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

(Dr. Tom Shakespeare on the right)

Written by Hisayo Katsui

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

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

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

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

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

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

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

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

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

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

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

Jukka's Research Assistant's Kaddu's Report

Hi!

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


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



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


Introduction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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