- Katsui, H. (2008) Downside of the Human Rights-Based Approach to Disability in Development. Working Paper Series of IDS at Helsinki University 2/2008.
- Katsui, H. (2008) Mainstreaming Disability Issues in Japanese and Finnish Development Policies and Practices. Working Paper Series of IDS at Helsinki University 1/2008.
Our team members of this project have been playing many roles, not only as researchers working on Ugandan disability issues. I’m not an exception. Last week, I had the opportunity to visit Central Asian countries for evaluating a development cooperation project between Finnish and Central Asian DPOs. (I would like to thank all the people who have supported my work!!) My last visit to Central Asia was five years ago for my PhD study. Uganda is somewhat known in the disability sphere, while Central Asia could be the other extreme. In this article, I would like to discuss fundamental failure of a human rights-based approach taking place in Central Asia. “Central Asia” refers to Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan and Uzbekistan, in this specific context.
These countries are still somewhat “difficult countries” for donors in many senses. Particularly Turkmenistan and Uzbekistan widely restrict non-governmental associational activities especially when they use “human rights” as a key concept. That is, “nothing about us, without us” cannot be fully implemented when DPO activities are restricted. Although Turkmenistan ratified the Convention as the first country in Central Asia, that has nothing to do with disability movement because it is non-existent. The development cooperation project that I was commissioned to evaluate included both Turkmenistan and Uzbekistan, but its impacts to these countries remained extremely limited due to the severe political environment for any associational activities in general. Similar result was observed in my PhD study.
The Convention has the article of international cooperation (Article 32), which highlights international development cooperation to be inclusive of persons with disabilities. Non-discrimination and equality are important human rights principles. However, in reality, limited resources are allocated to persons with disabilities in “easier countries” earlier, if not first. Even within the countries, local power structure plays a role. That is to say, priority making is extremely difficult in reality. The most marginalised groups of people among persons with disabilities might be the last ones in the queue.
I will study more on this marginalisation in the on-going research project on Uganda by paying special attention to deaf women.
If you are interested in knowing more about disability in Central Asia, please take a look at my article published this year, or more in detail in my PhD thesis:
Katsui, H. (2008) “Human Rights-Based Approach and DPOs in Central Asia.” Journal of Disability and International Cooperation Vol.2/2008. P.21-26.
Katsui, H. (2005) Towards Equality ~Creation of the Disability Movement in Central Asia~. Helsinki University Press. Helsinki.
Katsui, H. & Kumpuvuori, J. (2008) Human Rights-Based Approach to Disability in Development in Uganda: A Way to Fill the Gap between Political and Social Spaces? Scandinavian Journal of Disability Research. Volume 10 Issue 4. P.227-236.
I heard the news yesterday that my friend, Taija Heinonen (Executive Director of Abilis Foundation), passed away during her trip in Tanzania. She left me many things and I would like to share some of those with you.
I learned to know her when I started my PhD study at Helsinki University in 2000. She always took her precious time for me whenever I wanted to meet her and interview her. She appreciated my study and encouraged me to continue it. When I was completing my PhD, I was concerned with my future as a researcher of disability and development in Finland. It is not one of the major themes that could attract much attention of research funders. In addition, I am a foreigner here. She then asked me to conduct an evaluation work for Abilis Foundation, where I learned many fundamental issues around the theme of disability and development. That experience has definitely led me to this Ugandan project.
Taija also invited me to become her personal assistant. By the way, her personal assistants were mostly those from Southern countries living in Finland. She was willing to employ those who have difficulty in finding a job in Finland. She is well known for her works in Southern countries, but she was making changes also in Finland starting from her personal level. I respect her so much in that, too.
When I visited Uganda last time, people remembered Taija very much because she travelled Uganda with her husband. They saw Taija in her wheelchair cared and loved by her husband. Her visit encouraged many Ugandan women with disabilities to believe in their future. I’m sure many people in different countries were encouraged in a similar way.
Taija was modest and strong. Thank you Taija.
Jukka visited Uganda on September 2008. A report of this travel will follow soon. Meanwhile, we share with the blog readers the experience of Jukka's research assistant Kaddu Zachary, who did a great job during Jukka's visit and most likely we will be cooperating with him in the future too. Thank you Kaddu! Enjoy Kaddu's writing...
Jukka and Kaddu in the Parliament House in Kampala -->
Personal Perspectives on Disability – Uganda
Written by Kaddu Zachary
Persons with Disabilities (PWDs) in
The Government of Uganda attaches considerable importance to the situation of persons with disabilities in its policies and programmes. The Constitution of the
In Uganda, the estimated number of people with disabilities (PWDs) range between 7% and 10% that is ranging between 1, 540,000 and 2,200,000 people of the total population (UNHS, 2005/06). Empirical studies assert that disability in
Experience has taught me a lot. Being a PWD who has grown in a traumatizing situation were the community looks at you objectively, I have learnt that the road to a happy life is struggling the hard way to achieve what you want in life. As a disabled person, the fundamental issues we PWDs need to understand are; respecting our selves, self-worth, gaining self-confidence and above all ‘learning to accept who we are.’ We PWDs need to accept ourselves and the situations we go through, this will change the society’s perception of who we are thus became accepted by others .
On the part of development in disability, this may not be a one, two or five year plan to achieve rather a step by step issue. Drawing from one writer that ‘…. No need for hurry in Africa’, there should be a systematic way things should be done to benefit all PWDs or else a few will benefit and the majority will not share on such benefits arising out of the efforts made. Human rights of PWDs should be put on the forefront and people, governments and any one who impends and hinders the attainment of them should be held accountable and responsible thus justice apprehended.
I believe with the enforcement of disability legislations and holding our governments or people responsible for jeopardizing our human rights, this world will became a friendly place for all PWDs.
My experience with Jukka in Uganda
I wish to extend my sincere gratitude to Jukka for selecting me as his Research Assistant during his visit in September 2008 to Uganda. Well it was my grate pleasure to host him here in Uganda and I was able to learn a lot from him. As we shared experiences about our lives, I took note that it is always out of struggle, commitment and determination to hold on even in times when things get worse that we achieve our goals in life. During this period as we visited a number of Disabled people and their organisation, I came to learn that we the disabled people ought to work together like termites do when building there home in order to achieve our goals. If we continue to work in isolation, then we shall not be heard and the decision-makers will always make decisions for us. It’s the right time if we started participating and demand for those human rights that we ought to have.
It was great having you – Jukka here in Uganda and our friendship as well as information sharing shall keep us together. I hope and pray that together with others became the leading ‘disability Activists’ with a vision of ensuring that ‘even for the most unheard or marginalized disabled person in the world is granted his/her human rights though by state, political or opinion leaders, and our sisters and brothers the non-disabled.’
Mr. Kaddu Zachary
Bachelor of Social Work and Social Administration (Candidate)
Faculty of Social Science,
Makerere University, Kampala - Uganda
Email: kadduzachary (@) yahoo.com
Jukka and Hisayo in the 4th Biennial Disability Studies Conference at Lancaster University, 2-4 September 2008
In UK, the disability movement and Disability Studies as an academic discipline are inseparable. Many scholars are both academics and activists. It was very interesting for me to observe this strong activism in the conference which was organised by the Centre for Disability Research, Lancaster University. It was attended by 200 participants from more than 20 countries. I’d like to thank the organisers for their works for this conference to come true.
Arguments throughout the conference were centred around reaffirmation of the “social model” of disability and strong will to maintain the model in the future of Disability Studies in UK. This was a bit of a surprise to me, though I took my Master’s Degree in Disability Studies in England back in 1999. Now that I am based in Finland where human rights talk is perhaps stronger than the “social model”, I felt something is missing. I asked Professor Peter Beresford, who was one of the plenary speakers, how British Disability Studies deal with human rights. His answer was like this: the “social model” is touching human rights. As “social model” has been contested, some started to use human rights terminology. He thus implied that there are not so many who use human rights-based approach to disability in UK.
I also noticed a lot of accusation of post-modernistic approach. Some even named them as “crazy post-modernists” which was not questioned but welcomed. The latest book of Tom Shakespeare, one of the post-modernists, “Disability Rights and Wrongs” was inspiring for me. In this sense, I felt a distance to the mainstream participants. This distance is actually what I felt more strongly when I was taking my Master’s Degree. In the late 1990s, being disabled person was so integral part of both the disability movement and the Disability Studies in UK, which made me feel excluded. In his speech, Professor Colin Barnes, who is a social modelist, acknowledged both disabled and non-disabled academics’ achievements in this discipline. Thus, there has been a change over time. But I got the impression that this specific conference was attended mainly by conventional social modelists, if I could call them so. (Or they were the most vocal ones.) Having said that, I observed many participants with disabilities, which is not the case in Nordic disability conferences. I think it is important that Disability Studies as a discipline is accessible not only for (both disabled and non-disabled) academics but also for persons with disabilities.
Another experience I want to share is my quasi-personal assistant role. Jukka’s assistant cancelled her coming one day before, which gave me the opportunity to learn part of the regular responsibilities of personal assistant. It was a great learning experience for me. It heavily rained all three days (what else we should expect from English weather??), which made our days a bit more exciting (Please see the picture!).
Jukka had informed that he is a wheelchair user, but his accommodation was inaccessible for the first day “by accident” and he had to use the room. The conference organisers did not mean to discriminate Jukka with the first arrangement of the room. With Jukka, we discussed a lot about differences and similarities between direct and indirect discrimination. Does it matter or not, when you do not intend to discriminate persons with disabilities but the end result is discriminatory?
The conference has left many questions to elaborate further. I also met many interesting people, with some of whom we agreed to do some projects together in the near future. In many senses, it was a very interesting conference.
Conference website: http://www.lancs.ac.uk/fass/events/disabilityconference/
Uganda in line with its 1995 Constitutional obligation of respecting dignity and rights of PWDs enacted several disability friendly laws. This has been possible due to advocacy and policy influence initiatives of Disabled people’s organizations and their leaders. However, these laws have not been fully translated into practical outcomes towards disabled people. This has been partly due to absence of regulations to make them operational. Such laws geared towards promotion and protection of disability rights and needs of PWD in Uganda include, National Council on Disability Act 2003, the Disability Act of 2006 and the Equal Opportunities Commission Act 2006 and Local Government Act 1997.
Where as some of these laws have been in place for the last 5 years or so, there has been little positive impact of such laws in lives of PWDs. This has been partly due lack of enabling regulation to guide implementation among others. This was further echoed during the celebrations to maker the International Day of Disabled in 2007. The President, who was the guest of honour during the celebrations, noted it as an issue of concern too. He noted that there was need for a meeting with disability stakeholders to discuss and refine further on why such laws were no being implemented and remedy sought. Reasons earlier advanced for non implementation was that some technical people did not know how to manage and implement laws that had no guidance framework. This was later to be provided for in form of regulations. The other issues noted were lack of financial resources to ensure the laws were appropriately addressed.
Therefore, arising from the above, the line Ministry of Gender Labour and Social Development has developed regulations on National council on Disability Act and on Disability Act. These regulations are an important landmark in promoting disability rights in development process in Uganda. Where as the parent laws were providing general frame works on a number of disability issues like employment among other, the regulations have defined and refined them further to guide planning and implementation by the technical people at all levels of government. Already, the regulations have been discussed by the disability stakeholders to ensure that disability concerns are well anchored in the regulations. In line with our project, the regulations have provided critical benchmarks for promoting employment and employability of PWDs in Uganda. Once implemented will ensure adequate service delivery to PWDs and hence improved standard of living. Additionally, they are well anchored in the CRPD section 27 on right to work and employment.
It is important to recall these regulations are a recent development this year 2008, yet their parent laws were developed in 2003 and 2006 respectively. Nonetheless, this is a new development in as far as regulations on disability laws are concerned where the employment and employability of PWDs is elaborately expounded. In line with human rights approaches to development, the regulations have been particularly informative. Where as the Disability Act has been broad in as sense, the regulations have defined in detail what it takes to guarantee employment of PWDs. The regulations provide for the line ministry to employ a person responsible for employment placement for PWDs, prohibits the employer from using screening methods that discriminate qualified disabled employee, responsibility to employer to provide assistive services required by employee to execute his or her duties under employment contract thereof, it also provides mitigating measures where disability occurs in the course of employment such as redeployment in line of fitting employment and re-aligning the employment contract without break in the period of service. The regulations also provide for tax exemptions on modification costs to employers. This is in line with CRPD principle of reasonable accommodation. The regulation further provide for consultations with DPOs in and during the process of recruitment and job placement of PWDs by employers.
We are yet to celebrate improved employment situation of PWDs in Uganda. Number factors still negatively influence employment of PWDs, such issues as attitudinal challenges inherent in community value system and economic development imbalances that is skewed against vulnerable communities of the disabled people. Macro economic policies that would rekindle PWDs accessing employment in both formal and informal sector still slow in visibly recognizing poor rural PWDs. It is apparently also not clear in the new regulations how PWDs employed in the informal sector will be catered for.
UN Convention on the Rights of Persons with Disabilities entered into force on 3rd of May 2008, as the first UN human rights convention in the new millennium. The Center for Human Rights of Persons with Disabilities (VIKE) organized this seminar. The seminar focused on the added value of this Convention to the fight against discrimination of 650 million persons with disabilities. 200 people participated in the seminar from all over the world.
The keynote speaker was Professor Michael Stein, the Executive Director of the Harvard Project on Disability (
Our research team also contributed this seminar to a great extent: Edson came all the way from
We met many interesting people to continue our discussion even outside of the seminar room! We are excited to continue our discussion for the implementation of the Convention in our world. Our warm thanks to the organiser of this seminar.
Shopkeeper with disability in the market area ->
Group picture taken in the internally displaced people’s camp at Gulu district -->
By Hisayo Katsui
I had the great opportunity to visit Uganda in January-February 2008 for my research work on human rights-based approach to development cooperation. My special focus is on the rights of women with disabilities (WWDs), particularly deaf women, in development cooperation activities of disabled people’s organisations (DPOs). In this article, I would like to summarise two aspects of disability movement in Uganda: political achievement and the reality of WWDs on the ground.
Uganda is famous for the development of disability movement in terms of its politics. The rights of disabled people are specifically stipulated already in the Constitution of 1995 as follows, “Persons with disabilities have a right to respect and human dignity and the State and society shall take appropriate measures to ensure that they realize their full mental and physical potential.” Concrete positive changes, for instance, have taken place in creating political space for disabled representatives. After the enactment of the Local Government Act of 1997, affirmative action has been introduced for the marginalized groups of people including women, disabled people, youth, workers and army. Since then, they are represented in Ugandan politics at all levels including Parliament. Uganda has the quota system for five Members of Parliament (MPs) who are representing people with disabilities (PWDs): Four MPs from four regions (Central, East, West, North) and one woman with disability. Their sign language interpreters and personal assistants are paid by the government. An interesting fact is that in the 2006 election, two former MPs representing PWDs stood for the mainstream positions outside of the quota framework and also passed through. Both of them are WWDs. Therefore, there are 7 MPs with disabilities in the Parliament at present. Moreover, 47,000 disabled councillors work in local government structure, of which half of them are WWDs. In 1998, the State Minister for the Elderly and Disability Affairs was created under the Ministry of Gender, Labour and Social Development. This Department vocally addresses the issues of disability though with resource constraint. In 2006, the National Disability Act was adopted which further stipulates the rights of PWDs in Uganda. In 2007, President Museveni joined the International Disability Day event and promised to meet with DPO representatives in 2008. The visibility of PWDs in the political space is outstanding achievement of the disability movement in Uganda. At this political level, it is not over-romanticising to mention that Ugandan disability movement has achieved a lot, although the introduction of the multiparty politics to some extent fragmented disability movement.
The affirmative action policy affected the lives of many. For instance, many students with disabilities enter into higher education institutions with this policy. They get extra points to the entrance examination markings and also get financial support during their study. When I called for candidates to become my research assistant, I was surprised to have received many applications from WWDs with high education background, which was not the case in my previous studies in other countries. Also many shopkeepers in a market area in Kamapala benefit, as they can keep their shops in one of the busiest spots, after the vigorous efforts of the disability councillor of Kampala district. I saw only few beggars with disabilities on the streets. In this way, many positive changes started to take place in the social space as well as in the political one.
However, my interviews also revealed not so rosy picture of WWDs on the ground. Many interviewees mentioned that sexual and/or physical abuse is a big problem for WWDs. One was stabbed by her step-mother and was saved by a church, while others say in a synchronised voice that they have “sex by chance, not by choice”. It was often the case that they are single mothers without husbands because they are stigmatised to be the official partners of WWDs. Official marriage is a dream for Ugandan WWDs, according to many interviewees. As a result, the HIV/AIDS epidemic hits very hardly on WWDs because the society believes that WWDs are asexual and thus are free from HIV/AIDS. There is a surprising statistics that 22% of the studied WWDs were raped in their first sexual encounter (Mulindwa, 2003:32). The same study points out the low usage of preventive measures against sexually transmitted diseases including HIV/AIDS. Too many WWDs cannot negotiate safe sex, which is a silent but great problem. However, it is not an exception for WWDs to live with dignity as both PWDs themselves and the society gradually started to change. I observed many PWDs including WWDs who live positive lives even on the ground.
There is a cynical way to look at this phenomenon of disparity: the government depoliticise disability by the easier solution of disability quota to the political space rather than providing universal rights to PWDs on the ground. I’m not sure about that because I did witness positive changes made in the social space by the political representatives, though some of their capacity is only evolving now. The interplay of the political achievement and social challenges is an interesting theme to elaborate further in the future research. DPOs are playing an important role in this because DPOs deeply collaborate with those political representatives for attaining their objectives.
NUWODU (National Union of Women with Disabilities of Uganda) was established in 1999 because the gender aspect had been overshadowed in the Ugandan disability movement. In 2008, it started a new two-year-project to promote gender aspect in the activities of the disability movement. Challenges are many even when the political representation has been achieved. For instance, many WWDs on the ground did not even know the word, “human rights” when the DPO is taking a human rights-based approach in its activities. Could the mainstreaming of gender aspect in disability movement positively affect the lives of WWDs on the ground? How to balance empowerment and mainstreaming activities for maximising the outcome? With those questions in mind, I am going to scrutinise this project.
Mulindwa, I.N. (2003) Study on Reproductive Health and HIV/AIDS among Persons with Disabilities in Kampala, Katakwi and Rakai Districts: Knowledge, Attitudes and Practices. DWNRO. Kampala.
Ministry Madada and myself->
I had the great opportunity to visit Uganda for about five weeks. I would like to make a small travel report about my stay.
Hisayo and Edson in front of the Makerere University -->
First of all, Ugandan disability activists use "Person with Disability (PWD)" rather than "disabled people" to put person first. Similarly, "Woman with Disability (WWD)" was preferred to "disabled woman". As I took my Master's Degree in England, I had followed the English terminology of "disabled people" to politicise the disability first before my visit to Uganda. However, now that I would like to study more about Uganda, I also start using PWD and WWD to respect their priority and thinking.
I tried to experience the lives of Ugandan PWDs, particularly those of WWD, by homestaying in one WWD's house and having another WWD as my research assistant. I cooked local food with the host family and moved around with public transportation means with my assistant. I could observe how people react to different situations to my assistant and listen to the stories of both of these WWDs, which enriched my insights towards disability very much.
As many of you might already know, the development of disability movement in Uganda has been so dynamic and interesting. On the one hand, I had the chance to meet the State Minister for the Elderly and Disability Affairs, Sulaiman Madada, and 6 (3 women and 3 men) Members of Parliament who are PWDs. On the other hand, I enjoyed meeting with deaf women and WWDs on the ground including those living in the internally displaced people's camps in the war torn areas in the Northern part of Uganda. Consequently, I could observe and understand the existence of some gaps among people at different levels. For instance, human rights-based approach is well incorporated in the constitution and laws, while WWDs on the ground did not even know the word, "Human Rights". That is, many preconditions for self-determination seemed to be missing particularly among those on the ground.
However, I could also observe many positive things both in the political space and social space. In the political space, it is famous that PWDs have political representation even at a village level. This has its own challenges, but this representation seems to have changed many things. Those disability councilors at local levels politically negotiate for the benefit of their constituencies of PWDs. For instance, PWDs were given good spots in the market area near the "New Park" (of public mini buses called "taxies") so that they could easily access the working place and also be visible for others to learn that PWDs can work. There were surprisingly few beggars on the streets. I saw many PWDs working but very few begging money. There could be many more PWDs hidden at their homes, too, as many told me so. However, superficial observation dipict different picture of PWDs in this country, particularly compared with Central Asian countries that I know from my PhD study.
When it comes to development cooperation activities, Denmark has been very active for a long time. Unlike other donor/Northern countries, Denmark tends to send development workers for a local organisation for more than one year. To my surprise, there are two PWDs from Denmark who has been there for more than ten years. They represent DPOD, former DSI. This modality seems to have both positive and negative effects according to my research participants/interviewees, which will be scrutinised further in my future writings. Almost all Ugandan DPOs depend on external fundings, which make them vulnerable to external change of trends and funding decisions.
Lastly let me use some space for briefly introducing two Ugandan people who also play important roles in our project.
Dr. Rukooko is the supervisor of Edson and our contact person at Makerere University.
Hisayo and Dr. Rukooko -->
Dr. Wamala is also our new contact person. We had several meetings during my stay and share many interests among us. We are organising a workshop on Human Rights-Based Approach and Disability in the beginnig of 2010. I am very happy to have such understanding partners.
Hisayo and Dr. Wamala -->
After my visit, I am even more excited about our research project! I hope that our findings would be useful and usable to the Ugandan disability stakeholders as well as many others.
Identity of Disabled People: When do you want to be called “disabled people”?
Written by Hisayo Katsui
I am heading for
Who are disabled people? The official definition of “disabled people” is diverse from country to country. They are usually based on medical diagnosis, on the basis of which people are entitled to certain services, devices, medications and so on. In Northern countries, the definition is increasingly diversifying as more new diagnosis are found and also because the population is aging. When it comes to Southern countries, the definition tends to be more “classic” ones which include often people with observable sensory or physical impairments. This is one way to look at the identity and possibly the easiest way for a researcher to approach “disabled people.”
For instance, in my last article in the newsletter (No.3/2007), I introduced some figures: “10-12% of the population is disabled people in the world and 80% of them live in the South. Various interventions are going on to support Southern countries to reduce poverty, while disabled people tend to be forgotten in those initiatives. Only 2% of the disabled people in the South get some kind of support.” I had a political intension to attract your attention by using the figures of people who are diagnosed as “disabled people”. This is a useful strategy in disability movement to present the significance and therefore the importance of disability issues in number and magnitude.
However, do they all identify themselves as “disabled people” all the time, which is a totally another question. The identity of any person changes depending on time, place and occasions. For instance, when you are spending quality time with your family, you are perhaps daughter, son, wife, husband, mother or father rather than “disabled people.” But when you are discriminated against when accessing certain services available for others but not you, then you might negatively feel your identity as “disabled person.” Alternatively, you might positively feel your identity as “disabled person” when you are offered equal opportunities with special attention to your needs or even more opportunities. Some people might not feel inconvenience of their impairments when they have certain devices, medications or personal assistants based on their needs. As a result, they might not feel that they are “disabled people” in most of their daily lives. That is, researchers cannot assume and put the label of “disabled people” even if they are technically categorised as “disabled people.”
In Southern countries that I have studied so far, discrimination against disabled people are so open and severe that they tend to feel and identify themselves as “disabled people” most of the time. In
This whole issue of identity is relevant also in any other context including