Your Story Disability Legal Support update—Issue 20, January 2023
In this issue ...
A message from Your Story
Thank you to everyone who made a submission to the Disability Royal Commission. Many of you contributed part of who you are and the often painful experiences you have been through to create change for others.
With submissions having closed on 31 December 2022 and the dawn of 2023 upon us, it seems like the right time to reflect on what I have learnt so far from our Your Story clients and my team members, many of whom live with disabilities and/or are carers.
From my experiences with disability and also the privilege of this work, I have learnt about the importance of us sharing our stories with one another. This often includes sharing our authentic selves and sometimes our more vulnerable experiences to celebrate difference, create connection and embolden change.
I continue to learn this from our clients, who often bared their identities, shared their traumas and graciously contributed their ideas – in submissions, private sessions and at public hearings.
And from our Your Story staff who, in the hope of supporting others to come forward, spoke at events, on the television and radio, in the newspaper and within their communities. They spoke with unflinching honesty, vulnerability and authenticity, as well as with infectious (in a good way) pride about what it means to them to be part of this Disability community.
It is with this impetus that I would like to share my own story – a bit about who I am, and how I belong to this work and to this community.
I don’t have a disability and I don’t understand or feel what that is like.
My brother Ben had Mucopolysaccharidosis (MPS II). MPS is a rare genetic metabolic disorder, where a missing enzyme means that the body can’t break down sugar molecules in cells, leading to progressive organ damage. Ben had a lot of disabilities; in fact, I can’t really think of too many that he didn’t have.
MPS II is extremely rare and was even more so in the 1970s in Australia. Not long after Ben was diagnosed and along with a handful of other parents, my mum Amanda O’Reilly started the MPS Society in Australia.
At a time when my mum felt very lonely and afraid, she had a vision to create a community that supported people with MPS and their families through the power of information and connection. If you haven’t figured it out already, my mum’s a bit of a Boss and she made it happen. So, I suppose I learnt about making change from the best, and with this, I hope Your Story can also support people through innovation, connection, kindness and advocacy.
You can read more about the MPS Society, as well as my mum and Ben’s part in its story, on their website.
Ben died from MPS II when he was 10. Despite this, I can’t separate out Ben’s disabilities from all of who he was and everything he gave to me, my brother James, my family and everyone who met him. I can’t think of anyone who radiated with more joy, humour, resilience, and authenticity than Ben. My mum says that even though he was non-verbal, Ben taught her more than anyone else has in her 70 or so years. P.S. Sorry, mum – you still look like a spring chicken.
This is a photo of me (pictured left) and Ben– even though I’m holding the book, I think I might be the one getting schooled.
People with disability don’t exist to teach or inspire others, and neither did Ben. Equally, I don’t think a life is measured by the number of days lived, the scale of its achievements, or the height of a person’s abilities. But maybe somewhat, by its meaningful impact on others.
As I reflect on my learnings from our clients as well as my family and team, I do think that if people stop to learn and grow from the stories of our Disability community, then there is so much to be gained by the Disability Royal Commission, the Government, our society and everyone.
In the borrowed words of my colleague Jack on International Day: “…I have seen what comes from giving people with disabilities opportunities. It’s not about doing them a favour or performing an act of charity but taking advantage of an opportunity. An opportunity to learn, to understand and to grow.”
Your Story Disability Legal Support will continue to be here to support you and your clients in 2023. We look forward to providing free legal support to people with disability and their families, carers, and supporters.
Warm regards,
Susannah
Director, Your Story Disability Legal Support
Ongoing legal support for people with disability and supporters
Your Story will continue to provide free legal support to people with disability and their families, carers and supporters in 2023.
Submissions to the Disability Royal Commission closed on 31 December 2022. A Your Story lawyer can answer questions about your submission or support you with your private session request.
We can also support you with other legal problems you might be dealing with, such as the NDIS, discrimination, guardianship or family violence, and connect you with other support services, including free counselling and advocacy.
If we can’t help you solve your legal or non-legal problem, we will try to connect you with someone who can.
We will also continue to provide accessible legal education for the disability community in 2023. If you would like to request a session for your clients or staff or are interested in hearing about a particular topic, please complete our survey.
For free legal support, call us on 1800 77 1800 or visit our website for other ways to get in touch.
Congratulations Mary Mallett
Congratulations to Mary Mallet on her appointment as Disability Commissioner representing people with disability in Tasmania. As the long-standing CEO of the Disability Advocacy Network Australia (DANA), Mary has been a leader in disability advocacy. We wish Mary all the best as she continues her strong and thoughtful advocacy for the disability community.
Celebrating International Day of People with Disability
Saturday 3 December was International Day of People with Disability. Like the community, Your Story celebrated in different ways, on different days and right across the country!
In New South Wales, the Your Story team collaborated with the Legal Aid NSW disAbility staff network to put on an uplifting but powerful event. Your Story lawyers Rania Saab, Jack Anderson and Oliver Moore were joined by comedian Jamal Abdul as they reflected on their personal and professional lived experiences of disabilities.
This class act of speakers was met with many laughs and raucous applause as they moved both the minds and hearts of the audience with their calls to action. Other events featured dancing and drumming, with the option to join online or in-person to ensure they were inclusive and accessible.
In Western Australia, the Your Story team was part of a week of events hosted by our service delivery partner Legal Aid WA. ‘Ensuring effective communication with people with disability in the justice system’ and ‘Supporting the decision-making of clients with cognitive disability’ were among the topics covered by people with lived experience and other experts.
The presentations were informative and full of great ideas and inspiration. The week-long celebration culminated in Your Story lawyer Amilee Myson presenting to an audience of people with disability, family members, sector workers, and providers at an event chaired by Senator Jordon Steele-John.
In Tasmania, Your Story lawyer Jane Green (pictured left) attended a morning tea hosted by the Department of Justice, which featured discussions on topics such as acquired brain injury and tips for making the workplace more accessible.
In Victoria, leading disability and human rights advocate Graeme Innes AM spoke about the importance of employing staff with disability to better reflect the community, with people with disability making up 20 percent of the Australian population.
“Don't assume that we cannot do things. Ask if we, as people with disabilities, can,” he said. “Give us jobs, not fatuous reasons why we can't do them. Support us to develop the skills to take leadership positions and then encourage us into them.”
You can read more about the event on Victoria Legal Aid’s website.
What does an inclusive Australia mean to you?
In the spirit of IDPWD and to coincide with 'Public hearing 31: Vision for an inclusive Australia', we asked our clients, team members, and partners what an inclusive Australia means to them…
John – Your Story client, champion for disability rights, and lived experience witness:
“People with disabilities are more integrated into society. There is less guardianship, no one in group homes, people with disabilities are out in public, living independently in houses, and everyone would be freer. People with disabilities and their support workers would be more visible in public, going out and socialising with the community.”
Demi – Your Story lawyer in Western Australia:
“To me, an inclusive Australia means everyone has access to justice and opportunity, no matter their circumstances or ability.”
Michelle – Your Story lawyer in Victoria and mother and carer of a child with disability:
“People with disabilities, and their supporters, would have the same opportunities and choices as everyone else to have a good life. They wouldn’t be more likely to be mistreated, unemployed, living in poverty, or having someone else make decisions for them. Any of us, or someone we love, could acquire a disability. Making Australia more inclusive is everyone’s business.”
Shannon – Diversity and Inclusion Project Officer, Department of Justice (Tasmania)
“An inclusive Australia to me is one where all people are valued, respected, seen, and heard, regardless of their personal characteristics or circumstance. In an inclusive Australia, we all have the opportunity to participate, contribute and have a sense of belonging.”
Hiran – Your Story lawyer in South Australia
“An inclusive Australia means living in a society where everyone is free to be the truest version of themselves and that diversity is not just accepted but celebrated.”
“I know what it’s like to feel like your voice is not heard”
Your Story Advisory Group member Sonia Hume recently shared with us why she joined our expert advisory group as the Tasmanian representative:
“I joined Your Story Disability Legal Support’s Advisory Group because I want to bring my lived experience to the service and encourage people to tell their stories. I want to help people to have a voice. I know what it’s like to feel like your voice is not heard. I want to help others to find their voice.
“I hope to help people to speak up about violence, abuse, neglect and exploitation and for others to see that it is okay to speak up. I hope that sharing my advice as a person with lived experience encourages people to tell their stories.”
Share Sonia’s message on Facebook, Twitter and LinkedIn.
Thank you to all our Advisory Group members for their ongoing commitment to our service. We wish them a happy and healthy new year, and look forward to their ideas and input about how our service can continue to work with the disability community in a safe and accessible way in 2023.
Your Story features on Too Peas in a Podcast
Your Story lawyers Michelle Bowler (Victoria) and Jane Green (Tasmania) recently chatted with Mandy Hose and Kate Jones, the hosts of this hugely popular podcast for parents and carers of multiples with disabilities.
Jane and Michelle explained the supports available for Too Peas in a Podcast listeners to contribute to the Disability Royal Commission. They also shared the songs that have helped carry them through the tougher moments as parents of children with disabilities. No spoilers, so if you want to find out their answers you can access the episode on the Too Peas website.
Your Story’s lawyers in the ACT, Nicola and Samantha, have also been on the airwaves, featuring on Legal Aid ACT’s podcast series, At the Heart of Legal Aid.
During the 15-minute episode, they explain what the Disability Royal Commission is about and how they have been supporting Canberrans to safely share their stories.
Nicola also shares her personal connection with our work. You can listen to the interview on Spotify.
Connecting with Brisbane’s LGBTQIA+ community
Our wonderful guest speaker Cody Skinner (pictured second from right), a Queensland disability advocate and a First Nations gay man living with disability, opened our Brisbane event for LGBTQIA+ people with disability and their allies in November.
Cody talked about the employment barriers he has faced and what it was like to share that in a submission to the Disability Royal Commission, then as a witness at a public hearing about open employment. The event was co-hosted with Lotus Support Services and Queensland Advocacy for Inclusion.
A research report recently published by the Disability Royal Commission has found that LGBTQA+ people with disability experience higher rates of mistreatment. Read more about the report and its findings below.
Art and Auslan: Reaching flood-hit communities in regional Victoria
By Fiona McLean, Manager of Stakeholder Relations
It was great to finally visit Horsham, a regional town in Victoria impacted by last year’s floods. On the first day, we were delighted to host a group from Beyond Community Inclusion, a volunteer-run program offering art projects for people with disability.
The second day was opened by the amazing Buffy Henderson who performed ‘We are Australian’ in Auslan. Buffy has long been a champion for increasing inclusion by teaching Auslan to children at Horsham Primary School. Buffy lives with hearing loss and wears cochlear implants and hearing aids. We were all deeply moved by her performance, and it provided a very positive and supportive start to our event.
The Horsham sessions aimed to provide information and demonstrations on how to contribute to the Disability Royal Commission and were co-hosted with our local partner Rights Information and Advocacy Centre and the Disability Royal Commission.
South Australian stories shine a light on disability issues
“Whilst many stories shared with the Disability Royal Commission reveal experiences of significant pain and trauma, what has truly amazed me is the steadfast determination and courage of people to openly share what they have endured.”
Our South Australian lawyer Hiran Lecamwasam has written an article for the Law Society of South Australia’s monthly journal, The Bulletin. In it he shares some of the insights he has learned when travelling to remote parts of the state to support people to share their stories with the Disability Royal Commission.
The November edition also includes an article by Natalie Wade, founder and principal lawyer at Equality Lawyers. She reflects on the disability rights movement leading up to the Disability Royal Commission and shares her hopes for major law reforms that provide greater protections for people with disability.
Your Story clients share guardianship experiences
Public hearing 30 examined Australian guardianship and administration laws and policies, with a particular focus on how substituted decision-making impacts on the rights of people with disability. The hearing took place from 21 to 25 November in Sydney.
Lived-experience witnesses, advocacy groups, public guardians and trustees, as well as representatives from the National Disability Insurance Agency, all gave evidence.
Your Story supported many of the lived-experience witnesses to share their experience at the public hearing. We also had a stall at the hearing to connect with any community members needing legal support or wanting to find out more about guardianship.
You can access videos and transcripts from the hearing on the Royal Commission’s website.
Dylan Alcott AO and others give important evidence at public hearing about inclusion
Australian of the Year Dylan Alcott AO was among several witnesses to give evidence at the final public hearing of the Disability Royal Commission for 2022.
Teenage disability advocate and educator Summer Farrelly and award-winning actress and advocate Chloe Hayden also shared their vision for an inclusive Australia at public hearing 31, which was held in Brisbane from 12 to 16 December.
Dylan spoke about the importance of listening to lived experience, lifting expectations of what people with disability can do, and investing time and money into making inclusion and accessibility a reality. He thanked the thousands of people who had shared their stories with the Royal Commission, adding:
“The time to get the show on the road and to really get cracking is now... We all need to make sure, via co-design with people with disability and people in industry, whatever it is, to get this stuff done to make sure our society and community is a safer place for people with disability, first and foremost, and secondly, to create and build capacity, so people with disability cannot just survive but thrive in their life and do whatever they want to do.”
Transcripts and videos from public hearing 31 are now available on the Royal Commission’s website.
Next public hearing to focus on service providers
The next hearing, ‘Service Providers Revisited’, will take place from 13 to 17 February at Level 5, Waterfront Place, 1 Eagle Street, Brisbane, Queensland.
See the public hearing schedule on the Disability Royal Commission’s website for more information.
Royal Commission publishes report on supported decision-making
People with cognitive disability must be empowered to participate in making their own decisions, according to new research from the Disability Royal Commission.
The report, ‘Diversity, dignity, equity and best practice: a framework for supported decision-making’, makes 11 recommendations, including that people with cognitive disabilities and their supporters should lead supported decision-making reform and initiatives.
Research was undertaken with 77 people, including people with cognitive disability, advocates, family members, and service providers.
The report is available in Auslan, Easy Read and other formats on the Royal Commission’s website.
Royal Commission publishes report on the experiences of LGBTQA+ people with disability
LGBTQA+ people with disability experience higher rates of violence and abuse due to their gender or sexual orientation than those without disability, according to a new report.
Researchers from La Trobe University in Melbourne polled over 5000 LGBTQIA+ people with disability aged 14 and older for the study, which was commissioned by the Disability Royal Commission.
A key finding was that LGBTQA+* people with disability experience higher rates of mistreatment, including verbal and physical harassment, social exclusion and feeling uncomfortable at school. The report recommends a series of interventions across policy, services and the community to address this.
Visit the Royal Commission’s website to access the full report, as well as summaries in Easy Read and Auslan.
*Intersex people were included in both surveys conducted by La Trobe University, however, there were not enough survey responses to statistically include in the research findings.
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