Topic 3.2 – Module 1 – What Makes DRPI’s Approach to Monitoring Unique?

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DRPI uses a holistic approach.  This means it tracks disability rights in more than one way and brings these various ways of tracking information together. DRPI puts persons with disabilities in the lead, and it uses human rights principles when measuring specific rights.

Finally, DRPI recognizes that disability rights monitoring has to be an ongoing, long term process.

The key features of DRPI monitoring are that:

  1. It uses a holistic approach by tracking disability rights in more than one way and brings the information together.
  2. It puts persons with disabilities in the lead in monitoring.
  3. It considers human rights principles when assessing the specific rights.
  4. It recognizes that disability rights monitoring has to be an ongoing, long term process.

Holistic Monitoring

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.

Holistic approach diagram shows three circles - one representing Monitoring individual experiences (what people with disabilities tell us about their lives); one reprepresenting monitoring systems (what governments have or do not have on their books to protect, promote and fulfill the rights of people with disabilities) and one representing monitoring media (what the media says about people with disabilities). The Holistic approach is where the three circles (three types of monitoring) overlap.

Using a Holistic Approach

Nothing About Us Without Us Logo
Ensuring Persons with Disabilities are in the Lead

Improving the human rights of persons with disabilities is a complex task. It involves creating a picture of what is going on in many countries by collecting information from different countries. The lives of people with disabilities are often very similar in different countries because they are often excluded and left out of their communities. To change this situation we need people with disabilities to share their experiences. We also need to gather information about the country, the government, and the general community.

When research or information gathering is conducted ON persons with disabilities there is often 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 people with disabilities and DRPI- it is the primary driving force and end goal in any monitoring.


Taking a lead role in monitoring is about the disability community.  Persons with disabilities are a fundamental feature of the CRPD and of the monitoring that DRPI does. 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.


Video: Welcome Video from DRPI

Watch this welcome video from DRPI Co-Director Bengt Lindqvist discussing how DRPI originated and how he got started in the disability movement. Think about your personal experiences and why you got involved/would like to get involved in disability monitoring movement. Why is monitoring the rights of people with disabilities important to you?

Video Summary

DRPI Co-Director Bengt Lindqvist discussing how DRPI originated and how he got started in the disability movement.

For a reminder on how to turn on AMARA close captions, visit the FAQ page by clicking here (Question 9).

Transcript of Video

Dear participants, welcome to this training organized by DRPI. I am very happy that so
many of you have come and we have great expectations as to what will happen and about your contribution
to this training seminar.
Let me look back a little bit, you know I am an old man by now and I was involved in
disability policy already in the late 1960s. A sociologist, Robert A. Scott, wrote a book
with the title, The Making of Blind Men, where he showed how people with disabilities, like
no other group in society, are in the hands of experts, of doctors, nurses, social workers,
teachers and also by their family and relatives, and that though, the values that these people
have, to a very large extent, form the lives of people with disabilities.
When awareness grew about this phenomenon, of course we ourselves said that we must catch
more influence, we must build capacity to take our own destinies into our hands, and
you can see in many of the international documents, a trend to emphasize more and more, the role
of disabled people themselves in deciding on their own lives and what should be priorities,
and what should be done in the disability field.
You have it in the World Programme of Action, you have it in the Standard Rules, and you
also have it in the new Convention, and in the Convention its quite unique that the influence
of people with disabilities themselves is so clearly stipulated in the different provisions
of this Convention, like no other UN convention actually.
Well, so the voice of people with disabilities is the most important voice in creating initiatives
and action to improve the living conditions of people with disabilities. And this has
been the basis of our work in DRPI since the very beginning some 9 years ago.
When the breakthrough took place in the UN and the UN human rights establishment recognized
finally that disability is human rights dimension which has to be taken into account by human
rights organizations and by the UN human rights institutions, that was great event in the
disability history of course and it also presented a real challenge. How are we going to catch
all the different forms of exclusion and discrimination that disability creates throughout the world?
Well, the best answer is ask the people with disabilities themselves. They can tell you,
they know, and our intention has been all the time to develop two things. We want to
develop a methodology which will help the movement of disabled people to really expose
problems, human rights problems, in the lives of people with disabilities, and we want to
build the capacity of these organizations to really handle such information about violations
and discrimination.
How do we identify? How do we report? To whom do we report? How do we ourselves in our activist
work use the findings which come out of the monitoring? I think that the whole purpose
of this seminar, along with other training seminars, is to convey what we have already
achieved to new people with disabilities and to make them involved and make them contribute
themselves to even better methodology, even more accurate reporting etc. In this sense
you, as participants in this seminar, are very important.
You are very important to us, and your role here is important because you of course also
have experiences that we can use to further develop what we have set ourselves to obtain.
So I wish you all a high level of participation. Do learn what we have achieved so far and
do contribute with your own experiences in the process of this seminar.
Good luck to you and have a good time after the seminar as well.

To view the transcript for this video, click on the black bar above. To close the transcript, click on the bar again.

Using General Human Rights Principles in DRPI Monitoring

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

5 human rights principles 1. Nondiscrimination and equality, 2. Respect for difference, 3. Dignity, 4. Autonomy, 5. Participation Inclusion and accessibility

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 and how people with disabilities are experiencing their rights.

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.


Video: Using Human Rights Principles

Video Summary

DRPI Co-Director Dr. Marcia Rioux facilitating a workshop in El Salvador by discussing human rights principles.

For a reminder on how to turn on AMARA close captions, visit the FAQ page by clicking here (Question 9).


Transcript of Video

Human Rights Principles Dr. Marcia Rioux

Transcription provided by: Caption First, Inc. P. O. Box 3066 Monument, Colorado 80132 877-825-5234

>> DR. MARCIA RIOUX: The face of a woman who is deaf; who is raped. What’s on her face? In this world, this world that we’ve created, a vast majority of women with intellectual disabilities, with hearing impairments are raped with no legal recourse because they can’t say who did that to them; and the court won’t take the case. That is the face of indignity. That is the face of indignity. How do we change these faces? How do we change these faces?
What’s the face of the person who wants to work, who has a disability, but he or she is in a wheelchair and they can’t get into the building where the office is where they want to work? Imagine that face; the persons at the bottom of the set of stairs, they know they can do the job but they can’t get up the stairs to get into the workplace. What’s the face? It’s the face of indignity, it’s the face of insult, it’s the face of sadness; it’s the face of somebody who can’t participate. That’s the face of indignity.
And how do we think about the face of dignity? How do we change those faces in the faces of people who have dignity? Faces of people who have pride in themselves? Faces of people who know they have a right to belong, a right to be part of society.
What’s the face of a person who is starving? What’s the face of a person who gets up in the morning hungry and goes to bed at night hungry; because they can’t get a job, because they can’t work? That’s the face of indignity. So we need to think about how we make those faces of indignity into faces of dignity.

 To view the transcript for this video, click on the black bar above. To close the transcript, click on the bar again.

Group Activity

Watch this video and think about each of five general human rights principles. What does each of them mean to you? Did you ever feel that you were stripped of your dignity or autonomy or other of these 5 principles? What did you do in this situation? Remember there are no wrong answers here. Share your experience with the group. If you are going through the training by yourself, take some time to reflect on these questions.

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Recognizing Disability Rights Monitoring as an Ongoing Process

A goal of monitoring is to empower people with disabilities to record the Illustration of people working as a team to build a structure with different shapes and coloursextent to which they are able to exercise their human rights, how their rights are violated and what barriers that society/governments create. Additionally, to enable persons with disabilities and disabled people’s organizations to gather evidence-based information that draws upon first-hand accounts of rights violations, discrimination.

Monitoring is not a one-time audit or inventory, but an ongoing process of collecting information.  To be effective, monitoring must continue over time. The first time that monitoring information is collected provides a starting point (a baseline) 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 it heading in the right direction?
Is the situation better than 5 years ago?
Do people feel they are less discriminated against?
Is the disrespect of people’s dignity being addressed?
Are the laws and policies being implemented as promised?
Are the outcomes of changes making people’s lives better?
Is new technology being designed that supports the exercise of rights?
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 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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