I heard the sad news one after another. My dear friend, Ruth, passed away. I’m devastated for the news.
Yesterday, I mentioned Ruth when writing about James: she worked for me as a research assistant for the Abilis evaluation study. We got along very well during this study and became very good friends. I always liked to communicate with her as she was very thoughtful and she made me feel important. I hope she felt the same.
When I was coming to Uganda for the first time, I wanted to live with a woman with disability due to the focus of my study. I immediately contacted Ruth whether I could live with her to learn from her daily living while I’m in Uganda. But she was just appointed to a job in Lira and was not in Kampala where I was going to base. She was so sorry for not being able to accommodate me but instead introduced Prossy who is her dear friend. “You will feel like you are staying with me when you are with Prossy.” Her words convinced me and even without knowing her, I asked her permission to stay in her place. And as she rightly said, Prossy has become my very good friend.
I brought her a teddy bear among other presents. She liked it so much. When I visited Uganda for the second time, I brought her another stuffed animal. She carried it around everywhere. She said she was afraid if she would leave it to somewhere, somebody would steal it. She was very sweet.
One day, when I came back home, Prossy said I got a surprise present. It was a hen! I had never received a hen as a present in my life, and got really surprised who could ever give such a present to me. It was Ruth. A hen costs not a fortune but a lot of money in Uganda. Prossy then explained me that Ruth wanted to show that I was important to her.
It’s really hard for me to believe that she is gone. My heart is really torn apart.
May her soul rest in peace.
I heard the very sad news this morning that my friend and internationally well-known disability activist, Honourable James Mwandha, passed away. He is the very person who inspired me to start this research on disability in Uganda.
The first meeting with him was a good luck for me. In 2004, one of the Finnish delegation members who were heading for Washington D.C. for the World Bank Global Conference on Disability and Inclusive Development suddenly had to cancel the trip. The departure date was approaching and with such a short notice, many people turned down the offer to travel. The Finnish disability community then turned to me and I happily accepted to take the place.
The conference dealt greatly with what the title of the conference says…with only limited number of African representatives. Among the “white” crowd, the Ugandan delegation was outstanding. For instance, on one hand, the Ugandan delegation also included a personal assistant of James, Ambrose Murangira (then and current chairperson of the Ugandan Association of the Deaf) and Ambrose’s sigh language interpreter. On the other hand, many representatives from other Southern countries came by themselves without their personal assistants and interpreters, most probably due to lack of resources. I got very interested in Uganda and learned to know that James was then a Member of Parliament in Uganda. I remember very well that I asked so many questions to James and Ambrose concerning the Ugandan disability movement.
After coming back to Finland, I was commissioned to conduct an evaluation study of Abilis Foundation on four countries. I then included Uganda as one of the four. James helped me during this evaluation study. When I was looking for a woman with disability who could be my assistant, he introduced handful of them with high academic background! I was so impressed once again for the fact. My interests to Uganda increased as time went, as the assistant , Ruth, was so clever and effective and yet a very warm person.
When I finally visited Uganda in January 2008 with the current research, I witnessed how much James was respected. People called him “Honourable Mwandha.” He welcomed me warmly to his home and gave all information and contacts over many cups of tea and sweets. He even made the appointment for me to meet the Minister Madada who is in charge of disability issues in the government. Being a young and female researcher is sometimes challenging in Uganda where elder and male figures are more respected. Yet James always treated me as an equal person.
He was very sharp and proactive in his thinking. He had many ideas and visions. Any meeting became very dynamic and future-oriented when James was present.
He lost the election in 2006 when the multiparty political system was introduced to Uganda. He belonged to the opposition, which people say is the reason for his defeat. He said, “I’ve never regretted for changing the political party.” He was a strong and honest disability activist and politician.
I also know him as a warm father and grandfather. He showed pictures of all his children and grandchildren, some of whom I met.
We just agreed that he would be one of the advisory board members for the next project, too, once the research funding is granted. I wanted to learn much more from him.
I just like to say “thank you” to James for the friendship and much more.
May his soul rest in peace.
Mr.Shuaib Chalklen visited Finland for the first time. Finnish DPOs (organisations of persons with disabilities) (and a few others including myself!) had the chance of meeting with him to discuss hot issues in Finnish and global disability movement in the premise of the Finnish Association of People with Physical Disabilities on 25.5. Around 20 representatives of DPOs attended the meeting.
He has been the Special Rapportuer since August 2009, but he described the first period as "lonely." He was appointed to the position without available resources, and so works from his home computer! Despite the circumstance, he promised to make efforts in 1) promoting ratification of the Convention on the Rights of Persons with Disabilities to as many countries as possible, 2) mainstreaming disability into development (refering to the Article 32 of the Convention), 3) linking activities to the Millenium Development Goals and 4) giving priorities to more vulnerable people among persons with disabilities such as women and girls with mental disabilities and persons with disabilities in African countries.
His experiential knowledge of the needs of both bottom-up AND top-down approaches was interesting and insightful. Continuous pressure to various actors, both local and international, are needed to build more dedicated institutional structure and focal point of disability in the current system including United Nations and the World Bank. I think this argument is also applicable to national structures as well. Disability rights have been somehow marginalised and dealt with by ad hoc units. But it is high time to commit to it in terms of resources and institutional structure. I agree with him.
I'm sure his coming had a good impact on the Finnish government, disability movement and disability research. Thank you, Shuaib, for coming. Hope to see you soon again.
Finnish Federation of the Deaf Association was commissioned by the Finnish Foreign Ministry to prepare a TV documentary on deaf children in Uganda, and Hisayo has been part of the production team. Now the DVD is ready.
The content is divided into two parts: first part describes lives of deaf children in Uganda following three children and their families (38 minutes), while the second part is a discussion between Markku Jokinen, the President of the World Federation of the Deaf, and Hisayo (12minutes). The language is Finnish sign language and Finnish at the moment, but English version will be ready soon.
I personally like this video very much, as the main production team members were Deaf themselves both in Finland and in Uganda! The producer, photographer, and local guides were all Deaf. Their perspective is original, and highlights essential matters for Deaf people such as the right to sign language even under resource constraints in a developing country like in Uganda.
If you are interested in getting hold of a copy, you can contact Jouko Keltanen (firstname.lastname@example.org or tel +358-40-5467730). One copy costs 30 Euros.
<-- Course participants visiting NUDIPU, an umbrella organization of persons with disabilities in Uganda
Our project organized in a fruitful cooperation with the North-South-South Sustainable Development and Human Rights Network a one-week course at Makerere University during 15-19 March 2010.
Around 30 students from Universities of Turku/Åbo Akademi, Dar es Salaam, Zanzibar, Pretoria and Makerere. Also the teachers came from these different home universities to share their experience. The themes were much around the UN CRPD and different general and specific topics around the Convention were discussed, for example right to non-discrimination, right to education and right health. The methods of learning during the course included lectures, working groups, moot court and a field visit.
The course was very important for our research project, since we had originally planned to teach a course both in Turku (which took place in December 2009) and in Kampala. So it was nice to complete this task.
About half of the course participants were persons with disabilities, also some of the teaching staff were persons with disabilities. Of course, we faced some challenges already in the early planning stage of the course. The challenge was to find accessible venue and accommodation. Finally, all the other participants stayed at the Makerere Guesthouse, while persons who could not manage there because of the inaccessibility had to stay in a hotel. Also during the course, there were some challenges relating to accommodation needs of persons with disabilities. The organizers managed those rather well in the circumstances, but...
The patterns of challenges faced during the courses in Turku and in Kampala were quite the same. First, the importance of facing the challenges in the very early planning stage is crucial (including budgeting for accommodations). Second, paying serious attention to the accommodations needs of the participants, during the course is crucial, it happens too easily that the course just proceeds and not enough attention is paid to providing accommodation and asking and asking again from the participants, what are their needs. Third, getting feedback and analyzing that after the course is important.
We want to pay our attention to analyzing the three aspects mentioned above. After and during the courses, there were voices raised, that accommodation was not provided in the sense they should have been provided. Especially we want to look closer at what went on in the mindset of persons with disabilities. We will elaborate these topics in a forthcoming working paper with a provisional title 'Observations on Equality and Reasonable Accommodation of Persons with Disabilities during Two Academic Courses on Human Rights and Disability in Turku (2009) and Kampala (2010)'.
Kaddu Zachary (Jukka Kumpuvuori's Research Assistant) graduated (Bachelor of Social Work and Social Administration, Makerere University) in January 2010. The research team gongratulates! Kaddu gave a lecture on Daily Lives of Persons with Disabilities in Uganda in the end of 2009 in Turku, Finland.
The idea of his presentation was, that the realization of human rights of PWDs in Uganda has remained a challenge even in amidst of the legal framework which has been created both at national (Uganda legislation) and international level (human rights treaties). PWDs in rural areas still remain deprived of their rights, fail to access services and are prone to all sorts of Violation. The enactment of legal frameworks is not only good but also the implementation and the practicalities thereafter.
According to Kaddu, we need to design policies that not only foster good intentions but use a bottom-up approach, which incorporates the views of grassroot PWDs in developing agendas. It’s a collective action taken with diligence, focus and a sense of direction to create a disability friendly environment to which human rights are considered and PWDs entitled to enjoy them. Actions of various actors will determine the destination tomorrow which calls for positive attitude, acceptance of who we are and courage to demand and hold all those persons who may jeopardize the achievement of our rights accountable.
Please see the presentation as whole in doc-format here!
Students in Moot-Court Turku! (Photo Jukka Kumpuvuori)
Kaddu Zachary lecturing in Turku (Photo Jukka Kumpuvuori)