Disability Rights in Uganda - Research Blog

'Nothing About Us Without Us'

2012-01-22T12:55:00.000+02:00

’ Nothing about us without us’ was the slogan often repeated during the negotiations of the Ad Hoc Committee that worked towards the CRPD. The slogan has its basis in the point of view that persons with disabilities themselves need to be included in processes involving them with the aim of avoiding dependence, control and paternalism of society. The slogan brings explicit the well founded fear that the needs of this group of people neither can nor will be taken note of if persons with disabilities are not included in decision-making.

The UN CRPD lays a solid platform for this obligation, starting from the General Principles in Article 3 (c) which pinpoints full and effective participation and inclusion of persons with disabilities in society and from General Obligations in Article 4 (1), which mandates the State Parties to closely consult with and actively involve persons with disabilities through their representative organizations, and ending in the duty to include organizations of persons with disabilities in some of the specific areas, such as international co-operation (Article 32) and National implementation and monitoring of the UN CRPD (Article 33). In the specific context of Article 33 of the CRPD, the mandate to include organizations of persons with disabilities is very strong.

As a conclusion; there is a normative mandate to include organizations of persons with disabilities in all the bodies that will be maintained or established in the context of Article 33 of the CRPD. Many governments are planning how to make the CRPD part of their legal systems. The level of participation of persons with disabilities in the planning processes and in the planned organizational models is varying between states. The topic is extremely relevant especially in the development context, as it is crucial that persons with disabilities are included everywhere to enable the inclusion of global disability rights issues in the agendas of government bodies working with the CRPD.

There are already 109 ratifications of the CRPD and even more, 153, signatures to the CRPD, so there are so many different models!

‘Nothing about us without us’!

Seminar on World Report on Disability and Finnish Development Policy on 13.12.at Helsinki

2011-12-13T21:59:00.004+02:00

(Dr. Tom Shakespeare on the right)

Written by Hisayo Katsui

The World Health Organisation and the World Bank launched “World Report on Disability” in this summer (http://www.who.int/disabilities/world_report/2011/en/index.html). FIDIDA (Finnish Disabled People’s International Development Association) and the Finnish Ministry for Foreign Affairs organised this seminar as a Report launch event. Around 70 people attended the seminar from various backgrounds and we had active discussions on this report from multiple perspectives.

Tom presented the Report as “practical document” which brings together “all scientific documents with evidences and data.” Kalle Könkkölä, the Executive Director of the Threshold Association, also commented that the Report made all those findings as facts, which used to be frequently treated merely as opinions of individuals with disabilities. For many persons with disabilities, findings are so familiar from their own experiences. But with this Report, you can make an argument to prove that they are scientifically researched evidences and facts.

One of the significant findings is that the number of persons with disabilities is 15% of the world population (1 billion) when functioning questions are asked. (Among them 110-190 millions are severely disabled.) This is much more than we have hitherto considered, namely 10-12%. This point, I doubted that there could be even more because still today many persons and children with disabilities in Southern countries are hidden at home and not included into existing official statistics, which was the case in Uganda, for instance. Markku Jokinen, the Executive Director of the Finnish Association of the Deaf, also pointed this out in his speech.

Tom emphasised the participatory methods which involved so many stakeholders, particularly persons with disabilities and their organisations. When international organisations of this size are involved, this should be a good example, even if it takes a lot of time and money, as Tom admit. This is the most accessible report ever made from the WHO. He has visited and will pay a visit to many countries to launch the Report in the near future. I asked him how a country could invite Tom for holding a similar event, especially when the concerned country is from the South. This trip to Finland was paid by Finland, while he said WHO could cover the cost for visiting Southern countries. I think this is an important opportunity for any Southern country to take advantage of, because the findings are perhaps most urgently needed to be disseminated in those countries.

Throughout all speeches, need of data on disability was repeatedly pointed out. One of the nine cross-cutting recommendations of the Report was also to improve the availability and quality of data on disability. It says, “data need to be standardized” and “internationally comparable to benchmark and monitor progress on disability policies and on the implementation of the CRPD nationally and internationally.” It is true that created knowledge and data are to a great extent difficult to purely compare because of the diversity of environment and contexts in which persons with disabilities live. In many Southern countries such as Uganda, lack of glasses or any other assistive devices hinder many children and people with disabilities from participating schools or engaging into works. Albinos are facing severe and many times life-threatening discrimination in Africa, while Northern countries have very different situations for them. These are just a few examples that could challenge the recommendation to be implemented. Also, I wonder if everything could be quantified to be comparable? Along the same line, lack of research on outcomes was pointed out. Due to the multiple levels of discrimination, interventions on one area could not bear enough fruits. Changes could be subtle such as psychological changes, which could not be easily transformed into concrete changes due to severe discrimination. But if we pursuit evidence-based data in terms of outcomes too much in the field of disability, there will be a danger, I think, that we tend to end up in interventions whose outcomes are easily quantifiable such as medical interventions and material supports. They are equally important, but I would not like to undermine efforts that are not easily showing concrete evidences and data that are comparable internationally.

It must have been very difficult to involve many stakeholders with the participatory methods of the Report. I highly respect the efforts. The Report is more than needed to make permanent positive changes to quality of life of persons with disabilities in the world, particularly in the South. Thank you for the speakers including Heidi Hautala, Minister for International Development and the organiser. This was a great seminar!

2011-04-05T16:24:00.002+03:00

LL. M. Sisay (Alemahu) Yeshanew defended his doctoral thesis on ESC rights in Africa - please see the link to Åbo Akademi University pages for more information. This is good information for disability rights, too! Thanks Sisay!

http://www.abo.fi/public/News/Item/item/4066

Seminar on the Rights of Disabled Persons in Poverty Reduction and Seminar on Empowerment of People with Disabilities and Their Organisations

2011-04-04T13:23:00.002+03:00

We had international guests for the abovementioned seminars including UN Special Rapporteur on Disability, Mr. Shuaib Chalklen, Ms. Maria Reina (Global Partnership on Disability and Development) and Mr. Kudakwashe Dube (Secretariat of the African Decade on Disability). The former seminar was held in the Finnish Ministry for Foreign Affairs and the latter in the Threshold Association. Both seminars were open to everybody, which I thought was great. The guests were the same but the profile of the participants were different from each other: the first were attended by DPOs, government officials, academics, staff of Embassies, while the latter mainly by DPOs. In both seminars, around 40-50 persons were present.

Importance of DPOs and ownership of persons with disabilities on own agenda was repeatedly assured, even though many share the feeling that DPOs are still weak. Cooperation of many actors is indespensable for tackling a number of challenges, but it takes time. The importance of disability to be recognised as rights issues started to penetrate, while few governments financially and concretely support initiatives of global disability communities. Kalle Könkkölä's comment summarises well the discussion we had: "We cannot sleep and wait. If we do, there is only a frog who comes and kisses you." Continuous efforts of DPOs are still highly needed even after entering into the era of human rights and disability after the Convention. They were both very exciting seminars. Thank you for the organisers!

Jukka's Research Assistant's Kaddu's Report

2011-03-13T21:13:00.002+02:00

Hi!

Sorry it has been quite quiet here in the blog recently. I am finalizing my thesis, and so is Edson. Hisayo is still taking care of her children at home. So it has been a bit silent period in the research project. I want to publish the report by my Research Assistant Z. Kaddu from last year. Thanks Kaddu for this, and for everything else. It all is finally coming to an end, perhaps!

RESEARCH ASSISTANTS REPORT REGARDING THE RESEARCH PROCESS RESULTING INTO THE ACCOMPLISHMENT OF THE FIRST DRAFT OF JUKKA KUMPUVUOR’S DOCTORAL THESIS

Kaddu Zachary
(Research Assistant)
M.A. Human Rights (Candidate)
B. Social Work & Administration
Makerere University, Kampala
Uganda

Introduction

Jukka is a Finnish Researcher undertaking his Doctorial studies. I, Kaddu Zachary was appointed to act as the Research Assistant in Uganda. I have carried this position since 2008 when this research started and have seen it through until to-date. I have been charged with various responsibilities among which included; assisting the main researcher in gathering relevant materials and documents as well as arranging and conducting interviews were necessary. Our cooperation and team work has made this research a success and it’s upon this kind of collaboration that we have been able to reach this stage – presenting the first draft of the whole thesis. Though this process has not been a walk over, we have managed to overcome the various challenges and obstacles which would otherwise have hindered the success in this work. In this report, I present the activities which I have undertaken, my experience as a young researcher, a critique on Jukka’s first draft thesis, and significances of the study to the Ugandan disability society.

Planning for the process
The research has involved various processes which were planned between the researcher and the research assistant. It involved numerous consultations even though the two individuals were far distant from one another. The process started by appointing me in the first place as the research assistant which was a good beginning paving way for cooperation in the future. We joined together efforts in which I was able to accept this opportunity besides being a young researcher. With Jukka’s ability and skills to lobby, we have been able to work with many Ugandans both pwds and non-pwds. Even though the distance kept the researcher far from his respondents, he struggled hard to network basically through the internet making him to access as many respondents as possible.

The acceptance of the respondents to participate and provide the necessary information was all by consent. Most of them willingly volunteered to participate even when they did not know anything about the research. Most of the respondents were excited and did all that was possible to provide us with the necessary information. In this regard I can not hesitate to point out the great cooperation given to us by the National Union of Disabled Persons of Uganda (NUDIPU) and significant support and cooperation from late - Ex. Hon. James Mwandha (Member of Parliament representing PWDs). These were at our exposal and whenever we needed any help, they did not hesitate to furnish us with the information. The journey to-date has been long. We have gathered information even were it did not exist nor was it available. Through keeping focus about what we needed, we feel a lot has come our way.

Disability issues in the African Context particularly in Uganda have only in the recent decades been given attention. Much of the information on disability has not yet been recorded down for the general public to access. A lot of the information is in pieces or in word of mouth than being written down which limits ones ability to access such information. However, the few pieces of information we were able to get hold of, we have put it together to make sense out of it. In gathering the information, rigorous activities were undertaken to explore what was never put on paper. In this way, we can say, we have put all our energy, emotion attachment and mind-set towards digging up the information which would otherwise have been left unexplored for generations to come as the world tries to understand the meaning of disability.

Participation of the pwds in the research process
The research process was based on the “participatory approach” in which everybody at the different levels in Uganda was capable of giving his/her opinion regarding the information needed for this research. We tried as much as possible to draw information from local, national and international experts in the field of disability in the context of Uganda. Key to note was our ability to engage members of one of the highest arms of government, the High Court. Though it seemed like a dream to me, we were able to work around using our network to reach this group of people who provided us with the information needed. Various members of the disability movement in Uganda have been able to participate fully. A cross section of different disabled people’s organizations (DPOs) under the leadership of NUDIPU provided us with a ward welcome.

Local people from different sections and types of disabilities were cooperative as regards participating in this study. Our focus was not put to only one type of disability but involved different individuals who could provide us with the various information we needed. Non-disabled people were also of much help in this study. Generally, the study involved the participation of locals, policy makers and implementers, DPOs, government departments and agencies and various stakeholders who contribute to the disability movement.

Experience as a Research Assistant
I have been exposed to a high level research given my little experience in research. This opportunity has been one of my few achievements I have gained in the field of academics which have inspired me a lot. Being a young scholar and academician, this opportunity has taught me a lot as I build my future career. First, I must say that the researcher has been a mentor to me throughout this research process. He had good skills in networking and lobbying which helped us make contacts with various people. Upon such a good approach, it became simpler to get the respondents at all costs.

Since research is a gradual process which needs strong commitment, courage and enthusiasm to carry on, adopting such a participatory approach enabled me to reach different people with whom we thought did have the necessary information. I conducted open interviews with various participants who were cooperative in this study. With clear specifications and guidelines from the researcher, it became easy for me to trace down the information and from were I could easily obtain the information. In a number of interviews conducted, I did learn that the concept of disability is not only a one mans struggle but all efforts involving academicians, policy makers and the entire community shall the human rights of persons with disabilities be achieved. Achievement of human rights of pwds seemed be a progressive process where not only enacting laws and good legalization but the actions and commitment of resources shall they be achieved. Research into the various areas of disability become an imperative approach through which peoples differences could be explored and the findings could direct the actions towards implementing programmes that address the special needs of pwds.

This research also opened my eyes to understand the different constructs surrounding the rights of pwds. These constructs are largely dependant on the influence pwds and their organizations can have on articulation of issues to the policy makers. Legal force to some extent needs to be used to make things attainable. Enacting of laws without implementation is often reflected in the Ugandan legislature. Uganda has some of the best laws and policies regarding the welfare and improvement of the rights of disabled persons. However, these legal documents are mere paper work which is to a very small extent implemented. The legal structure of the Uganda has also not adopted a positive response towards advancing the rights of persons with disabilities which could be the reason for the low cases being reported in courts of laws on disability discrimination.

In this research, issues of discrimination and inequality were explored and these were found to be pronounced with low or no actions taken to avert them. Even in the presence of suitable laws to hold down people who jeopardize the achievement of the rights of pwds, no actions are taken. The research thus observed that pwds have not been at the forefront of the legal systems with few or no advocates who often charge expensively having interest in disability cases.

Therefore, this research has been instrumental in digging up what ought not to have ever been explored in the context of disability life in Uganda. Various findings which depict the current situation of pwds in Uganda have been illustrated giving credibility to this kind of research. I for one, I have learnt the social, economic, political and legal aspects which influence the advancement of the human rights of pwds. The hidden aspects have also been explored which can form a basis for reconsidering various issues that are always ignored particularly in the legal context.

Significance of the research to Ugandan disability society
While this research may be an academic document, it greatly factors in the advancement of the rights of pwds not only in Africa particularly Uganda but world over. The research has tackled various areas which can be used to lobby and advocate for the improvement in the human rights of disabled persons. Experience has shown that unless an issue is explored, the dimensions in which it influences people’s lives always remain ignored. The disability movement in Uganda has moved a long way from scratch to a more pronounced and vigorous campaign to improve the situation of pwds. The movement though as old as 30 years, a lot still needs to be done by both the pwds and the non-pwds. This study has highlighted the gaps in policy, legal, social and political spheres which act as starting points if the disability movement is to continue with the efforts of getting pwds under one voice to demand for their rights.
Before this research, issues pertaining the disability movement seemed focused on one point of advocating for policy reforms to include pwds in all development processes. However, the research considered issues which are legal in nature which could also be used to make the existing policies and legislation meaningful. The legal system’s failure to put disability issues among its programmes has been highlighted paving way for the legal profession to do more than simply advancing other aspects and tuning a deaf ear on disability concerns. Additionally, even the disability movement can use the research findings to explore and involve the legal systems in the struggle to achieve a fair and free environment in which pwds have a right to a better life in Uganda.

For the international community, in order to understand the dimensions in which the disability movement in Uganda operates, this research may be used. Various concerns have been compared between the Ugandan legal system and other systems else where in the world. These issues can be of great significance for policy influence. The international donor community can also approach the disability concerns in a more holistic manner basing on the discussion made in the research.

A critique of the research thesis
The research was well developed and organized with a close look at the legal dimension in which the disability issues are focused. At the start, the research seemed a little confusing for me as a research assistant. Issues of concern were not clear and tended to be mixed up. However, long way during the discussions and guidance of the researcher, a more clear and thought direction was drawn. Focusing on the legal system for this research was a good way to go. However, there seemed unclear methods of how the information in the legal sphere would be generated. Legal aspects in Uganda present contentious issues which make its hard for a researcher to make clear conclusions. Similarly, legal research relating to disability seemed scarce. The facts presented though may have been obtained from Ugandans themselves, the analysis reflects more of an outside view rather than the inside aspects of the disability movement of Uganda. This may have been so because of the inadequate documentations made of disability issues.

Even though the approach of the study was based on the participation of every body, the views of the respondents have not been used. The disability issues in Uganda are more collected by word of mouth rather than a review of available documents since this is a general problem in the country. The researcher would have quoted more of the opinions of the respondents rather than making an analysis based on comparison with other countries were documents are available. The study would then give a true picture of disability and human rights affairs thus becoming the first document to explore and write down these issues even though the research was legal in nature.

Generally the presentation was more legal with more focus on other countries situations than reporting issues on ground. However, the research has tried to present the facts which were got out of the scratches used.

In Memory of Ruth Nakamanyisa

2010-11-12T14:16:00.003+02:00

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.

In Memory of James Mwandha

2010-11-11T14:26:00.004+02:00

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.

UN Special Rapportuer on Disability, Mr. Shuaib Chalklen, in Finland

2010-05-25T20:51:00.002+03:00

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.

"Lives of Deaf Children in Uganda" Video

2010-05-04T13:28:00.004+03:00

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 (jouko.keltanen@kl-deaf.fi or tel +358-40-5467730). One copy costs 30 Euros.

Human Rights and Disability -Course in March 2010

2010-04-25T13:44:00.004+03:00

<-- 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)'.

Gongratulations Kaddu!

2010-02-20T10:55:00.008+02:00

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!

Course Teachings

2010-01-19T16:31:00.007+02:00

The Blog has been rather quiet, since we have been busy with course teaching. Courses on human rights and disability were part of the research project plan, and we already accomplished a course in Turku (Åbo Akademi, the Institute for Human Rights 30 November - 8 December 2009) with around 30 participants and will continue in Kampala (Makerere University) on 15-19 March 2010. Waiting forward to that course!

Students in Moot-Court Turku! (Photo Jukka Kumpuvuori)

Kaddu Zachary lecturing in Turku (Photo Jukka Kumpuvuori)

'Others'

2009-11-04T10:05:00.005+02:00

Operationalising the Convention phrase, “On an equal basis with others,” into practice in Uganda

Hisayo Katsui & Jukka Kumpuvuori

The following article will shortly be published in Finnish in the newsletter of the Threshold Association (Kynnys ry):

Katsui, H. & Kumpuvuori, J. (2009) “Vammaissopimuksen fraasi ‘samalla tavalla muiden kanssa’ käytäntöön Ugandassa.” Kynnys Mielipidelehti No.4 2009. (In Finnish.)

Preliminary plans of the course in Makerere: Byaruhanga Rukooko, Edson Ngirabakunzi and Jukka Kumpuvuori.
Photo: Kirsi Airio

We start this article by introducing one story that took place in our research project. We are planning for our teaching course at Makerere University in Uganda in March 2010 to activate the discussion on human rights and disability and also to disseminate our preliminary research findings. We encourage students with disabilities from different African partner universities to attend this course. During the planning process we came across a question of accommodation. Accessible accommodation in Uganda means a lot of money expenditure. Only new luxury hotels are accessible, not the hundreds of guest houses around the city, not even the Makerere University Guest House. The funding of the course is not sensitive to these additional costs, which would take the costs of the budget even 300 % higher than planned. That is where it hits – prioritization! Do we accommodate everyone in the guest house that is not accessible for all? As we can not afford to accommodate everyone in a luxury hotel, do we cancel the course? What should we do? We felt that Jukka would need accommodation in an accessible hotel, but how about the local persons with disabilities? They are used to harsh conditions, and thus could they be accommodated in an inaccessible guest house?

With the introduced case above, this article tries to investigate the concept of equality in terms of the expression very commonly used in the Convention: "on an equal basis with others." For instance, in Article 12, it stipulates “States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.” As states are the primary duty-bearers, “others” are assumed to be other citizens of the same territory and thus persons without a disability. However, we think that this interpretation is not simple in practice, particularly when the context is in a Southern country such as Uganda. We would like to provoke your thoughts with the following discussions based on our observations and also on our own experiences.

First of all, what happens when “others” in the same country or community do not enjoy human rights such as right to communication technology, right to education, right to work and effective access to justice? The Convention mentions all human rights to promote, protect and ensure (Article 1). However, they are mostly not accessible and ensured even to “others” particularly in a Southern country such as in Uganda. Does it mean that persons with disabilities under such a circumstance also have to suffer from not enjoying the rights “on an equal basis as others”?

The first observation leads to the second discussion: in practice, is the Convention only for persons with disabilities in a Northern country where human rights have been relatively more promoted, protected, and ensured already? The treatment gap between persons with disabilities in the North and South is a great concern, in other words. This is a largely overshadowed discussion so far but is worth taking into account not to ignore the circumstances in Southern countries when operationalising the Convention in practice, as the majority of persons with disabilities live in the South.

Our question, therefore, is: could “others” mean persons with disabilities in the North for those in the South? We think this is a future-oriented but rights-based vision when equality is taken into account in real practice particularly in the South. Or are we too busy with our own human rights in our own countries? Is Article 32 the last thing after fighting for own rights in own countries? Whose equality counts? When the resource is scarce, what should be prioritized? We often face such questions in our research project, too.

Let us come back to our accommodation issue once again to contextualize our above discussion. Well, the current solution is, that everyone needing an accessible accommodation will be staying in the luxury hotel, while ‘others’, this time meaning persons without disabilities, stay in the guest house, which can not accommodate persons with disabilities. Is this, again, segregation and discrimination? This time we managed to secure reasonable accommodation among persons with disabilities but we ended up in a situation where they are treated in a segregative manner. Will persons with disabilities now be left without the so important networking possibilities and bonding with ‘others’? What should have been done to achieve equality? What do you think?

NEW PUBLICATION FROM VIKE ! - preorder price now available

2009-10-18T08:41:00.006+03:00

NEW PUBLICATION FROM VIKE !
(The Center for Human Rights of Persons with Disabilities in Finland)

United Nations Convention on the Rights of Persons with Disabilities
– Multidisciplinary Perspectives
Jukka Kumpuvuori and Martin Scheinin (eds.)

Published in late-November 2009!

‘United Nations Convention on the Rights of Persons with Disabilities – Multidisciplinary Perspectives’ traces the entry into force of the United Nations Convention on the Rights of Persons with Disabilities. The book offers a number of fresh approaches to disability studies and disability rights by exploring the lives of persons with disabilities from multiple perspectives. It provides the reader with an insightful reading experience on the contemporary topics of disability studies and disability rights.

The book can be utilized as introductory material for anyone who wants to get familiar with disability rights. The book can well serve as material for disability rights teaching and autonomous individual studies.

Please see the Table of Contents below and place your pre-order via e-mail to jukka.kumpuvuori@abo.fi. The pre-order price for the book is 25 € including the book itself and a fixed delivery cost. This price is available only for pre-orders received before 1 December 2009. Beginning from 1 December 2009, the price of the book will be 30 € (inc. delivery). Form of payment: Invoice delivered with the book.

TABLE OF CONTENTS

PART I: UN CRPD – WHY AND WHAT?

Chapter 1: The Special Reaching for the Universal: Why a Special Convention for Persons with Disabilities?
Jarna Petman

Chapter 2: UN CRPD and the Human Rights of Persons with Disabilities
Pentti Arajärvi

PART II: ‘TRADITIONAL’ DISABILITY RIGHTS AND THE UN CRPD

Chapter 3: Treating the Different Ones Differently – a Vehicle for Equality for Persons with Disabilities? Implications of Article 5 of the Convention on the Rights of Persons with Disabilities
Jukka Kumpuvuori and Martin Scheinin

Chapter 4: The Changing Relationship between Disability and Education
Joel Kivirauma and Matti Laitinen

Chapter 5: Teachers’ and Students’ Awareness of and Attitudes towards the Concept of Inclusion Exemplified in Article 24 of the UN CRPD
Jeyaprathaban Sujathamalini

Chapter 6: The Right to “Decent Work” of Persons with Disabilities: Article 27 of the Convention and the Case of Uganda
Edson Ngirabakunzi and Hisayo Katsui

PART III: PARTICIPATION OF PERSONS WITH DISABILITIES

Chapter 7: Towards Participation of Persons with Disabilities from the South: Implications of Article 32 of the Convention
Hisayo Katsui

Chapter 8: Barriers to the Inclusion of Disabled People in Disability Policy-Making in Seven African Countries
Raymond Lang and Ambrose Murangira

PART IV: NEW TRENDS IN DISABILITY RIGHTS

Chapter 9: Realizing the Right to Adequate Food for People with Disabilities in Uganda
Emmanuel K. Kanyemibwa

Chapter 10: Achieving Human Security through Political Advocacy: Linking Ugandan and Finnish DPO Advocacy Work to Article 14 of the UN CRPD
Jukka Kumpuvuori and Hisayo Katsui

Chapter 11: Participatory Justice, the UN Disability Human Rights Convention, and the Right to Participate in Sport, Recreation, and Play
Janet E. Lord and Michael Ashley Stein

Chapter 12: Mental Health Law and Human Rights: Evolution, Challenges and the Promise of the New Convention
Michael Perlin and Éva Szeli

Chapter 13: Persons with Deafblindness in Light of International Agreements
Riku Virtanen

Chapter 14: From Devil’s Seed to Disabled God – Disability and the Human Rights Approach on the Bible Studies and Practices of Christian Communities
Amu Urhonen

Chapter 15: Restrictions of Sexual and Reproductive Rights – The Case of Uzbeki Women with Disabilities
Feruza Zagirtdinova

Welcome to Join "Human Rights and Disability" University Course in Finland!!

2009-10-02T10:35:00.009+03:00

This is an undergraduate university course (intermediate level) equals to 5 credits. Organiser is the Institute for Human Rights at Åbo Akademi University (the project members are also lecturers!). It is composed of 18 hours lectures + 4 hours moot court participation.

Time: 30 November – 8 December 2009

Place: Educarium (Assistentinkatu 5, Turku), Lecture Room 2. (Exception on 2 December: PharmaCity (Itäinen Pitkäkatu 4 b), Lecture Room 1)

Entry Requirements: Basic knowledge on human rights

Target Audience: Students of Law, Social Sciences or other related fields. Researchers interested in the theme.

NOTE: Observers outside the academic environment, e.g. staff of organisations of persons with disabilities are warmly welcome to apply for observer-status or full participant status. Please send your 1/2 page letter of interest to jukka.kumpuvuori(at)abo.fi by 18.November the latest. Course materials are not distributed to participants with observer status. Observers will not gain study points for attending the course. Observers are allowed to participate only to lecture sessions of the course.

Registration: Please e-mail to jukka.kumpuvuori(at)abo.fi by 18 November the latest. Please indicate in your e-mail if you have any disability-related or other needs you want to be accommodated during the course.

Fee: The course participation is free for Finnish university students. If you are not a student of Finnish Universities, and if you participate fully to the course, you have to pay the fee of 70 Euros. Observers can participate the course for free. Please visit this site and this site for more details.

TIME TABLE OF THE COURSE

Monday 30 November

12-14 Introduction of the Course + History of Human Rights and Disability (Hisayo Katsui, Jukka Kumpuvuori & Edson Ngirabakunzi)

14-16 Disability Rights – Global Perspectives (Michael Stein)

16 Handing out the take-home exam (Jukka Kumpuvuori & Edson Ngirabakunzi)

Tuesday 1 December

10-12 Equality and Non-Discrimination in the Context of Disability – an International Perspective (Michael Stein)

13-15 Equality and Non-Discrimination in the Context of Disability – the European Community Perspective (Lisa Waddington)

15-16 Round Table on Equality and Non-Discrimination (Lecturers of the Course & Actors of Local Disability Organisations)

Wednesday 2 December

11-16:30 Seminar on Human Rights and Persons with Disabilities in Higher Education (program is available by e-mail.) Organised and sponsored by the University of Turku and Åbo Akademi University.

Thursday 3 December

Seminar in Helsinki on Preparation Work of the Finnish Disability Policy (Participation is voluntary. Travel cost is not covered by the course organiser).

Friday 4 December

10-12 Human Rights Based Approach to Disability in Development - Theory and Cases (Hisayo Katsui, Jukka Kumpuvuori & Edson Ngirabakunzi)

13-15 Practical Implications of Human Rights in the Daily Life of a Person with a Disability (Zachary Kaddu and Riku Virtanen)

Monday 7 December

9 E-mail –returns of the take-home exam by 9 a.m.

15 – 18 Preparations for the Moot Court in groups

Tuesday 8 December

10-14 Moot Court + Debriefing of the take-home exam

15 Closing the course

[1] Moot Court is an exercise in which participants take part in simulated court proceedings by drafting briefs and participating in oral argumentation.

Hisayo on a radio programme

2009-08-19T09:18:00.002+03:00

Hisayo was on a YLE radio programme called "tiedelinko" in the end of July. This series focuses on "young researchers (defined under 35 years old)." I talked about how I came to Finland, what it means to do a research in Southern countries as a young female etc. The interview was held in Finnish. If any of you are interested in listening to it, you can open the following website and choose the programme of 24.7. My interview was about 5-6 minutes somewhere in the middle.

feed://yle.fi/radiosoitin/podcast.php?channel=35&program=542

I wish you all a nice start of the academic year!

New Publication

2009-05-20T09:58:00.001+03:00

Kumpuvuori, J. & Katsui, H. (2009) “Disability, Human Rights and Human Security: case study on human rights advocacy activities of organisations of persons with disabilities in Uganda and Finland.” Spanda Foundation Quarterly Newsletter Vol.III.No.1.P.14-20.

If anybody needs a word version of the article, please write to us.

Guest Lecture at Diaconia University of Applied Science

2009-05-13T13:51:00.002+03:00

By Hisayo Katsui

My old friend, Marianne Nylund, and her colleague, Jouni Kylmälä, are teaching an intensive course on disability entitled "International Perspective on Disability and Human Rights" at Diaconia University of Applied Science at Järvenpää in April-May. It is great to realise that disability finally started to attract attention in different academic institutions.

Yesterday, I had the great opportunity to give a lecture on participatory research. The students were mainly majoring in Social Work and from different countries (Nepal, Germany, Finland, Chile and Kenya). They were highly motivated and active during the class, and I enjoyed the time very much. Thank you for the students!

I'm going to give another guest lecture on "Human Rights and Disability in Global Context" in two weeks time. I'm looking forward to it.

Hisayo in "Accessibility for All at Higher Education" Seminar

2009-05-11T09:31:00.003+03:00

By Hisayo Katsui

<--In the picture, Amu Urhonen is talking about the link between education and daily life outside of the education institutions.

on 6-7.5.2009, the seminar was organised in Helsinki. There were 120 participants, most of whom were university staffs, students' associations, and organisations of persons with disabilities from all over Finland. This is part of a project (http://esok.jyu.fi/) funded by the Finnish Ministry of Education between 2006 and 2009 to improve the accessibility (not only physical but also attitudinal/psychological/social ones) of students with disabilities at Finnish higher education institutions.

Some keynote speakers were from Norway, Sweden and UK which have all developed systematic and legal environments to ensure accessibility of their students with disabilities. In those countries, major universities have accessibility/disability coordinators as a focal point and they give general and specific advices both to teachers and students how to make the education accessible. In Sweden, 0.3% of the annual university budget is earmarked for meeting different needs of students with disabilities, while Norway has a National Coordinator for Accessibility in Higher Education established by the Ministry of Education in 2003 as a permanent structure supporting accessibility issues. Both universal design and individual adjustment with reasonable accommodations are argued to be necessary.

On the second day, more down-to-earth accessible teaching methods were introduced in different groups. I attended the ones by Professor Alan Hurst of UK and by Paula Pietilä of Finland who is the disability coordinator at Turku University. It was pointed out that anticipatory duty is important. That means, teachers take a measure to reasonably accommodate students with different impairments even before the students disclose their impairments. For instance, majority of students with disabilities in higher education institutions are those with dyslexia at present. One of their biggest challenges is note taking. To remove this challenge away, teachers can deliver lecture notes beforehand to students. Also, for visually impaired students, teachers can make sure that visual materials are accessible. However, “as inclusive as possible” has some limitation because teachers cannot anticipate and have knowledge on all needs of different individuals. Then, teachers are supposed to encourage students to disclose their impairments to facilitate accessibility arrangement. Agreement of confidentiality or permission of sharing the information with other teachers would be asked at this point.

Amu Urhonen from the students' association made an important link between education and daily life outside of the educational institutions: when the arrangement for living daily lives does not go well (ex. When one does not know who goes shopping tomorrow), the education becomes inaccessible.

Compared with the situations in those countries, our Finnish academic environment is lagging far behind. Accessibility/disability coordinators are situated in only few universities, though the awareness is increasing especially when social aspect has become important in the Bologna Process. In Finland, accessibility is not a priority in many higher education institutions, while each university is responsible for allocating resources for improving the accessibility. Many of the adjustments are made on sporadic terms, and persons with disabilities too frequently have to fight for it or to give up.

This was a timely seminar for our project, too, as we have encountered too many difficulties in our academic lives during the last few years. Our team discussed how to make the perception towards accessibility to an added value for the university rather than costly problems of individuals. We hope and try to influence that accessibility will be part of the quality work that the university ensures and makes efforts on, because it is a good advertisement of the university to even PR when accomplished!Hopefully more policy makers both at national level and at education institution level see this as a great opportunity and exercise their political will and leadership to make a positive change in the near future also in our country.

Project was introduced on TV

2009-04-20T09:13:00.006+03:00

On 19.4. the public TV Channel of Finland, YLE, broadcast and introduced our research project in one of its news with sign language interpretation. You can see the news on-line for a while in the YLE homepage: http://areena.yle.fi/hae?pid=811302

Jukka and Hisayo as trainers of "Human Rights-Based Approach to Disability in Development" training for Finnish NGOs & DPOs

2009-04-16T12:09:00.004+03:00

<-- participants and us

On 15.4., FIDIDA (Finnish Disabled people's International Development Association) organised its regular training with the theme of HRBA to Disability in Development (FIDIDA organises trainings twice a year). They kindly invited Jukka and Hisayo as trainers for this one-day-event and gave a freehand. When we started our research project in 2007, we visited FIDIDA and discussed about possibilities of cooperation. This came true in this form of training. We are grateful for this cooperation, which hopefully continues!

It was attended by 30 people, most of who represented Finnish NGOs and DPOs working with persons with disabilities in the South. We expected that most of them would be DPOs, but many NGOs were there, too. It was a very interesting dynamic! Rauno Merisaari, the human rights advisor of the Finnish Ministry for Foreign Affairs, also observed the training for the whole day, gave very insightful inputs during discussions and concluded the training with his presentation. All the other participants were also active in and out of the training room. Especially we enjoyed talking with the participants and learning from them during the breaks. We are very grateful for all the inputs and interesting comments and questions raised during the day. It was a great learning experience for us.

The training started with Jukka’s presentation on Human Rights and Disability. Jukka first explored the notion of human dignity, which acts as a basis for all human rights. After that he concentrated on United Nations Convention on the Rights of Persons with Disabilities and its implications to the human rights situation globally and especially in the development context. Finally, Jukka looked at the evolution of the concept of non-discrimination and especially the failure to provide accommodation for persons with disabilities as a form of discrimination. After Jukka’s presentation, Hisayo made her presentation on Disability and Development, to present the context where the HRBA takes place. She introduced the challenges in the South in terms of identity of persons with disabilities, Eurocentric understanding of the HRBA, low priority on disability, limited coordination among development activities among others. Also, priority making necessity of NGOs working in the South was pointed out. After the background presentations, we finally discussed the theme of HRBA: official understanding of UN agencies, differences and continuation with needs-based approach, positive implication of the approach to disability in development, and basic questions of the approach.

Then, we moved on with the group work. Two real projects were introduced and used for understanding the HRBA in practices. One project was implemented by the Finnish Federation of the Visually Impaired in Ecuador, while the other by Threshold Association/Kynnys in Central Asian countries. We would like to thank both organisations for kindly allowing us to use their projects for our group works!

We hope that the training de-mystified the HRBA to disability in development and connected the approach to the practices through the exchanges of ideas among us. The feedback form filled after the training showed generally positive but different levels of satisfaction and dissatisfaction due to the diversity of the participants. We learn from the feedback and hopefully improve our skills in the future. Thank you for the participants, once again!

Posting by an Ugandan Friend: Prossy Nanyunja

2009-04-14T13:31:00.008+03:00

<-- Prossy on the left. She inspired me in many, many ways!

I am Nanyunja Prossy by names and I work with National Union of Disabled Persons of Uganda (NUDIPU) as an Accounts Assistant. I am a person with a physical disability who has gone through all the stages from primary, secondary and higher institutions of learning. I got this disability at the age of three, my mum told me it was one afternoon when I got a high fever, was rushed to the hospital and given an injection immediately. In a few hours the fever had cleared but the legs became very weak, since then, I’ve lived to be a person with a disability for 28 years now.

So this story is all about the challenges I have encountered as a person with disability right from the age of three (3) when I was a child and the opportunities I got on the way to where I am now. But the challenges seem not to stop or reduce because at each stage of life, they become totally different and the fact that I am to remain with the disability for as long as I am alive, I have come to terms with whatever happens anytime.

As I was growing up, my mum did her best to see me go to school. I did my primary level for seven years after which I had to go to another school for the ordinary level. That is where my problems of being a person with disability started. First, my real father disagreed with my mum, telling her that she shouldn’t bother herself with me because after all, no employer would ever give a job to a person like me even if I studied hard. He then advised her to take me to a vocational school to learn tailoring. My mum cried over it but later decided to continue with her struggle of educating me with the little earnings she would get. By then they had even separated and she was working in one of the big markets in the city centre selling green vegetables.

To my own and my mum’s disappointment, I was again denied admission in two boarding schools and the denial was attached with a reason that being a person with disability, she will not be able to cope with the school environment and that they didn’t have special facilities for such people. This is the time when I started realizing so seriously that I was different from other people, because in my former school where I did my primary, we were all disabled children, so I didn’t see myself any different from others and I believed I had the potential to do what they could do. People always say that persons with disabilities are different because they are not physically able. But what is able? Because for sure they know able within a culture and not within a person. Surprising! So I ended up joining a day school, which made my attendance of classes irregular because I had to walk four (4) kilometers everyday from home to school. And whenever it rained in the mornings, to me it would mean not going to school. The school buildings were all multi-storied, so I always reached my class tired because going up the stair cases everyday was not anywhere near my adventure. I studied there for one year and later joined a boarding school.

I persevered and managed to complete my secondary levels, but with a lot of psychological torture because of the negative attitude that surrounded me from all sides. First from the school administrators, fellow schoolmates, relatives at home and the community. At home, as a child who was growing up, I was seen as an extra economic burden. I needed crutches and calipers to enable me cope with my physical limitations, and they were very expensive. My siblings were also against me because our mum always protected me from doing any chores at home. They could not be taken to boarding schools, it always had to be me just because of my disability.

I then finished both my ordinary and advanced levels and then looked forward to joining a higher institution of learning where graduated with a Diploma in business studies. After getting my diploma, everyone started doubting whether I would be able to get a job. I remember a friend of my mum telling her that, ‘nowadays employers, especially men want to first sleep with these young girls after which give them jobs. But there is no man in his right thinking capacity, who can sleep with a person with disability’. She even asked her why she bothered to waste her time and money to take me to school. It really demoralized me because I was listening to their conversation, and the fact that they were talking about me, made me listen attentively. Unfortunately I couldn’t even respond to their conversation to defend myself.

As I was looking for any possible employment opportunity to come my way, I used to do handwork where I use to weave mats, table mats and table clothes from which I got money to facilitate me with transport and making photocopies of my academic transcripts so I could leave copies to wherever I went to look for a job. Fortunately, I got a job after two years of serious searching. I got to know of a job advertisement in NUDIPU through a person I studied with in primary school and that I had the qualifications required for the job. So I decided to put in my application, was shortlisted, did the interview and passed. I did the interview with four people, two of them were persons with disabilities and the other two were not. I came first and took up the position. It is now six years down the road and I am still working there happily. Getting a job was my turning point because it came as a surprise to everyone as many people didn’t expect to see it happen.

But that was not the end of my problems brought about by disability. Now they started looking at me as someone who was overgrowing and should find a man just to help me get a child who will look after me in my old age, ‘after all, she has a job and getting enough money that she can use to look after her child even if the father of the child doesn’t take up full responsibility’. Even up to now, am being told that crap, can you imagine even by my own mother. It really bothers me a lot when it also comes from my mother because I always saw her as a person who knew and believed that I had the potential to do and achieve whatever I wanted to do without the word disability being fronted.

Being a woman with a disability is a very big challenge here in my country. You are not expected to get married because no man will be willing to genuinely fall in love with you because of the fear of being seen with a cripple. And you are always expected to give in to any proposal of whoever comes to you because he would just be helping you to sleep with him. I remember in the year 2007, there is a man who proposed to me for more than seven months, and I remember asking him why he was insisting on me when I had already told him that I was not willing to start a relationship with him. It still sounds fresh in my ears as if it were of yesterday when that man replied me saying that because ‘YOU ARE NEGLECTED’. Neglected meaning that no man can, and has ever or will ever love me. So he was just going to help me. Awful, not so? I hated myself for that.

Most times I try to put everything behind me so that I continue with my life minus what people say about me, but sometimes I lose out and end up being weak and emotionally touched. It really works me up when walking down the street and people start looking at me in a strange and inhuman way after which they start talking about you, not even minding about what you feel with their comments regarding your disability. Living with a disability is a big challenge that I wouldn’t wish even my worst enemy to become disabled.

To me, the worst challenge as regards living with a disability is having to depend on other people financially. Once you are very poor and not having any income generating activity to rely on, can really complicate the life of a Pwd (persons with disabilities) completely. You are looked at differently when you are a Pwd with money as compared to another Pwd who is in absolute poverty. Personally, I am not rich but at least what I get makes me able to cater for most of my needs. And the way my siblings and other relatives look at me now is totally different from the picture they had of me ten years back. I can even support our mother financially, which some of them cannot do.

And working with NUDIPU has helped me a lot to build my self esteem and to look at things and myself positively. First, because some of my workmates are Pwds, and secondly NUDIPU being a membership organization, all it’s membership is comprised of Disabled people’s organizations with different categories of disabilities. Looking at all these people in their different capacities, how they have struggled with life to sustain their families makes me proud of myself because most of them didn’t even attain the education that I got.

With my earnings I’ve even managed to sponsor myself and go back for further studies to supplement on the Diploma that I’ve always had. I am now pursuing a degree in Business Administration majoring in Accounts and I am yet to complete in May month this year (thus, becoming a full accountant). I am also paying fees to one of my sibling who is now in secondary school and always supporting my relatives financially where possible.

Prossy Nanyunja

nanyprossy@yahoo.com

Hisayo in NNDR Conference at Nyborg, Denmark

2009-04-08T10:25:00.004+03:00

By Hisayo Katsui

Nordic Network on Disability Research (NNDR) organised its bi-annual conference at Nyborg, Denmark, between 2-4.4.2009. It was attended by more than 200 participants from more than 20 different countries. 14 were from Finland. Majority are from Denmark and Norway as has been the case in previous conferences. This trend is also reflected in the published articles in Scandinavian Journal on Disability Research and Disability and Society. Finnish articles are extremely limited in these two journals. Hopefully, there will be more research on disability in Finnish academia and also fundings supporting this important theme!

Throughout the conference, to my surprise, human rights was an undermined concept, even though the UN Convention just entered into force. Also disability in development was only dealt with in the session where I presented my paper ("Human Rights-Based Approach to Disability in Uganda: the Case Study on the General Assemblies of DPOs and the Rights to Self-Determination.") Only two papers in the session elaborated this theme. The session was given the name, "NGO Research" and so the majority of the audience were those from DPOs, which I was very happy about (European Disability Forum, for instance, sent a group of DPO representatives to this Conference). Naturally, the discussion was very interesting and based deeply on practices. They raised the similar question to us, researchers, "How does this research benefit us, DPOs and our disability movement? Isn't it just filling your knowledge gap and serve your interests?" I think it is important to prepare good answers to these questions, so long as we are disability researchers. I would like to thank all the inputs to my presentation!

One session was devoted for the question, "Why there are so few researchers with disabilities in Nordic countries (compared with UK and US)?" It was explained that US disability study started with the Independent Living movement of students with physical impairments, while UK with Social Model of persons with physical impairments. On the contrary, the Nordic disability movement was based on the key concept of Normalisation of non-disabled people concerning people with learning difficulties/intellectual disabilities. Also, it was analysed that the academic community as the environmental structure is very discriminatory for students with disabilities, while the population is so limited that the number of researchers with disabilities are also not many. When thinking of the academic environment here in Finland, I can understand these very well. Disability activism and research are both very energy consuming, and difficult to combine without reasonably accommodated environment. This is a valid argument in Finland, too.

<-- Tom Shakespeare in his wheelchair. The two of the keynote speakers were by Jan Walmsley and Tom Shakespeare, two British scholars, who take a distance from the traditional Social Model school. Both mentioned that Disability Study should go beyond "Nothing about us without us" slogan of the disability movement: researchers should have a say. This is very different from the Social Model that rather controls and uses researchers for their purposes. I am still considering what is the right position of myself as a researcher in my own research.

<-- TV Glad presentation by the staffs with learning difficulties.

The conference was very well-organised. I also liked the non-academic programmes including the presentation of TV Glad, which is the TV station managed by Danish people with learning difficulties/intellectual disabilities. They have been the role model of actively working people with learning difficulties for the last 10 years. It was great! The conference was very intensive and hectic, as many of the academic conferences are, but very interesting and useful space for exchanging ideas with peers and also with disability activists. Thank you for the organisers of the conference!!

Seminar in New York

2009-04-07T07:25:00.004+03:00

Jukka (looking at the map) and Edson (trying to figure out where we are) in downtown Manhattan, New York.

Our project was involved in a seminar ‘United Nations Convention on the Rights of Persons with Disabilities – Global and Local Views’, that was organized on 5 March 2009 by the Permanent Mission of Finland to the United Nations in New York. The seminar was made possible by the funding from the Human Rights Policy Unit of the Finnish Ministry for Foreign Affairs, to which we are thankful to.

The object of the seminar was to provide a space for discussion for people that have an interest in the implications of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). Especially, the seminar concentrated on the dimensions of development, the focus of which was supported by the participation of a delegate from Uganda, Mr. Edson Ngirabakunzi and the Ambassador Ruhakana Rugunda from the Permanent Mission of Uganda to the United Nations. The academic affiliates, Mr. Michael Perlin (Director of the International Mental Disability Law Reform Project and the Director of the Online Mental Disability Law Program; New York Law School) and Mr. Michael Stein (Executive Director, Harvard Law School Project on Disability; Visiting Professor, Harvard Law School; Cabell Research Professor, William & Mary Law School) contributed in the seminar as well as Ms. Akiko Ito (Chief of the Secretariat for the Convention on the Rights of Persons with Disabilities).

The seminar revealed that countries were at different levels of implementing the convention. Individual countries appeared to be using unique approaches to ensure the UN CRPD is domesticated and implemented. Home grown approaches appeared to be at centre stage than following a particular design or approach. It was notable that disability mainstreaming was considered fundamental in all organs of the United Nations.

The seminar organized at the Permanent Mission of Finland to the United Nations in New York was a good kick-off for the enhancement of realization of human rights of persons with disabilities. After the adoption and coming into force of UN CRPD there has been a wide variety of actions and initiatives relating to the topic.

To our project, the seminar was a very good occasion to network with different stakeholders and to get precious input for our research undertakings!

We will get back to the blog with some substantial topics that were raised during the seminar !

Posting by an Ugandan Friend: Christine Lule

2009-03-26T13:32:00.007+02:00

<-- Christine is the board member of UNAD as the women' representative and the chairperson of the Deaf Women's Association which will be registered soon.

I was born in a remote district in Uganda about 138 km from Kampala the capital of Uganda where the stable food is green banana commonly know as “Matooke” and coffee as a cash crop.

I am born to Mr. Eliphaz Lule and Mrs. Gertrude Lule. My father doubled as a self employed business man and a peasant farmer while my mother was a traditional African house wife. I am known as the first born because the actually first born died shortly after birth. My parents had 11 children but only eight survived childhood, of the eight 3 are boys the rest girls.

I was born hearing and enjoyed my childhood greatly because my parents were fond of their children. At the age of 8, I suddenly fell ill with severe vomiting; I then became unconscious and was rushed to a hospital. The doctors discovered that I had eaten poison. After two days (I was told) I gained my conscious but could hear nothing. I had lost my sense of hearing. Imagine what a disappointment I received when on checking the doctor confirmed that am now permanently deaf. I was in hospital for four months i.e. August – December. I was almost handicapped by the illness because I could either walk on my own or feed myself. Everything was done by my mother or her sister who assisted her because she (mother) had a baby of 6months. Well, although I was deaf I was happy that the devil had added more misery to his list of defeat.

On discharge we returned home but I no longer shared the jokes or the happiness with my siblings or friends. It took me a long time before I was completely healed. When I was fit I returned to school. To my surprise fellow student started mocking me by holding their ears ( indicating that am now deaf ) and laughed at me that I lost my cool and at times I resorted to fighting them or cried a lot. It was disheartening, to see the pupils I played with laughed with mocking me. To make matters worse my mother’s love began to fade. She was less interested in me that I wished I had died. It was Father who came to my rescue; he comforted me and told me deafness in not the end of the road.

I hated home and started to move with my father. He took me to Uganda School for the Deaf, where a new chapter of life awaited me. At first the Deaf children resented me because I could talk. They thought I hear and only pretending (not to hear). When I mastered sign language I was transformed. I studied hard and finished my study to the school. The Headteacher transferred me to a hearing school to continue my education to a higher standard because that time there was only one deaf school in Uganda and its standard was low.

I completed my studies in “0” level, and then took up CBR (Community-based rehabilitation) course and Sign language courses where I got certificates. I could not continue because in those days people despised the deaf yet had no money to go for abroad for further studies. I have accepted myself as deaf and do not look back. I first worked with World Opportunity International as administrator then with Uganda National Association of the Deaf as a sign language Instructor, and again as a Field officer under the same organisation but with the support of OXFAM before I joined Action on Disability and Development as a program coordinator (Deaf programme).

During my work I have experienced working with the most marginalized groups, deaf people without sign language skill and the poorest of the poor. I do enjoy working with them because I assist the uplifting of their standard of living and sensitize the parents and the community that deafness does not mean inability. It is the community we live in that disables us because they always refer to us as “kasiru” literally translated as “stupid.” We are not stupid. The problem is communication differences, i.e. we use sign language and the community use spoken language. Some have embraced sign language and made communication easy. Others have become our interpreters. Yet there are those who are hard to change. One cannot change the world in a short time. We hope in future we will have a positive, well developed country.

Christine Lule

joylule16@yahoo.com

------------------------------

Dear Ugandan disability activists,

If you are also interested in posting your life/organisational stories, please let me know.

Thank you, Hisayo

The World Federation of the Deaf Open Door Event

2009-03-16T09:50:00.022+02:00

By Hisayo Katsui

On 13th March, the World Federation of the Deaf (WFD) had an afternoon event to celebrate/announce the official registration of the association to the Finnish Registry. The following information is what I heard during the presentations of the current president, Markku Jokinen, and the previous president, Liisa Kauppinen (in the picture).

WFD is the umbrella organisation for the organisations of Deaf persons (when they stress their identity as a linguistic minority, they call themselves "Deaf" with big "d.") It was established in Italy in 1951 and currently has 130 member countries, of which 84 are Southern countries. The WFD has been advocating the human rights, particularly their rights for sign language, for the estimated 60 million Deaf persons around the world.

Markku also presented the findings of the new report of the WFD, "Deaf People and Human Rights," by Hilde Haualand and Colin Allen published in January 2009. It's the biggest study on the human rights of Deaf people covering the statutory services of 93 countries. They are almost all Southern countries, as the report did not focus on neither Europe nor North America. The main report is based on the findings of seven regional reports, that are also available on the WFD website (www.wfdeaf.org/projects.html).

The main report is, in my opinion, somewhat superficial, as findings from 93 countries were summarised. As the researchers themselves admit in the end of the report, the main weakness of the report is lack of analysis on the quality and accessibility of the services. For instance, the report mentions that there are this and that number of interpreters, or some TV programmes have simultaneous sign language interpretation. But are they accessible? Do they have TV and electricity at home??? When I think of Ugandan people, I had to ask these questions all the time. More qualitative data is found in the regional reports instead, which I personally enjoyed more for understanding Ugandan situation. This, however, is a very important report that covered so many countries to understand the discriminatory trend in all countries in many ways. It is worth reading!

The event was informative and interesting. Thank you for the organiser of the event!

Posting by an Ugandan Friend: Aggrey Olweny

2009-03-09T09:27:00.012+02:00

<--Aggrey is in the middle counting the votes.

I am Aggrey Olweny. We first met during the General Assembly of UNAD and subsequently the NUDIPU G.A. At UNAD, I was a polling assistant if you remember a team from Action on Disability and Development Uganda(ADD), I was the youngest with physical disability. At the moment I am working with Action for Youth with Disabilities Uganda, A national umbrella organisation of all youth with Disabilities in Uganda. This organisation was formed in 2008 with the aim of advocating for the rights of Youth with Disabilities. You recall that from the many legally registered Disabled people's organisations in Uganda, none of them has a specific focus on youth with Disabilities yet the youth have unique and specialised needs that can best be addressed by themselves. This is why this organisation was formed. We are looking for partners both at National, Regional and Global levels. We are also looking for funders who can fund our projects and forwarding our profile to be included in your write up. This will enable us get access to many potential partners across the globe.

Aggrey Olweny (aggreykenny@yahoo.com)
Ag. Executive Director.
Action for Youth with Disabilities Uganda.
Kampala

----------------------------------

Dear Ugandan disability activists,
If you are also interested in posting your life and organisational stories, please write to me.
Hisayo

"Disability and Poverty in Uganda" Report Published by the Ugandan Ministry of Finance, Planning and Economic Development

2009-03-06T15:39:00.005+02:00

By Hisayo Katsui

The Ugandan Government has published a very interesting report entitled "Disability and Poverty in Uganda: Progress and Challenges in PEAP Implementation 1997-2007." (PEAP stands for poverty eradication action plan and corresponds with poverty reduction strategy papers in other countries.)

This is a big achievement that the key Ministry has paid attention to disability to this extent and published the report for the future planning and implementation of its PEAP. Hopefully, these report findings will facilitate the mainstreaming of persons with disabilities in all development activities.

My friend in Uganda told me that the significance of this report is the fact that the group of researchers included two persons with disabilities (one female and one male) who were recommended by NUDIPU, the Ugandan umbrella DPO. Another positive implication, he told me, is the fact that "Gender, Family Life and Culture" is an independent chapter in the report in the male-dominant society. They are indeed very important achievements.

Having read the report, I think that the report remains realistically critical to the situation of persons with disabilities, even though this is a government report. I think this is an important fact that such an open criticism is tolerated and welcomed. Another point is that its coverate of variety of impairments, not only physical, hearing and visual impairments, but also other "new ones". The report is full of life stories of persons with disabilities from 16 studied sites all over the country, which highlight and support the arguments. They are very convincing!

Some negative observation is made on the language use such as disability as tragedy and deaf persons as "dumb". Also there were too many typos, which are regretted. I would have also liked to see a concluding chapter with policy implications based on all the findings, though an independent chapter exists on the theme of policy.

In the executive summary, the report states, "the issues raised by persons with disability need to be taken into consideration so that communities all over Uganda become supportive environment and not hostile environments to persons with disabilities (p.x)." This report surely facilitates the realistic understanding of disability in Uganda.

If you want to get hold of this report, please write to me.

Edson and Jukka in New York

2009-03-05T14:20:00.004+02:00

Today, Edson and Jukka are in New York for the seminar, "United Nations Convention on the Rights of Persons with Disabilities: Global and Local Views" hosted by the Finnish Ministry for Foreign Affairs. Representatives from both Ugandan and Finnish Permanent Mission to the UN are invited together with the keynote speekers, Michael Stein and Michael Perlin. This is a fruit of our project! More precisely, it is Jukka who mobilised many essential things for this seminar to come true. We shall hear their travel report when they are back.

New Publications

2009-02-27T12:17:00.010+02:00

Katsui, H. (2009) “Negotiating the Human Rights-Based Approach and the Charity-Based Approach in Development Cooperation Activities: Experiences of Deaf Women in Uganda.” In T. Veintie & P.Virtanen (eds.) Local and Global Encounters: Norms, Identities and Representations in Formation. Renvall Institute Publications 25, Helsinki. P.9-28.

Hakkarainen, M. & Katsui, H. (2009) “‘Partnership’ between Northern NGOs and Vietnamese Counterpart Organisations“In T. Veintie & P. Virtanen (eds.) Local and Global Encounters: Norms, Identities and Representations in Formation. Renvall Institute Publiations 25, Helsinki. P.117-136.

If you are interested in reading other articles included in this book, you can visit http://www.sylff.org/2009/03/11/1886/ and download them for free. For those who are visually impaired, I am happy to send you word files. Please write to me.

Development Conference at Helsinki

2009-02-25T10:16:00.003+02:00

By Hisayo Katsui

The Finnish Society for Development Research Conference: Knowledge, Development and Academic Partnerships was held at Helsinki University on 12-14.2. It was attended by 150 people, with my rough calculation. 40 papers were presented. This annual conference has been supported by many volunteer students of Development Studies, which is the most competitive discipline to enter in the Social Science Faculty at Helsinki University. I would like to thank the organisers’ and the volunteers' great contribution to this conference.

One of the keynote speakers was Professor Tania Murray Li of Toronto University. She criticized the development interventions for simplifying the complex phenomenon of development without understanding history, for instance, that she is specialised in. Development interventions select certain target with certain methods to the context, she states. She claimed that academics can "step back" and investigate the interventions. Thereby, we can take comprehensive view about the phenomenon, and offer good analysis for the development agencies.

I think it is over-romanticising to argue the role of researchers in that way because we are next to development agencies: we also select certain context to research with certain viewpoint, which is hardly objective and comprehensive as she claimed. On the contrary, I think researchers are very subjective and use our power in creating knowledge which is highly influenced by our thinking, believes and/or knowledge.

In the workshop of “Knowledge and Power,” I presented a paper, "Is participatory research approach a burden for the researched people?" because I wanted to articulate the power that the researchers have and how we exploit it or end up exploiting it under the circumstance where the power gap between the researcher and the researched people is huge. After a few years since my PhD thesis was published, I reflected on my research methodology then and learned a lot (Katsui & Koistinen, 2008). Still I cannot overcome so many challenges to alleviate the power gap with the researched people (whom I would like to call "the research participants" in theory but cannot in practice because they remain mostly as "the researched people").

In this four-year-research-project, we still have two more years to develop our participatory research approach. To begin with, we start placing writings of Ugandan persons with disabilities on their life stories in this website.

The conference website is: http://www.kehitystutkimus.fi/index.php?option=com_content&view=section&layout=blog&id=7&Itemid=66

Curtain of Hope Raised as Uganda Ratified CRPD

2009-01-26T12:30:00.001+02:00

By Edson Ngirabakunzi

It was in the month of May 2008 that I trekked between Uganda and Nairobi; Kenya to apply for Visa that would finally enable me land in Helsinki the capital of Finland. Here I was in a country (Kenya) that had been engulfed post election in human rights violations where so many had been denied the right to life a precursor to enjoyment of other rights and fundamental freedoms. I had to travel because in Uganda we do not have a consulate or an Embassy of Finland. I had fundamental choice to make either to take 50 minutes fright by airbus to Nairobi or several hundreds of miles by road. I chose the former with support because of partly my sponsor for the conference (NUDIPU) as an advocacy organization championing the rights of PWDs had ardent interest and as human rights activist had serious attachment I had put on the conference grounded in its value added theme. But more importantly human rights of the vulnerable people; persons with disabilities to be precise.

Finally I am at the Finnish Embassy where I take few minutes and the officer at the front desk asks for my relevant documents. In few minutes am done only to wait briefly for next officer who inquires about a few of clarity and purpose of travel which I ably do. Again as a contrast, here I saw human rights tenets of respect and dignity being practiced. Theme was as sharp and capturing in outlook as it also turned out during presentations by eminent scholars and academicians. Throughout the conference here, I benefited a lot from the wealth of knowledge and experiences shared during all the days of the conference. But at the same time kept wondering how soon Uganda would ratify the CRPD. Indeed from the onset there was value addition in having the CRPD especially in the lives of PWDs globally especially then that other conventions had not recognised disability among discrimination grounds.

Finally the CRPD has been ratified by Government of Uganda exactly five months after my Finnish CRPD Value Added Conference. By the time of this conference, Finland had not yet ratified the CRPD but strong commitment could be seen from the Minister of foreign Affairs remarks at the Conference. In Uganda, the ratification has been received with enthusiasm and applause from the disability fraternity and PWDs in general and government officials. Already calls for domestication of the CRPD are high among DPOs and among the disability politicians. It is hoped that the Convention is going to have value addition in the lives PWDs rural and urban.
PWDs feel that the CRPD will supplement the existing legislations to deliver the enjoyment of their rights. This was self evident in the joyous mood and speeches made on 24th October 2008 to mark and celebrate the ratification of the convention. Indeed, as the State Minister for Elderly and Disability Affairs amplified that Uganda undertakes to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. He expounded further that this was another important historical achievement as we address the rights of PWDs in the country. He concluded that the convention is a promise to people with disabilities, their families and for a society that seeks equality for all (New vision 30th October 2008). It is clear from the onset that the CRPD has political will an ingredient that will make it add value among the 2.5 million PWDs in Uganda. Internationally, the former UN Secretary had earlier called it “a historic achievement for the 650 million people with disabilities around the world”. It is in this light that I have made mild analysis on the CRPD role in guaranteeing full enjoyment of PWDs rights.

From the onset, Individual PWDs have added their voice on the usefulness of the CRPD. One PWD who has been looking for jobs to no avail had this to say “if you go to look for a job people think you are mad because you don’t walk like them; am lame but I can work. We now have hope that we shall be treated equally. I am sure the government will force many offices to employ us”. This is a clear testimony of how individuals PWDs have understood CRPD to deliver and give them respect and dignity.

Where as it is construed as historical achievement for over 650 million persons with disabilities, the implementation of CRPD will require a lot of measures and both legislative and administrative depending on the level of countries commitment and resources as it has highlighted. I have strong conviction that disability needs and concerns are and have been at the periphery of development due to numerous reasons not absence of policies and laws. Evidently, in Uganda, there are a number of existing laws and policies but the problem has been non implementation to the letter. Similarly, the CRPD will sharply need strategies to ensure it is implemented to the letter. Non implementation of such laws and policies in Uganda has been partly due to lack of commitment on the part of planners and implementers, the laws have had inherent gaps like not providing for sanctions. PWDs themselves have been ignorant of their rights in the grass root communities and coupled with inadequate funding from government.
Therefore to ensure that CRPD is domesticated and implemented, in addition to available pieces of legislations, it will require popularization of CRPD among the members of general public like judges, magistrates and officers of the courts who are part of the duty holders. I have deliberately targeted the judicial officers among others because in my experience working with DPOs, it has been found that these judicial officers have not been aware of disability issues and needs and this had denied part of 2.5 million Ugandans enjoyment of their rights. This is because where rights violation cases have featured it was abundantly clear that they were not at par with disability issues and laws. Planners and implementers too are also key ingredients of ensuring that CRPD is translated into practical outcomes towards PWDs. It is also important that several approaches are used to ensure that disability rights are respected and implemented in Uganda as provided for in the CRPD. Mainstreaming of disability needs and rights in all sectors of government is very fundamental at the design stage and not to consider disability needs as ‘fit in’ issues. Therefore, this will require innovative tactic of doing it. This will require use of disability activists at various levels of planning and budgeting with requisite capacity. This is suggested because at grass root where planning and budgeting process start, PWDs lack the necessary skill, knowledge to plan and budget judiciously for their basic rights. It is because of this that there have been instances where disability issues have not sailed through up to the level of budget allocation across the sectors. Therefore, reasonable accommodation in budgeting for disability is very critical here.

Monitoring and reporting about the progress should be strengthened. It is not uncommon that reporting on progress of the various human instruments takes several years. This specific CRPD may not be an exception. Enforcement mechanism of such instruments in individual states is at times weak. The implication of this is that it becomes extremely difficult to establish how PWDs rights are being respected and fulfilled. Therefore, PWDs both in the south and in the North should have home grown innovations of training PWDs on how to monitor and report about the Convention. Best practices can be learnt from each other. Such innovative approaches should empower even the un educated those unable to read and write to be able to know their rights and report about them in user friendly manner.

Otherwise the momentum gained at the ratification of the Convention may get lost. The hope and enthusiasm generated must be seen in practical terms with proper plan of action of how the government intends to domesticate and implement its provisions. Therefore all stakeholders, government, international cooperation and partners, civil society and DPOS must work hand in hand and even harder to ensure that the curtains of hoped raised do not close before our own eyes and those of over 650 million PWDs on the globe. Indeed and in the meantime it is a historic achievement in the eyes of Ugandans.

Thank you for the mails!

2009-01-26T11:34:00.002+02:00

By Hisayo Katsui

I have received many e-mails from my Ugandan friends after my travel report was uploaded to this site. Many encouraged me and my work, and some said they are also encouraged by my work. I'm very happy to learn to know that!

Barrier-free Seminar at Helsinki University

2009-01-14T10:06:00.003+02:00

By Hisayo Katsui

Yesterday, I attended a seminar on barrier-free environment that was targeted to lecturers and teachers at Helsinki University, Finland. The aim of the seminar was to provide them with practical information and working models to support different needs of students with disabilities studying in the University. Around 50 persons attended the seminar. Some presenters were persons with disabilities themselves, while others were those staffs of the University who are promoting barrier-free environment. Different needs of persons with hearing impairment, dyslexia, autism and Asperger syndrome, visual impairment among others were introduced.

Lecturers here are said not to know the challenges of students with disabilities and also possibilities available in the University that they can provide. It was emphasised that the followings are important: 1) individually tailored attention and solution, 2) prevention and 3) interaction. The last one means that when lecturers do not know how to support some students with disabilities, then they should ask the students. However, flexibility and adjustment are advised to be made only on the basis of medical diagnose documents, as otherwise lecturers cannot handle different individual needs. Once again, resources are the practical challenges for human rights of students with disabilities.

Challenges of students with disabilities are similar both in Finland and Uganda in many senses. (Of course, I do not mean to totally undermine the differences in social policy, accessibility to medical services, economic power, negative attitude etc.) I mean, good will without resources is not enough. That's why we want to focus on practical implications to operationalise human rights of persons with disabilities.

After the seminar, I asked one of the presenters about the situation of foreign students with disabilities in the University. Every year, several foreign students with disabilities from EU countries come to our University as exchange students. The services available to Finnish students are not available to foreign students, especially to those who come from outside of EU countries. They have to pay their services, such as sign language interpreters or assistants, by themselves or arrange their sending institutions or countries to pay for them. That is, foreign students with disabilities are not encouraged to come to our University. Resources, resources and resources! Why resources are not available to realise human rights of persons with disabilities?

Hisayo in Uganda

2009-01-07T13:11:00.011+02:00

By Hisayo Katsui

In December 2008, I had the chance to visit Uganda for the second time with the travel scholarship of Nordic Africa Institute.

This time, my main aims were to participate in the event for the International Day of Persons with Disability (IDD) on 3.12, the general assembly of Uganda National Association of the Deaf (UNAD), the general assembly of National Union of Disabled Persons of Uganda (NUDIPU), and to interview women with disabilities including deaf women in villages and DPO staffs dealing with gender project. In this short travel report, I shall present different dimensions of human rights realisation in practice.

IDD event is held annually, while general assemblies in every five years. Both events were realised in the name of human rights, and yet looked very different in practice. IDD events are held in different regions every year, and this year was in the West at Mbarara which is the hometown of the current President. We first marched through the downtown with banners. Then, we gathered in a field to celebrate the Day with performances of different groups of persons and children with disabilities with the presence of the honourable guests such as the Minister of Gender, Labour and Social Protection. Various representatives of persons with disabilities made speeches. Other than deaf people who needed to be near the sign language interpreters, people sat according to the regions where they were from. The differences of impairments were not visible. Harmony dominated for promoting the same cause of human rights.

In the general assembly of NUDIPU, the umbrella organisation of DPOs in Uganda, different issues specifically related to different impairments, sex and age were all raised and negotiated particularly in the form of election of various positions in the board of the organisation. Different groups of people constructed alliances to strategise their election campaign activities. Lots of money was also involved during this campaign. Many undemocratic actions took place both inside and outside of the official venue. (I am not yet clear how I can write about these sensitive and yet important operationalisation practices of human rights in this case of the general assembly. I will figure out the way later and articulate these actions more in other writings.) Operationalising human rights of persons with disabilities is not simple.

After participating in the aforementioned official events for the representatives of persons with disabilities from all over the country of Uganda, I decided to visit villages to meet deaf women on the ground. I visited three deaf women at their homes. They were not informed about those international and national events. They were just busy taking care of daily household chores and digging their gardens. They had never been to school and acquired any mother tongue. One of the deaf women’s mothers called her “kasiru (stupid)” all the time. (My assistant/interpreter, Benson, spontaneously intervened and explained to the mother, “It is not right to call her ‘kasiru’ because it is our problem that we do not know her language. If we know, we can understand each other.”). This extremely limited opportunity of deaf women on the ground explained one exercise of election during the general assembly of UNAD, the deaf association. Unlike the general assembly of NUDIPU where voters wrote candidates’ names to the ballot papers, elections of UNAD were held in another way: Each candidate was put a piece of paper with “I”, “II” or “III” on her/his back so that voters can draw those strokes instead of full names. This was due to high illiteracy rate of the delegates who represent different regions of the country. This speaks the profound discrimination against deaf people, especially deaf women. (Deaf women decided to establish their own association in 2009.)

Right to vote and to decide own representatives is important. But preliminary findings of this trip left me with many operational challenges for exercising the right.

Acknowledgement
Last but not least, I would like to express my gratitude to many people who made this trip come true. First of all, I would like to thank Prossy, woman with physical impairment, who once again accommodated me to her house. We talked, talked and talked about so many things everyday. I am very happy to have learned to know her. I would also like to thank UNAD and NUDIPU that invited me to their general assemblies. The project team mate, Edson, and our project partners in Makerere University, Rukooko and Wamala, were also very supportive. I appreciate sign language interpreters’ and drivers’ works who wake up earlier than others and work longer hours than anybody else. I spent so many days and nights with many persons with disabilities due to the nature of those events. I am happy to have had the opportunity. I miss them very much. NUWODU and DPOD also helped me to collect important information on the gender project. Lastly, my family back in Finland, Jerri and Io, with my parents-in-law helped me and literally suffered from my absence, once again. I am still struggling with finding a good enough balance between this career and my role in the family. I stop this travel report by mentioning my sincere love to my family.

One more article in 2008

2009-01-07T09:40:00.001+02:00

Katsui, H. & Koistinen, M. (2008) "The participatory research approach in non-Western countries: practical experiences from Central Asia and Zambia" Disability & Society Volume 23 Issue 7. pages 747 - 757.

Two More Publications

2008-11-24T15:28:00.003+02:00

Two more publications came out. The "Mainstreaming-" report is dedicated to late Taija Heinonen.

Katsui, H. (2008) Downside of the Human Rights-Based Approach to Disability in Development. Working Paper Series of IDS at Helsinki University 2/2008.
Katsui, H. (2008) Mainstreaming Disability Issues in Japanese and Finnish Development Policies and Practices. Working Paper Series of IDS at Helsinki University 1/2008.

Hisayo in Kazakhstan and Kyrgyzstan

2008-11-14T12:14:00.004+02:00

By Hisayo Katsui

(-> Taken in front of the Ministry of Labour and Social Development in Kyrgyzstan with a Kyrgyz disability activist, Gulmira Kazakunova in her wheelchair, and my assistant Farkhat Yussupjanov who has visual impairment.)

Our team members of this project have been playing many roles, not only as researchers working on Ugandan disability issues. I’m not an exception. Last week, I had the opportunity to visit Central Asian countries for evaluating a development cooperation project between Finnish and Central Asian DPOs. (I would like to thank all the people who have supported my work!!) My last visit to Central Asia was five years ago for my PhD study. Uganda is somewhat known in the disability sphere, while Central Asia could be the other extreme. In this article, I would like to discuss fundamental failure of a human rights-based approach taking place in Central Asia. “Central Asia” refers to Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan and Uzbekistan, in this specific context.

These countries are still somewhat “difficult countries” for donors in many senses. Particularly Turkmenistan and Uzbekistan widely restrict non-governmental associational activities especially when they use “human rights” as a key concept. That is, “nothing about us, without us” cannot be fully implemented when DPO activities are restricted. Although Turkmenistan ratified the Convention as the first country in Central Asia, that has nothing to do with disability movement because it is non-existent. The development cooperation project that I was commissioned to evaluate included both Turkmenistan and Uzbekistan, but its impacts to these countries remained extremely limited due to the severe political environment for any associational activities in general. Similar result was observed in my PhD study.

The Convention has the article of international cooperation (Article 32), which highlights international development cooperation to be inclusive of persons with disabilities. Non-discrimination and equality are important human rights principles. However, in reality, limited resources are allocated to persons with disabilities in “easier countries” earlier, if not first. Even within the countries, local power structure plays a role. That is to say, priority making is extremely difficult in reality. The most marginalised groups of people among persons with disabilities might be the last ones in the queue.

I will study more on this marginalisation in the on-going research project on Uganda by paying special attention to deaf women.

If you are interested in knowing more about disability in Central Asia, please take a look at my article published this year, or more in detail in my PhD thesis:

Katsui, H. (2008) “Human Rights-Based Approach and DPOs in Central Asia.” Journal of Disability and International Cooperation Vol.2/2008. P.21-26.

Katsui, H. (2005) Towards Equality ~Creation of the Disability Movement in Central Asia~. Helsinki University Press. Helsinki.

Our Article Was Published

2008-11-13T15:24:00.001+02:00

Jukka's and Hisayo's co-authored article on our project was published in the Scandinavial Journal of Disability Research. If you are interested, please take a look at it!

Katsui, H. & Kumpuvuori, J. (2008) Human Rights-Based Approach to Disability in Development in Uganda: A Way to Fill the Gap between Political and Social Spaces? Scandinavian Journal of Disability Research. Volume 10 Issue 4. P.227-236.

In Memory of Taija Heinonen

2008-10-23T10:34:00.000+03:00

By Hisayo Katsui

I heard the news yesterday that my friend, Taija Heinonen (Executive Director of Abilis Foundation), passed away during her trip in Tanzania. She left me many things and I would like to share some of those with you.

I learned to know her when I started my PhD study at Helsinki University in 2000. She always took her precious time for me whenever I wanted to meet her and interview her. She appreciated my study and encouraged me to continue it. When I was completing my PhD, I was concerned with my future as a researcher of disability and development in Finland. It is not one of the major themes that could attract much attention of research funders. In addition, I am a foreigner here. She then asked me to conduct an evaluation work for Abilis Foundation, where I learned many fundamental issues around the theme of disability and development. That experience has definitely led me to this Ugandan project.

Taija also invited me to become her personal assistant. By the way, her personal assistants were mostly those from Southern countries living in Finland. She was willing to employ those who have difficulty in finding a job in Finland. She is well known for her works in Southern countries, but she was making changes also in Finland starting from her personal level. I respect her so much in that, too.

When I visited Uganda last time, people remembered Taija very much because she travelled Uganda with her husband. They saw Taija in her wheelchair cared and loved by her husband. Her visit encouraged many Ugandan women with disabilities to believe in their future. I’m sure many people in different countries were encouraged in a similar way.

Taija was modest and strong. Thank you Taija.

Experience of a Research Assistant in Uganda

2008-10-01T08:59:00.003+03:00

Jukka visited Uganda on September 2008. A report of this travel will follow soon. Meanwhile, we share with the blog readers the experience of Jukka's research assistant Kaddu Zachary, who did a great job during Jukka's visit and most likely we will be cooperating with him in the future too. Thank you Kaddu! Enjoy Kaddu's writing...

Jukka and Kaddu in the Parliament House in Kampala -->

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Personal Perspectives on Disability – Uganda

Written by Kaddu Zachary

Persons with Disabilities (PWDs) in Uganda have always struggled to integrate into societies that tend to exclude the disabled or demand conformity. As the number of PWDs surpasses to over two million countrywide, these struggles cannot be ignored.

The Government of Uganda attaches considerable importance to the situation of persons with disabilities in its policies and programmes. The Constitution of the Republic of Uganda 1995 makes specific provisions for their rights and guarantees the means to prevent discrimination and to promote integration. Based on the affirmative-action clause of the 1995 Constitution, Uganda’s legislators have passed several acts to increase the representation of persons with disabilities in the public sphere. As a result, there were more than 2,000 persons with disabilities among elected officials, ranging from the parish to the district level in 2002.

In Uganda, the estimated number of people with disabilities (PWDs) range between 7% and 10% that is ranging between 1, 540,000 and 2,200,000 people of the total population (UNHS, 2005/06). Empirical studies assert that disability in Uganda has exposed persons with disabilities (PWDs) to limited livelihood opportunities, which consequently have led them to a state of poverty and vulnerability. According to the National Disability Policy (2006), PWDs have became more vulnerable by virtue of their impairment and negative societal attitudes arising from fear, ignorance and lack of awareness to participate in development issues. In this context, the UNHS (2005/06:130) reports that for PWDs to access mainstream development programmes has remained a challenge, resulting from negative attitudes, which often lead to social exclusion and marginalization.

Experience has taught me a lot. Being a PWD who has grown in a traumatizing situation were the community looks at you objectively, I have learnt that the road to a happy life is struggling the hard way to achieve what you want in life. As a disabled person, the fundamental issues we PWDs need to understand are; respecting our selves, self-worth, gaining self-confidence and above all ‘learning to accept who we are.’ We PWDs need to accept ourselves and the situations we go through, this will change the society’s perception of who we are thus became accepted by others .

On the part of development in disability, this may not be a one, two or five year plan to achieve rather a step by step issue. Drawing from one writer that ‘…. No need for hurry in Africa’, there should be a systematic way things should be done to benefit all PWDs or else a few will benefit and the majority will not share on such benefits arising out of the efforts made. Human rights of PWDs should be put on the forefront and people, governments and any one who impends and hinders the attainment of them should be held accountable and responsible thus justice apprehended.

I believe with the enforcement of disability legislations and holding our governments or people responsible for jeopardizing our human rights, this world will became a friendly place for all PWDs.

My experience with Jukka in Uganda

I wish to extend my sincere gratitude to Jukka for selecting me as his Research Assistant during his visit in September 2008 to Uganda. Well it was my grate pleasure to host him here in Uganda and I was able to learn a lot from him. As we shared experiences about our lives, I took note that it is always out of struggle, commitment and determination to hold on even in times when things get worse that we achieve our goals in life. During this period as we visited a number of Disabled people and their organisation, I came to learn that we the disabled people ought to work together like termites do when building there home in order to achieve our goals. If we continue to work in isolation, then we shall not be heard and the decision-makers will always make decisions for us. It’s the right time if we started participating and demand for those human rights that we ought to have.

It was great having you – Jukka here in Uganda and our friendship as well as information sharing shall keep us together. I hope and pray that together with others became the leading ‘disability Activists’ with a vision of ensuring that ‘even for the most unheard or marginalized disabled person in the world is granted his/her human rights though by state, political or opinion leaders, and our sisters and brothers the non-disabled.’

Mr. Kaddu Zachary

Bachelor of Social Work and Social Administration (Candidate)

Faculty of Social Science,

Makerere University, Kampala - Uganda

Email: kadduzachary (@) yahoo.com

Jukka and Hisayo in the 4th Biennial Disability Studies Conference at Lancaster University, 2-4 September 2008

2008-09-05T13:36:00.011+03:00

By Hisayo Katsui

In UK, the disability movement and Disability Studies as an academic discipline are inseparable. Many scholars are both academics and activists. It was very interesting for me to observe this strong activism in the conference which was organised by the Centre for Disability Research, Lancaster University. It was attended by 200 participants from more than 20 countries. I’d like to thank the organisers for their works for this conference to come true.

Arguments throughout the conference were centred around reaffirmation of the “social model” of disability and strong will to maintain the model in the future of Disability Studies in UK. This was a bit of a surprise to me, though I took my Master’s Degree in Disability Studies in England back in 1999. Now that I am based in Finland where human rights talk is perhaps stronger than the “social model”, I felt something is missing. I asked Professor Peter Beresford, who was one of the plenary speakers, how British Disability Studies deal with human rights. His answer was like this: the “social model” is touching human rights. As “social model” has been contested, some started to use human rights terminology. He thus implied that there are not so many who use human rights-based approach to disability in UK.

I also noticed a lot of accusation of post-modernistic approach. Some even named them as “crazy post-modernists” which was not questioned but welcomed. The latest book of Tom Shakespeare, one of the post-modernists, “Disability Rights and Wrongs” was inspiring for me. In this sense, I felt a distance to the mainstream participants. This distance is actually what I felt more strongly when I was taking my Master’s Degree. In the late 1990s, being disabled person was so integral part of both the disability movement and the Disability Studies in UK, which made me feel excluded. In his speech, Professor Colin Barnes, who is a social modelist, acknowledged both disabled and non-disabled academics’ achievements in this discipline. Thus, there has been a change over time. But I got the impression that this specific conference was attended mainly by conventional social modelists, if I could call them so. (Or they were the most vocal ones.) Having said that, I observed many participants with disabilities, which is not the case in Nordic disability conferences. I think it is important that Disability Studies as a discipline is accessible not only for (both disabled and non-disabled) academics but also for persons with disabilities.

Another experience I want to share is my quasi-personal assistant role. Jukka’s assistant cancelled her coming one day before, which gave me the opportunity to learn part of the regular responsibilities of personal assistant. It was a great learning experience for me. It heavily rained all three days (what else we should expect from English weather??), which made our days a bit more exciting (Please see the picture!).

Jukka had informed that he is a wheelchair user, but his accommodation was inaccessible for the first day “by accident” and he had to use the room. The conference organisers did not mean to discriminate Jukka with the first arrangement of the room. With Jukka, we discussed a lot about differences and similarities between direct and indirect discrimination. Does it matter or not, when you do not intend to discriminate persons with disabilities but the end result is discriminatory?

The conference has left many questions to elaborate further. I also met many interesting people, with some of whom we agreed to do some projects together in the near future. In many senses, it was a very interesting conference.

Conference website: http://www.lancs.ac.uk/fass/events/disabilityconference/

Disability Laws and the Interlocking Regulations in Uganda

2008-08-25T12:02:00.001+03:00

By Edson Ngirabakunzi

Uganda in line with its 1995 Constitutional obligation of respecting dignity and rights of PWDs enacted several disability friendly laws. This has been possible due to advocacy and policy influence initiatives of Disabled people’s organizations and their leaders. However, these laws have not been fully translated into practical outcomes towards disabled people. This has been partly due to absence of regulations to make them operational. Such laws geared towards promotion and protection of disability rights and needs of PWD in Uganda include, National Council on Disability Act 2003, the Disability Act of 2006 and the Equal Opportunities Commission Act 2006 and Local Government Act 1997.

Where as some of these laws have been in place for the last 5 years or so, there has been little positive impact of such laws in lives of PWDs. This has been partly due lack of enabling regulation to guide implementation among others. This was further echoed during the celebrations to maker the International Day of Disabled in 2007. The President, who was the guest of honour during the celebrations, noted it as an issue of concern too. He noted that there was need for a meeting with disability stakeholders to discuss and refine further on why such laws were no being implemented and remedy sought. Reasons earlier advanced for non implementation was that some technical people did not know how to manage and implement laws that had no guidance framework. This was later to be provided for in form of regulations. The other issues noted were lack of financial resources to ensure the laws were appropriately addressed.

Therefore, arising from the above, the line Ministry of Gender Labour and Social Development has developed regulations on National council on Disability Act and on Disability Act. These regulations are an important landmark in promoting disability rights in development process in Uganda. Where as the parent laws were providing general frame works on a number of disability issues like employment among other, the regulations have defined and refined them further to guide planning and implementation by the technical people at all levels of government. Already, the regulations have been discussed by the disability stakeholders to ensure that disability concerns are well anchored in the regulations. In line with our project, the regulations have provided critical benchmarks for promoting employment and employability of PWDs in Uganda. Once implemented will ensure adequate service delivery to PWDs and hence improved standard of living. Additionally, they are well anchored in the CRPD section 27 on right to work and employment.

It is important to recall these regulations are a recent development this year 2008, yet their parent laws were developed in 2003 and 2006 respectively. Nonetheless, this is a new development in as far as regulations on disability laws are concerned where the employment and employability of PWDs is elaborately expounded. In line with human rights approaches to development, the regulations have been particularly informative. Where as the Disability Act has been broad in as sense, the regulations have defined in detail what it takes to guarantee employment of PWDs. The regulations provide for the line ministry to employ a person responsible for employment placement for PWDs, prohibits the employer from using screening methods that discriminate qualified disabled employee, responsibility to employer to provide assistive services required by employee to execute his or her duties under employment contract thereof, it also provides mitigating measures where disability occurs in the course of employment such as redeployment in line of fitting employment and re-aligning the employment contract without break in the period of service. The regulations also provide for tax exemptions on modification costs to employers. This is in line with CRPD principle of reasonable accommodation. The regulation further provide for consultations with DPOs in and during the process of recruitment and job placement of PWDs by employers.

We are yet to celebrate improved employment situation of PWDs in Uganda. Number factors still negatively influence employment of PWDs, such issues as attitudinal challenges inherent in community value system and economic development imbalances that is skewed against vulnerable communities of the disabled people. Macro economic policies that would rekindle PWDs accessing employment in both formal and informal sector still slow in visibly recognizing poor rural PWDs. It is apparently also not clear in the new regulations how PWDs employed in the informal sector will be catered for.

CRPD Added Value ? - Seminar in Helsinki on 20-21 May 2008

2008-05-26T11:28:00.001+03:00

Martin and Edson finally meet -->

UN Convention on the Rights of Persons with Disabilities entered into force on 3^rd of May 2008, as the first UN human rights convention in the new millennium. The Center for Human Rights of Persons with Disabilities (VIKE) organized this seminar. The seminar focused on the added value of this Convention to the fight against discrimination of 650 million persons with disabilities. 200 people participated in the seminar from all over the world.

The keynote speaker was Professor Michael Stein, the Executive Director of the Harvard Project on Disability (Harvard Law School). He called this convention both human rights convention as well as development one. He discussed the issues around Article 32 (international cooperation) and attitude in two presentations respectively. His vivid examples from all over the world were very interesting. I also personally liked his non-confrontational but very logical argument. Also representatives with disabilities from the South presented their views, such as Ms. Yetnebersh Nigussie from ECDD (Ethiopian Center for Disability and Development), Mr. Ngin Saorath from CDPO (Cambodian Disabled People’s Organization) and Ms. Constance Hambwalula from ZNAPD (National Association of the Physically Disabled). Their representation was very important and could have given more space, if time allowed.

Our research team also contributed this seminar to a great extent: Edson came all the way from Uganda and activated the discussion, and others made presentations (Martin on added values from international lawyer’s perspective, Jukka on VIKE, and Hisayo on our research project). Particularly, Martin’s presentation focused on added values such as 1) process of making the Convention itself was a process of empowerment and a visibility project, 2) reasonable accommodation argument stipulated obligation to states (though watering down by the word, “reasonable”), 3) broaden the human rights agenda (not only state-individual relationships but also interpersonal relationships), 4) use of more concrete formulation (such as education and movement), 5) new structural elements (definition and general principles) and 6) procedual advances (domestic implementation, involvement of PWDs and regional organisations also as duty-bearers). The presentation Power Point files can be found in VIKE’s homepage soon: www.vike.fi

We met many interesting people to continue our discussion even outside of the seminar room! We are excited to continue our discussion for the implementation of the Convention in our world. Our warm thanks to the organiser of this seminar.

Ugandan Disability Movement: Political Achievements and Social Challenges of WWDs

2008-05-03T08:46:00.007+03:00

Shopkeeper with disability in the market area ->

Group picture taken in the internally displaced people’s camp at Gulu district -->

By Hisayo Katsui

I had the great opportunity to visit Uganda in January-February 2008 for my research work on human rights-based approach to development cooperation. My special focus is on the rights of women with disabilities (WWDs), particularly deaf women, in development cooperation activities of disabled people’s organisations (DPOs). In this article, I would like to summarise two aspects of disability movement in Uganda: political achievement and the reality of WWDs on the ground.

Uganda is famous for the development of disability movement in terms of its politics. The rights of disabled people are specifically stipulated already in the Constitution of 1995 as follows, “Persons with disabilities have a right to respect and human dignity and the State and society shall take appropriate measures to ensure that they realize their full mental and physical potential.” Concrete positive changes, for instance, have taken place in creating political space for disabled representatives. After the enactment of the Local Government Act of 1997, affirmative action has been introduced for the marginalized groups of people including women, disabled people, youth, workers and army. Since then, they are represented in Ugandan politics at all levels including Parliament. Uganda has the quota system for five Members of Parliament (MPs) who are representing people with disabilities (PWDs): Four MPs from four regions (Central, East, West, North) and one woman with disability. Their sign language interpreters and personal assistants are paid by the government. An interesting fact is that in the 2006 election, two former MPs representing PWDs stood for the mainstream positions outside of the quota framework and also passed through. Both of them are WWDs. Therefore, there are 7 MPs with disabilities in the Parliament at present. Moreover, 47,000 disabled councillors work in local government structure, of which half of them are WWDs. In 1998, the State Minister for the Elderly and Disability Affairs was created under the Ministry of Gender, Labour and Social Development. This Department vocally addresses the issues of disability though with resource constraint. In 2006, the National Disability Act was adopted which further stipulates the rights of PWDs in Uganda. In 2007, President Museveni joined the International Disability Day event and promised to meet with DPO representatives in 2008. The visibility of PWDs in the political space is outstanding achievement of the disability movement in Uganda. At this political level, it is not over-romanticising to mention that Ugandan disability movement has achieved a lot, although the introduction of the multiparty politics to some extent fragmented disability movement.

The affirmative action policy affected the lives of many. For instance, many students with disabilities enter into higher education institutions with this policy. They get extra points to the entrance examination markings and also get financial support during their study. When I called for candidates to become my research assistant, I was surprised to have received many applications from WWDs with high education background, which was not the case in my previous studies in other countries. Also many shopkeepers in a market area in Kamapala benefit, as they can keep their shops in one of the busiest spots, after the vigorous efforts of the disability councillor of Kampala district. I saw only few beggars with disabilities on the streets. In this way, many positive changes started to take place in the social space as well as in the political one.

However, my interviews also revealed not so rosy picture of WWDs on the ground. Many interviewees mentioned that sexual and/or physical abuse is a big problem for WWDs. One was stabbed by her step-mother and was saved by a church, while others say in a synchronised voice that they have “sex by chance, not by choice”. It was often the case that they are single mothers without husbands because they are stigmatised to be the official partners of WWDs. Official marriage is a dream for Ugandan WWDs, according to many interviewees. As a result, the HIV/AIDS epidemic hits very hardly on WWDs because the society believes that WWDs are asexual and thus are free from HIV/AIDS. There is a surprising statistics that 22% of the studied WWDs were raped in their first sexual encounter (Mulindwa, 2003:32). The same study points out the low usage of preventive measures against sexually transmitted diseases including HIV/AIDS. Too many WWDs cannot negotiate safe sex, which is a silent but great problem. However, it is not an exception for WWDs to live with dignity as both PWDs themselves and the society gradually started to change. I observed many PWDs including WWDs who live positive lives even on the ground.

There is a cynical way to look at this phenomenon of disparity: the government depoliticise disability by the easier solution of disability quota to the political space rather than providing universal rights to PWDs on the ground. I’m not sure about that because I did witness positive changes made in the social space by the political representatives, though some of their capacity is only evolving now. The interplay of the political achievement and social challenges is an interesting theme to elaborate further in the future research. DPOs are playing an important role in this because DPOs deeply collaborate with those political representatives for attaining their objectives.

NUWODU (National Union of Women with Disabilities of Uganda) was established in 1999 because the gender aspect had been overshadowed in the Ugandan disability movement. In 2008, it started a new two-year-project to promote gender aspect in the activities of the disability movement. Challenges are many even when the political representation has been achieved. For instance, many WWDs on the ground did not even know the word, “human rights” when the DPO is taking a human rights-based approach in its activities. Could the mainstreaming of gender aspect in disability movement positively affect the lives of WWDs on the ground? How to balance empowerment and mainstreaming activities for maximising the outcome? With those questions in mind, I am going to scrutinise this project.

Reference:

Mulindwa, I.N. (2003) Study on Reproductive Health and HIV/AIDS among Persons with Disabilities in Kampala, Katakwi and Rakai Districts: Knowledge, Attitudes and Practices. DWNRO. Kampala.

Ministry Madada and myself->

Hisayo in Uganda !

2008-03-10T06:18:00.003+02:00

By Hisayo Katsui:

I had the great opportunity to visit Uganda for about five weeks. I would like to make a small travel report about my stay.

Hisayo and Edson in front of the Makerere University -->

First of all, Ugandan disability activists use "Person with Disability (PWD)" rather than "disabled people" to put person first. Similarly, "Woman with Disability (WWD)" was preferred to "disabled woman". As I took my Master's Degree in England, I had followed the English terminology of "disabled people" to politicise the disability first before my visit to Uganda. However, now that I would like to study more about Uganda, I also start using PWD and WWD to respect their priority and thinking.

I tried to experience the lives of Ugandan PWDs, particularly those of WWD, by homestaying in one WWD's house and having another WWD as my research assistant. I cooked local food with the host family and moved around with public transportation means with my assistant. I could observe how people react to different situations to my assistant and listen to the stories of both of these WWDs, which enriched my insights towards disability very much.

As many of you might already know, the development of disability movement in Uganda has been so dynamic and interesting. On the one hand, I had the chance to meet the State Minister for the Elderly and Disability Affairs, Sulaiman Madada, and 6 (3 women and 3 men) Members of Parliament who are PWDs. On the other hand, I enjoyed meeting with deaf women and WWDs on the ground including those living in the internally displaced people's camps in the war torn areas in the Northern part of Uganda. Consequently, I could observe and understand the existence of some gaps among people at different levels. For instance, human rights-based approach is well incorporated in the constitution and laws, while WWDs on the ground did not even know the word, "Human Rights". That is, many preconditions for self-determination seemed to be missing particularly among those on the ground.

However, I could also observe many positive things both in the political space and social space. In the political space, it is famous that PWDs have political representation even at a village level. This has its own challenges, but this representation seems to have changed many things. Those disability councilors at local levels politically negotiate for the benefit of their constituencies of PWDs. For instance, PWDs were given good spots in the market area near the "New Park" (of public mini buses called "taxies") so that they could easily access the working place and also be visible for others to learn that PWDs can work. There were surprisingly few beggars on the streets. I saw many PWDs working but very few begging money. There could be many more PWDs hidden at their homes, too, as many told me so. However, superficial observation dipict different picture of PWDs in this country, particularly compared with Central Asian countries that I know from my PhD study.

When it comes to development cooperation activities, Denmark has been very active for a long time. Unlike other donor/Northern countries, Denmark tends to send development workers for a local organisation for more than one year. To my surprise, there are two PWDs from Denmark who has been there for more than ten years. They represent DPOD, former DSI. This modality seems to have both positive and negative effects according to my research participants/interviewees, which will be scrutinised further in my future writings. Almost all Ugandan DPOs depend on external fundings, which make them vulnerable to external change of trends and funding decisions.

Lastly let me use some space for briefly introducing two Ugandan people who also play important roles in our project.

Dr. Rukooko is the supervisor of Edson and our contact person at Makerere University.

Hisayo and Dr. Rukooko -->

Dr. Wamala is also our new contact person. We had several meetings during my stay and share many interests among us. We are organising a workshop on Human Rights-Based Approach and Disability in the beginnig of 2010. I am very happy to have such understanding partners.

Hisayo and Dr. Wamala -->

After my visit, I am even more excited about our research project! I hope that our findings would be useful and usable to the Ugandan disability stakeholders as well as many others.

Identity of Disabled People

2008-01-27T19:16:00.000+02:00

Identity of Disabled People: When do you want to be called “disabled people”?

Written by Hisayo Katsui

I am heading for Uganda in the end of January for one month to conduct my fieldworks especially on development cooperation activities. When preparing for the trip, I came across with a very important issue of disability identity that I should pay special attention to. In this article, therefore, I am trying to discuss this issue of identity.

Who are disabled people? The official definition of “disabled people” is diverse from country to country. They are usually based on medical diagnosis, on the basis of which people are entitled to certain services, devices, medications and so on. In Northern countries, the definition is increasingly diversifying as more new diagnosis are found and also because the population is aging. When it comes to Southern countries, the definition tends to be more “classic” ones which include often people with observable sensory or physical impairments. This is one way to look at the identity and possibly the easiest way for a researcher to approach “disabled people.”

For instance, in my last article in the newsletter (No.3/2007), I introduced some figures: “10-12% of the population is disabled people in the world and 80% of them live in the South. Various interventions are going on to support Southern countries to reduce poverty, while disabled people tend to be forgotten in those initiatives. Only 2% of the disabled people in the South get some kind of support.” I had a political intension to attract your attention by using the figures of people who are diagnosed as “disabled people”. This is a useful strategy in disability movement to present the significance and therefore the importance of disability issues in number and magnitude.

However, do they all identify themselves as “disabled people” all the time, which is a totally another question. The identity of any person changes depending on time, place and occasions. For instance, when you are spending quality time with your family, you are perhaps daughter, son, wife, husband, mother or father rather than “disabled people.” But when you are discriminated against when accessing certain services available for others but not you, then you might negatively feel your identity as “disabled person.” Alternatively, you might positively feel your identity as “disabled person” when you are offered equal opportunities with special attention to your needs or even more opportunities. Some people might not feel inconvenience of their impairments when they have certain devices, medications or personal assistants based on their needs. As a result, they might not feel that they are “disabled people” in most of their daily lives. That is, researchers cannot assume and put the label of “disabled people” even if they are technically categorised as “disabled people.”

In UK where disability movement has been strong and disability study is also actively connected to the movement, “disability” has connoted experiences of social oppression and discrimination together with the experiences of impairments. Thus “disability” and impairment have carried negative image. When it comes to gender issues, gender and sex are corresponding concepts: gender is used for socio-cultural experiences of women, while sex is the biological condition of women. Here gender is more comprehensive in the sense that it includes variety of experiences, not only limited to negative ones. (Please read more on this issue in Tom Shakespeare’s book, “Disability Rights and Wrongs.”)

In Southern countries that I have studied so far, discrimination against disabled people are so open and severe that they tend to feel and identify themselves as “disabled people” most of the time. In Uganda, however, I need to pay attention to the more comprehensive experiences of “disabled people” who enjoy affirmative action particularly in politics, while facing stigma and discrimination at different occasions. For instance, there is a disability quota in the Parliament: 5 members of parliaments are reserved for disabled people representing disabled population. In addition, a number of development cooperation activities specifically target disabled population where they directly benefit from the activities while non-disabled neighbours do not. In other words, they might identify themselves as “disabled people” when they are offered such opportunities limited to them. In short, the identity of “disabled people” seems to be quite mixed and needs more nuanced attention in this research.

This whole issue of identity is relevant also in any other context including Finland. Please let me hear from you when you feel that you are “disabled person.” I would like to learn from your experiences.

Demonstration

2007-12-13T07:07:00.000+02:00

Jukka and Hisayo took part in a demonstration in Helsinki, Finland to promote the right of disabled persos to personal assistants! Around 150 other joined the demonstration which took place in Helsinki on 6 December 2007, which is also the independence day of Finland. The theme was: "Independence for Disabled Persons!"

Nordic Africa Days 2007

2007-10-08T07:28:00.000+03:00

Hisayo and Jukka participated in Nordic Africa Days 2007 which was very nicely hosted by the Nordic Africa Institute situated in Uppsala. Many scholars had gathered from all over the world to discuss Africa issues.

We (Hisayo and Jukka) were joining the workshop: "Reconsidering Urban Politics in Africa: Urban Citizens between the Global and the Local", in which we presented a paper: "Human Rights-Based Approach to Disability in Development in Uganda: A Way to Fill the
Gap between Political and Social Spaces?". Here is a picture of all the great people in our workshop....Thank you all!

And here is the Institute's new Research Director Mr. Fantu Cheru giving the closing remarks of this very excellent conference:

Participatory Research Method - What do You Think?

2007-09-29T10:51:00.001+03:00

We placed a text by Hisayo on participatory research method on the side bulk (it's also placed here in the blogging below). What do you think? Can it really work? What do you think are the shortcomings of the method? Please share your thoughts on this :)

Blogmasters

--

"Research has been owned by the researchers. Thus researchers have been much more powerful than the researched people in many cases. In Disability Studies, it has been argued that this research context had contributed to reinforce the discrimination against disabled people in society. We would like to question this predominant research context by employing participatory research method in our study.

Participatory Research Method aims at participation of the researched people to the research process, thereby filling some of the power gaps between the researchers and the researched people. In this method, therefore, the researched people are active research participants rather than passive object of the research. The research process includes identifying the research questions, planning and designing the research, collecting data, analysing and interpreting the data and sharing the results. When the research participants can share their inputs based on their own experiences, the research can create relevant knowledge for them. The participation, however, is not compulsory. The research participants can make the decision on when and how to participate and not to participate in the research. The ultimate goal of this research method in our study is that the research outcomes will contribute to the sustainable, positive change towards the equality of disabled people.

However, we cannot give a false expectation to our research. We have to be clear about our research outcomes that we cannot promise a dramatic change because the research is only part of the society and because any single research of this kind cannot make such a significant change within the limited resources. Having stated that, we would like to make our modest contribution to the disability movement to fight against discrimination from an academic side."

Please, Share Your Thoughts !

2007-09-14T12:28:00.001+03:00

Let's begin our joint prcess of blogging by considering the role of disability research.

What do you think, is it important that we have spesific disability research, or would it be better to go purely main-stream. Do you think that disability-spesific research really has impact on the daily lives of disabled people? Do you have experiences in participating a research on disability?

We acknowledge the inaccessibility of this form of space particularly for
Ugandan disabled people without necessary preconditions such as internet
access, literacy and transportation. This is already a challenge for us in
our "participatory" research method.

Please, our Ugandan and Finnish (also others:) friends, tell us what you think!

The President of Finland Visited our Project

2007-08-18T07:59:00.000+03:00

On Friday 17 August the President of Finland, Tarja Halonen visited the Institute for Human Rights at the Åbo Akademi University. During this visit she was also introduced to our project and she was very interested on the implentation of international law in Uganda and disabled people. Especially she was interested in the situation of people with hearing impairments and the deaf. The visit was also reported in the website of the President and there is now link to this blog :)

In the photo with Jukka from the left: The Spouse of the President, Pentti Arajärvi; Director of the Institute, Martin Scheinin; the President of Finland, Tarja Halonen.

Welcome !

2007-08-15T08:55:00.000+03:00

Dear colleagues

Thank you for finding your way here in our newly-founded blog! Please take some time to get familiar with our research project and with the research team members. In brief, our research is on human rights and disability in Ugandan context. Our team members consist of disability activists both from Finland and Uganda and academic scholars from different fields.

We thought that research works had been too far away from non-academic people, or even from those who are in different fields or disciplines of the academic community. We wanted to bridge this gap by creating this blog as a space for us from different backgrounds to communicate. Please don’t hesitate at all to comment here and be in contact with us.

The blog will have writings and discussion on various themes that relate to our research project. We will try our best to keep up the discussion by offering desirable subjects. In addition, our conference papers, trip reports and other related materials will be available here for your convenience.

Yours sincerely,
The Research Team