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Monitoring the Individual Human Rights Experiences of People with Disabilities Project

Wednesday, September 04, 2013   Posted in: Resources and Information By: Administrator With tags: research, disabilities, human rights

This information is provided so that you can make a decision about whether or not you want to participate in this project. We are giving you a lot of information because we want you to be able to make the decision that is best for you.

Leaders for this Project

The New Zealand Convention Coalition Monitoring Group (NZCCMG) leads disabled peoples' work on monitoring and implementing the rights of disabled people, as outlined in the United Nations Convention on the Rights of Persons with Disabilities, and other United Nations Conventions affecting disabled people. Disabled People's Organisations (DPOs) leading the project are:

This project is funded through the Office for Disability Issues, Ministry of social Development.

Why this project is being done

We are collecting information about the lives and experiences of people with disabilities by talking directly to people with disabilities. We want to see if their human rights are being respected. The information we collect will be studied and reports will be written. The names of participants will not be mentioned in the reports unless they have given us clear permission to do so. The reports will be available to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media and governments.

The reports made will be used to:

  • let people know about violations of the rights of people with disabilities
  • help stop human rights violations
  • provide facts to back up arguments for changes in laws, policies, and programs to improve the lives of people with disabilities
  • keep track of the steps that the government has taken or has failed to take in order to  fulfill the promises it has made to people with disabilities when it signed agreements at the United Nations saying that it would protect, promote and fulfill the rights of people with disabilities.

What is involved in this project

The project is going to various countries around the world to talk to people with disabilities about their lives and their experiences.

If you agree to participate, and your parents/guardians give their consent, you will be asked a series of questions about your life and your experiences. We will particularly want to know if your human rights have been violated and how they have been violated. In other words, we will want to know if there are unfair things that have happened to you which have stopped you from participating in society in the way that people without disabilities participate in society.

If you agree to participate, you will be interviewed by one or more people with disabilities who are members of a local organization run by people with disabilities. We call these people the "monitors". We know that, in the past, people with disabilities have often been left out of projects about people with disabilities. We think that it is only fair that people with disabilities play an active role in any projects about them.

During the interview, the monitors will take notes. They will also audio record the interview so that we can be sure to get all of the information you provide accurately.

Depending on the methods of communication that are used, the complete interview should take approximately 2 to 3 hours to complete.

After the interview, the monitors will give all of their written and audio recordings to the person in charge of the project who we call the Project Coordinator. The monitors will not keep any copies and will not talk to anyone except for the Project Coordinator about what you said. The interview will be confidential.

The Project Coordinator will pass the written and audio recordings of your interview to the data analyser who will study them. Your name will not be on any of the information given to them, they will not know whose information they are analysing.

After looking at your information and the information from interviews with other people with disabilities in your country, the Project Coordinator will write reports that will be given to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media and governments. Your name will not be mentioned in the reports without your clear permission.

Possible positive and negative things that might happen if you participate

There are no negative things that will happen to you by participating in this project. However, you may feel uncomfortable when you start thinking about some of the questions that you are asked. For example, you may remember some things that have happened to you that are not pleasant to think about. If that happens, you can take a break from the interview or, if you want, you can stop the interview completely.

If you want to continue to talk about these things, that's fine, too. If you feel upset about these things, you can ask the monitors for the name of someone you can talk to about your feelings after the interview is over.

You may or may not receive any direct benefit from participation. You might find that it makes you feel better to talk about some of your experiences. Also, we hope that organizations of people with disabilities, the media and governments learn from the studies and reports that are made and take steps to improve the lives of people with disabilities in your country. 

Choosing to participate or stopping involvement in the project

You are free to choose to participate or not to participate in the project and you may choose to stop participating at any time. Your participation is completely voluntary. Your decision not to participate in the project will not influence your ongoing relationship with any of the project leaders, monitors or any other person or group associated with the project.

If, at any time during the project, you want to stop participating, for any reason, just let the monitors know and they will stop asking you questions. If you want to answer some questions, but not others, you can do that, too. It is entirely your decision.

If you decide not to participate in the project, or if you decide to stop participating in the project, we will not use your information for our project. Any written or audio recordings made up to the point you decided to stop will be destroyed. Your decision to stop participating, or to refuse to answer particular questions, will not affect your relationship with any of the project leaders, monitors or any other person or group associated with the project. No one will treat you any differently if you decide that you do not want to participate in the project.

Confidentiality of your information

The information you provide will be kept confidential within the limits of the law. Unless you specifically provide your consent, your name will not appear in any report or publication of the project. The written and audio recordings of your interview will be safely stored in a place that is locked and will be destroyed at the end of the project.

Costs and Compensation for your involvement

You will be reimbursed for the cost of your transportation to the interview location and the cost of any disability-related supports or assistance that you will need in order to participate in the interview. You will receive these things even if you decide to stop participating in the project at some point during the interview and/or decide not to answer certain questions. All participants will receive a $20 voucher for giving up their time to be interviewed.

Get more information about the project

If you have questions about the project in general or about your own role in this, please feel free to contact the Project Coordinator: Pam MacNeill

  • Telephone:  04 528 8323
  • Text or phone:  0274 575 461
  • Email:  pmacneillconsulting[at]

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