Research project looking for young people with disabilities

A researcher at NUI Galway is looking for young people with disabilities to share their experiences on who made the decisions that have affected their lives. 

The research project, titled ‘It’s My Life!’, explores how young people with a disability can exercise their right to make decisions in line with Article 12 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

The researcher, Clíona de Bhailís, was inspired to do this research based on her own experience as a wheelchair user.

Who can take part in the study?

The project is looking for young people age 15 – 20 living in Ireland who have experience of a broad range of disabilities, including:

• Physical disability (wheelchair user, limited mobility or people whose arms or legs don’t work in the same way as other people)
• Sensory disability including blind, low vision, deaf or hard of hearing
• Intellectual disability
• Learning disability (dyslexia, dyscalculia etc.)
• Neurodiversity (Autism, DCD/Dyspraxia, ADD, ADHD)
• Psycho-social disability or experience of the mental health services

What is involved in the study?

Those taking part in this research will answer questions about:

• A good experience of decision making, when they felt like they were listened to
• A bad experience of decision making, or a time when they felt they weren’t being heard or supported

The questions can be answered online via a form. If you need assistance with filling it in, that can be provided. The questions are available in a variety of formats including an Easy Read form. Find out more on the research site.

Why take part?

Taking part in this study is a chance to have your voice heard. This research will be used to build a better understanding of the experiences of young people with disabilities. 

The researcher hopes this will help inform law and policy in the future about decision making for young people and what supports can be put in place. This could be changes to the Assisted Decision-Making (Capacity) Act, the HSE National Consent Policy, education plans or some other area that impacts the lives of young people with disabilities.

Your responses could help to shape these policies in the future by informing the research.

How do I sign up?

If you would like to sign up to take part in the study, or if you would like to learn more, you can:

• Visit itsmyliferesearch.com
• Contact Clíona de Bhailís at [email protected] or on 086-6032755.

About the researcher

Clíona de Bhailís is a PhD student in the Centre for Disability Law and Policy in NUI Galway. She studied law at university before working as a research assistant on the VOICES project. VOICES was an international research project about decision making for adults with disabilities and Article 12 of the UN Convention on the Rights of Persons with Disabilities.

Her experience working on the VOICES project, and her own lived experience as a wheelchair user, is what inspired her to undertake this research. 

As a young person with a disability her views or decisions were often respected by her parents, doctors and other professionals but her experience in the VOICES project taught her that this isn’t always the case, especially for those with what are described as cognitive disabilities (intellectual disability, autism, psycho-social disability). She believes disabled people should have equal opportunities to make decisions, use support to make decisions (when they want to) and make mistakes. She also believes that decision making skills also don’t magically appear at eighteen, or the age of majority, so she wants to hear from young disabled people directly to find out what their experience of decision-making is.