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!!