Professor Christine Bigby, Director of La Trobe University’s Living with Disability Research Centre, has devoted her career to improving the quality of life for adults with intellectual disabilities. With six books and 120 journal articles to her name, she’s an international expert on the effectiveness of group homes, supported decision making, and the nature and meaning of social inclusion for people with intellectual disabilities.
In this conversation, she shares her ideas on how to best support people with intellectual disabilities to foster friendships, build identity and act with agency.
Your research spans everything from studies on supported accommodation services to a moving case study on the decade-long friendship between Dorelle, a retiree and volunteer, and Heather, a woman with a severe intellectual disability. How did you end up in this line of research?
I’m a social worker. I started off my career working in social security at a Centrelink office in Dandenong, where most people I met were either unemployed or single parents. In that setting, class issues were of significance, and what we could do to change things was quite restricted. I moved to NSW in the mid-1980s, and worked as a coordinator for a migrant resource centre in Wollongong. The focus there was on social inclusion for marginalised people. I then returned to Victoria, and took up a position in the Office of Intellectual Disability Services. It was the coalescence of all my previous positions, about cycles of disadvantage and deviance, and I have worked in that area ever since.
And now you’re Director of the Living with Disability Research Centre?
The Centre was established in late 2014. Our focus is on people with cognitive disabilities, which includes people with intellectual disabilities or acquired brain injury. We’re interested in building an evidence base to further social inclusion, assess the effectiveness of disability services and improve access to mainstream services. We collaborate closely with government and non-government disability support providers to achieve these aims. From the NSW Department of Family and Community Services to Jewish Care, the Victorian Electoral Commission, Office of the Public Advocate and Golden City Support Services, we work with a multitude of partners to improve service models in this area.
After reading some of the research coming out of LiDs, I was shocked by the challenges that people with intellectual disabilities still face – that they are one of the most socially excluded groups in Australian society. How can we build social inclusion?
Social inclusion is critical, but it’s hard to achieve. Most people with intellectual disabilities have small social networks restricted to paid staff, families and peers with disability. Friendships with people without intellectual disabilities are rare. That’s what made the case study of Dorelle and Heather so interesting. Not only did they become friends, but the day service provided a culture where the women could get to know each other. Dorelle also learned the skills she needed in order to respond to Heather’s needs.
Friendships like this one might be ideal, but fleeting encounters in shops or convivial encounters with strangers are also important for people with intellectual disabilities. They build a sense of identity, allow them to be known and recognised as a person with a right to be in the community, and may lead to friendships.
As our research has shown, creating opportunities and supporting encounters between people with and without intellectual disability requires thought, creativity and skill.
LiDs member and Research Fellow, Dr Emma Bould, has found one way of doing this – by using dogs as ice-breakers.
Emma loves dogs and always wanted to incorporate them into a project. She asked the question, ‘What might be a catalyst for social interaction between a person with intellectual disability and a member of the community?’ Her answer was dogs, because they are friendly and help to initiate conversation. Dr Bould coordinated a dog walking program that paired up people living with intellectual disability with dogs from Bendigo’s Righteous Pups Australia. She has demonstrated being with a dog in the community means, as one participant said, “that people talk to you more,” and that it facilitates convivial encounters. She’s now hoping to expand the program for further research.
Participation is not just about interaction, but giving people with intellectual disabilities agency in their own lives. And that, as you have shown, comes down to providing their advocates with the right support strategies.
It’s all about enabling people with intellectual disabilities to engage in meaningful activities and social relationships. Being engaged means you’re more likely to have new experiences, to exercise choice and control, and to be exploring your world and participating in it. This is really important for people with more severe disabilities, who need support to be engaged.
Staff training is critical to this. We’ve completed many studies in group home settings and have found that staff-enabling practices change from day to day, from service to service, and between services. The factors that are critical to a successful outcome include use of active support by frontline staff, and leadership, where frontline managers focus on continued improvement of practice. Active support is not a therapy – it’s not saying we should do this now and then, it’s the way in which staff should support people all day, every day.
All this is particularly important given last year’s introduction of the National Disability Insurance Scheme (NDIS).
Yes. NDIS shifts the focus, giving people with disabilities choice and control over the support they receive. In that environment, LiDs is working to identify the best models of support to enable people with intellectual disabilities to exercise choice.
We need to equip supporters with the strategies and tools that mean they can support people to make their own decisions, and replace past practices of paternalism where decisions were made ‘for’ rather than ‘with’ people with intellectual disabilities.
It strikes me as an incredibly rewarding field, but not without its challenges. What inspires you to keep forging ahead?
Mostly, it’s the opportunity to work alongside people with intellectual disabilities, either as co-researchers or as people involved in interviews, observations or focus groups. It has allowed me to value human difference. Someone with an intellectual disability can make an enormous contribution to other people’s lives by offering a different perspective. It is recognising and valuing that difference in people, and having the opportunity to engage with those relationships.
Are you someone who sees the value in different perspectives? Join the discussion at our Bold Thinking Series event, Promise delivered? The National Disability Insurance Scheme five years on, at the State Library of Victoria on Wednesday 28 March, 6:30pm.