IASSIDD, Glasgow – August 2019

This time, last year, I was lucky enough to present two papers at the International Association for the Scientific Study of Intellectual and Developmental Disabilities(IASSIDD) World Congress in Glasgow, Scotland! The World Congress is held every three years, it’s a huge collection of thousands of researchers from all over the globe. There was a packed schedule, and I gave two papers. I was honoured to win an Award to help fund my travel from the Ethics Special Interest Research Group for my paper on De-differentiation and Difference for people with profound intellectual and multiple disabilities.

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The Congress went all week, and it was a beautiful time of year to be in Glasgow. I did lots of whirlwind tourism and ate a lot of scones. It was total luxury to have a week in Scotland all to myself with no kids in sight.

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The Conference Dinner at Kelvingrove Museum

Both of my papers were on the Transition to Adulthood Project, the first was about de-differentiation and difference and socio-legal decision making, about the importance of real differences for people who have severe and profound intellectual disablities and how these are not dealt with very well by our legal and administrative systems. The second paper was about being an “outlier” in legal and administrative systems, and what the experiences people with PIMD and their supporters can tell us about assumptions about being an adult and a citizen. When we look at people who don’t fit in with the assumptions made by our social systems, it helps show us what those assumptions are, and how they might not work for everyone. The abstracts were published in the Journal of Intellectual Disability Research and you can find all of them here.  I’ll post some slides from both papers in another post. 

Glasgow was awesome, I met so many great researchers, and being a tourist in Scotland was just a bonus. And the scones were delicious!

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Scones, strawberries and clotted cream at Edinburgh Castle

 

Presentation at ASID (Australasian Society for Intellectual Disability) in Adelaide, November 2019

Late last year, Daelle and I (and our family!) went to Adelaide to present some results from the Transition to Adulthood Project together. It was a fantastic conference, and a great opportunity to share some results from the Project.

A name tag and a cuddly Ubercorn!

You can find all the proceedings from the conference here, and the abstract from our presentation is here. We talked about an overview of transitioning to adulthood with profound intellectual disablities. I co-presented with my daughter, Daelle, who has profound intellectual disabilities. It’s vital that people with severe and profound intellectual disabilities are more visible and participate in conferences and events like this, and it was great to share the experience with her.

Getting someone with profound intellectual and multiple disabilities to a conference a long way from home meant that our whole family came along too. My husband took time off work so provide care for Daelle during the conference, and because our youngest daughter was only 11, she got a free holiday and time off school to tag along. It was quite an adventure.

Two women, one using a wheelchair, presenting in front of a projector

We shared some results from the Project and some of the experiences of the people I had interviewed so far. Daelle enjoyed it and it was a great experience to have everyone there. ASID is always a fantastic and inclusive conference, too.

 

Stories from the Field

In some research news, I recently got an “ethics variation” to increase the age of the young person involved to 30. Now I can interview anyone where the young person living with severe intellectual disabilities that they support is aged between 18 and 30. I had been contacted by several parents where the young person was older than 25, but the issues remained substantially similar in terms of exercising legal decision-making. This will open up the field a little more and ensure fewer people who want to participate and share their stories with me are excluded!

Daelle and her assistant, Bear, about to have coffee before heading off to our interview.

In other research news, Daelle’s support worker was sick last week and she came along with me to an interview! Luckily the participants were very warm and welcoming and enjoyed her company. The venue was wheelchair accessible and Daelle enjoyed the day out on the research trail!

Looking for people to interview!

Do you support a young person (18-25) living with severe intellectual disabilities? Do you live in Queensland? Want to share your experiences about the legal and administrative process of becoming an adult with me?

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Image by Andrew Martin from Pixabay

I’m talking to people about their experiences with legal and administrative decision making with and for young people living with severe intellectual disabilities as they become adults in Queensland. It’s a project near to my heart and has been inspired by my own life and experiences as a parent of someone living with profound disabilities becoming an adult. Find out more about being interviewed as part of the project here.

About the Researcher

Michelle (1)Michelle King is completing a PhD in law at the Australian Health Law Research Centre at QUT. Her work is about legal and administrative decision-making as people who have severe and profound intellectual disabilities transition to adulthood in Australia. Michelle has worked for many years in the University teaching and research sector. She is a lawyer and a sociologist interested in how law works in people’s lives. She has three children, and is also an advocate and decision maker/supporter of her 20 year old daughter, Daelle, who lives with severe and profound disabilities.

You can contact her by email at kingm8@qut.edu.au.

The Transition to Adulthood Project

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The transition to adulthood of people with severe intellectual disabilities is not well researched or understood. This research expands our understanding of the transition to adulthood as a social and legal construct by exploring and theorising the lived experience of people with severe intellectual impairments and their supporters, using Queensland as a case study. Examining the lived experience of people with severe intellectual disabilities allows us to bring less visible issues of adulthood, citizenship, capacity and inclusion into focus. The research places these shared understandings within theoretical landscapes of personhood and citizenship, impairment and disability, medical and social models of disability, and ideas about difference and inclusion. By accounting for people with severe and profound intellectual disabilities, disability itself can be more honestly theorised and understood.

This research will explore these complex issues in theory and practice by conducting original theoretical and empirical research into the transition to adulthood of people with severe intellectual disabilities in the Australian legal context.  Twenty in-depth interviews will be conducted in Queensland with participant pairs consisting of a person with severe intellectual disabilities, and a person who supported (or made) their legal decisions during their transition to adulthood.  Interview participants will be recruited using snowball sampling, and interviews conducted and analysed using a constructivist grounded theory methodology.  The project will increase knowledge and understanding of the legal and administrative barriers and gateways faced by people with severe intellectual disabilities as they and their supporters navigate the regulatory systems of adulthood in Australia, and will inform our understanding of the often invisible social and legal assumptions made about adulthood, citizenship and disability in society.