Disability Rights in Uganda - Research Blog

By Edson Ngirabakunzi

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

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

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

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

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

Martin and Edson finally meet -->

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

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

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

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

Shopkeeper with disability in the market area ->



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



By Hisayo Katsui

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

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

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

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

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

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

Reference:

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

Ministry Madada and myself->

By Hisayo Katsui:

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


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




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

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

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

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

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

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

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




Hisayo and Dr. Rukooko -->











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






Hisayo and Dr. Wamala -->








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

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

Written by Hisayo Katsui

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

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

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

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

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

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

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

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

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

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

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