'Others'

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

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!!

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

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[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

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

• 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

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

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

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

<-- 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

<-- 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

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

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

<-- 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

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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

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

<--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

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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

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

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

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

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

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!

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

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

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

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.