Appendix A - Methodology

Background to Project

Rights monitoring is a research method that involves the tracking, collection, collation, analysis, interpretation and mobilization of data and knowledge about the life situation of people using human rights standards as benchmarks. Monitoring is central to an effective, organized approach to enforcing the equal enjoyment of human rights. A review of international human rights literature shows that, unlike areas such as women’s rights (Callamard 1999a; Callamard 1999b; Callamard, Bedont et. al. 2001), disability rights monitoring is relatively underdeveloped (U.N. Special Rapporteur on Disability 2000; International Disability Rights Monitor 2004). To date, comprehensive knowledge about the human rights situation of people with disabilities in Kenya has not been systematically collected, documented, stored and/or analyzed. Mechanisms for effective disability rights monitoring, including surveys and training resources are scarce. Tools and methods aimed at multiple levels of analysis (i.e. individual and system levels) are also unavailable. In addition to gathering data regarding the human rights situation of people with disabilities, this project will form part of an international field-test of a tool specifically designed for disability by one of the project partners, D.R.P.I. Evidence-based knowledge regarding the extent to which people with disabilities exercise their rights will inform effective societal, policy and program change to improve the lives of people with disabilities in Kenya.

Key Aspects of D.R.P.I. Disability Rights Monitoring Projects

There are four basic principles that underlie the D.R.P.I. monitoring of disability rights. They are:

1. Involvement of disability organizations of people with disabilities and people with
   disabilities individually, in all aspects of the project.
2. Capacity building of organizations of people with disabilities and people with disabilities individually in order to ensure the sustainability of monitoring activities beyond the life of the project. Capacity is built with respect to: understanding human rights and disability; how to monitor disability rights (including associated privacy and security concerns); how to train others to monitor disability rights; how to store and protect the data collected; how to analyze monitoring results; and how to manage a monitoring project. A 'rain the trainer' model is employed with the expectation that those who have gained the skills will, in turn, train other people.
3. Involvement of people with different types of disabilities, that is, a 'cross-disability approach'. Consistent with the need to protect and promote the human rights of all people with disabilities, it is necessary that those involved in project management and implementation and those who are interviewed, are representative of the broad range of disabilities. By working together to gather data, people with one type of disability gain a better understanding of the situation of those with other types of disabilities. It is hoped that this will help build multi-group cohesion and strengthen the overall bargaining power of the disability movement.
4. Emphasis on the personal stories and priorities of people with disabilities. The monitoring tool has been developed to ensure that people with disabilities have an opportunity to tell their own story and to identify those rights issues that are most important to them. The resulting data reflects the most important rights issues at the various monitoring sites, as defined by people with disabilities themselves. They identify those rights issues which are priorities to themselves. This is a process in which they are asked which stories they want to tell.

Objectives of the Research

The project involved field research to collect accurate and reliable information regarding the human rights situation of Kenyans with disabilities. At the same time the research project developed a sustainable system to ensure that disability rights data collection continues beyond the duration of the formal project by creating networks of people to monitor disability rights and by building monitoring capacity within those networks. The project also developed the technical infrastructure needed to collect and store this type of data.

Reports have been generated and are available to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media, government bureaucrats and politicians. The reports inform people about violations of the rights of people with disabilities; address existing infringements of disability rights and provide information to prevent future rights violations of people with disabilities. They provide evidence to support advocacy for changes in laws, policies, and programs to improve the lives of people with disabilities. Finally they provide a benchmark to monitor the Kenyan government’s progress in fulfilling the commitments it has made to people with disabilities through its ratification of international human rights treaties.

Research questions

The research attempted to find answers to two questions.

1. What barriers do people with disabilities face with respect to the exercise of their civil, political, social, economic and cultural rights?
2. How is the exercise of rights by people with disabilities affected by intersecting forms of disadvantage (i.e. race, gender, ethnicity, geographic location, age, education level and income level)?

Getting Started

The initial activities of the project involved 2 days of intensive workshops which set the tone and substantial grounding for the project.

Building a national cross disability broad-based human rights network was the first activity, held on November 30, 2005. This involved bringing together organizations of people with disabilities, local universities, national human rights institution, traditional human rights organizations, universities and government representatives. A cross disability model was realized through involving the Kenyan Union of the Blind (K.U.B.) and Centre for Disability Rights Education and Advocacy (C.R.E.A.D.) into the project. K.U.B. brought in people with visual disabilities while C.R.E.A.D., which is a collaboration programme on human rights created by D.P.O.s representing five major disabilities in the country, brought in people from the three other disability perspectives, i.e. physical disability, intellectual disability, and hearing disability. Information was provided at this workshop on human rights monitoring and documentation, the U.N. human rights system, and a model for a disability rights monitoring system The Kenyan Disability Human Rights Advocacy Network (K.D.H.R.A.N.) was given the mandate of developing a broad agenda aimed at overseeing that human rights of people with disabilities in Kenya, to be sure it would be on the agenda for social change needed to bring about the entrenchment of disability rights.

The Disability Human Rights Task Force (D.H.R.), elected by the K.D.H.R.A.N. and mandated to begin the planning and organization of a disability rights monitoring project in Kenya, met on December 1, 2005. The Task Force of 10 people drawn from representatives from national organizations of people with disabilities, and other critical stake holders including the Children Legal Action Network, the Kenya Law Review Kenya Law Review Commission, the National Council for people with Disabilities, three major universities (University of Nairobi, Moi University, and Kenyatta University).

The role of disability and human rights task force was develop criteria to select study sites; develop criteria for selecting monitors and field assistants; determine who should attend the capacity building seminar for developing monitoring skills; advising on training methodology in the capacity building seminar; determine the number of interviews to be conducted in the study; propose a workable time frame for the study; facilitate dissemination and follow-up activities of the study findings; select a management team for the study; encourage the protection and promotion of human rights of people with disabilities; and ensure that the monitoring of the rights of people with disabilities continues beyond the project.

From those initial meetings the overall methodology and organization of the project was designed and developed with four basic activities including building an organizational structure, capacity and confidence building, data collection, analysis and report writing.

Organizational Framework of the Study

Key decisions in the study regarding parameters, human resources, and time frames were made in well structured decision making levels. That decision-making included people from national organizations of people with disabilities, as well as the management team, a project coordinator, technical support and financial support. The National Organizations of people with disabilities laid the broad framework through which the study was conducted. The national organizations included the Kenya Union of the Blind (K.U.B.) (a national organization for the blind and partially sighted in Kenya) and Centre for Disability Rights Education and Advocacy (C.R.E.A.D.) ( a cross disability human rights program created by five People with disabilities Organizations representing, people with intellectually disabilities, deaf and hard of hearing persons, albino persons, and people with physical disabilities.

The Management Team of four people was selected to oversee the work outlined by D.H.R. task force. The members were drawn from K.U.B., C.R.E.A.D., and the universities in the ratio of 2:1:1. The mandate of the management was specifically to do the overall logistical management of the project including selecting the researchers and their assistants (see appendices for a list of the project personnel, including the monitors and field assistants), designating and inviting participants to the training seminars; appointing a project coordinator; overseeing the research work in the field and assisting with the development of field work modalities.

The Project Coordinator was hired in January 2006 and worked under the direction of the Management Team, responsible for the organization and administration of the project’s training, data collection and data analysis activities. The Project Coordinator was the 'front-line' person in Kenya. It was his responsibility to deal with any problems that arose during the course of project. In performing these roles, the Project Coordinator had the support of the National Organizations of People with Disabilities, the Universities and the staff of D.R.P.I. and S.R.F.(see more below).

The project relied on Technical Support that was provided by four organizations and several universities. The four organizations were Disability Rights Promotion International (D.R.P.I.), Swedish Association of the visually Impaired (S.R.F.), and Africa Union of the Blind (A.F.U.B.) and University of Nairobi School of Law.

The project was funded jointly by Swedish Association of the Visually Impaired and Disability Rights Promotion International.

Capacity and Confidence Building

Data collection

The research relied on multiple research methodologies, including environmental scans, secondary data and qualitative data collection in the field. The primary source of data was the experiences of people with disabilities collected in the field work in three research sites. The field work involved face to face interviews with the people with disabilities in their natural habitation. A hundred and three interviews were conducted in the three sites (about 4 interviews were unable to be coded because of the quality of the tape recordings and notes of the interviews). In the field environment scans were being done both of the sight of the interview and of the community of the interviewee. Secondary data was collected through the review of the country legislations, government programs and case law.

Measurement Tool

A monitoring tool that uses human rights standards defined by the United Nations was employed to collect data. The tool used a series of close-ended and semi-structured questions. Detailed records regarding interviewees’ demographic characteristics and experiences were collected at each site. (See appendices for a copy of the monitoring tool entitled Interview Questionnaire).

Sample

The project’s Management Team chose three areas in Kenya: : Central (Nairobi), Rift Valley (Nakuru), and Western (Kisumu) to be study sites. The sites reflect diversity of ethnic homogeneity / heterogeneity of the population, high and low levels of overall poverty, and high and low levels of literacy. Due to the difficulty of obtaining a definitive sampling frame with the population of people with disabilities, we used a non-proportional quota sampling technique to recruit individuals with attributes representative of the percentage of sensory, intellectual, psychiatric and mobility disabilities in the broader Kenyan population. Given their roles in the community, the organizational partners were involved in recruiting people with disabilities for the sample. The team used a snowball sampling technique to identify other research participants. At each site, approximately 30 people who self-identified as having a disability were interviewed. The sample balanced for gender, age (18 and over), type of disability and occupation.

Monitors

The monitors (interviewers) were people with disabilities while the field assistants were law who did not have disabilities. Using a snow ball sampling technique to identify and select interviewees there was an attempt to ensure the interviewees included a cross-student section of different types of disability, gender, class, education and tribal background. The monitors worked in pairs each of whom had a different disability. This enabled the interviewers to act as support for each others both in terms of capturing the data and in acting as disability assistance for each other. In the case where on member of the team was deaf person, there were sign interpreters at hand to support the team in communication with one another and with the interviewee. All the interviews were tape recorded and notes were made immediately after the interviews and time was allocated for the monitors to do that work.

Training for interviewing and fieldwork (Disability Rights Monitoring Workshop)

Key to the field data collection was a seven day training held prior to the monitors and field assistants going into the field. It was designed to provide them with the human rights context for the work and to train them on primary data collection methodology and give them both roll-playing and hands-on experience in interview techniques.

Two representatives from D.R.P.I. facilitated the training workshop. In advance they developed an interview questionnaire, a training manual for the monitors, information and consent sheets. They provided technical advice and assistance regarding the organization and administration of interviews.

The topics of the workshop included a wide range of issues including the following: a basic understanding of human rights and disability from a human rights perspective including the distinction between a charitable approach and a human rights approach to disability, the international normative context of human rights instruments in the United Nations system. With that as the basis for the work, intensive training was provided on how to do an interview and to use the interview guide, techniques of interviewing, finding the interview subject using the snowball interviewing technique, potential problems in the field, maintaining confidentiality, and the organization and administration of the monitoring project. The formation of monitoring teams and field assistants was decided at the training and logistical details of the field work was also covered during the seminar.

The training workshop was attended by 36 participants and others in attendance for seven days: 13th – 19th February 2006 (details about the participants are available in Table 1 below).

The importance of gaining the consent of the research subjects both for the interview and of tape recording as well as the methods to ensure confidentiality were a central part of the training (consent and confidentiality procedures are outlined in the consent forms in Appendices).

The field monitoring process began following securing the government authority to undertake research in all districts of Kenya by Kenyans.

The interview teams spent approximately 20 days in the field in each site. In the Rift Valley 33 persons with disabilities, 16 men and 17 women were interviewed in 20 days. In Nairobi, 34 persons with disabilities were interviewed over 21 days of which 18 were women and 16 men. In Nyanza the interview period for the 36 people interviewed was 22 days.

Monitoring meetings

There were three field team meetings during the course of the fieldwork. They were the pre-planning and roll-out meeting (this was to ensure that people understood their roles, responsibilities and the skills and the knowledge for the team work); the mid term review meeting (to review the progress), and the debriefing meeting at the conclusion of the fieldwork (to gain information on the research process and to resolve any outstanding technical issues once the interviews were completed.

After the Field: Field Data Analysis

Interviews were tape-recorded and notes taken. All field data collected, including the tapes of the interviews and the field notes were sealed and filed with the Kenyan principal data analyst at the University of Nairobi for safekeeping. He transcribed all interviews and translated those that were not in English. Anonymized data was input onto a web-linked computer platform to facilitate data transfer and storage. The resulting database enabled data to be captured, processed and analyzed for research and advocacy purposes. Data was analyzed with Qualitative Research Software NVivo7 that disaggregated the data in both qualitative and quantitative terms. D.R.P.I. developed a coding scheme for the data analysis and collaborated with the principal data analyst in Kenya to code and analyses the data. See appendices for the coding scheme). The project coordinator in close collaboration with D.R.P.I. and C.R.E.A.D. and the Kenya data analyst analyses the data.

Learning from the Research and Follow-Up

As a pioneering pilot project in a comprehensive method of human rights monitoring, it was assumed that there would be much to be learned in the initial foray into a new developmental piece of research such as this. Perhaps the most surprising finding is how effective and efficiently the field work was organized, the environmental scans written, the data was collected, and the resulting richness of the field data. The collection and collation of the country systemic data by law students and the collaborative reporting on the disability movement by the disabled persons organizations provided a rich perspective to the study findings. Changes to the questionnaires, the organizational process, the capacity building of monitors and the data analysis have already been made and were in some cases put in place during the progress of the study. It is a genuine example of the best that can be predicted as we move into this new area of genuinely monitoring disability rights.

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