Chapter 3: Monitoring Individual Experiences

While it is important to ensure that governments protect, promote and fulfill the human rights of people with disabilities, D.R.P.I. recognized at the outset that it is also necessary to assess whether these systemic measures are creating actual improvements in the lives of people with disabilities. Built into the D.R.P.I. project is the understanding that monitoring of disability rights obligations should also include a way to assess the actual situation of people with disabilities in a given country or area.

D.R.P.I. calls this activity monitoring individual experiences and considers it an important part of a holistic approach to disability rights monitoring. A holistic approach is necessary to gain complete understanding of the human rights situation faced by people with disabilities. Collecting and analyzing the personal experiences of individuals with disabilities provides us with a way to know if the laws, policies and programs put in place by a country to promote, protect and fulfill rights have any real impact, whether positive or negative, on the actual lives of people with disabilities. It also allows us to examine the personal impact of the myths and stereotypes regarding disability that have been introduced, perpetuated and/or discredited by the media.

Monitoring individual experiences involves the collection of qualitative data through face-to-face interviews. People with disabilities are asked to tell their own story and identify the rights issues that are most important to them. Once collected, the individual stories are considered in light of the larger context (laws, policies, media portrayals) in which the individual with a disability (interviewee) lives.

The interviews are conducted by pairs of monitors who are people with disabilities themselves. The information provided by the interviewees is collected, transcribed, coded, analyzed and presented in a final report that is made widely available. National organizations of people with disabilities oversee the administration of these monitoring projects. Partnerships are fostered with academics from local universities and/or staff of national human rights institutions who can provide assistance with the coding and analysis of the individual monitoring interview data.

Getting Started

Choice of Countries

D.R.P.I. conducted research to identify appropriate countries to pilot the methodology and tools for monitoring the individual human rights experiences of people with disabilities and to build capacity to engage in this work in the future.

In order to ensure the use of D.R.P.I.'s monitoring methods and tools after the life of the project, it was decided that at least half of the pilot sites would be in countries with developing or transitional economies. In addition to such considerations, a set of criteria was developed and given priority as follows:

A suitable country would:

1. Have a large number of people with different types of disabilities. (priority: necessary)
2. Have one or more organizations of people with disabilities that could oversee the project and bring it to completion. The disability organization(s) should be interested in engaging in human rights work and be willing to commit to continued engagement with disability rights monitoring past the life of the project. (priority: necessary)
3. Be politically stable with laws, policies and programs that recognize and protect human rights. (priority: necessary)
4. Have a constitutional and judicial framework capable of credible administration of justice (priority: necessary)
5. Be party to major international human rights treaties, and relevant customary international law (priority: necessary)
6. Have English, Spanish, French or Swedish as a language that is commonly known by people with disabilities as these are the languages spoken by the D.R.P.I. Co-Directors and staff. (priority: desirable but not necessary provided that 4 or 5 principal local contacts for the project e.g. disability organization representatives, Project Coordinator, Lead Researcher speak one of these languages)
7. Be a country in which D.R.P.I. Co-Directors and Advisory Board have pre-existing strong relationships with members of the disability community. (priority: desirable but not necessary. Where all of the other criteria have been met, it is possible to develop these relationships during the life of the project).

The developing / transitional countries selected thus far are:

• Cameroon
• Croatia
• India
• Kenya

The developed countries selected so far are:

• Australia
• Canada
• Sweden

Partners, Management Committee and Personnel

Each pilot for monitoring individual experiences has been organized by the national and local organizations of people with disabilities involved in the project, with the technical support and assistance of D.R.P.I. No two projects have been organized and carried out in exactly the same manner, as each takes on the characteristics of their own area.

The following are the types of organizations and personnel who have been involved in most of the pilot projects:

Partner Organizations:

1. Either one national organization of people with disabilities with a cross-disability membership and mandate (N.D.P.O.) or, two to three national organizations of people with disabilities with disability-specific memberships and mandates that are willing to work together as a coalition (N.D.P.O. Coalition). Responsibilities of the N.D.P.O. or N.D.P.O. Coalition include: assisting with the establishment of the project Management Committee; nominating one or more representatives to the Management Committee; where possible, providing office space and infrastructure support to the project; generally overseeing the project and project staff (e.g. Project Coordinator, Lead Researcher), assisting with recruitment of monitors, field assistants and interviewees and assisting with the coordination and support of monitoring activities in that site; and committing to continue to engage in disability rights work in the future.
2. Local organizations of people with disabilities (L.D.P.O.s) with cross-disability membership and mandate located in each of the pilot's monitoring sites except the site where the N.D.P.O. or N.D.P.O. Coalition is based. Responsibilities of the L.D.P.O.s include: assisting with recruitment of monitors, field assistants and interviewees in their local monitoring site and assisting with the coordination and support of monitoring activities in that site.
3. One or more national universities. Responsibilities include: nominating a representative to the Management Committee; providing office space and infrastructure support for the Lead Researcher; providing access to library resources for systemic monitoring research, presenting at the training course regarding the local disability rights situation; providing credit or some recognition for student involvement in the project.
4. Disability Rights Promotion International (D.R.P.I.) offers technical knowledge and support regarding the organization and coordination of the project; provides the disability rights monitoring tool and the methodology for data collection and analysis; facilitates the training course for monitors and field assistants; supports the organization of the field work, the coding and analysis of data and drafting the report of the results.
5. Additional partners have included: international and/or domestic funding agencies, disability-specific and other social justice organizations and human rights institutions, where applicable.

Management Committee

Most of the key decisions that shape the nature and form of the individual pilot project are made by a local Management Committee. (See: Planning Decisions below). The Management Committee includes the following members:

• 1 representative from N.D.P.O. or each N.D.P.O. in N.D.P.O. Coalition
• 1 representative from university
• Project Coordinator (after he or she is hired)
• Lead Researcher (after he or she is hired)
• Additional members may be added to the Management Committee, with the agreement of the above members.

Also, the Management Committee may choose to establish a reference group of any size and composition that it considers appropriate.

Project Coordinator

Under the direction and with the assistance of the Management Committee and the support of D.R.P.I., the Project Coordinator is responsible for the day-to-day coordination of the project, including administration of the budget; recruiting monitors and field assistants; organizing the logistics of the training course; attending and assisting to facilitate the training course; coordinating, supervising and supporting monitoring in the field; establishing and maintaining systems to safeguard the confidentiality of data collected; overseeing data analysis, report writing and publication; coordinating dissemination activities; and drafting reports to funder(s), as required.

Figure 3: Project Partners, Management Committee and Personnel

Lead Researcher

Under the direction and with the assistance of the Management Committee and the support of D.R.P.I., the Lead Researcher is responsible for conducting the qualitative and quantitative analysis of the data collected and writing a report on the results of this research. As part of his or her duties, the Lead Researcher sits on the project Management Committee, coordinates the work of field assistants engaged in systemic research; organizes and supervises the translation (if necessary) and transcription of interview recordings; establishes and maintains systems to safeguard the confidentiality of paper, cassette and electronic interview records; codes the monitoring data and generates reports; and participates in a review of the research report by a consultative group.

Field Activities

Project activities (and the rough timeframes) are as follows:

1. Make Preliminary Planning Decisions (2 to 3 months)
2. Train Monitors and Others to Find Out the Experiences in the Field (7 days)
3. Find Out the Experiences - Conduct Interviews in the Field (2 to 3 weeks)
4. Analyze the Experiences and Write Report with Consultations (10 weeks)
5. Disseminate Results (throughout the project)

Make Preliminary Planning Decisions

While the scope of the project implemented in each country varies depending on available resources, the Management Committee is responsible for making a number of planning decisions at the outset. The following are some of the key decisions made:

Hire the Project Coordinator and Lead Researcher

Early on in the planning, the Management Committee hires the Project Coordinator and Lead Researcher who then sit on the Management Committee.

Determine Number and Location of Monitoring Sites and Collect Background Information

Number: The number of monitoring sites in the study country is decided, in part based on the available resources. Since these are pilot projects, it is not possible to conduct monitoring in all regions. To date, all of the pilots have had three monitoring sites.

Location: In each case, one of the monitoring sites is located where the N.D.P.O. or N.D.P.O. Coalition has its headquarters. The remaining two sites are decided by the management committee who has taken in to account such factors as:

• urban/rural
• types of disability
• languages spoken
• ethnic groups
• socio-economic groups
• existence of strong local disabled persons organizations
• ease of transport
• cost of transport accommodation

Background Data: Once the monitoring sites are selected, the Management Committee arranges for the collection of data to inform the writing of a background report (approximately 500 words) setting out the following information with respect to each site:

• land mass
• major religions
• languages spoken
• major cities - name, population
• major cultural and/or ethnic groups
• standard of living, poverty and unemployment
• major economic activities
• prevalence of different types of disabilities
• type of terrain - e.g. mountains, plains, etc.
• description of the disability community (e.g. the degree to which people with disabilities have organized to form organizations of people with disabilities)
• population

Enter Relationships with Local Organizations of People with Disabilities (L.D.P.O.s)

Once the monitoring sites are identified within the country, relationships are developed with local organizations of people with disabilities (LDPOs).

Draft Project Budget

The Management Committee develops a budget based on the total available funding. Drafting the budget is an ongoing activity during the planning period. It is important in each project that there is full participation of people with different types of disabilities, thus provisions for adaptations to training and interview materials, attendants, communication and mobility aides must be incorporated in the budget.

Determine Who Will be Interviewed

The number of people interviewed at each site is determined by the resources available and practical issues such as geographic accessibility and time constraints. A snowball sampling technique has been used, balancing for gender, age (+18), type of disability, socio-economic status and membership in disability organizations.17

Determine Number of Monitors per Site and Select Monitors

Monitors attend the training course, conduct interviews and attend project-related meetings.

Number: Monitors work in pairs allowing for mutual support. They take turns asking questions and verifying that all of the relevant information has been collected.

Criteria for Monitors: All Monitors are people with disabilities. The monitors live or have lived for a significant period of time in the monitoring site in which they are working so they are familiar with local languages, customs and transportation systems. On the whole, the pool of monitors is balanced on the basis of gender, age, ethnicity and type of disability.

Determine Others who will Work in the Field

In addition to Monitors, pilot projects involve Field Assistants and sometimes Aides when the project management committee decides that is the best way to proceed. The roles are varied and flexible.

Field Assistants: Field Assistants spend half of their time providing support and assistance as requested by the Monitors during interviews. Some of the ways they assist and provide support include: mobility support, assistance with travel arrangements and communications, note-taking, operating audio recorders, ensuring that no one interrupts the interview. Field Assistants devote the rest of their time to researching the systemic framework for disability law and policy in the pilot country. Given their research role, Field Assistants are, in many cases, university students, studying law, social policy or a similar discipline. They may or may not have a disability themselves but have a commitment to human rights and furthering the protection and promotion of the rights of people with disabilities. On the whole, the pool of Field Assistants is balanced on the basis of gender, age and ethnicity.

Aides: In addition to Field Assistants, Management Committees also employ Aides to assist during the Field Work. Aides provide additional assistance to Monitors as requested. Generally, they have acted as guides and provided mobility assistance. 

Sign Language Interpreters: Every deaf Monitor who uses sign language to communicate has sign language interpreters working with him or her in the field. In addition, sign language interpreters are used where those being interviewed require their services.

Obtain Government Approval for Field Work

In some pilot countries where official approval is required to conduct field work government authorities have been informed by the Management Team that monitoring will take place. While government approval is needed to proceed, it is emphasized to those being interviewed that the monitoring exercises are being conducted independent of governments. While governments are provided with study results, the information given by interviewees is kept private and confidential.

Plan Training Course(s) for Monitors and Others Working in the Field

Number of Courses: In the pilots thus far, all Monitors, Field Assistants and others involved have been trained during an intensive seven-day training course.

It would be possible to provide the same training using a country train-the-trainer model, having a centralized training course with representatives from each of the monitoring sites, followed by local training courses at each site in which the site representatives would teach the local Monitors what they had learned. This second approach may lead to the training of more Monitors in each monitoring country and lead to greater sustainability of monitoring activities into the future.

General Course Organization: The Management Committee is responsible for the organization of the course logistics such as: dates, venue (for sessions plus room and board for participants), translation (where necessary), transportation, opening and closing ceremonies, participation certificates and attendees in addition to Monitors, Field Assistants, Project Coordinator and Lead Researcher.

Cultural Considerations: The training materials and course agenda are reviewed to identify any cultural considerations that will affect the manner in which the subject matter is addressed. Attention is also paid to preferred learning styles in each country, for example, role plays, debates, singing, etc.

Disability-Specific Considerations: The course venue is fully accessible to all participants. In addition, all necessary adaptations are made to training materials, teaching techniques and learning styles to ensure full participation by all.

Adapting Monitoring Tool (Interview Guide) and Methodology

Monitoring Tool: In addition to the training materials, the Interview Guide used by Monitors to conduct interviews in the field is also adapted to suit local culture. These adaptations occur in a number of places in the training guide but have been particularly important in the demographics section of the tool where interviewees are asked certain questions in an effort to determine, among other things, their socio-economic status and level of education.

Monitoring Methodology: Consideration is also given to cultural issues that might affect the way interviews are scheduled and take place. As part of the training, there is careful discussion of issues, such as whether it is acceptable for a pair of male Monitors to interview a woman or whether it is appropriate for a Monitor to be, for example significantly younger than the person being interviewed. Strategies are then developed to anticipate and address these concerns in the field.

Train Monitors and Others to Find Out the Experiences in the Field

D.R.P.I. has developed and field tested several variations of the training materials and monitoring tool used during interviews to document the individual human rights experiences of people with disabilities. As might be expected, after each pilot, variations are made to take into account the feedback from the field. D.R.P.I. is working to create materials that are straight-forward and easy to use. At the conclusion of Phase Two, the monitoring tools and training materials will be published in multiple formats and be available on the D.R.P.I. website to be used by disability and other human rights organizations to monitor disability rights in the future.

Interview Guide

An Interview Guide has been developed for use by pairs of Monitors when interviewing individuals with disabilities. It includes both open-ended and semi-structured questions and is designed to gather information with respect to all categories of rights (civil, political, social, economic and cultural) and in relation to various general human rights principles (dignity, autonomy, non-discrimination, inclusion, respect for difference and equality). People with disabilities are asked to tell their own story and to identify the rights issues that are most important to them.

The Interview Guide was pre-tested in December 2005 and January 2006 in Canada, by a group of people with disabilities living in and around the city of Toronto and associated with three disability organizations: the Centre for Independent Living in Toronto (C.I.L.T.), the National Educational Association of Disabled Students (N.E.A.D.S.) and the Alliance for Equality of Blind Canadians (A.E.B.C.). To date, it has been used in Kenya in April and May, 2006 and in Cameroon in October and November, 2006. It will be used in Andhra Pradesh, India and Croatia in the spring of 2007 and in Canada in early fall of 2007.

Disability Rights Monitoring Training Course

In addition, D.R.P.I. has developed, field tested and revised accessible, clear language curriculum for a Training Course to prepare Monitors and Field Assistants to engage in monitoring the individual experiences of people with disabilities in the field. During this seven-day course, participants are:

• introduced to the human rights approach to disability in cooperation with people from the local region
• provided with technical instruction on the knowledge and skills needed to conduct interviews with people with disabilities in the field using the Interview Guide - including, for example, the importance of obtaining the free and informed consent of the interviewee, protecting the confidentiality of the information received, how to elicit detailed information, etc.
• encouraged to network and build solidarity both to facilitate working relationships in the field and to develop the basis for future monitoring collaborations between participating groups and individuals.

During the training courses, monitoring teams are provided with opportunities to practice their interviewing skills both though role-playing and conducting actual interviews.

Training Manual for Monitoring Individual Experiences

Participants at the training course are each given a copy of D.R.P.I.'s Training Manual for Monitoring Individual Experiences which provides accessible clear language information about disability rights generally, monitoring techniques, confidentiality in monitoring and how to work in the field. The Training Manual documents the information covered during the training course and provides a reference guide for Monitors once in the field and for others who attend the course.

Trainers's Manual

With a view to building the capacity of disability organizations and the sustainability of efforts to monitor individual experiences, DRPI has developed a Trainers' Manual that can be used by disability organizations to train others how to monitor in the future. In addition to all of the material contained in the participant manual, the Trainers' Manual includes visual aides to accompany the manual's text, teaching tips regarding ways to introduce and teach certain difficult topics; suggested activities (role plays, debates, discussion groups, etc.) to introduce and/or emphasize various concepts; and checklists summarizing key issues that the training is trying to achieve. This manual is based on past group experiences. Consistent with a train-the-trainer approach, the Trainers' Manual is designed to be used by people who have been involved in monitoring individual experiences previously to train others to do so in the future.

Finding Out the Experiences - Conduct Interviews in the Field

As soon as possible following the training course and before heading into the field, the Monitors and Field Assistants meet with the Project Coordinator to review procedures, ensure clear lines of communication and address any questions. Following this meeting, the monitoring teams begin conducting interviews. In most of the pilots, the collection of data has begun in the monitoring site where the National Disabled Persons Organizations or Disabled Persons Organizations Coalition was located and then subsequently rolled-out to the other sites. Interviewees are identified using a snowball sampling technique.18

Monitors and Field Assistants are asked to sign agreements in which they commit to conducting the interviews for a set period of time. Each interview takes approximately two hours to complete. Monitoring teams conduct no more than two interviews per day. Mid-way through the field work in each site, the Monitors and Field Assistants have a one-day meeting with the Project Coordinator to ensure that the field work is on track. Upon completion of interviews at all of the sites, a meeting is held with all Monitors and Field Assistants, at a central location, for the purpose of debriefing. In the pilots to date, the field work has been completed within 17 to 21 days.

Analyze the Experiences and Write Report with Consultations

As soon as possible after each interview, the Monitors transfer the relevant cassette recording and written notes to the Project Coordinator who gives them to the Lead Researcher. Strict confidentiality protocols are in place so that only the Project Coordinator can identify those interviewed. The Lead Researcher also maintains the confidentiality of the cassette tapes and other interview records according to an established protocol.

The Lead Researcher is responsible for overseeing the translation into a common language and transcription (into electronic format) of the interview tapes. He or she also conducts the data analysis. NVivo computer software is used to support qualitative data analysis. Transcribed interviews are imported into this program and coded using a coding scheme developed during the initial pilot projects19. Once coded, data is analyzed with a view to examine interviewees' experiences of systemic barriers and discrimination as well as access to human rights. Whenever possible, intersections between gender, type of disability and other socio-economic variables and the respondents' experiences are also explored. D.R.P.I. provides technical assistance throughout this process, offering requested support and feedback particularly with the tasks of interview coding, data analyses and reporting.

A report covering systemic issues as well as individual experiences is drafted by the Lead Researcher and the Project Coordinator as well as others involved in the project. The draft report is circulated among participating partner organizations for their feedback and comments. Added to the interview results are sections of the report outlining: background information on the monitoring sites (collected by the Management Committee during the planning stage); the systemic framework for disability laws and policy in the country (prepared by the Field Assistants), and a history of the disability movement in the pilot country (prepared by a partner N.D.P.O. or L.D.P.O.). Following extensive consultations and discussions, the report is finalized and disseminated.

Disseminate Results

The Management Committee, together with partner organizations of people with disabilities are responsible for developing a strategy to ensure that the information collected about the human rights situation of people with disabilities reaches a wide audience including: the media, government, other civil society groups, society at large and the international community.

Details of Pilot Projects

The following provides a picture of each pilot's status:

D.R.P.I. Kenya

Interviews have bee completed and recommendations for action are being prepared

Partners

• African Union of the Blind (A.F.U.B.)
• Kenya Union of the Blind (K.U.B.)
• Kenyan Centre for Disability Rights Education and Advocacy (C.R.E.A.D.)
• University of Nairobi, Faculty of Law
• Moi University, Faculty of Law
• Swedish Association of the Visually Impaired (S.R.F.)
• Swedish International Development Cooperation Agency (S.I.D.A.)

Monitoring Sites

• Nairobi (urban)
• Rift Valley (urban/rural)
• Nyanza (urban/rural)

D.R.P.I. Cameroon

Data collection is completed and data is being analyzed.

Partners

• African Union of the Blind (A.F.U.B.)
• Cameroon National Association of the Blind
• Cameroon National Association of Disabled Women
• Cameroon National Association of the Deaf
• Cameroon National Association of Lepers
• Cameroon National Association of the Physically Disabled
• Cameroon National Commission on Human Rights and Freedoms (N.C.H.R.F.)
• Swedish Association of the Visually Impaired (S.R.F.)
• Swedish International Development Cooperation Agency (S.I.D.A.)

Monitoring Sites

• Menoua Division (rural)
• Bamenda (urban)
• Yaoundé (urban)

In its work in Kenya and Cameroon, D.R.P.I. joined efforts with the Swedish Association of the Visually Impaired (S.R.F.) and African Union of the Blind (A.F.U.B.)'s Disability and Human Rights Project in Africa. This partnership has permitted D.R.P.I. to facilitate individual monitoring pilot projects in two African countries.

D.R.P.I. India

Preparations for field work are in progress. Training is planned for Spring, 2007.

Partners

• Swadhikaar Center for Disabilities Information, Research and Resource Development
• Asmita Resource Centre for Women
• NALSAR School of Law
• National Institute for Mental Handicap
• Swedish International Development Cooperation Agency (S.I.D.A.)

Monitoring Sites

• 3 monitoring sites - all located in Andhra Pradesh State

D.R.P.I. Croatia

Preparations for field work are in progress. Training is planned for April, 2007.

Partners

• Croatian Association of the Blind (C.A.B.)
• Croatian Union of Associations of Persons with Disabilities (S.O.I.H.)
• Croatian Union of Physically Disabled Persons Association (C.U.P.D.P.A.)
• University of Zagreb
• Swedish International Development Cooperation Agency (S.I.D.A.)

Monitoring Sites

3 monitoring sites - located throughout the country

D.R.P.I. Sweden

Preparations for field work are in progress. Training is planned for Spring, 2007.

Partner

• Swedish Disability Federation (H.S.O.)

Monitoring Sites

The number and location of monitoring sites are not yet determined. This pilot study is part of a larger human rights project run by the Swedish Disability Federation (H.S.O.).

D.R.P.I. Canada

Preparations for field work are in progress. Training is to begin September, 2007

Partners

• Amnesty International Canada
• Canadian Association of Independent Living Centres (C.A.I.L.C.)
• Canadian Social Sciences and Humanities Research Council (S.S.H.R.C.)
• Centre for Independent Living - Toronto (C.I.L.T.)
• Centre for Interdisciplinary Research in Rehabilitation and Social Integration (C.I.R.R.I.S.), University of Laval
• Council of Canadians with Disabilities (C.C.D.)
• DisAbled Women's Network - Ontario (D.A.W.N. Ontario)
• Equitas
• York University
• University of Victoria

Monitoring Sites

• Winnipeg, Manitoba
• Toronto, Ontario
• Québec City, Québec
• St. John's, Newfoundland

D.R.P.I. Australia

Preliminary planning is taking place.

Partners

• Australian Federation of Disability Organizations (A.F.D.O.)
• Communication Rights Australia (C.A.U.S.)
• La Trobe University
• Victoria Office for Disability

Thus far, D.R.P.I. has had enthusiastic participation from disability organizations and people with disabilities in all of the pilot countries. The leading roles played by people with disabilities in all aspects of project governance and implementation have been important in securing cooperation with the disability community and prospective interviewees with disabilities. The links created with human rights academics and policy makers have served to increase awareness of disability as a human rights issue and promise to contribute to the sustainability of disability rights monitoring efforts into the future. The data collected has been rich and informative.

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