Chapter 3: Creating Monitoring Tools for People with Disabilities

Overview

To effectively engage with the international and regional human rights systems, reliable data is needed to document the human rights situations of people with disabilities. The development of systematic measures to monitor respect for human rights is a key aspect of enforcing those rights. This chapter draws on a variety of human rights monitoring tools that are currently in use at national and international levels. The purpose of this examination is to outline the types of information gathered, to provide examples of the tools used, and to identify specific monitoring tools that could serve as a resource for designing disability rights monitoring tools.

Monitoring has been described as a broad term involving the active collection, verification, and immediate use of information to address human rights problems69 Human rights monitoring includes gathering information about incidents, observing events, visiting sites and holding discussions with government authorities to obtain information and to pursue remedies.70 Attention is focused primarily on the reality of people’s lived experiences, rather than simply assessing the protection provided in written laws and assuming its effectiveness.

Many of the monitoring tools reviewed for this report are forms or strategies designed and implemented by non-governmental organizations (N.G.O.s). Despite their excellent work, most human rights N.G.O.s do not specifically monitor the human rights of people with disabilities. This omission underscores the urgent need to build capacity and design resources for disability rights monitoring. Working from the recommendations of the Almåsa Seminar, D.R.P.I. aims to facilitate monitoring in five areas of focus: individual violations of disability rights, legislation and legislative frameworks, case law, government programmes and practices, and media imagery and coverage. It is important to note once again that these are not discrete categories and will overlap in many instances. The areas of focus provide guidance on the scope of monitoring needed and prioritize key areas.

A Survey of Human Rights Monitoring Tools

Direct reference to international human rights law as the primary guide for monitoring work is essential. Monitoring tools are used as an aid and should be developed with reference to relevant treaties and other human rights instruments. Monitoring tools for documenting human rights violations can be divided into two types: those that are designed to assemble information regarding situations or experiences of a particular individual or group (referred to as individual case assessment tools), and those that are designed to assess and compile information on the progress of government compliance with various human rights treaties (referred to as system assessment tools).

Individual case assessment tools may include various types of questionnaires, complaint forms, and interviews. System assessment tools may include guidelines that spell out the requirements of various human rights treaties and questionnaires designed to measure the steps being taken by governments to live up to their U.N. human rights treaty commitments. Both individual case assessment tools and system assessment tools will be reviewed below.

1) Individual Case Assessment Tools

The individual case assessment tools reviewed for this study include resources which are used to determine whether or not a violation has occurred and/or gather detailed evidence for complaints, as well as interview tools for conducting interviews with people alleging human rights violations. It is important to note that monitoring individual cases assists in identifying trends in violations which might indicate systemic discrimination and suggest the need for solutions that protect the rights of all people with disabilities rather than remedying the individual violation in isolation.

Preliminary Assessment of Human Rights Violations

National human rights institutions, established to investigate and resolve individual complaints of discrimination, have useful models of preliminary assessment tools. National human rights institutions can be an effective link between international human rights law and its implementation in national law and practice.71 These institutions generally have a mandate to monitor the human rights situation, make recommendations for changes in law and policy, and receive complaints which are resolved either with recommendations or mandatory decisions. This work may include enforcing non-discrimination provisions that prohibit discrimination, for example, on the basis of physical and mental disability, in areas such as access to goods, services and facilities, commercial premises, employment and employment related activities.72 The types of monitoring tools used by national human rights institutions could be applied to monitor the rights guaranteed in international human rights law.

The intake questionnaires for the Canadian Human Rights Commission and the South African Human Rights Commission provide examples of the type of information used to make an initial assessment of an alleged human rights violation.73 A questionnaire from the World Organization Against Torture74 requests similar information. The information gathered through these individual case assessment tools includes:

• where and when the incident occurred and whether or not the incident is still occurring;
• whether there were any witnesses;
• an explanation of what happened and of the actions considered to be discriminatory (particulars are required such as dates, names of persons, places, etc.);
• why the person believes that she/he has been discriminated against;
• actions taken to deal with the problem such as a complaint to another agency;
• the remedy being sought;
• whether other people have been treated similarly and for the same reason; and
• any documentation related to the case.

Where legislation directly addressing disability discrimination is in place, there may be individual case assessment tools specifically for disability complaints. For example, the Disability Rights Commission (D.R.C.) in the United Kingdom, an independent body established by the government to secure the civil rights of people with disabilities,75 assists individuals with disabilities who believe that they have been discriminated against contrary to the Disability Discrimination Act.76 The D.R.C. has developed two assessment guides to aid people in determining whether they have encountered discrimination prohibited by the Act and whether or not there is a basis for a complaint.77 The guides relate to employment and to goods, facilities, and services. Fairly straightforward, these guides focus specifically on disability-related discrimination and make some preliminary inquiries to determine the need for further investigation. The main issues addressed by the guides are:

• whether the person with a disability was treated less favourably than others;
• whether an employer or service provider failed to make a reasonable adjustment to meet the needs of the person with a disability; and
• whether the employer or service provider had a reasonable justification for the failure to meet the needs of the person with a disability.

These resources – the human rights commission intake questionnaires and the D.R.C. assessment guides – are examples of accessible monitoring tools. They ask fairly straight forward questions and are not detailed or overwhelming forms. While some law-related terminology is used, the questions form a brief outline for individuals to provide a narrative description of the incident and the key details needed for a preliminary assessment.

Interview Tools

In addition to forms completed by people who have experienced human rights abuses, detailed information, gathered by an interviewer, can provide more thorough documentation of violations. The U.N. Training Manual on Human Rights Monitoring78 provides detailed recommendations for conducting interviews to compile data on human rights violations. The central considerations when conducting interviews are the safety of victims and witnesses, sensitivity to cultural differences, confidentiality, effective questioning, and recording and verifying the information. The manual offers concrete steps for the interviewer to adequately address these considerations. Some guidance is offered for interviewing members of “special groups” such as victims of torture, women, refugees, children, rural populations, indigenous communities, and lower-income groups. While some of this advice for special groups may apply to people with disabilities, no specific advice is given for interviewing people with disabilities.

The manual provides an incident report form which focuses on recording personal information, summarizing the facts of the incident and recording details such as places, dates, times, and descriptions of perpetrators.79 The form focuses on a single witness who has either experienced a violation of rights or who has information pertaining to an incident. The form also provides further specific questions relating to arrest and torture. The incident report form and the detailed section on interviewing techniques are excellent resources for in-depth information gathering.

H.U.R.I.D.O.C.S. (Human Rights Information and Documentation Systems, International) has developed widely used tools for documenting of “events” that actually or possibly involve human rights abuses. H.U.R.I.D.O.C.S. focuses on facilitating human rights documentation with the aim of improving access to public information on human rights by improving methods and techniques of monitoring and information handling. To achieve its goals, H.U.R.I..D.O.C.S. offers seminars on human rights monitoring and information handling and develops tools for recording and exchanging information. The two tools for documenting human rights events are the Revised Events Standard Formats and the Micro-thesauri.80 The Revised Events Standard Formats standardize terminology and the types of information to be gathered to assist in documenting human rights-related events and in designing databases, and to facilitate the exchange of information among organizations. The formats organize information recorded about victims, sources of information, alleged perpetrators, relationships among persons and groups involved, and interventions. The Micro-thesauri are 48 short lists of terms to be used in specific fields in the standard formats. They provide guidance in using the standard formats by listing H.U.R.I.D.O.C.S. index terms, guidelines for recording the names of persons, violations typology, types of acts, geographical terms, etc.

Summary of Key Findings Regarding the Use of Individual Case Assessment Tools

The review of available individual case assessment tools reveals many common elements to be considered when monitoring human rights:

• Questionnaires and interviews can be useful to collect and compile data for monitoring human rights concerns. These tools should attempt to be thorough while allowing opportunities to record information shared by the witness that goes beyond the answers to specific questions asked by the interviewer. The tools must also be respectful of the individual who is disclosing sensitive information and who is possibly vulnerable to reprisals. Clear protocols and ethical guidelines should be developed to fully address all safety issues relating to the security of people reporting human rights violations and to the security of witnesses.
• Documentation of the facts associated with the human rights infringement should be as precise and detailed as possible and generally include the information listed above in the review of sample monitoring tools.
• Where an interviewer is collecting information, she/he must be adequately trained, well informed, organized, objective, and sensitive to linguistic and cultural differences. The interviewer must also be well informed about the risks and benefits of asking people to tell their stories and about the political and social issues that may be triggered by an investigation.
• For the purposes of reporting and compiling information, consistent and accessible language should be used to enable consistency and comparability.

2) System Assessment Tools – Monitoring Legislative Frameworks, Case Law, and Government Programmes and Practices

Individual human rights violations occur in a social context, a context that can often support the systemic abuse of the rights of people with disabilities. This section reviews system assessment tools – tools that are not designed to record information about individual cases, but to assess and compile information on the larger social context and the progress of government compliance with various human rights treaties. These tools primarily measure the extent to which laws respect international human rights. Given the potential scope and magnitude of assessing legislation, as well as government programmes and practices, devising an assessment tool that is effective and appropriate could be an onerous and complicated task. However, some useful initiatives have been taken, several in the area of women’s rights and also in analysis of legislation, which may serve as a foundation for developing a disability rights tool.

The system assessment tools reviewed for this study include tools designed to assess the implementation of specific treaties and international agreements as well as investigative research methods used by many human rights N.G.O.s.

Assessing the Implementation of Specific International Agreements

The C.E.D.A.W. Commentary and Guidelines, referred to in Chapter 2, is part of a more comprehensive assessment tool: The C.E.D.A.W. Assessment Tool,81 a resource for detailed reporting on compliance with the C.E.D.A.W. treaty. A major goal of this tool is to draw attention to the most critical deficiencies with respect to advancing women’s equality in general and implementing the objectives of the Convention specifically.

The C.E.D.A.W. Assessment Tool is composed of two kinds of assessments: (1) a review of laws to assess the extent of legislated human rights protection and (2) personal interviews with groups and individuals to determine the day-to-day impact and effectiveness of such laws. The review of laws assesses how closely a country’s legislative regime meets the requirements of C.E.D.A.W. The Assessment Guide recommends that this component of the assessment tool be completed by an experienced assessment team in collaboration with locally based legal experts, preferably some with experience in women’s rights. The interview component contains numerous questions directed at women’s real life experiences in a particular country. The questions present a spectrum of issues to be canvassed in interviews with respondents. It is a more complex assessment as it involves conducting a minimum of 30 interviews. The authors suggest interviewing human rights N.G.O.s, women’s rights N.G.O.s, government officials and ministries, trade unions, media representatives, law enforcement officials, judges, prosecutors, law professors, bar association members, social workers, and individuals working at women’s health clinics and reproductive health organizations.82 The assessment tool offers some thoughtful guidance on how to go about ensuring a diversity of interviewees.

The Landmine Monitor Research Guide83 is a resource prepared to assist researchers and editors producing reports on the implementation of the Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and On their Destruction.84 The research guide provides an overview of research standards and methods and then lists questions under three main topics: banning antipersonnel landmines, humanitarian mine action, and landmine victim/survivor assistance. The questions identify implementation benchmarks and outline a series of questions related to each benchmark. In the topic on landmine victim/survivor assistance, a section on “disability policy and practice” includes questions about disability laws, health and medical services, pensions for people with disabilities, and support and services for landmine victims/survivors. The research guide also includes a style guide to assist researchers in presenting the information they have gathered.

There are several system assessment tools that are models for examining written laws at the national level. An assessment of the content of laws can highlight gaps in legal protection and failures to implement international human rights. This legal assessment, in combination with individual assessment tools which attempt to measure the impact of legal protections, can provide significant information on the human rights situation of people with disabilities.

A study analyzing national anti-discrimination laws was undertaken by the European Roma Rights Center, INTERIGHTS, and the Migration Policy Group. In 2002, they published a comparative analysis of national anti-discrimination laws in 15 European Union member states and 11 candidate countries.85 Questions were devised to measure the implementation of the provisions of the European Union Directive implementing the principle of equal treatment between persons irrespective of racial or ethnic origin86 and of Protocol No. 12 to the European Convention on Human Rights87 which will broaden the anti-discrimination protection provided in the Convention. After gathering information from individual countries and preparing national reports, the national results were compared to provide an overview of the implementation of each article in the 26 countries.

Another model for evaluating national legislation is a “human rights audit”, a model that emerged from advocacy work to monitor human rights protections associated with HIV/AIDS. The HIV/AIDS human rights audit88 has been devised to assess the legal implementation of the requirements of the International Guidelines on HIV/AIDS and Human Rights.89 The Guidelines set out concrete legislative and other measures that could be taken at the national level to protect human rights in the context of HIV/AIDS. While the HIV/AIDS Guidelines are very specific, and thus more easily implemented than many of the provisions in international human rights treaties and more easily subjected to accountability and measurement tools like a human rights audit, the audit is a useful example of quantifying human rights compliance. The HIV/AIDS audit offers a framework for reviewing national laws. The audit consists of ten indicators, including: public health, criminal laws and transmission offences, anti-discrimination, privacy and confidentiality, sexual offences and the sex industry, prisons, employment, equality of legal status and protection of vulnerable populations, regulation of health professionals and ethical human research, and therapeutic goods. Five questions are specified for each of the ten indicators. These questions focus on the content of various laws to determine the legal protections provided for in reference to the specific recommendations of the Guidelines. The responses are scored to evaluate the level of implementation of the Guidelines.

As noted earlier in this report, Inclusion Europe initiated a documentation project to gather information on the human rights situation of people with intellectual disabilities in Central and Eastern Europe. The primary research tool was based on the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Sources of information included statistical data, publications and legislation, and interviews with government representatives, people with intellectual disabilities, family members of people with intellectual disabilities, and with disability organizations. The research results were compiled into country reports which provide evidence of human rights violations experienced by people with intellectual disabilities in the countries examined and also indicate the progress in implementing the Standard Rules.90

Investigative Research Methods

Many human rights N.G.O.s often do not employ a tool or assessment guide as such. While guided by international human rights law, monitoring may be based more on a form of rigorous investigative journalism and expertise on the particular country or particular human rights issue that is the focus of the investigation. Human Rights Watch and Amnesty International, for example, use these kinds of methods in monitoring of civil and political rights. Mental Disability Rights International uses a similar method, investigating a particular situation primarily through interviews and employing experienced researchers knowledgeable in the issues and skilled in cross-cultural communication. Using this type of method, the resulting reports describe patterns of violations, with individual cases as examples, and recommend changes in law or policy and practice.

Other System Assessment Tools

In addition to the system assessment tools mentioned above such as audits, standard forms, checklists, and investigative interviews, relatively new methods of monitoring economic, social and cultural rights are using statistics and budget analysis to gather information on State compliance with human rights obligations.91 U.N.I.F.E.M.’s Gender Responsive Budget Analysis is an example of how budgets can be analyzed to focus on the rights of a particular vulnerable group.92 This analysis reviews the actual government expenditure and revenue on women and girls as compared to men and boys and specifically links the distribution, use, and generation of public resources to the human rights commitments of the Convention on the Elimination of All Forms of Discrimination Against Women.

Guidelines and checklists highlight relevant issues for development organizations and development programmes.93 The movement supporting a right to development which has placed development issues more squarely in a human rights framework. More attention is now devoted to the need for a rights-based approach throughout international development work. Similarly, with growing attention on the human rights conduct of private enterprise, particularly transnational corporations, human rights checklists have been developed for businesses. 94

Summary of Key Findings Regarding the Use of System Assessment Tools

• The C.E.D.A.W. Assessment Tool highlights the need to assess both written laws and the day-to-day impact and effectiveness of laws to get a more complete picture of the extent of human rights implementation.
• Assessing legal protections using a particular human rights instrument as a benchmark can focus the research and provide the framework for the development of a human rights audit.
• The examples of monitoring tools for analyzing legal protections may also be useful models for assessment of government programmes and practices.
• Some degree of standardization of human rights documentation methods and information handling assists comparative analysis, identification of trends and patterns of abuses, and information sharing.
• Statistics and budget analysis can be used to evaluate compliance with economic, social and cultural rights.

3) Media Monitoring

Research did not reveal monitoring tools such as questionnaires and assessment guidelines that specifically measure positive human rights practices by the media or human rights violations related to the media. However, information on media awareness campaigns and monitoring initiatives that track aspects of media reporting are available. These examples, along with examples of academic research on the media and disability, provide some ideas on media monitoring activities and research that could be useful for identifying positive practices as well as myths and stereotypes perpetuated by media portrayals of persons with disabilities that have an impact on human rights.

Media Awareness Campaigns and Monitoring

MediaWatch is an organization established to monitor medial portrayals of women and to register complaints with appropriate regulatory bodies where such portrayals foster negative myths and stereotypes about women.95 Its work provides some examples of effective media awareness and monitoring strategies. MediaWatch promotes change by educating media industries, government and the public, conducting research, and encouraging consumer advocacy. They have an online complaint form for complaints to media regulatory bodies.96 The form requests information on the type of media image, its source, the time and date that it was seen or heard, and a detailed account of the concerns about the particular media image. MediaWatch has also developed public education resources aimed at fostering a critical approach to media from a feminist perspective.

Among past MediaWatch activities was a “global media monitoring project”.97 Hundreds of individuals and various types of organizations in over 80 countries volunteered to participate in an international day of media monitoring using specially prepared research tools. On a specific day, volunteers from around the world used the research tools to monitor news media (television, radio and newspapers) for the representation and portrayal of women.

Media Research

Media issues have become an academic field of study in many universities and educational institutions. There are many active organizations concerned with media issues – from access, to content, to ownership, and more. However, there has been little research or advocacy in the area of media and disability. A few studies which have focused on disability rights provide examples of the type of media research that could be undertaken to provide data for a human rights assessment. News Coverage on Disability Issues,98 a 1999 study by the Center for an Accessible Society, examined mainstream American media to determine who is providing information about disability to the news media and what kinds of specific topics about disability are covered. The Asian Media Information and Communication Centre has produced an unpublished study on the role of media in addressing disability issues in India, China and Japan.99 Disability organizations interested in media issues, media organizations, and academic researchers in disability studies and media studies could undertake similar studies.

Summary of Media Monitoring Tools

• Several aspects of media coverage can provide information for a human rights assessment, including:
  • tone and content of media images, including the portrayal of people with disabilities
  • the extent of discriminatory or stereotypical images
  • the sources of disability information used by media
• With adequate information about complaint processes, media consumers and grassroots organizations can independently file complaints and could cooperatively monitor media sources for a broader assessment of disability issues in the media and for best practices in positive disability reporting.
• Given the lack of information on media and disability, there are many opportunities for monitoring projects and research studies in this area.

Key Concepts Essential to Effective Monitoring of Human Rights, Including Disability Rights

From this examination of the work of numerous human rights organizations involved in human rights monitoring, several conclusions can be drawn. Based on a sampling of human rights N.G.O.s including Human Rights Watch, Amnesty International, N.G.O. Group for the Convention on the Rights of the Child, The World Organization Against Torture, The European Baptist Federation, The International Helsinki Federation for Human Rights, the Lawyers Committee for Human Rights, Physicians for Human Rights, and the Human Rights Project of Disabled People’s International – Europe and Disability Awareness in Action, the following factors have been identified as important considerations when engaging in human rights monitoring, including disability rights monitoring:

• The effectiveness of monitoring activities depends on credibility, and credibility depends on a meticulous and scrupulously thorough method of collecting facts about an alleged violation.
• Effective monitoring requires a strong and extensive network of trained and committed staff and volunteers.
• Expertise in human rights standards is needed to be able to observe a situation and assess to what extent it amounts to a violation of human rights.
• Forging links with other human rights N.G.O.s and human rights supporters enhances the strength, credibility and productiveness of monitoring activities.
• Effective reporting based on human rights monitoring usually mixes illustrative, individual cases with a synthesis of the patterns of violations, followed by succinct recommendations about how government should change their law, policy, and practices.
• Well-organized publicity campaigns are needed to give profile and visibility to the monitoring activities, to expose the harmful effects of human rights violations and to secure public support for their eradication.
• Some ongoing co-ordination and support (perhaps in the form of staff) may be needed to oversee the day-to-day operations of monitoring.
• Mounting fact-finding missions, conducting detailed research, and launching publicity campaigns requires some financial resources. The more widespread and in-depth the work, the greater the need for financial resources.
• Communication techniques must be timely, efficient and precise.
• Effective monitoring requires well-designed data collecting tools.
• Monitors must be objective and impartial in their investigations. Some organizations argue that the only way to preserve independence and integrity is to refuse to accept government funding for monitoring activities.
• Cultivating media interest is an important component in exposing human rights violations.
• The knowledge and experience of local/grassroots groups can be a valuable resource in determining effective strategies and solutions.
• Educational resources such as websites, speakers, brochures and pamphlets, activity reports, audio visual productions, and regular communication organs can help to inform those who have experienced human rights abuses and their abusers about monitoring activities.
• Investigations and fact-finding missions must be conducted carefully to protect the security of both the witness and the human rights monitor.
• Comprehensive training is needed to provide staff and volunteers with the knowledge, skills and expertise required to carry out data collection, investigations, disclosures of abuse, resolution of abuse, etc.

top