Why is this research important? He aha ai ka rakahau i taua nei kaupapa?
Understanding the benefits and challenges of civil society and disabled person-led monitoring is important for:
- ensuring the potential of Article 33.3 of the CRPD is maximised;
- holding duty bearers (signatory governments) accountable to their human rights commitments;
- and for advancing the human rights of disabled people.
Research Participant Information, He Pānui Pāroko
Hello, Tēnā koe!
Thank you for your interest in this research about disabled person-led monitoring of disability rights. This Research Participant Information site is to help you decide if you want to register your interest or not.
Who am I? Ko wai au?
My name is Dr. Robbie Francis Watene, I am a disabled researcher from Aotearoa New Zealand. I have lived with a physical disability since birth, and have worked in the disability sector as a support worker, humanitarian documentarian, social entrepreneur, researcher, consultant, and advisor. I am a Global Heumann Fellow at the World Institute on Disability (WID). The WID Global Heumann Fellowship Program honours WID co-founder Judy Heumann's enduring legacy by empowering disability leaders and advocates worldwide to advance disability rights and justice through research. I am also Disabled Research Lead at the Donald Beasley Institute; an independent, not-for-profit organisation in Aotearoa New Zealand that is committed to honouring Te Tiriti o Waitangi and advancing the human rights of disabled people and their families through ethical, inclusive, and transformative research.
This research project is funded by the World Institute of Disability through the Global Heumann Fellowship.
What is this research about? He aha te kaupapa o taua nei rakahau?
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is an international agreement that sets out what governments must do to ensure that disabled people have the same human rights as everyone else. But experts have warned that such conventions are sometimes little more than a paper victory - a statute that looks good on paper, that fails to be implemented in real life.
So, whose responsibility is it to ensure governments do what they’ve signed up for?
One of the most innovative aspects of the Convention is Article 33.3, which ensures civil society and in particular, disabled people and their representative organisations, are involved in monitoring the progressive realisation of their human rights.
The aim of this research is to investigate global systems of disabled person-led monitoring, by seeking to understand the benefits and challenges of Article 33.3, while highlighting pockets of excellence.
How will the research be used? Me pēhea mātou taua nei rakahau e whakahākai?
This research will be used to inform and improve future disabled person-led monitoring practices, while forming a network of disabled people and Disabled People’s Organisation (DPOs/OPDs) doing this important work around the world.
During this research I will also be filming a short documentary with the Disability Justice Project about the research. It is up to participants whether they want to participate in the short documentary or not.
Who can participate in this research? Mā wai e whakauru i taua nei rakahau?
In this research I want to speak with disabled people and Disabled People’s Organisations (DPOs or OPDs) that are, or have been, involved in disabled person-led monitoring under Article 33.3 of the CRPD.
All participants must be over the age of 18 and able to provide informed consent to participate. Participants will be from a diverse range of disability groups, ages, ethnicities, genders, backgrounds, intersectionalities, and can be based anywhere in the world, provided there is internet or phone access.
What will I do if I take part in this research?
Once participants are confirmed, I will arrange to conduct a virtual or in-person interview or focus group, as well as organise accessibility supports to ensure full and equal participation (for example, booking sign language interpreters). The interview or focus group is expected to take 1 to 2 hours, and will take place at a time and date of your choosing.
In recognition of participants’ time and expertise, individual participants will be provided with a US $100 voucher of their choice. If a DPO/OPD chooses to participate in a focus group, a US $300 donation will be made to their organisation.
What will happen with the information you share?
This research will be conducted under the korowai (cloak) of both the World Institute of Disability’s guiding principles (disability-led; accelerating inclusion; and pan-disability movement solidarity), and the Donald Beasley Institute’s mātāpono (guiding values), which are:
- Whakatinana – Honouring Te Tiriti o Waitangi through practice
- Whakarakatira – Respectful
- Whakawhanaukataka – Relational
- Whakamana – Ethical
- Whakawhirinaki – Accountable
- Whakakotahi – Inclusive
- Whānau - Through uplifting whānau (family) our journey will be one of prosperity
This means I will not talk to any other person about you or what you tell me, without your consent, unless you tell me that you or someone else is in danger and I am legally required to do so. But I will talk with you before I do this.
When we meet, I will ask you if it is ok to record the interview. You can ask to have the recorder turned off whenever you want. You will be able to read (or have read to you) your transcript and make changes.
During the consent process, I will ask you about whether you are comfortable having your global region, country, and organisation identified, or if you want all identifying details to be de-identified. Because there may be other people from your country or organisation taking part in the research, the level of confidentiality for your country or region will be selected based on the most conservative level of identification. For example, if one participant from a country or region is comfortable with having their name and organisation published, but another participant from that same country or region is only comfortable with their global region being published, then all interviews and focus groups from that country or region will be de-identified other than their global region.
I may also contact you in the future to confirm interview details, ask if I can speak with you further about the things you’ve told me, or update you on this study and further research opportunities in this study.
There may be a delay between taking part in this research, and receiving a summary of the findings. It is important to note that publications from this project might be used by WID, DPOs/OPDs, community health and disability support services and governments to help them think about disabled person-led monitoring.
Any information you give will be used for this research only and will not be used for any other purpose, unless written consent is provided (for example, for the Disability Justice Project short documentary).
What if I get hurt or upset?
It is unlikely you will be hurt, injured or upset during this research. If you do get upset or hurt in any way because of your involvement in this research, I will give you information about how and where you can get support.
What do I do if I want to take part?
There are a few ways you can tell me you are interested in taking part.
- You can fill out a Participant Interest Form online. Your responses will be sent directly to me.
- You can download and fill out a Participant Interest Form, and email it to me, or you can contact me directly and I will help you fill it out.
If you would like to register your interest in Sign Language, you can also email or Whatsapp me a video of your responses.
It is ok to ask a friend, family member or a support person to help you fill out the form if you want to. Please send your completed Participant Interest Form to:
Robbie Francis Watene (Global Heumann Fellow, Aotearoa New Zealand)
Phone / Whatsapp / Waea mai: 00 64 27 529 2114
Email / Īmēra mai: robbie@wid.org
After I have received your Participant Interest Form I will make contact to talk to you about the research again, just to make sure you really want to take part.
If a lot of people want to take part in this part of the research I may not be able to include everyone. This is not because I don’t think your experience and knowledge is important. You can still register your interest in this research, and remain updated on its progress.
Who will have access to my information, details and interview recordings and notes?
The researcher and transcribers will be the only people who have access to the details and information you share. I will use a code system to help make sure no one can identify you or your responses, unless you have consented to your information being used.
If you have provided consent to be included in the short documentary, the footage may be accessed by staff from the Disability Justice Project. I can pre-edit this footage if there are parts of the interview you do not want used. You do not have to take part in the documentary.
What will happen to the information and details I share in this research?
Everything you share with me will be kept securely at the Donald Beasley Institute for 10 years. After 10 years it will be destroyed.
What happens if I don’t want to take part?
Nothing will happen. If you don’t want to take part, that is OK. No one can tell you that you have to take part in this research. You can tell me you want to stop at any time, and all activity will cease immediately.
If you withdraw, it is your choice whether I use the information you have told me up until that time.
Who do I contact if I have any concerns about the ethics of this research?
This research was determined to be outside of the New Zealand Health and Disability Ethics Committee’s scope. It has been reviewed by a diverse range of global research and disability experts to ensure it is ethical and safe. For any concerns or questions about the ethics of this research, please contact the World Institute of Disability:
Phone: 510.225.6400
Email: wid@wid.org