So you want to be a disability advocate!

One of the most common emails, LinkedIn messages, and comments I receive sounds a little bit like this:

“Hi Ebe! I’ve been following your work for a while and I’m wondering if you have any tips for getting started as an advocate?”

I love getting this kind of message for two reasons. First, because we always need more people getting involved in the good fight: different networks, experiences, locations, and perspectives are exactly what we need to drive systemic change across policies and institutions that shape the lives of people with disability. And second, because that person clearly felt confident enough to reach out and trust me with a moment of their vulnerability: admitting that they weren’t sure where to turn or what to do next.

Having accepted recently that I cannot make time in my calendar to meet individually with every single person who gets in touch with me about this, these days I try to add as much value as I can through pointing people in the right direction and making referrals. But last week, I noticed that I was often sending a similar collection of ideas and resources in response to these messages.

So, this week, here’s Step 1 in my starter guide for anyone interested in getting into systemic advocacy: get informed.

If you see the value in joining an advisory group, writing submissions, getting involved with disability representative organisations, or anything else that helps to shift the structures, attitudes, and cultures that shape the lives of people with disability, this is for you! If you know someone who would be a fantastic disability advocate, a young person looking for their next move, or a researcher who wants to add an advocacy through-line to their work, I’d love it if you shared this with them.

Step 2: Get connected, and Step 3: Get started, will follow in coming weeks. I’m looking forward to hearing what you think! Make sure you’re subscribed so you don’t miss the next ones 📩

Systemic advocacy is a distinct form of advocacy which focuses on leveraging systems, structures, policies, and community attitudes to advance a social or political cause.

Systemic disability advocacy, then, is the advocacy that we do to change systems, structures, policies, and community attitudes to advance the rights of people with disability and to make our society more accessible, inclusive, and disability-led.

Understanding the difference between systemic advocacy and other forms of advocacy (e.g. individual advocacy, family advocacy…) is an important starting point. The Disability Advocacy Network of Australia has a great text and video resource on this called “What is advocacy”.

From there, it helps to understand the difference between ‘within systems’ and ‘beyond systems’ advocacy.

Briefly, ‘within systems’ advocacy refers to actions and approaches we can take which work with existing systems and structures: for example, making submissions to a policy review process, attending government advisory groups, and leveraging relationships with politicians and bureaucrats to create change. On the other hand, ‘beyond systems’ advocacy starts from the position that the status quo is broken and that entirely new systems and structures are required to achieve genuine justice: ‘beyond systems’ advocates will be more likely to use techniques like protests, demonstrations, and grassroots movements to design new ways to approach enduring challenges outside of traditional institutions.

‘Within systems’ change can look a bit slower and more incremental. ‘Beyond systems’ change can look radical and rapid. There are always proponents and critics of each: ‘within systems’ advocates can be criticised for pandering to authority, while ‘beyond systems’ advocates can be criticised for not being constructive or burning bridges with those who have the power to make change.

In reality, most of us use a little bit of each but will have different strengths and comfort levels with these different approaches. For example, I feel extremely uncomfortable at protests and demonstrations: they are a sensory and social nightmare for me. I’m a details person and feel like I can’t get a specific enough message across in environments like protests as I can in other forms. I love to write, though, and the kinds of systems I work in (higher education, governance, policy reform) tend to respond well to written submissions and carefully presented ideas and solutions during advisory group meetings.

We will also all have different views about what is effective in different contexts. You don’t need to decide what kind of advocate you will be now, but it is worth being aware of what you are doing, how, and why.

Yes, disability advocacy has history! From the disability rights movement, to the history of Australian disability policy, to the local and national elders of our community, there is so much to learn before getting involved.

This will of course vary a bit depending on your interest area, but here are a few places to start.

It’s the central tool we use across a range of different advocacy areas, research topics, and community conversations, so you need to know about it!

• Learn about the history with the United Nations. (🖥️ Webpage)

• Enrol in the free online course ‘CRPD: A to Z’ hosted by the International Disability Alliance (IDA) (enrol using this Microsoft Form 📄).

• Read about the history of the Australian disability movement via People with Disability Australia (PWDA). This is a shorter, potted version of our history that outlines some of the key points and milestones in our movement. (🖥️ Webpage)

• Read the “Disability in Australia: Shadows, struggles and successes” report, prepared by Lorna Hallahan for the Disability Royal Commission. It’s available in full report form, Easy Read, and Auslan, and I return to it often. This is a much longer form exploration of the Australian disability movement, worth a deep dive. (📚 Multiple formats)

• Relatedly, explore the submissions, reports, and testimony shared during the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (Disability Royal Commission, or DRC). Hundreds of disabled people generously and painstakingly shared their experiences, thoughts, and perspectives during the DRC, and we can pay respect to them by continuously returning to them and learning from them. (🖥️ Website, multiple formats)

Here are a few to start with…

• Stella Young’s TED Talk, “I’m not your inspiration, thank you very much”. A cornerstone of the Australian disability rights movement: you will hear others in the movement reference this often, as Stella explores the concept of Inspiration Porn she originally developed in the ABC’s online disability mag Ramp Up. Rest in power, Stella. (🎥 Video, 9 minutes)

• “Elevating Yarns/Yarning Disability”, a podcast collection by First Peoples’ Disability Network (FPDN). In this collection, you will learn about some of the founding and influential elders and leaders of the First Nations disability rights movement. (🎧 Podcast)

• Peta Hooke’s “I Can’t Stand Podcast”, which shares disabled stories from Australia and beyond. Scroll through the feed and pick a few episodes on topics or interviewees that interest you. Some of my favourites are “From Iron Lung to Icon: Honouring Ed Roberts with Professor Scot Danforth”, “No Seasons: Trans Identity, Disability and IVF at Melbourne Fringe with Oliver Ayres and Kaite Head”, and “Exploring The Beauty Of Sound Through Deafness With Fiona Murphy”. (🎧 Podcast, five seasons and counting!)

• Alice Wong’s autobiography, “Year of the Tiger”. This memoir explores Alice’s journey in the disability rights movement in America through essays, art, and interviews. Vale, Alice. (📖 Book, memoir)

• The edited collection “Growing Up Disabled in Australia”, compiled by Carly Findlay to bring stories from the vibrant Australian disability community together. You will meet new and familiar faces in this collection which puts the full diversity of our community on show. (📖 Book, essay collection)

• Australia’s Disability Strategy (ADS): this is the central, national-level guiding document that (allegedly…) underpins all national policy and resourcing decisions. There are lots of different action plans, strategies, and related documents in this ecosystem, so I recommend having a scan of the latest version of the ADS itself and following the rabbit holes from there.

• The Disability Discrimination Act: Most of our legal protections in Australia fall out of this legislation, including in education, employment, and public spaces. The Australian Human Rights Commission (AHRC) is a great resource for some less dense ways to understand the DDA.

Walking into a disability advocacy engagement (or any movement, for that matter) without understanding who has come before you and how you got here is a risky manoeuvre. Unintentionally, you may come across to others as uninformed or naive, or potentially cause offence to those who might have been working in the space for many years. You are also missing out on learning the incredible stories of disability advocates from years past, which contribute to the rich disability culture we experience today. Tread mindfully with respect and an open mind, and the community will embrace you.

Our learning journeys are never complete, and there is always more to explore. In Step 2: Get connected, I’ll share a bit more about how to stay engaged with the disability community and representative organisations locally, nationally, and internationally; and how to find resources that are relevant to you and your interest area.

In coming weeks, I’ll be sharing Step 2: Get connected, and Step 3: Get started. I’ll be exploring ways to understand your local advocacy landscape and community, and how to find opportunities to get involved as we progress through this series. If you have any requests, please pop them in the comments!

I have 0% interest in gate-keeping the advocacy community. So many of us have learned hard lessons and spent a significant amount of energy working out what’s worth our time, which sources are trustworthy, and which organisations will value disability partnerships. There is no value in anyone needing to waste time or energy on these things again, because it detracts from the passion and zeal newcomers can bring to their advocacy. That’s why sharing these insights is so important.

At the same time, I strongly believe that good advocates are informed, connected, and take action on this basis. Understanding the history and culture of the community you are wading into is important, and ignoring this context has consequences. You might waste time trying things that others have proven are ineffective, misunderstand the lived experience of others by focusing solely on your own, miss out on opportunities to collaborate on ongoing work with existing resourcing, or lose valuable learning opportunities that will make you a better advocate.

Most importantly, I meet and observe a lot of young advocates who burn out very quickly. I have been there. Multiple times. Becoming informed and connected can offer a protective effect against burnout, and learning how to take sustainable action is part of looking after yourself to sustain your ability to progress the causes you believe in.

I’d love to hear your feedback and thoughts on this guide so far. And, if you have any resources or networks to add, pop into the comments and share them with the Higher Hopes community! I would love for this comment section to become a living database of resources, stories, and art for advocates new and experienced to be able to explore.

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