NGOs discussed with the Ministry’s advisors on cross-cutting issues and human rights-based approach. The Ministry is going to create a toolkit reflecting on the new Finnish development policy and wanted to learn from experiences of the NGOs. The new priority articulated in the new Finnish development policy, namely human rights-based approach, has geared some NGOs to modify their activities to fit into it, while it affected all NGOs to think carefully how their activities were associated with this approach. I participated in this meeting, though I am a researcher in this area. Abilis Foundation and FIDIDA (Finnish Disabled People’s International Development Association) were the two invited disability organisations, which I think is an important fact. First, the Ministry staffs introduced human rights-based approach which has three components: mainstreaming, empowerment, and policy negotiation and dialogue. After the brief introduction of the Ministry, each participant presented existing practices in own organisation. Some NGOs has policy guideline, and others checklist mostly relevant to their activities such as children, and persons with disabilities. Those are useful for themselves to raise awareness on cross-cutting themes to be seriously taken into account in their practices. However, they are too frequently neither welcomed nor important per se on the grassroots in Southern countries. At the same time, their human rights-based projects are not enough, when governments are not sensitive to human rights, for instance. Towards the end, there was a consensus that toolkits can work to a limited extent mainly to meet own purposes but are hard to be applied to all situations. Southern ownership in the process of producing a toolkit based on their own needs was pointed out to be crucial. When I reflect on the discussion to the field of disability and development, I feel that human rights-based approach is far from the reality. In my understanding, perhaps the obligation element is one significance of the approach. Is development cooperation based on transnational obligation? I think it is not yet, as it is always under the threat of budget cut and not a long-term commitment. Another question is why persons with disabilities are not prioritised to date? That is most probably because persons with disabilities are too often excluded by actors both in the global North and South. When various actors do not prioritise persons with disabilities, it is essential that a top-down approach takes place to pressure actors to properly include them. For that, toolkit would be useful from the viewpoint of mainstreaming. At the same time, continuous dialogue of DPOs with (and also reminder to) all actors for them to internalise the idea of mainstreaming persons with disabilities as a common sense, while building capacity of persons with disabilities themselves is also necessary simoultaneously. That is to say, a required toolkit is one of many ways towards making sustainable social changes under the circumstance where persons with disabilities are too often excluded. The toolkit of the Ministry will be ready before the summer. I am personally looking forward to seeing how disabilities are included in it as human rights issues.

The keynote speaker was Dr. Harri Englund of University of Cambridge. He mentioned the Finnish new development policy 2012 that highlights human rights-based approach to development as an example of a recent donor phenomenon. He then provoked the audience by mentioning the phenomenon as “human rights fundamentalism,” thereby he meant that human rights activists and practitioners were increasingly becoming intolerant to alternative ideas and means. Particularly, he pointed out that the concerned people’s voices were not heard under this approach when activists’ and practitioners’ voices were louder. He stressed that human rights-based approach being “very productive” and yet “another buzz word,” “only one alternative,” and “not a final solution at all.” In my opinion, it is easy to criticize extreme cases such as fundamentalism. I feel it is more constructive if he would have focused more on actual negotiations and even struggles in complex contexts and themes. He had a few concrete anthropological examples including Maasai women’s rights and traditional circumcision practices. He criticized the way how Northern human rights activists were “obsessed with African people’s intimate private lives” by trying to stop circumcision practices. He then introduces a Maasai indigenous women’s organization as an alternative voice to listen to which has not been listened to well. However, listening to the voices of the concerned people is not simple: voices are not one but many; historically produced and reproduced ways could contradict with rights; prerequisites for expressing voices could be lacking; the global efficiency seeking neoliberalism affects everybody, to name a few. (These are all findings from my Ugandan study on human rights-based approach to disability and development.) Thus empirical theories are more than needed. In the later discussion, one Finnish Foreign Ministry official expressed the pressure from the government to call for research works that interrogate efficiencies of development cooperation. Applicability of research findings was stressed. Academics were of the view that consultants could do that but scholars of social science aim at going beyond such an existing framework/box and thus cannot correspond with the expectation of the Ministry. When it comes to myself and my own research works, why I am engaged with all these research works? That is because the current realities of persons with disabilities around the world are not equal with others without a disability and thus need to be politicized. Research works could critically investigate the realities to (modestly) attract attention to certain themes with their analysis, knowledge and theories, on one hand. On the other hand, researchers have to raise fund for research works and sometimes need to co-opt to existing frameworks and needs. As long as persons with disabilities globally experience discrimination against them, I hope research works on this theme are to be funded towards equality.

It is always extremely interesting for me to learn from different disciplines how they deal with the same issue. Today, I had the chance to attend a seminar, “Does Aid Contribute to Economic Development?” at the Finnish Ministry for Foreign Affairs (more in details at http://www.wider.unu.edu/events/ReCom-events/en_GB/15-05-2012/). The presenter was Professor Finn Tarp of the Director of UNU WIDER (United Nations University, The World Institute for Development Economics Research). He is an economist. He made his presumption very clear that the aid (sic) has contributed to economic development and growth of recipient countries even though some money has been wasted. Based on his research and statistics, he argues that the presumption is correct with the example of 3 out of 36 studied Sub-Saharan African countries had positive effects on GDP or investment. He explained with 25 USD per capita aid per year in a Southern country would increase GDP per capita by 0.5% compared with a country without it, poverty (less than 1,25USD per day) decreases by 3,5%, increases life expectancy at birth by 1.3 years and so forth. He stresses the importance of macro statistics by articulating them as “careful evidence” and “proper works” compared with critical statements to aid without macro statistics. During the discussion session, he introduced 69 formula. For instance, when the annual growth is 3%, it takes 23 years to double the growth. He highlighted, “growth is just one element, but often an important element.” Throughout his presentation, I felt uncomfortable with his generalized concept of growth as if it is a positive thing for everybody. Economic growth of a country could jeopardize relative situation of more marginalized groups of people, when they are left out from the general development. General growth can be both opportunities and challenges for such people and not necessarily a positive thing to take for granted, if the growth leaves them behind. In this regard, his concept of growth has excluded persons with disabilities because trickle-down effect does not take place as a natural matter of fact to persons with disabilities. For instance, UNESCO states, “More than 90% of children with disabilities in developing countries do not attend school” still today (http://portal.unesco.org/education/en/ev.php-URL_ID=32969&URL_DO=DO_TOPIC&URL_SECTION=201.html). Along with the same line, his focus on macro statistics leave out equally important qualitative evidences of lived experiences of persons with disabilities, thereby systematically exclude them from the mainstream discourse of growth, because persons with disabilities are often officially not registered and thus not recognized in different kinds of statistics. Here, I am not arguing that international and development cooperation does not make impacts, to be clear about my positioning. As a social scientist, I am questioning the quality of data in such macro statistics whether they accommodate 15% of the world population who are persons with disabilities. Economic growth is indeed only one element, as he states. However, I got the impression from today’s seminar that it still dominates over a number of important elements including rights to development of persons with disabilities.

(From the left, Chairperson Professor Teivo Teivainen, Tarja Halonen, and Helen Clark) With the theme of “Resetting the global development agenda at the Rio+20 summit,” Helsinki University organized lectures by the two distinguished speakers in collaboration with the Finnish Ministry for Foreign Affairs, European Commission and UNDP on 7.5.2012. The former Finnish President, Tarja Halonen, stressed political leadership as well as strong commitment of all actors for sustainable development which entails not only economic but also environment and social justice as a whole. She called for the end of “tyranny of GDP” and for the need of establishing more comprehensive index of measuring development. She highlighted human rights as important to empower people for making sustainable choices. Helen Clark, former Prime Minister of New Zealand and administrator at UNDP, also stressed human development. She pointed out the lack of political will and incentive because of the fact that political cycle rewards short-term actions. Various challenges are there such as divisions between politicians and activists, poorer people and rich people (the former of whom disproportionally face risks), poorest countries and middle-income countries (the former cannot access to existing international funding) and so forth. She, however, stressed that sharing best practices is important. For instance, the global reaction to the Ozone layer was possible, while Ethiopia has green economy strategy even though it is one of the poorest countries. In the question and answer session, which invited also questions from Tweeters who followed the seminar online on live, Halonen introduced an example of Cider index. When different kinds of Cider are evaluated, it is hard to say which is better because people look at different aspects of Cider with different values. Development is the same. There needs to be many different indexes, from which good political balance on different issues should take place, she argued. During the whole session, “poorest people,” “women,” and “unemployed people” were mentioned but once again disability not even once. Halonen says, “All these are ethical choices.” How ethical it has to be for persons with disabilities to be included in the mainstream discourse? Perhaps good aspiration and ethical consideration are not enough any longer, as evidences have been accumulated. She encourages university students to “try to find new ideas seriously.” I hope many of the readers are encouraged to study this area seriously.