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Throughout my travels, the importance of advocacy in supporting the wellbeing of disabled people was frequently raised. Advocacy for disabled people was identified as key in:
Giving them the confidence and ability to assert their rights.
Taking control of their own lives.
Making decisions for themselves.
It became clear it is not just about fighting for rights or access but about creating environments where disabled people's needs are understood and their contributions valued, all of which contribute to self esteem.
Furthermore, many found that self advocacy presented a way to challenge the negative societal attitudes toward disabled people by demonstrating of what they are capable of rather than being constrained by society's perceptions. The importance of adequate funding was reiterated many times, with a lack of funding of particular concern that came up in my research time and time again.
During my time in Sydney I spent time with Side by Side Advocacy, an organisation that specialises in advocacy for people with an intellectual disability, providing advocacy that suits the needs of each person.
Bernadette Curryer shared with me their inclusive governance project where they have been researching ways that people with intellectual disability can be meaningfully included on management committees and Boards.
Lil Paterson, Will Harding, Emily Hyland, Katrina Sneath, Bernadette Curryer at Side by Side Advocacy
Bernadette went on to speak with me about The Royal Commission into Violence, Abuse, Neglect and Exploitation of people with Disability (DRC) in Australia and its 2022 report. The report revealed that disabled people are frequently subjected to violence, neglect, exploitation and abuse. She showed me the weighty 12 volumes of the report on the shelves in the office, a stark, poignant reminder of the reality that disabled people are facing. It was clear that the findings and recommendations within those pages deeply influenced Side by Side's dedication to transforming the lives of the individuals they support. I found myself wondering what findings would come to light if the UK undertook investigations akin to these.
During the Disability Royal Commission, disabled people and their families spoke up about the need for additional advocacy support.
An issue for advocacy projects is though a lack of funding with advocacy organisations across Australia continuing to turn away people with disability who need advocacy support because they lack resources. The Speak Up for Independent Advocacy campaign noted that "More than two million Australians with disability will be unable to access independent advocacy support if the sector remains chronically underfunded."
At Side By Side Advocacy, they are doing all they can to provide advocacy support as soon as possible and reaching out to people who may not be aware that advocacy is available, or even what advocacy is. They have recently started a project called Community for Everyone, a pilot project designed to bridge the gap between profoundly isolated people with intellectual disability and their community.
Isolation was mentioned by another researcher in Australia who highlighted that disabled people who are isolated and lacking access to resources are often "forgotten and ignored" and they don't know how to advocate for themselves as they just don't have access. They discussed how there is potential for a more standardised advocacy framework with a flexible approach "so every disabled person, no matter where they live, can access advocacy services that allow them to make informed decisions about their lives."
I clearly saw how advocacy has the potential to change and support an individual’s wellbeing, leading to more choice and control. I spoke with Katrina who has an intellectual disability at Side by Side Advocacy. She's been passionate about advocacy since she was a teenager as it's given her a voice and an opportunity to speak up for herself. When I asked her what wellbeing meant to her, advocacy was one of the first things she mentioned, which highlighted just how important it was.
Whilst there are many advocacy projects and organisations in the UK, there is not currently a national framework for disabled people. I had seen the impact of advocacy and feel there needs to be more understanding on this and opportunity for disabled people to access advocacy services, no matter where they are in the UK, to help ensure they are able to speak up for themselves.
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