Disability Reference Groups
and What They Mean To People
Welcome to Mostly Unlearning, a newsletter that amplifies accessibility, inclusion and disability voices towards more impactful commercial and human outcomes.
I’m currently reading “Being Heumann: The Unrepentant Memoir of a Disability Rights Activist” by Judith Heumann and Kristen Joiner. It’s a powerful story of networks and community uprising for disability inclusion in America. Reading it, I was reminded of a conversation in a Disability Reference Group I chair for our local council.
But first, a recap on Mostly Unlearning
Welcome to new subscribers, it’s great to have you here.
Whether you’re here as a person with a disability, an advocate, an ally, a colleague, a manager, a designer, a leader, a policymaker, or simply curious to understand more, thank you for joining me in this unlearning process. One of the core tenets of Mostly Unlearning is that our systems shouldn’t rely on individual bravery, but they often do. And when they do, it’s disabled people who carry the heaviest load.
The habit of inclusion is underpinned by learning and unlearning. Mostly unlearning.
At the end of every edition, I provide unlearning prompts. These questions are designed to prompt you to reflect on your habits and consider a more inclusive approach to the edition’s topic. It’s helped me, and I hope it helps you too.
Got a topic you want to unlearn? Send me a message or leave a comment.
Today’s edition
Today’s edition is my reflections at the end of my first three years on the Merri-Bek Council Disability Reference Group - first published on LinkedIn in September 2024. In August 2024, we marked the final meeting of the Group. For three years, we met regularly to provide local disability community input into a range of council plans and decisions while supporting the delivery of the council’s Disability Action Plan.
In the last meeting, we reflected as a group on why we joined, what’s worked and not worked, and what we’ve gotten out of our time together. It’s these reflections I want to share with you all today. Things got emotional as I realised the importance of having our voices heard and how this group shaped my approach to work.
At the start of the DRG term, I thought I’d join the reference group to give back. The corporate sector has trained me to transform human experiences for business outcomes, and at the time, I’d just started leading accessibility and inclusion at nbn. I thought I could help the council by sharing my knowledge and maybe sprinkling in the voice of a disabled parent along the way.
What actually happened was that it changed the way I understood disability inclusion and my approach at work.
What even is a disability reference group?
A Disability Reference Group is a formal group that provides input on key topics, often relating to customers or employees. It offers a structured format for hearing from a community of people and supporting business and organisational decisions that may impact that community. There are commonly agreed terms of reference, and meetings are typically convened and chaired.
DRGs are a form of qualitative research that guides decisions from discovery through design and delivery. Unlike advisory boards, which often require lived expertise rather than lived experience, DRGs focus on the latter. They also differ from employee resource groups, which primarily support employee members with common challenges but are not typically designed to provide safe and robust input into business or organisational plans.
As organisations listen to the voices of marginalised groups, there is a natural move away from supporting people to absorb microaggressions and soft bigotry towards safe and robust inputs to address structural inequity. Australian Disability Network considers DRGs a sign of maturity and offers a template for setting one up.
DRG’s harness the power of lived experience
DRGs harness the power of lived experience for business and organisational outcomes. As a researcher, I know first-hand how listening to people is core to quality business decisions. It’s no accident that two of the 12 goals in nbn’s Accessibility Action Plan focus on listening to the lived experiences of disabled people (customers and employees).
“My voice had some significance, not shoved into a corner as an inconvenience.”
I’ve written about lived experience as a lived expertise on here before.
What I failed to truly appreciate is how uncommon and validating it is for people with disabilities to be listened to, especially those experiencing exclusion from work or social life.
“The act of being able to contribute when the government says I’m too disabled to work”
For some in the group, this was a significant source of feeling human, connected, and heard. It was proof that their lives mattered against the daily onslaught of microaggressions and soft bigotry that disabled people so often experience.
“It’s been hard to meet people since moving here. This has been a way to meet other disabled people and connect.”
I reflected on my experiences of being excluded from work and social life. I am a disabled person, and I have a full-time, well-paid corporate career, a mortgage, and a family. In the eyes of our ableist society, this means I still hold value in the world despite being disabled.
As a disabled person, there is relative privilege in the roles I hold. I do experience exclusion, but my experiences of exclusion are from places I aspire to be, which are rarely places we all have the right to exist in.
I didn’t fully appreciate how humanising being a part of a DRG was for others.
The importance of disabled-only spaces
During my time in the Merri-Bek DRG, I saw first-hand the value of spaces designed solely for disabled people or carers. We chaired the meetings and the discussion topics, which were initiated by the council and centred on our input. Access needs, energy levels, and mental impact were considered from the start, and feedback was requested in a flexible manner. Our input was requested in and out of sessions, and no pressure was put on how or when the input was provided.
The disability coordinator, George, was himself a safe space to share. He would always listen, take action, and share progress with the group. This resulted in a space where we openly shared our perspectives on various issues, allowing us to learn from each other. A frustrating aspect of disability and accessibility is the contradictory needs within the community.
“I now understand the need for bright colours for vision impaired people, which clashes with my need for more neutral colours as AuDHD’er”
Through this, I developed an appreciation for what I didn’t know and didn’t experience.
Allyship lightens the load
It’s often said that the cultural load of change can burden a community. Constantly speaking up or organising events to raise awareness of the plight of a marginalised community takes its toll and can brandish someone as single-minded. Disability is no different.
The challenge can be harnessing allyship while having safe, disabled-only spaces.
I’d come into the Merri-bek as a co-chair of nbn’s Accessibility Network, co-chairing alongside Tracy Davenport - a non-disabled executive leader. Along with ExCo sponsor Will Irving, we had made a deliberate decision to include non-disabled people in our employee reference group. If people want to help share the load of awareness-raising and event organising while also role-modelling allyship, we welcomed them.
While not everyone agrees with this approach, I stand by this decision. Anyone is welcome to help, provided they let disabled people speak for themselves. It also negates the need to disclose to be involved - many people joined then identified as disabled.
Lived experience, but make it safe and robust
At the same time, I also recognised the need for a disability-only space. Business demand for inputs from employees and customers with disabilities was increasing. The importance of the requested inputs was growing. We needed a way to ensure the advice and feedback from people impacted by disability was safe - for those hearing and sharing their experiences - and robust - for the business decisions being made.
Inspired by the Merri-bek DRG, I established a disability reference group within our accessibility network. This employee reference group provided a dedicated space for input on disability-related business decisions.
This reference group shaped policies and processes, guiding the delivery of the access and inclusion plan. In the same way, our Merri-bek DRG has influenced council programs for more accessible shops and businesses, Open Space Strategy, Transport Strategy, Public Toilet guidelines, Advocated for Accessible Trams for Sydney Road and elevated the importance and increased awareness in Council about disability (visible and invisible) and carers.
Thank you to the DRG members for helping me unlearn and openly share moments of vulnerability and fear.
Unlearning prompts
If you’re a member or a sponsor of any resource or reference group, consider
The value of lived experience
Who can speak for who
Is it safe for the people involved
Is it robust for the decisions being made
What might being a part of one of these groups mean to someone
Join the unlearning.
You can subscribe to learn with me. I’ll share what I learn (and unlearn) about accessibility and disability. Together, we will consider the implications for impactful commercial and human outcomes.