Section 1.3 - Monitoring the Rights of Persons with Disabilities

1. What is Monitoring?

In technical terms, monitoring is the active collection, verification, and immediate use of information to address human rights problems. Human rights monitoring includes gathering information about situations, observing events, visiting sites, and holding discussions with government authorities to obtain information and to pursue remedies.

In other words, ‘monitoring’ means finding out what is going on in people’s lives by:

• finding facts
• asking questions
• collecting a lot of information in one place to show what is happening
• finding ways to measure if anything is changing (using indicators)
• measuring progress toward justice for persons with disabilities
• tracking information

DRPI’s approach is to look at issues that matter to persons with disabilities and that impact their human rights. We want to develop the best possible evidence to support the move towards persons with disabilities achieving their rights. Below is a list of the main ways in which that DRPI tracks or monitors disability rights.

(a) Tracking (monitoring) Individual Experiences

• Through interviews or focus groups, stories are collected about when persons with disabilities have faced barriers and challenges. People are asked to tell their own story about when they have been left out, treated badly or prevented from participating because of their disability. These stories give us information about the real human rights situation faced by persons disabilities.
• Sometimes, persons with disabilities do not think it will make a difference to report the mistreatment or exclusion they experience. Sometimes people may fear that they will face more abuse if they tell about these things. The reality is that documenting and reporting individual cases of mistreatment and abuse that happens both out in society and within the family and other private settings, is important because it raises awareness and can lead to changing those conditions. The information may also uncover what is really going on and make it difficult for governments to claim that rights are being respected when they are not.

(b) Tracking (monitoring) Systems (laws, policies, programs and services)

• Laws and policies are reviewed and measured against United Nations standards to see whether they meet a country’s obligations to respect, protect and promote’ human rights. Since laws and policies can appear to protect human rights but be used in ways that create inequality and violate the human rights of persons with disabilities, the ways in which laws operate is carefully reviewed and recorded.
• Legal cases and decisions are sometimes just as important as the written laws and regulations of a country when promoting human rights. A law can say one thing but be interpreted by courts and tribunals in a different way, making a big difference in the exercise of rights by individuals and groups.
• Government programs, services and practices often have a large impact on the daily lives of persons with disabilities. Documenting programs, services and practices that violate human rights – either directly or indirectly – provides evidence for the need to make changes.

(c) Tracking (monitoring) Attitudes

• Societal attitudes and public opinion have a big impact on the exercise of rights by persons with disabilities. One way of finding out about attitudes is to look at the media, which both reflects and plays an important role in influencing public opinion. Media plays a large part in how people around the world think about persons with disabilities and about disability issues generally.
• Monitoring social attitudes involves looking at and finding patterns in the way that disability is described and covered in print, broadcast and internet-based media to uncover social attitudes about disability and persons with disabilities. This information is then used to better understand individual rights experiences and systemic measures (laws, policies, programs and services) and determine what changes could be made to combat negative stereotypes and prejudice.

2. What makes DRPI’s approach to monitoring unique?

There are a number of ways that Disability Rights Promotion International’s approach to monitoring the rights of persons with disabilities is unique. The following aspects of the DRPI approach are important to highlight:

• It uses a holistic approach (that is, it tracks disability rights in more than one way and brings the information together)
• It puts persons with disabilities in the lead in monitoring
• It considers human rights principles when assessing the specific rights
• It recognizes that disability rights monitoring has to be an ongoing, long term process

(a) Using a Holistic Approach

Each of the ways of monitoring or tracking disability rights – individual experiences, systems and societal attitudes - gives us important information about the rights situation faced by persons with disabilities. Monitoring in any one of those three areas alone is not enough to give us a complete picture. A holistic approach that monitors the three areas independently and then pulls together all of the findings provides a better understanding of the reality facing persons with disabilities. It also provides a way of knowing how various issues relate to one another. A holistic approach recognizes that the discrimination and isolation of persons with disabilities is complicated, widespread and often ignored.

The three ways of tracking disability rights gives us an idea of the nature and scope of a global disability rights monitoring project by recognizing that there are many different areas to examine. We collect information at the local, national and regional level to come to a global understanding of what is happening to persons with disabilities around the world.

A holistic approach to disability rights monitoring

To improve the human rights record for persons with disabilities is a complex task that involves a global picture that comes from persons with disabilities themselves, but must also be recognized and addressed by governments, in universities, by the public and in the general community.

(b) Ensuring Persons with Disabilities are in the Lead

When research is conducted on persons with disabilities there is little or no representation or involvement in planning, administration or implementation stages by persons with disabilities themselves. Nothing about us without us is more than a slogan for DRPI – it is the primary driving force and end goal in any monitoring. The right to take a lead role in monitoring that is about the disability community or about persons with disabilities is a fundamental feature of the UN. The structure, organization and design of DRPI monitoring projects is grounded in, and based on, partnerships and the involvement of disabled people’s organizations (DPOs) and persons with disabilities. DRPI started that way and every step and stage of its development is based on that engagement. This ensures that decision-making rests with persons with disabilities in an ongoing and sustainable way.

(c) Using General Human Rights Principles in DRPI Monitoring

DRPI uses five general human rights principles found in the UN and discussed earlier, to provide guidance about how each right should be understood and applied.

These five general human rights principles are:

• Dignity
• Autonomy
• Participation, Inclusion and Accessibility
• Non-discrimination and Equality
• Respect for Difference

Rather than simply recording what services are available for persons with disabilities in a given country, or what a government has promised to persons with disabilities, these five principles provide a clear way of measuring whether rights are being respected and put in place in a meaningful way.

These principles allow monitors to not only record that a service is being provided but to go further to see the way in which it is being provided. For example, not just recording whether a person has some form of housing or food but looking further to see whether the person can choose the type of housing and food that they want (respecting autonomy) and whether the house has a roof that does not leak and the food is healthy (respecting dignity).

The general human rights principles also provide a global measure to compare and contrast what is happening in different countries and regions of the world.

(d) Recognizing Disability Rights Monitoring as an Ongoing Process

A goal of monitoring is to be sustainable so that the population of persons with disabilities and disabled people’s organizations are able to gather evidence-based information about disability rights in an on-going process.

Monitoring is not a one-time audit, but an ongoing process of collecting information; adding to it and discovering if changes are taking place. To be effective, monitoring must continue over time. The first time that monitoring information is collected provides a starting point for identifying changes that need to be made to improve the enjoyment of all rights by all persons with disabilities.

It is only by monitoring again, after some time has passed, that it is possible to find out whether the situation has improved or become worse. Is the situation better than 5 years ago? Is it heading in the right direction? Do people feel they are less discriminated against? Are the laws and policies being implemented as promised? Is the disrespect of people’s dignity being addressed? Is new technology being designed that supports the exercise of rights? Are the outcomes of changes making people’s lives better? Are services being designed in ways that respect dignity, autonomy, equality?

People who experience discrimination have to answer these questions and analyze their own situation. They are the experts on their lives. As people become empowered to view themselves as rights-holders, it becomes obvious that it is important it to continue to monitor, track and seek penalties for abuses and social change.

Monitoring needs broad engagement. It is a long road to track disability rights and to make positive changes. But each step of the way is positive and can be built upon for the next phase or gaining rights.

DRPI’s monitoring projects are designed to be sustainable so that persons with disabilities and disabled people’s organizations are able to gather, on an on-going basis, evidence-based information about disability rights. Costs are kept low and monitoring capacity is built and fostered so that monitoring activities, led by persons with disabilities and their organizations, are able to continue into the future.

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