Hisayo delivered findings back to the Ugandan disability movement

This Ugandan disability research project was concluded in the end of September. From my part, it was concluded when findings were delivered back to the Ugandan disability movement in October during my last visit to Uganda. I had three main activities to deliver the findings. 

Firstly, I visited the three deaf women in villages whom I interviewed during my visit in 2008. Popular version of the book was produced so that those who are illiterate also receive findings and information in the colour-printed pictures. Obviously, pictures also have shortcomings and cannot reach, for instance, those with visual impairments. However, as I focused on deaf women in my research, I decided this way of delivering messages. I visited their homes one by one, and gave both popular version and a copy of my book to these three deaf women. I was very happy to see them again, while they also welcomed me with big smile. One of their family members said, “I didn’t know that a mzungu (white) could love us so much.” I felt complicated by this statement, because of the perception generally attached to white people who only use them and leave them. This is something to think about for my future work, definitely.

Secondly, I held a book launch at NUDIPU, the National Union of Disabled Persons of Uganda, the umbrella organisation of persons with disabilities. I invited DPOs and informed them beforehand that I was not paying any sitting or transportation allowance as many development agencies do for holding a meeting. Nevertheless, some 25 people showed up to pick up copies of my book. This was encouraging under the circumstance where people are used to receiving money for any meeting.

Thirdly, I also taught human rights Master students on disabilities and human rights at Makerere University for one whole week; 5-8 pm everyday. Obviously, the teachings based much on the findings of my latest book. But I am particularly happy for the three guest lecturers who came to deliver their strong messages to the future leaders of the country: one woman with a physical disability who was one of my research assistants, one deaf woman who is the executive director of Deaf women’s organisation, and one man with a physical disability who is the newly elected Committee member of the Convention. They were eloquent and powerful. I assume that the students would never forget these personal experiences of communicating with such powerful disability activists from their own country, even when they forget about my lectures!

My research on disabilities, human rights and international cooperation continues. I am now employed as research and development manager at Abilis Foundation in Finland and also work as the research assistant to the United Nations Special Rapportuer on Disability, Shuaib Chalklen. My experiences with Ugandan disability stakeholders will continue to help me to modestly act towards equality from my own part as a researcher.

Hisayo's new book is out! Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Ugandan Women with Disabilities

This book is not meant for profit making. When she was alive, Maija Könkkölä told me that information useful for the disability movement should be free. I totally agree with her and so I do not sell it to anybody, though there are some printed copies of the book (only 260 copies). Abilis Foundation, VIKE, FIDIDA as well as Finnish Academy financially supported the publication so that I could make as many copies as possible to bring to Uganda. I also bring 200 copies of popular version of the book so that I can give my findings back to Ugandan persons with disabilities, many of whom are illiterate. For those of you who have an access to Internet and are literate, I kindly ask you to download the following chapters in PDF files and read them on-line. For those of you with visual impairments who have difficulties reading PDF files, I will be happy to send you Word files. Please write to me to hisayo.katsui (at ) abilis.fi I hope you enjoy it!





0. pre-introduction (including foreword by Shuaib Chalklen)
1. introduction
2. concepts and theories
3. methodology
4.1. life stories
4.2. case study 1
4.3. case study 2
4.4. case study 3
4.5. case study findings
5. human rights-based approach in practice
6. global context
7. participatory research discussion
8. concluding remarks
9. references

KEPA development policy day: disability as an indicator for a human rights-based approach to development?

(<-- Tuomas Tuure is speaking on the left) KEPA, the Service Center for Development Cooperation in Finland, held its Development Policy Day. 170 people, most of them from the Finnish NGO Sector but also from the Foreign Ministry and academic community, participated in this seminar. Speakers were:

- -  Maina Kiak, the UN Special Rapportuer on the Rights to Freedom of Peaceful Assembly and of Association,

- -   Mirjam van Reisen, Professor of International Social Responsibility at Tilburg University,

- -   Erkki Tuomioja, the Minister for Foreign Affairs of Finland,

  -   Anabela Lemos and Tuomas Tuure as the Finnish NGO reprensetatives. 

All were concerned about the shrinking space for civil society ironically after the Arab Spring. Many challenges were also presented including the division between service delivery-oriented and watchdog-oriented NGOs; between Northern and Southern NGOs; between domestic and international policies of Northern states (double-standard), and so forth.

Ethiopia was much focused due to the restrictive state environment against civil society. On the one hand, Kiak and Reisen, are of the view that development aid should not go to such undemocratic governments and prefer democratic ones by highlighting values. On the other hand, NGOs are finding ways to deal with such difficulties in creative solutions. Tuomas Tuure of the Threshold Association introduced how creatively it deals with human rights when governments are not tolerant to human rights. As disabilities are often considered as social issues, this was used as a tool to cut into such contexts. Disabilities are not threatening political issues in many countries. This is one characteristic of disabilities.

I think on the other side of the coin is that disabilities are still not human rights issues. They are often not included into mainstream discourse of development. Conversely, this means that proper inclusion of persons with disabilities could become the benchmark of comprehensive development cooperation. This could be even an indicator for measuring a human rights-based approach to development that the Finnish government is trying to promote. All the speakers were in the strong believers on people’s power and democracy. That democracy should not leave marginalised groups of population.

Hisayo attended the Seminar on Development Cooperation Evaluation by the Finnish Foreign Ministry between 26-28.9.

The Unit of Development Evaluation of the Finnish Foreign Ministry held this evaluation seminar inviting Ministry staffs, NGOs, consultants and researchers. The trainers were “evaluation experts,” Oumoul Ba Tall and Jim Rugh. They say, “Competition is high (in the development cooperation world) to receive funding. And thus expectation towards evaluation is high.” However, in the very complicated world as of now, evaluation of a single intervention particularly pertaining to impacts assessment has become extremely challenging. There was a lot of discussion on unrealistic TOR for an evaluation work: too big scope and demands of commissioners (often donors) on the evaluation, as well as too short timeframe and too little budget. Often TOR is not negotiated between the commissioner and the consultant(s). But it was recommended to discuss on it and negotiate so as for the evaluation work to be realistic and feasible. Another advice was to start the evaluation process already in the beginning of an intervention in the form of baseline study and continue with mid-term evaluation and then finally the end evaluation, if possible also post-evaluation. The Finnish evaluation works are mostly done only in the end of interventions, which was suggested to change. More participatory approach involving local consultants was also discussed, as hitherto Finnish evaluation works are mostly externally done by consultants from Finland. Both internal and external perspectives would be beneficial for an evaluation work. I was very concerned about the seminar discourse which did not properly involve marginalized population including persons with disabilities. I raised my hands for a few times to point out the importance of human rights-based approach with the principle of non-discrimination so that marginalized population would also be included properly both in development cooperation activities and evaluation works. However, the trainers replied to my comments by saying, “Yes, special study and special intervention focusing on marginalized population are also good.” Disaggregated data collection and specialized interventions are obviously important, but they are not sufficient. My point was to mainstream persons with disabilities and other marginalized groups in practice of development cooperation as a whole. At least in small group discussions, seminar participants in the same group took my ideas seriously, which was encouraging. When I talked with Aira Päivöke of the Evaluation Unit of the Ministry over a lunch, she was also aware of the fact that implementation of a human rights-based approach in the Ministry has still been largely missing, though DPOs are filling the gaps at the grassroots level and the development policy is based on human rights. She claimed that disability sensitiveness is missing in between grassroots and policy within the Ministry. To improve this situation, the Ministry is calling for an advisor specializing in marginalized population. It’s so dynamic and interesting time to live in Finland particularly in terms of international cooperation in the field of disability!

Persons with disabilities from the global South met Anne Sipiläinen and Judy Heumann in Finland

(<--Ms. Anne Sipiläinen, the Undersecretary of State in Finland, is on the back in the middle surrounded by the Abilis coordinators from the global South.) Abilis Foundation had a one-week-seminar during this week with its coordinators from 11 countries: Bangladesh, Cambodia, Ethiopia, India, Kazakhstan, Kyrgyzstan, Mozambique, Nepal, Tajikistan, Tanzania, and Uganda. The partner organization from Somaliland was not granted a visa and could not participate to this seminar. I am going to be in charge of evaluation of Abilis Foundation for the coming 3 years, and I joined four sessions of the seminar. The first is the visit to the Ministry for Foreign Affairs when the international coordinators met with Anne Sipiläinen, the Undersecretary of State in charge of development cooperation and development policy. She took one whole hour to listen to advices and experiences of working with persons with disabilities. Everyone in the meeting was given the opportunity to express one’s experiences and suggestions to the Ministry. After each suggestion, she deeply showed her interests and expressed the importance to disability rights. On the basis of my own research experiences, I suggested the Ministry to pay attention to 1) the ownership of persons with disabilities in its both top-down and bottom-up development cooperation activities, and 2) the prerequisites for persons with disabilities in the global South to be able to access development cooperation activities including Abilis Foundation. I also added the importance of research to remember in this area! It was very encouraging to have witnessed that the person of that high rank in the Ministry was interested in meeting the international guests of Abilis Foundation. Secondly, I facilitated the discussion on evaluation in the field of disability. The coordinators gave advices to what I should pay attention and on what kind of indicators could measure impacts in this particular field. Thirdly, I gave a lecture with Rea Konttinen on human rights-based approach to disability and development.

Fourthly, the Abilis Foundation invited us all to the farewell dinner and Judy Heumann joined us as the guest of honor. She is here in Finland to advocate for disability rights. Today she met among others the President of Finland and the Foreign Minister. She also spoke in the Parliament seminar prior to this dinner on the importance of paying more attention to disability rights. Finland has been enjoying to host these important international guests and been creating momentum to disability rights to be mainstreamed. I sincerely hope that the series of events will lead to political will and leadership to respect, protect and fulfill disability rights not only in Finland but also in its international cooperation. (--> Ms. Judy Heumann, the Special Advisor of International Disability Rights in the U.S. Department of State)

Hisayo in New York as the assistant of the United Nations Special Rapporteur on Disability between 10-16.9.

(Picture: The Special Rapportuer, Shuaib Chalklen, in front of the United Nations.) The Rapporteur attended the Civil Society Forum, the 5th Conference of State Parties (COSP5) of the Convention of the Rights of Persons with Disabilities (CRPD), and the Global Partnership on Children with Disabilities, Partners’ Forum by UNICEF. He spoke, chaired and concluded various sessions during the aforementioned events. Moreover, he had 16 personal meetings with different disability stakeholders including UN agencies’ representatives, the African Union Ambassador to the United Nation, bi-lateral donors, and global and local organisations of persons with disabilities (DPOs). I had this great opportunity to experience and observe these events and meetings as the Rapportuer’s assistant. The schedule was really hectic starting from early morning with breakfast meetings till late at night with dinner meetings. But it was extremely empowering experience for me, or anybody there. Main agenda was to find ways together and individually in increasing visibility of disability in the high level meeting on disability in September 2013 among the member states of the United Nations, thereby also that in the post-Millennium Development Goals (MDGs). The mistake of MDGs not including disability rights should not be repeated, which was the consensus for the post-2015 agenda. The disability stakeholders will ensure that their united voice will be heard. The Rapporteur was one of them trying to highlight the importance of these forthcoming events. The Rapporteur had another important aim for this trip: to get consensus on the establishment of African Disability Forum under the African Union Disability Architecture. The Forum will disseminate information to primarily African DPOs but also to the government officials. Information available at an international level had many times failed to reach at African disability stakeholders including the Rapporteur himself. Such information dissemination initiated by the Forum is expected to increase capacity of disability stakeholders. Everybody he talked on this Forum was in the same opinion that lack of information is one of the major challenges in Africa. Although this is the initiative of the Rapporteur, many stakeholders would like to give their inputs and ideas for this Forum, which has complicated the establishment process. This is unavoidable to go through, as opinions of relevant stakeholders have to be exhausted for establishing an activity at the African Continental level as this one. However, such discussions could also be driven by own interests of individuals or interests of different agencies that they represent for. Disability is diverse, development partners have complicated relationships among themselves, and personal feelings are also involved when it comes to issues around disability. The Rapporteur has not been successful in raising fund for this Forum activity yet. But it could become even more complicated when money is found, for doing a simple activity for increasing capacity of disability stakeholders in Africa. The meetings observation has taught me some challenges of making consensus in this field. I was totally overwhelmed by the scale of the global disability movement with powerful advocators including the Rapporteur himself, the vice-president of Ecuador in his wheelchair, and many, many others. As disability is too often considered as a minor subject in reality, I was greatly encouraged as a disability researcher to have witnessed this movement with my eyes in front of me. I hope many more younger disability stakeholders will have chances to attend such meetings as these ones. I am full of energy to move forward with my disability research works thanks to this trip!

Hisayo trained Abilis Foundation staffs on Human Rights-Based Approach to Disability and Development with Rea Konttinen

Today, I had the privilege to hold a two-hour-training session on Human Rights-Based Approach to Disability and Development. Abilis Foundation (www.abilis.fi) was established in 1998 as an organization of persons with disabilities specializing in funding activities of persons with disabilities in the global South. During 2011, the Foundation had 260 on-going projects on average that were run by organisations and groups of persons with disabilities, most of them on the grassroots. Since the establishment, the Foundation has applied human rights-based approach to development and prepared its policy document on human rights-based approach. As this document is based greatly on my forthcoming book findings, namely empirical theory on human rights-based approach to disability and international cooperation, I was invited to co-organise this training session with Rea. As all the staffs have accumulated great knowledge and expertise on disability in the global South through their daily activities, the training was enriched by their own experiences and thoughts around them when they presented their opinions. All participants deepened discussions with their own examples, which was the best part of the training. When we had a group exercise to plan a human rights-based project to be funded by the Foundation, one staff raised an interesting insight. When all are too well-prepared based on human rights, then people would become passive, too. This is a very interesting opinion. When there are rooms of improvement in terms of inequality, then persons with disabilities have to become active in transforming the reality. The analogy could be applied in the global North, when welfare state of Finland takes into account fundamental human rights of persons with disabilities, for instance, disability movement becomes weaker, perhaps. The point is, that the passivity itself is not an evil. When one decides to remain passive with her/his own choice, that is totally different from the passiveness due to disabling environments and/or low capacity of the person. The same goes to participation: non-participation with one’s own choice is not the same as non-participation in the form of exclusion. The self-determination concept, however, is quite tricky. If you would like to go deeper into this discussion, please read my forthcoming book, “Disabilities, Human Rights and International Cooperation: Human Rights-Based Approach and Lived Experiences of Ugandan Women with Disabilities” to be published next month by the Centre for Human Rights of Persons with Disabilities (www.vike.fi). Thank you, Abilis staffs, for this wonderful opportunity to learn from your valuable experiences! And Rea, you are super good trainer!

Hisayo answered questions again

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.

Jukka and Hisayo gave lectures in the framework of "Equal before the Law" project to Central Asian Law Professors

"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.

Disability Studies Conference in Turku, Finland, on 7-8.6

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!

The Finnish Foreign Ministry listened to Finnish NGOs on human rights-based approach and their existing toolkit and their good practices

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.

“Human Rights + Development Policy in Africa = ?” Seminar at Helsinki University on 21.5.2012

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.

Professor Finn Tarp, the Director of UNU WIDER, at the Finnish Foreign Ministry

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.

Tarja Halonen and Helen Clark at Helsinki University

(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.

Hisayo Answered Questions

A university student found this blog site and turned to me with some questions for her research. I thought of sharing my answers with wider audience. • Given your experience working in Uganda, how do you judge the effectiveness of the government's policies concerning the rights and needs of PWDs? In my opinion, using the "effectiveness" measure is not quite correct for any intervention in the field of disability due to the history of profound discrimination against many persons with disabilities. Any single intervention cannot make significant change not due to ineffectiveness of the intervention but due to such historical factor in terms of both disabling environment and consequently under capacity of persons with disabilities, both of which make it difficult to create quantifiable positive impacts. In this sense, this question is somehow out of the context perhaps, particularly when “persons with disabilities” are not monolithic but heterogenic, while rights are many. Having said that, if I dare to answer your question, those persons with disabilities who had been more empowered have benefited from a number of government policies, such as affirmative action policy. For instance, political representation and higher education have empowered as well as mainstreamed a number of persons with disabilities. • What role do you believe disabled people's organizations play in effecting change in the lives of PWDs in Uganda? Again, as persons with disabilities as well as DPOs are diverse, generalizing question as this one is a bit difficult for me to answer. It would be easier when both “persons with disabilities” and “DPOs” are more specific, because different DPOs play different roles and even the same DPO could play totally different roles for different persons with disabilities under different conditions. For instance, some receive essential assistive devices from DPOs and thereby improve their quality of life to a great extent, whereas others get more moral and psychological support from peers. It is difficult for me to say what is more important role. However, in general, Northern actors tend to believe in the role of advocacy or watchdog as important, while Ugandan persons with disabilities expect the role as service providers. In reality, I have observed that Ugandan DPOs play multiple roles for meeting different needs of their constituencies and for making positive changes in their lives. • What do you think are the greatest challenges facing PWDs in Uganda today? Different persons with disabilities face different challenges depending on their situations, capacities, personalities, environments and so forth. Some told me that the greatest challenge is to pay for school fees for their kids, while others claim lack of information is, particularly for deaf and blind people. By answering your questions, I feel that perhaps the biggest challenge facing persons with disabilities in Uganda today is that their heterogeneity has not been fully understood by many. They are, for instance, mothers, daughters, caregivers, breadwinners, women, and/or wives, as well as women with disabilities. Many of women with disabilities face similar challenges as other mothers, daughters, caregivers, breadwinners, women and/or wives, in other words. For instance, illiteracy is not only a challenge exclusive to persons with disabilities. Even some persons with disabilities do not perceive to face a big challenge depending on their capacities, personalities and/or environments. Having made my point clear, if I dare to answer your question in a general term, challenges are many such as prejudice, low expectation, lack of accessibility, lack of medical treatments and services, malnutrition, neoliberalism to name a few. • How do you believe accessibility to resources, facilities, and information for PWDs relates to Uganda's overall development? When they are secured for Ugandan persons with disabilities, I believe that its impact to the overall development is significant. Statistically, persons with disabilities are a big part of the total population (15% by the latest World Report on Disability by WHO and WB) and when their family members are also taken into account in this discussion, it is not too difficult to imagine how big impacts uplifting of persons with disabilities alone could make for the whole country development. Moreover, universal design is for everybody including persons with babies, elderly, and those who are temporarily injured or could potentially become disabled at some stage of lives by accident or by age. The whole population, as a result, would benefit from secured accessibility. • Are there any strategies or initiatives that you believe DPOs should be implementing, but currently are not? It is difficult for me to generalize DPOs and persons with disabilities once again. When statutory and international services and interventions are non-existent or extremely limited, many DPOs are expected to play many roles to fill the huge gaps. For many persons with disabilities, DPOs cannot change their lives dramatically due to disabling environment and their under capacity. DPOs are only part of the society and DPOs alone cannot make big impacts when other actors both locally and globally continue to exclude persons with disabilities. Thus I believe not only DPOs but all actors should be inclusive and keep dialogue and negotiation among us to make eventually equal society for all.

Our book of 2009 is now available on-line

Please visit the free on-line copy of a book from 2009: J. Kumpuvuori and M. Scheinin, 'United Nations Convention on the Rights of Persons with Disabilities - Multidisciplinary Perspectives'. http://www.kynnys.fi/images/stories/VIKE-web/vike_tieteellinen_julkaisu.pdf

Hisayo in Ethiopia with the UN Special Rapporteur on Disability

(In the picture, the UN Special Rapporteur and myself are in front of the older AU building. The new AU building is on the back.) Human rights-based approaches are multi-layered and both bottom-up and top-down. In Uganda, I investigated on bottom-up approaches. This time in Ethiopia, I accompanied the UN Special Rapporteur to observe his mission with a top-down approach. Namely, he had meetings with the African Union (AU), UN Economic Commission for Africa (ECA), the African Decade Secretariat Regional Office, the Ethiopian government, Finnish Embassy, American Embassy and an Ethiopian DPO for soliciting what it is called African Union Disability Architecture (AUDA) and African Disability Forum (ADF) that institutionally and practically facilitate promotion of human rights of persons with disabilities in Africa. The Special Rapporteur is going to establish the ADF in the form of an NGO as part of AUDA. When it comes to a top-down approach at this level, the biggest challenge is perhaps coordination. International agencies such as AU and UN ECA are required to listen to member states and coordinate for collective consensus for both policy and action. As the actors are many, coordination among them becomes one of the keys. Another challenge is to attract the actors’ attention to prioritize disability in their activities. As such international organisations have mandate to diverse issues, disability often becomes invisible, unless continuous reminder is made. For instance, ECA does not have any focal point or a staff whose mandate is to promote human rights of persons with disabilities. ECA has one staff who is personally interested in disability and works for it on a part-time basis along with his own mandate. AU has a Department of Social Development which encompasses disability. Considering the population ratio of persons with disabilities, 15% of the total population, as found out in the World Report on Disability (WHO and World Bank, 2011), it is disproportionate not to have staffs specifically dedicated to disability. Disability has to be taken more seriously both in policy and practice including allocation of staffs and resources. Today, various actors including the UN Special Rapporteur are concerned about this fact that disability has not been taken seriously. With his capacity as the UN Special Rapporteur, he visited these organisations and people to exchange and share information on the AUDA to be strengthened in the near future by combining their force. Finland and United States of America are now collaborating to facilitate the process on mainstreaming disability in African Continent. This so-called “Trans-Atlantic Initiative” is only at the initial stage. This was a fascinating opportunity for me to learn how disability is (tried to be) mainstreamed from the top of this level, which has not been interrogated in my previous studies except for the mainstreaming of disability in Japanese and Finnish development policies and practices at the governmental level (Katsui, 2008). The road map is becoming clear but the road itself is bumpy and far from straightforward. One concern would be that the AUDA process has the risk of leaving proper and meaningful involvement of organisations of persons with disabilities (DPOs) behind. For instance, when the African Decade Secretariat Executive Director, AK Dube, was discussing with the African Union and the UN Special Rapporteur concerning a working group meeting for finalizing the Continental Plan of Action for the second Decade, the number of DPOs to participate in this meeting has to rely on how much budget the Secretariat can use rather than securing enough budget for all the relevant DPOs to participate. That is to say, a top-down approach faces a similar challenge as a bottom-up approach: low prioritization, resource constraint, lack of capacity of actors and so forth. More thorough analysis on this trip to Ethiopia will be written in my forthcoming book to be published by the end of September this year. But these are immediate thoughts compiled in Addis Ababa Bole Airport, while waiting for my flight back to Finland.

In Memory of Maija Könkkölä

By Hisayo Katsui

I heard the very sad news on last Monday morning when I went to my office.

I first met her as soon as I started my PhD study on disability and development in 2000. I attended one seminar and she made her presentation on accessibility, as she was an architect. I had the privilege of attending other presentations of her in the following years. In one of the presentations, she introduced her latest publication on accessible homes. After the presentation, I approached her to ask for a copy to purchase it. She said, “It’s free. You can have it for free. If some information makes lives of persons with disabilities better, such information has to be free.” This has been very important for me whenever I produce some writings, unless articles were included into someone else’s books.

Likewise, she has influenced many people’s thinking in her life and such influence definitely continues to live. I would like to thank her, deeply.