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 📩

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Step 1: Get informed

What is systemic advocacy?

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”.

Within vs. beyond systems change

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.

Learn the history

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.

1. Understand the United Nations Convention on the Rights of Persons with Disabilities, or the UNCRPD.

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 📄).

2. Learn our local Australian disability rights history.

• 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)

3. Read, watch, and listen to the stories of current and former national and international movement leaders.

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)

4. Get across some key documents and policies.

• 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.

Words of advice

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.

What’s next?

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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And, a week later… NCVER apologised.

We unreservedly apologise. On this occasion, NCVER fell short of the expectations we set for ourselves, and those expected of us by governments, stakeholders and the broader community to ensure the VET system meets the needs of users. (NCVER, 6 August 2026)

Surprised? Me too, honestly.

It’s a difficult thing for organisations, especially ones tied to government, to admit publicly that they got something wrong. There’s a lot working against that kind of admission: the instinct to protect one’s reputation, the fear of what admitting fault might open the door to, and most unfortunately, the sense that changing course looks like weakness rather than good judgement or leadership.

Apologies from organisations are also challenging in a particular way, because they’re made publicly and officially on behalf of a large entity rather than an individual. Systems, power structures, and institutions have the capacity to perpetuate harm that communities have spent decades trying to dismantle. As a result, an apology from an entity of that size carries a different weight and significance than one person saying sorry to another. They represent something very different.

I’m glad that this story has taken a hopeful turn. Our community needs some glimmers at the moment, for sure!

So, this week, here are some of my thoughts on what elements can make apologies authentic and less likely to be received as lip service.

Naming the harm specifically

A good apology names the harm precisely, and explores how it might have been experienced by the people on the receiving end. For example:

The classifications used within the VET Information Standard were drawn from an outdated classification standard which was undetected prior to publication of the new standard. We recognise that some of this language is offensive to people with disability and may affect whether individuals feel respected, represented and willing to participate in national data collections. (NCVER, 6 August 2026)

That specificity doesn’t take back the harm; nothing does. But there’s something powerful about an organisation properly recognising and labelling what it’s done; partly because one must understand a mistake fully and deeply in order to learn from it, and partly because you can’t build a targeted solution to a problem you’ve only described in the vaguest terms.

Identifying the harm specifically also allows for more significant opportunities to make change. It enables organisations to identify and expose the link between a single misstep and the broader system of marginalisation or oppression it sits inside. NCVER’s mistake wasn’t really just about a handful of outdated and offensive data descriptions: it was one small, recent instance of a much older pattern, where disabled people get pathologised and our conditions described by systems that were never built with us in the room. Disabled people were neglected during the development of this instrument as a result of long-standing attitudinal biases against disabled expertise and low expectations of how and where we can add value to organisational decision-making, not simply as a one-off omission.

It’s easy to say “we used the wrong source” or “we published something incomplete”. It is much harder, but far more meaningful, for an organisation to admit its own role in perpetuating inequality.

Remediation and prevention are two different jobs

Remediation and prevention need to be handled in related discussions but administered separately. They solve different problems on different timelines.

Fixing the immediate harm has to come first; if there’s harm that’s present or recent, that gets addressed straight away. The promise of a broader systemic fix down the track is never an excuse to let the current damage sit unattended while everyone waits for the bigger process to grind through.

Then there’s the separate, slower job of fixing the process, the system, or whatever root cause produced the harm in the first place. In NCVER’s case, the immediate mistake was the clumsy replication of outdated, pathologising language that was nowhere near grounded in current evidence or community language. But, the system underneath that harm was a long-standing failure to respect the role disabled people and disabled experts should have been playing in building a classification system like this one from the start. This is a data instrument that determines how disabled VET students get counted and understood, but disabled people weren’t meaningfully part of building it: this omission sends a powerful message about who was assumed capable of contributing to something this complex. Preventing this from happening again will require long-term cultural and institutional change.

Both jobs matter. Skipping to system reform without addressing existing harms risks further damage to relationships with those who are left feeling forgotten in the present moment. Failing to move on to prevention after remediation just resets the clock until the next version of the same problem turns up.

Maintaining community relationships and rebuilding trust

Ongoing accountability, done well, requires regular updates on the progress being made against whatever commitments the organisation made when it apologised. These should arrive without the community having to chase them down.

It also requires the creation of real opportunities for the community to be involved in shaping the solution, in ways that are sustainable and properly compensated. Asking those harmed to come up with the fixes for free is not conducive to the rebuilding of trust. Nor is locking those affected out of the remediation and prevention processes entirely. Organisations committed to genuine improvement will need to navigate this nuance carefully.

Lastly, leadership from the community needs to be invited and valued on its own merits, rather than deferred to because it looks good on the next progress update. In the case of NCVER, I will be looking for evidence that people with disability and our organisations have been involved in the amended standards in a legitimate way before I will be willing to accept their next proposal.

A word of encouragement

This débâcle has reminded me of something that often frustrates me, which is the way we treat leaders who change their minds. When decisions get revised because new evidence came in, or because the people affected by it were finally heard, we tend to reach for the same tired headlines: “broken promise”, “backflip”, “backdown”. We use these words to punish people for updating their views. Sometimes, the criticism is warranted, but often, it’s lazy. I’d love to live in a world where changing your mind for good reason was treated as good leadership, full stop, rather than something that needs to be spun or apologised for on top of the original apology.

Acknowledging harm isn’t a failure, and realising your first instinct on something was wrong isn’t either; it’s a recognition of the perspective of the people who were harmed. Moving forward from that, learning from marginalised communities, and responding with proper accountability is what leadership is meant to look like when it’s working.

Somehow, we need to get comfortable with saying we didn’t get something right, changing course, learning from it, and doing better next time, without that whole sequence being treated as a PR exercise.

On the other side, reaching for pitchforks to wield against organisations that have named the harm they caused, engaged with its impact, and made real commitments to fixing what produced it isn’t especially productive. Every permanent grudge held against an organisation that has turned up and done the work of repair is an ally lost; and allies, held onto properly, are much of what our bigger project of equality and justice runs on.

Of course, there’s a risk of grovelling. I’m not suggesting that we take every institutional apology at face value and skip off into the sunset. But I do think that if we don’t give deserving institutions space and support to improve, the current state of things stays exactly as it is, which is the whole problem we started with.

The balance between accountability, encouragement, and scrutiny is a tough one to walk, but we must.

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Instead, it would seem that NCVER has been living under a rock, or floating around like a clueless baby in space while the rest of the world had several decades of conversations about disability rights.

The VET Information Standard is the national data schema that governs how vocational education providers report on students, including students with disability. I am interested in Element DESH0007, “Disability type,” if you want to look it up yourself, which I recommend only if you have the emotional bandwidth for it today.

Here are the four most unhinged things I found in it.

4. Autism is apparently still just a collection of “obsessive, ritualistic, stereotyped and rigid behaviours”

I am autistic. I am also, according to this national data standard, someone experiencing “disturbances in cognition, interpersonal communication, social interactions and behaviour.”

This is the actual, official, currently-in-use definition a Cert IV student like me gets filed under when a training provider ticks a box on an enrolment form.

I hadn’t thought about how disturbed my brain was for a little while, so thank you for the reminder, NCVER. Truly a public service. It is always nice to be reminded how much you don’t belong, and how much of an inconvenience you are, by government no less. I was just sitting here doing my Cert IV in Auslan, minding my own business, and now I can remember I’m a disturbance.

Luckily, I could use my “obsessive, ritualistic, stereotyped and rigid behaviours” to draft a strongly worded email with my feedback to the VET Information Standard team. I am, unsurprisingly, yet to receive a response.

Somewhere, a very tired person in the ‘90s wrote this definition for a diagnostic manual or statistical collection. Instead of asking people with disability for something from the modern age, NCVER kept it. Laminated it. Possibly framed it. I like to imagine it hanging in a break room next to a “Live, Laugh, Love” print and a giant tub of Moccona.

3. There’s no internal logic to the categories at all

If you’re going to build a national classification system, you’d think you’d pick one organising principle and stick to it. Impairment type? Sure. Functional description? Fine. Diagnostic category? If you must. Instead, we get an unhinged collage of all three: “Physical” sits next to “Neurological”, “Speech” sits next to “Specific learning”, and “Medical condition” is somehow its own category, distinct from all the medical conditions already covered by the other categories.

Ah yes, “Medical condition.” So specific. So illuminating. Truly the taxonomic precision I’ve come to expect from a document that also thinks “Deafblind” and “Speech” belong on the same list as if they’re comparable concepts or useful ways to categorise and understand someone’s interaction with education.

I assume my epilepsy sits under “Neurological”, not that classifying me there tells you anything about what I need to succeed in my VET course or how it varies from someone with, say, Alzheimer’s, which would also be classified there.

This is more than technical pedantry, though it is extremely fun to be pedantic about tertiary data. When your categories don’t share a logic, your data doesn’t mean anything consistent or useful, and you can’t meaningfully compare it to anything else, including, conveniently, the data collected by the higher education sector. At the exact moment everyone is talking about harmonising VET and higher education.

Almost like nobody checked whether this system could talk to any other system before publishing it.

Almost like nobody was going to check anything at all?

2. “Psychiatric” is still parading around where “psychosocial disability” should be

The community and even the NDIS moved to describing “psychosocial disability” years ago. This terminology reflects a conceptual shift, emphasising the idea that disability isn’t stapled to a diagnosis and “symptoms”, but something that emerges from the friction between a person and a world not built for them.

NCVER’s response to this shift, as far as I can tell, is to ignore it. “Psychiatric” remains the term of choice: tidy, diagnostic, and about twenty years behind everyone else.

I’m sure there’s a very good reason for this. I’m sure it’s not just that nobody looked at it again after it was first typed up. I’m definite that it’s not because there was nobody with any lived expertise (or disability expertise at all) in the room. Definitely. Not.

1. Nobody with disability appears to have been anywhere near this

Every problem above, the pathologising language, the incoherent categories, the outdated terminology, is the kind of thing that gets caught immediately if you consult people with disability before you publish a national data standard about them. It doesn’t get caught if you don’t. Funny how that works.

Article 4.3 of the UN Convention on the Rights of Persons with Disabilities requires governments to consult people with disability on decisions that affect us. A national classification schema that determines how disabled VET students are counted, funded, and understood is exactly the kind of decision that provision exists for.

Reading this document, it is very hard to believe that happened. As a chronic trouble-maker in tertiary education policy, I would be extremely surprised if any community consultation happened without me knowing about it or being roped in somehow.

Where do we go now?

Hopefully you’ve felt the sarcasm dripping from this post. This is not my usual tone: I’m writing like this because it’s the fastest way to get people in the tertiary sector to read to the end of a post about a data standard, which is not usually a page-turner. The standard itself also beggars belief such that incredulity seems to be the only reasonable response.

The underlying issue, however, is not funny. This schema determines how disabled students in the VET sector are counted, described, and understood by the system that’s supposed to be supporting us. It will shape how practitioners think about the students in front of them, and just as importantly, what gets prioritised in funding and service design.

At a moment when VET/higher education harmonisation is on the table as a policy priority, having VET’s disability data built on an incoherent, outdated classification logic undermines that sectoral project. It also takes us back decades in the disability rights movement.

This is a regressive act by NCVER, whether or not anyone intended it that way.

I’ve written to them directly about this (on 17 July, no response at time of writing). If you work in the sector and this grinds your gears, I’d encourage you to do the same. Contact them here. Or, share your thoughts in the comments.

In case of a dirty delete by NCVER, you can access the full disability standard here in PDF, and here in HTML. You’re welcome.

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Second, it’s the tenth anniversary of the Disability Leadership Institute. Founded by the inimitable Christina Ryan in 2016, the DLI has been a leading voice in lifting community expectations of people with disability as leaders, and developing the concept and practice of disability leadership as a distinct discipline.

Disability leadership is not simply about a person with disability being a leader (though it is of course that, in part). Disability leadership is a unique leadership practice which leverages our attributes, strengths, and requirements as people with disability: not in spite of disability, but because of disability. In disability leadership, we throw out the narrative that disability is something to be overcome, or that our capacity just needs to be sufficiently ‘built’ to be capable of executing leadership. Instead, we identify our skills of excellence and hone our self-awareness, self-compassion - and yes, pride - to develop a powerful toolkit to lead in our own ways.

I am not, generally, a “leadership course” person. I have sat through enough of them over the years, run by and for people who have never had to think about access, disclosure, or the particular exhaustion of being some kind of token (queer, disabled, young person, culturally marginalised, pick one…) in the room, to be wary of the genre.

But this year, I took a deep breath and enrolled in one through the DLI, supported by the Sue Salthouse Leadership Fund and the Morgan Family and Perth College OGA Bursary Trustees. I went in with cautious optimism, armed with my confidence in Christina and her team to deliver something nuanced, rights-based, and interesting. And, I’m pleased to say I was not disappointed.

Overall, the difference in partaking in a development opportunity designed by and for people with disability versus a stock-standard option is night and day. For reasons I’ll explore shortly, seeing disability as a leadership asset and parameter rather than a limiting factor to be overcome is a game-changer.

Here are some of my musings and reflections from those eight weeks of learning alongside disability leaders around Australia. Not a sponsored post, but maybe it should be - my DMs are open!

Vertical and horizontal development in disability

Something I hadn’t come across before was the useful distinction between horizontal and vertical development. Horizontal development targets discrete skills, knowledge, technical competence: the things you can easily put on a CV in a bullet list. Vertical development is less tangible, but just as important. Vertical skills encompass how you make meaning, hold complexity, take perspective, and lead through uncertainty when there is no clean answer available. Another way: horizontal skills are the tools in your toolbox, and vertical skills constitute your framework for deciding which tools to use in which situations. To me, this is a more useful framing than soft vs. hard skills which recognises the inherent value and essential nature of both.

Most professional development targeted directly at people with disability is horizontal: another certificate, another competency framework, another training module to build our capacity as if that’s the barrier to us gaining a seat at the table. None of that is wasted, but it’s also not where the leadership challenge sits, in my opinion. Disability leadership doesn’t just require expertise. It requires systems-thinking, adaptability, and values-based judgment under conditions that are rarely tidy or designed with us in mind. You are constantly making calls about competing priorities, limited resources, and lived experience realities that don’t fit neatly into a conventional framework. That’s vertical work, and it’s largely invisible in how mainstream conversations about leadership play out without acknowledging the contexts we operate in.

Being the ‘only one’ is leadership development, whether you asked for it or not

Across those eight weeks, we kept coming back to a central theme: disability leaders may disproportionately develop strong, post-conventional leadership capacities because of repeated exposure to structural barriers, isolation, and challenges. Constantly navigating systems that weren’t built for us and confronting ableism on the daily builds a kind of leadership capability that more conventional development paths don’t consider. Call it trial by fire, making diamonds under pressure, or learning the hard way. When you work with a disability leader, you can be sure you’re going to get some creative, out-of-the-box thinking, because that’s what we’ve needed to develop to survive and thrive.

I don’t think leadership courses can train this capability, but they can help us to identify our own sources of development under pressure and the strengths which have emerged from them. I can think of a few moments in my career which certainly fit the bill here. I’m sure you can too, or perhaps you’ve observed a colleague or a friend going through one. We could spend time and energy lamenting that they happened (I certainly have), but we can also take the lessons and strengths forward and use them against the systems that put us in those positions in the first place.

Self-management without the grifty energy

I’m instinctively suspicious of “manage your energy” content in professional contexts. Most of it seems to be, for me, somewhere between unhelpful and actively frustrating, because it tends to individualise problems that are structural: under-resourcing, unclear role expectations, and the relentless emotional labour that comes with advocacy and systems critique work.

Christina’s framing was different and much more useful. Developing a personal leadership style that draws on my strengths - or skills of excellence! - requires noticing things. Noticing when I am operating at my best, what knocks me off course, what helps me recover and re-engage. That’s a different exercise to being told to set boundaries in the abstract, or to apply one-size-fits-all suggestions about working styles that aren’t grounded in the reality of my neurotype, working context, or weekly patterns. It’s concrete enough to act on, but flexible enough to be relevant. As a PDAer, my brain needs me to come up with my own solutions rather than be given them in order to be able to take them on.

Obviously, self-management doesn’t fix structural problems, and we shouldn’t be prescribing it as if it does. But it can help us get the best out of ourselves on our own terms. Then, we’ll be better positioned to be able to tackle those structural problems when we choose to step into the fray.

Who I am, in twenty words or less…

A small, practical shift: I’ve landed on a single sentence that now does a lot of work for me.

I’m Ebe Ganon-Davey: I’m an independent disability advocate and researcher, predominantly working in higher education, inclusive employment, and human rights contexts.

I know it sounds minor. It isn’t. Anyone doing cross-sector work, especially work that spans research, advocacy, governance, and whatever else seems to appear on my calendar, knows the cost of constantly re-explaining yourself to new audiences. Having a clean, accurate version of this on hand has reduced the context-switching tax and let me present myself with more consistency across very different rooms. Especially helpful for someone who can get easily distracted and overwhelmed in a room of new people!

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What’s next?

The horizontal/vertical distinction is now sitting underneath how I think about my own professional development approach, which is very helpful for prioritisation. The reframe on “being the only one” is shaping how I talk about representation and resourcing in the governance spaces I work in. And, the shift in how I think about self-management is informing how I structure my own time across my PhD, advocacy, community engagement, and downtime, rather than assuming I should simply be doing more of all of them.

If you’re a training and development manager or HR practitioner looking for learning engagements for your disability leaders, please don’t pick something generic because it’s easy and the supplier is on the right panel. This article hopefully illuminated why that doesn’t work.

Instead, offer something tailored, disability-led, contemporary, and grounded in human rights and emancipation. If it’s not the DLI or something like it, maybe it’s a smaller local practitioner with lived experience. If you genuinely care about supporting the development of your disabled leaders, this is essential. Community connection builds trust, pride, and confidence.

If you’re someone navigating leadership in this sector, whether formally or simply by virtue of being the only disabled person in rooms that assume you aren’t, I’d be curious to hear what’s helped you build the vertical, judgment-based side of leadership, not just the credentialed side. Drop it in the comments if you’d like to share with the Higher Hopes community 🙏

More information:

• Check out the Foundations of Disability Leadership program and other offerings by the DLI.

• Read a couple of articles about disability pride from the Centre for Accessibility Australia, Right to be Heard, and the Cerebral Palsy Alliance.

• Finally, applications for the Hannah Morgan Endeavour Award are open again and all young Perth College alumni are eligible to apply - not sure if I have any ex-PC readers who got lost and found their way here at some point!

Apologies for remaining typos in this article. My keyboard needs a clean and my ‘L’ key is misbehaving and I got to the end of my patience quotient by the end of the piece!

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Thankfully, mine went well. Nobody is going to kick me out, and I have external validation that the project I’ve conceptualised isn’t completely unhinged or detached from reality!

I feel like I can now share, without jinxing the whole thing, what my thesis is going to be about. For my parents and all the others who have been making encouraging sounds for the last year without any real idea of what I’m working on: this one’s for you.

The problem I’m working on

Australia has had some form of disability employment policy for decades, generally aimed at getting more people with disability into jobs. Instruments like Australia’s Disability Strategy, the Employ My Ability Strategy, and the various targeted action plans sit within this, all underpinned by our right under the CRPD to equitable employment, on equitable terms.

Despite that, the gap between disabled and non-disabled people’s experience of work is well documented and hasn’t shifted much. Lower employment rates, lower job satisfaction, and lower income levels have all been big issues for a long time.

Most people looking at this treat it as a problem with how policy, programs, and services are designed or delivered. I think it’s also a problem with how we evaluate these policies: how we define and measure success.

Let’s take the Australia’s Disability Strategy Outcomes Framework, which is meant to track whether disability employment is “improving”. It measures things like (un)employment rates, median income, how long people stay in a job after an employment services placement, and how many people with disability work in the Australian Public Service (APS). These are generally easy numbers to collect and easy for government to report on. But they all treat a “successful” employment outcome as essentially an economic one: more people working, earning more, staying longer. They are also generally interested in population-level metrics, and service outputs.

The trouble is what these measurement choices incentivise further down the chain. For example, if how long someone stays in a job is the measure that matters, employment providers get rewarded for keeping people in a job: any job, not necessarily the right one, or a suitable one, or one anyone actually wanted.

And it’s just as telling what these frameworks don’t measure. What about job satisfaction rates? Whether a job meets the expectations and requirements of an individual? If a person is staying in a job because they want to, or because they have to? What about all of those people with disability who don’t interface with the NDIS or employment services, for whom we don’t have good visibility of their outcomes and experiences in the same way as those who are entwined in service systems? Nothing on job quality. Nothing on whether the role suits the person. Nothing on workplace culture or whether employers actually have the capability to support disabled staff, despite those things being named as priorities elsewhere in the same policy documents.

I am sure you can think of many, many other gaps - I personally have a giant spreadsheet of them.

But, most importantly, there is no measure anywhere in these high-level policy evaluation frameworks of what the person whose job it is actually thinks about it, and whether they’ve met their own definition of success.

What I’m trying to find out

Disability advocacy organisations have been saying for years what makes work good for disabled people: suitable and flexible roles, accessible and respectful workplaces, meaningful work. But these insights haven’t really found their way into peer-reviewed research or into how we evaluate policy. Meanwhile, most academic research in this space relies on large existing datasets, using narrow, eligibility-based definitions of disability, and applying measures of job satisfaction or quality that have never been checked with disabled people to see if they mean the same thing to us as they do to the researchers using them.

To deal with this, my thesis is asking three things:

• How do people with disability actually interpret and prioritise the measures currently used to define a “successful” employment outcome?

• What does success at work actually look like to people with disability, both as individuals and as a community?

• What can disabled people’s perspectives on this tell us about how we should be evaluating disability employment policy, and researching disability employment more broadly?

The theory bit, briefly

There are two ideas underpinning this project.

The first is that evaluation is never a neutral, technical exercise. Deciding what to measure, and what counts as a good outcome, is itself a decision about whose priorities get to matter. Choosing to measure job tenure over job quality reflects an assumption about what employment is for: and specifically, what disability employment policy is about, according to those setting the agenda. Critical policy studies gives us language to unpack all that, but you don’t need the theory to recognise it in practice: every KPI is a small argument about what success means. The measures and metrics in this policy ecosystem represent the version of policy success that those who occupy positions of power prioritise, not the priorities of the disability community which has everything to gain (or lose) in the policy game.

The second is from critical disability theory, which treats disabled people’s own accounts of their experience as legitimate evidence in their own right, not as anecdotes to be validated by “harder” data. In practice, that means I’m not starting from an assumption that existing research measures of job satisfaction or job quality are correct and just need to be applied more consistently to disabled people. I’m asking whether those measures reflect what disabled people actually value in the first place. Critical disability scholarship also demands continued focus on research that will improve the experiences of people with disability in reality, with a staunch commitment to emancipation, human rights, and disability leadership. You can see why this is my jam.

So, what are you actually doing?

I think this is the question most people are actually asking when they ask what your PhD is… My project has three parts designed to work together.

First, a survey of people with disability. I’ll present some concepts researchers already use to describe employment success alongside those I’ve outlined that come from the policy ecosystem, asking people to describe what each one actually means to them and how significant it is to their experience.

Second, interviews with a sample of respondents from that survey group, to dig into why they answered the way they did and what the survey (and existing measures) missed.

Third, six co-design workshops over six months with ten people with disability acting as design partners. They’ll take what’s come out of the survey and interviews and work through what a shared, community-defined version of employment success looks like, and what an evaluation approach based on that could actually look like in practice.

What’s next

I’m motivated to share updates and insights from this research as they come, because I think it’s important to bring the community along on a journey like this. Ultimately, I wouldn’t be here doing this at this level without the support, guidance, and opportunities I’ve received from community members over the last few years: I owe you!

I also don’t want to hold all the lessons until the end: there are things we can fix, improve, and apply now to improve the experiences of the disability community in employment. For lots of the insights that will arise, there’s no logic in waiting until they’ve passed through the academic machine in full before we start talking about them (notwithstanding ethics and data validation etc…).

Ethics approval is the immediate job. Survey and interview data collection should run through the first half of next year, with results shared back before co-design workshops start in early 2028. Submission is slated for March 2029, all going to plan.

I will be grateful for any time or energy you might be able to offer when my recruitment calls go live. And, any resources you might like to share are greatly appreciated!

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Anywho. Confirmation panel is on Thursday, so naturally, it’s the perfect time to procrastinate talk about the Disability Support Fund (DSF) changes, because there are some things in here really worth getting excited about (unlike Gantt charts…)!

The DSF is one of the programs sitting under the Australian Government’s Disability Support Program, alongside the Australian Disability Clearinghouse on Education and Training (ADCET) and the newer Capacity Building Fund. It’s been running since 2004, giving Table A universities supplementary funding to support students with disability through access, participation, and completion. For most of its life, that money has come with relatively light governance attached to how it’s spent.

That changes this year. From 1 July 2026 it comes with real conditions: universities will require a disability governance committee sitting as a subcommittee of university council, a disability education inclusion strategy, and a disability workforce inclusion strategy. I’ve spent a long time arguing that disability inclusion in higher education needs to be core governance business, not a peripheral add-on managed by an under-resourced equity team. This is that argument finally landing, in legislation, with money attached.

ADCET and Times Higher Education have already done a bit of breakdown on what’s happening, and I encourage you to go and read what they’ve had to say. What follows is a bit of my analysis on the wins, risks, and opportunities presented by these reforms, informed by my advocacy in this area over the last couple of years.

What we’ve actually won

A council subcommittee, with a majority of members required to have disability, advising on how DSF funding is spent and on the university’s broader inclusion strategies, is the kind of structural reform we’ve been pushing for across years of consultations, submissions, and forums that sometimes felt like shouting into the void. For years, the standard has been funding decisions being made behind closed doors, with no transparency, and no requirement for lived experience oversight. This change invites staff and students with disability into the room where money gets allocated, allowing us to ask questions and hold our institutions accountable. It also allows us to inform university strategy and investment on the basis of what we know to be useful, effective, and impactful for students with disability.

This happened because disabled people kept refusing to accept the status quo of people without professional or lived experience of disability making decisions about how this money is used. It happened because there is a collection of high-quality public servants who have used their circle of influence to make genuinely impactful changes to bridge the gap between policy and practice.

The inclusion strategies come with mandatory performance indicators and a requirement for action where a university is underperforming. Under the Disability Discrimination Act (DDA), institutional disability action plans have functioned for years as an insurance policy against universities being sued for non-compliance with their anti-discrimination obligations without resulting in meaningful progress. A strategy with monitored KPIs and a funded independent review attached is a much-anticipated upgrade, and it’s exactly the kind of accountability mechanism this sector has needed. Now, let’s start penalising universities for inaction where it hurts - not by withholding equity and inclusion funding, but perhaps by reducing their research funding?

Universities also now have to publish committee membership and strategies publicly, which gives students and advocates something real to hold them to.

Taken together, this is the most substantial structural change to how universities are required to govern disability inclusion that I’ve seen in my five or so years advocating in this space. That’s not a small thing. This reform is the product of disabled people insisting, repeatedly and over years, that we belong in the rooms where decisions about our education get made - and a government that, on this occasion, actually listened and built something with teeth.

Let’s celebrate these wins, before moving on to the caveats (yes, there are some).

Where there’s more work to do

The governance committee, as designed, is advisory. University council keeps final decision-making authority, meaning that we unfortunately can’t call this authentic co-design or partnership yet. I’d love to see this evolve, with committees gaining more direct authority as the model matures and proves itself, which I think it will. This first iteration gets representation into the room with influence over strategy and spend; the next stage of advocacy is making the case for that influence to carry formal weight.

Remuneration for student and staff members on these committees is going to be left up to each institution: we know how this usually goes. The department has been upfront that they couldn’t resolve it within current guidelines. To be honest, I’d rather have a government naming a problem honestly and flagging it for the next round than pretending it doesn’t exist. As these governance structures and strategies become embedded, there’s a strong case for resourcing growing alongside them, and given the scale of what’s already been committed here, I’m optimistic the Department is willing to keep building.

I’d also like a tighter link, over time, between DSF compliance and TEQSA’s accreditation processes, so these requirements connect into the regulatory system that actually drives institutional behaviour rather than sitting alongside it. Like I said, hit them where it hurts. Given how much the Department has clearly listened on the design of these changes so far, I think that’s a conversation worth having, and one I’m hopeful is still on the table.

Open questions worth watching

Will universities build genuinely engaged committees, or treat the minimum composition as a floor rather than a ceiling? Will the independent reviews prove robust and meaningful? Will these requirements eventually connect into the wider regulatory architecture, so good governance on paper reliably becomes better outcomes for students? How about compensation for lived experience representatives, and investment in effective secretariat support for these committees? Are universities capable of trusting the leadership of staff and students with disability in this capacity?

The implementation timeline is gradual: committees don’t need to be operational until early 2027, with the first full annual report due in 2028. That runway gives the sector real time to build this properly, rather than rushing into box-ticking, and I’d rather have a slow, well-built process than a fast, hollow one.

Where this leaves us

These changes are the direct product of years of sustained disability-led advocacy, consultation, and a department that, on this occasion, listened. Lifting disability inclusion to the level of institutional governance, with lived experience formally represented at council level for the first time, is a substantial achievement, and one built by disabled people who kept insisting we belonged in the room.

I also want to recognise the powerful role that allies have played in all of this: by virtue of the systems we’re working in, disabled people are too often not in the positions that call the shots. I’ve watched a strong group of current and former university executives throw their weight around on this one over the last couple of years - you know who you are. Thank you.

There are gaps still to close around authority, remuneration, funding growth, and regulatory connection. I see those as the next phase of a reform that’s clearly moving in the right direction. I’m looking forward to watching universities bring these committees to life over the next eighteen months, and I’d love this community’s eyes on it too. Let’s keep watching this one together.

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Anywho. I now hold the qualification. I also hold a detailed, first-hand understanding of exactly how the system that credential is supposed to quality-assure is broken; which, in a roundabout way, is useful?

So, this week, I lodged a submission to the Australian Tertiary Education Commission’s discussion paper on tertiary harmonisation: a reform process looking at how VET and higher education can function as a more joined-up system. The goal is to support the development of a Tertiary Harmonisation Roadmap: a reform agenda aimed at creating stronger connections between VET and higher education. The paper responds to a 2025 Jobs and Skills Australia report and sits within a broader government commitment to lift tertiary attainment and better align skills with labour market needs. Its focus is on how learners enter the tertiary system, how they move between sectors, and how providers can collaborate more effectively. Submissions close soon, and the Roadmap is expected to be finalised later this year for government consideration.

If you work primarily in higher education, you might be wondering why this is relevant to you. To me, it’s because the relationship between VET and higher education is, or should be, more porous than either sector tends to acknowledge. Students move between them (or try to). Professionals can retrain through VET before entering or returning to university study. People with disability, in particular, can be disproportionately directed into VET pathways by careers advisers and school counsellors who underestimate their potential, and then encounter institutions that don’t recognise their prior learning when they seek to transition. The state in which students arrive at your door with can be shaped, at least in part, by what happened to them in VET.

Further, the funding and resourcing asymmetries between higher education and VET really warrant scrutiny. When we got a quadrupled Disability Support Fund back in 2025, guess what the VET sector got? I’ll let you imagine. VET sector equity practitioners need the support of university practitioners to lift the capacity of the systems they are working in. Understanding this context and working alongside our VET colleagues are in our best interest if we are invested in a universally accessible and inclusive education system that facilitates choice and success for students with disability.

Support without scale?

My TAE experience sat in the back of my mind as I was drafting my submission. Not because my frustrations with one provider are the point (unfortunately, recent discussions with departmental representatives would suggest that this sits as a very low priority level), but because they’re a small, concrete illustration of the invisibility of disability in VET policy.

RTOs are required under the Disability Standards for Education and the 2025 Standards for Registered Training Organisations to support disclosure, make reasonable adjustments, and provide written reasons when adjustments can’t be made. Just like universities. But, unlike universities, these obligations exist without a dedicated national funding mechanism to discharge them. To my knowledge, there is no VET equivalent of the Higher Education Disability Support Program, which provides dedicated Commonwealth funding to universities for disability support staff, accessible infrastructure, and assistive technology. Disability support in the VET sector is funded, where it is funded at all, through inconsistent state and territory arrangements.

What VET students get is a faint shadow of how university students with disability interact with learning support, which we all know is itself limited and full of gaps. Imagine how much worse it would be if universities didn’t have a dedicated funding bucket and support relied on the kind-heartedness of individual institutions: that’s VET.

I get particularly worried about small providers with both limited funding and a lack of staff capability in disability. If you only employ a handful of staff to deliver your training products, the likelihood of employing someone incidentally or intentionally with a disability support skillset is worryingly low. Negotiating adjustments becomes a bonus add-on to the role of somebody who doesn’t understand how to support disabled students. Students with disability at smaller providers then get less, not because the provider doesn’t care (though, often they don’t), but because the system hasn’t given them the means to deliver.

One of the more practical proposals I made in my submission aside from better funding is a hub model for disability support: a centralised or regional specialist service that smaller RTOs could draw on rather than each building internal infrastructure from scratch. Right now, a small private RTO is expected to meet the same Standard 2.4 obligations (aka, you have to support the needs of all learners) as a large TAFE, without anything like the same staffing or resourcing to do it. A hub model wouldn’t require every RTO to employ a dedicated disability support professional; it would mean that expertise exists somewhere accessible and that providers can call on it as needed, without penalty. The Australian Disability Clearinghouse on Education and Training (ADCET) already performs something like this function at a national information level. Extending that into direct, operational support for providers is a logical next step that doesn’t require building anything from scratch.

Adjustments that don’t travel

One of the other threads I pulled at in my submission was the portability and transferability of support. Every time a student with disability moves between providers, between sectors, sometimes between courses at the same institution, they start again. New evidence requirements, new processes, new waiting periods, often weeks without any support while critical learning is happening around them. All of a sudden, it’s week three and you’re six weeks behind.

To make it all worse, you typically can’t access disability services until after you’ve enrolled, which means the decision about whether and where to study has to be made without specialist input or full information about what support will actually be available. For many students, this risk determines whether they attempt a transition into or between study options at all.

My submission argues for a portable adjustment record: a student-controlled summary of support needs and effective adjustments that travels with them across providers and sectors. Portability principles are already being considered as part of the current DSE review, so this isn’t a new idea, but we have to keep making these challenges visible across sectors, systems, and stakeholder groups to get change.

Low expectations and poor capacity as a structural problem

Students with disability are more likely to be steered toward particular pathways by people who underestimate them, and then face structural barriers that make moving off those pathways harder than it should be. Careers advisers, school counsellors, and admissions staff are not routinely trained to answer questions about disability support across the tertiary system. The national information platforms that students use to compare courses and providers contain no disability-specific content. So, sector “choice” for this cohort often isn’t really a choice as much as a default shaped by whoever happens to be advising them and what that person assumes about their capabilities.

This is a systemic issue, not necessarily one relating to the individual capabilities of the professions above. If the information infrastructure doesn’t require disability-specific content, advisers aren’t equipped to provide it, and providers aren’t required to publish it, then the default will always disadvantage students who need that information most. My submission argues that any harmonised national information platform should include plain-language, accessible content about disability support entitlements across both sectors, and that providers should be required to publish accurate information about their adjustment and support offerings as a condition of appearing in national course tools. Alongside that, investment in the disability capability of the careers and admissions workforce is just as important as the development of trainers and assessors who facilitate learning in VET.

A joined-up tertiary system that doesn’t address this pattern will produce better outcomes for students without disability than for those with it. Smoother navigation of an unequal system is still an unequal system. The goal shouldn’t just be that students with disability can move between sectors more easily, but that they can be equipped to make informed, empowered decisions.

Disclaimer: I am not a VET expert (but I have a lot of thoughts…)

My full submission makes nine recommendations across the themes I covered in this piece. If you want to read the full thing, I’m happy to share it! But, I want to know what I got wrong about how things are working in VET! It’s not a sector I’ve worked in, and I’m sure I’m missing a lot that insiders will spot immediately. Drop your thoughts in the comments 💬

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What wasn’t in scope of this consultation was the issue of the Cert IV TAE, but I remain convinced that this is a really big piece of the puzzle. The qualification that is supposed to build training and assessment capability in Australia doesn’t meaningfully address disability confidence, evidence-based adjustment practice, or accessible design. You can complete it, as I did, without ever being taught how to build universally-designed learning or assessment that works for the range of people you’ll encounter as a trainer or assessor. The 2025 RTO Standards have raised the bar, but the Cert IV TAE hasn’t moved to meet it.

The learning design of the qualification itself was indeed its own category of problem. Inaccessible PDFs. Generic YouTube content. Modules locked sequentially so you couldn’t search or get an overview. And my personal favourite: multiple sections on learning theory presenting contested or disproven frameworks from the 1960s and 70s as established fact. Learning about learning from a course that hadn’t engaged with educational research since before I was born was quite the experience.

As a neurodivergent learner, the cognitive load of compensating for poor content and assessment design while trying to complete this certification was significant. Adjustments that should have been straightforward weren’t. I spent more time documenting quality issues than I did on the learning itself, including flagging wholesale plagiarism in the course content passed off as original material by the content developer. The irony of raising academic integrity concerns with a training provider whose own content didn’t meet basic referencing standards was not lost on me, even if it appeared to be lost on them.

Through this experience, I also connected with a number of people in my networks who have attempted this qualification, often unsuccessfully. A clear trend emerged from the comments on my “happy to announce” Linkedin post celebrating the end of my Cert IV: many highly qualified (often PhD-holding), very intelligent, mostly women, who had found this qualification totally unhinged and impossible to complete for reasons relating to learning and assessment. As a result, these excellent people are not qualified VET trainers and assessors, and cannot bring their value to the sector.

Perhaps, a rant submission for another day? 🫢

Love them or hate them, we really do need government representatives in the room. Most often, I see co-design or co-governance group memberships stacked only with lived experience representatives, without an appearance from technical experts or those with the power and influence to enable the implementation of co-design outputs.

As I’ve previously written, specialised knowledge of technical systems and policy ecosystems can add huge value to our designs, making them contextually responsive, easier to implement in existing frameworks, and resilient to future problems or roadblocks that could have been anticipated if the right voices were in the room. And, like it or not, we still exist in a society where our solutions will require sponsorship and input from those with the ability to turn them into reality.

While those facilitating co-design processes or supporting co-governance arrangements are often focused on briefing and supporting community members, we rarely consider how the public servants in the room can be equipped to show up to contribute constructively.

So, how is it that public servants tend to engage with co-design and co-governance arrangements, and what can we learn from some of these patterns?

To explore this question, I present the six archetypes of the co-designing public servant:

1. The Rabbit in Headlights 🐇

2. The Policysplainer 👨‍⚖️

3. The Gatekeeper 🔒

4. The Ghost 👻

5. The Deferrer 👼

6. The Converter 💡

These archetypes represent collaboration behaviours that are helpful, unhelpful, productive, and obstructive. The goal isn’t to call anyone out, but to offer some structured reflection on what good collaboration between communities and government actually looks like in practice.

Most will recognise themselves in more than one of these types, depending on the day and how well we were briefed before walking in. But, if you see yourself here and you don’t like what you find, it might be time to reflect on how you’re showing up when you work with community…

1. The Rabbit in Headlights 🐇

New to the policy space, or new to co-design, or both. The Rabbit genuinely wants to contribute but is terrified of saying the wrong thing, causing offence, or inadvertently overstepping. It’s potentially the first time they’ve needed to front up to community members face-to-face. The result is a lot of nodding, careful non-committal responses, and insights that never quite make it out of their head and into the room.

The anxiety is understandable. Co-design spaces can feel high-stakes, particularly for someone still working out the norms. But silence leaves a gap that tends to get filled by whoever is most comfortable speaking.

Some suggestions for the Rabbit:

• Community members don’t expect you to have everything right the first time, or to understand their experience the first time you meet them. If you accidentally use the wrong word or an outdated phrase, feel comfortable with accepting a correction and moving forward. Everyone needs time to learn. Come with a curious mind and respectful intent, and watch the rapport and trust build.

• You do need to do the preparation work before you arrive. Read the materials, understand the problem, and come with at least one question or observation ready.

• Remember that withholding useful information isn’t the same as respecting lived experience. Both matter.

• If you’re unsure about what to say, a question is usually safer than an opinion; and often more useful.

2. The Policysplainer 👨‍⚖️

Highly informed, and keen to demonstrate it. For every idea that surfaces in the room, the Policysplainer has a reason it won’t work: the legislation, the budget cycle, the machinery of government, the last time something like this was tried... The contribution is often abrupt, even if it’s accurate.

The issue is that the Policysplainer comes with problems, but no commitment to developing solutions. Like dropping a dead rat at your doorstep, this public servant can suck the air out of a meeting that was otherwise moving forward.

Some points of reflection for the Policysplainer:

• Notice if you’re consistently the person who closes ideas down. Is it because you’re nervous about the workload implication? Does it challenge the way you and your team have been thinking about this issue? What is stopping you from offering the next stepping stone towards a suitable solution?

• Constraints are useful information. They belong in the room. The way you introduce them determines whether they’re a contribution or a veto; and whether you’re coming across as a paternalist or an equal partner in the process.

• For every constraint you name, try to offer something alongside it: a related avenue, a partial solution, a question about whether the constraint is fixed or assumed.

3. The Gatekeeper 🔒

Not openly obstructive, but consistently present when decision points arise. The Gatekeeper is there, officially or unofficially, to ensure nothing too uncomfortable emerges. They’re skilled at redirecting conversations back toward the conventional, reframing bold recommendations in more palatable language, and identifying process reasons why certain discussions are “probably out of scope” when they begin to question convenient foundational assumptions.

Sometimes, they’re there to stop any action items landing with their agency. Other times, they’ve been planted by those with ownership of the process as a means to slow things down, or keep a community advocate in check.

Gatekeepers, consider this:

• If you find yourself consistently steering away from the group’s most ambitious ideas, ask whether the issue is the ideas or your own risk appetite.

• Unless you’re the minister, it’s not your job to decide if a committee is or is not worth your time: if your agency has been called up as a representative on the group, you need to deliver.

• Be honest with yourself about your mandate. If you’re in the room to manage your agency’s exposure rather than to design, you’re taking up a chair that could be occupied by someone ready to be constructive.

4. The Ghost 👻

Physically present, mentally elsewhere. The Ghost hasn’t engaged meaningfully with the pre-reading, isn’t thinking critically about their role in the room, and tends to offer agreement or silence in roughly equal measures. They’re probably working on something else in the background, contributing insufficient focus to both the meeting at hand and whatever they’re multi-tasking on.

Unlike the Rabbit, this is more about disengagement than fear. The Ghost is here because someone had to come, it happened to be them, and they haven’t spent enough time considering why it is important they’re there in the first place. Sometimes this is a composition problem: the wrong person was sent, without adequate briefing or a clear sense of why their participation matters. Sometimes it’s a facilitation problem. Either way, it’s a waste of everyone’s time, including theirs.

Ghosts, if you’re there, have a think about this:

• If you’ve been sent to a co-design process or co-governance committee without understanding why, ask before you arrive. Think laterally and look at the context: are there themes in the discussion that relate to a policy area you own? Do you, or should you, have action items in the strategy you’re co-governing? Is there value you could add? Are there insights you could bring back to your area?

• Come with something: a question, a perspective, a piece of context your colleagues wouldn’t have. I guarantee there is one worth bringing! Try and put yourself in the shoes of your community collaborators, and think about a question or an interest they might have in your area.

• Passive presence in a co-design group affects the dynamics of the room even when you’re saying nothing. It’s awkward. And it’s not a good representation of your agency, branch, or team.

5. The Deferrer 👼

So determined not to be the Policysplainer that they overcorrect in the other direction. The Deferrer withholds genuinely useful information out of deference, declines to push back even when pushback would be helpful, and treats every lived experience contribution as beyond scrutiny regardless of whether it’s moving the group forward.

Their intent is good: the Deferrer wants to respect community advocates and treats lived experience as the one, paramount source of evidence at the exclusion of all else. But, the effect is that the group loses access to knowledge it needs, and the Deferrer abdicates the responsibility that came with their seat at the table.

Deferrers, have a think about how you’re approaching your allyship:

• Deference and respect are not the same thing. You can hold lived experience in high regard and still offer a different perspective.

• Your knowledge and context are why you’re in the room. Withholding them is more unhelpful than it is humility. It’s not good allyship to send community advocates down the wrong path when you can clearly see it’s a dead end.

• At the very least, consider that this is a publicly-funded engagement: it’s not cheap to have so many SES in the room withholding useful information or avoiding conflict to signal respect.

6. The Converter 💡

Our favourite collaborators: our spirits lift a little when we see you enter the Zoom room. The Converter arrives with genuine curiosity and engages seriously with what they hear. They bring contextual knowledge without killing the vibe, are transparent about what’s fixed and what’s negotiable, and ask questions that move conversations forward rather than closing them down.

And then, crucially, they go back to their agency and actually do something! This might be advocating for the group’s suggestions, flagging where institutional assumptions need revisiting based on contributions from community, and keeping the connection between the co-design process and the implementation pathway alive.

The Converter is what makes the whole thing worth doing. They’re also, in many organisations, rarer than they should be. Converting requires a degree of institutional courage that not everyone has or is supported to exercise.

Here are some ideas to help build your converting skills:

• Your most important contribution might not happen in the room. Think about what you’ll do with what you’ve heard when you get back to your desk.

• Advocacy within your own organisation is part of the role. If you’re not in a position to do that, it’s worth questioning whether the right person is at the table.

• Genuine advocates and community representatives want the same thing as you: a solution that works in the constraints that exist. Let’s all move forward with that goodwill.

• Being changed by a co-design process is not a sign that you were captured by it. It’s often a sign that it worked.

Converters are few and far between, but I am lucky to know some. You know who you are ❤️

What this asks of the people running the process

These patterns have causes. The Rabbit might not have been adequately briefed. The Ghost might have been sent without understanding why. The Gatekeeper might be operating under explicit or implicit instructions from their agency.

If you’re convening a co-design or co-governance process that includes public servants alongside lived experience members, the design of that process needs to account for the dynamics that mixed membership creates. Think about how sessions are structured, how contributions are invited, and how the group’s outputs are progressed once the work is done. What context and background do bureaucrats need to do their best work here? Is the membership list correct?

Importantly, are government and community members being treated as genuine equals; or are you inadvertently letting bureaucrats off the hook under the guise of foregrounding the contributions of community members?

Getting the conditions right is what makes the Converter archetype accessible to most people in the room, rather than just the naturally inclined ones.

Share this with a Converter you know and love, or a Policysplainer you want to nudge 😉

However, the scale of the response I received on this article suggested to me that the creation of something like this might best be done collectively. Across comments, messages, and emails, more than 30 people shared their views and experiences with emotional labour with me. I learned that this is a topic that resonates strongly with the disability community in the broadest sense, and that many of you might be interested in being part of a movement towards solutions.

So, today I’m sharing the first draft of a new premium resource, Reflecting on Emotional Labour, and I’m interested in your input. I’ve collected some questions and prompts I think might be useful for individual reflection on emotional labour, particularly for those in leadership, supervisory roles, or other positions of power and influence. Let me know your thoughts in the comments, or in the subscriber chat! 💬

In a couple of weeks, once I’ve reviewed your input I’ll pull this into a properly formatted resource that reflects the insights of the Higher Hopes community.

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For those who missed the presentation: emotional labour (commonly attributed initially to Hochschild) is the hidden work of managing your own feelings and other people’s feelings, particularly in professional and study contexts. Research tells us that disabled people carry a disproportionate share of it, and our community’s experiences in higher education certainly mirror this.

When a disabled student carefully manages the feelings of the administrator processing their access request, that is cognitive and emotional work that their non-disabled peers simply do not have to do. When we spend an hour crafting a response to an apologetic email from a staff member who did not fix the problem we raised, that is an hour we did not spend on research.

For many disabled people, it is this emotional labour that presents one of the core barriers to professional progression and success, despite being generally ignored by workplace diversity and inclusion efforts.

The questions I want to reflect on are these: if this emotional labour is labour, should it, and can it, be compensated? Can it be reduced, and if so, whose job is that? And what are we losing out on while all this energy goes elsewhere?

These questions have sat with me since learning of the passing of the inimitable Dr Ellen Fraser-Barbour. It was Ellen’s work and prior comments on emotional labour which motivated the choice of the symposium’s topic. Doing justice to the contributions Ellen has made to disability research, advocacy, higher education, and society generally is a huge ask and not one I can answer alone. Writing this follow-up article therefore felt insurmountable for a while, and I didn’t know when the timing would be right. Please read about Ellen’s ongoing impact, explore her published work, and learn about the influence she had on people across the community.

In the meantime, here’s my attempt at picking up the baton to move this conversation forward.

Should it, and can it, be compensated?

This is the question I feel most uncertain about, which is probably why it keeps coming back.

Why does compensation for emotional labour feel complicated? Partly because quantifying it is pretty difficult. Partly because naming it as labour requires institutions to admit they have been extracting it for free. And partly, I think, because there is a version of this conversation that ends up placing the burden back on disabled people. Requiring us to document and justify and account for every instance of invisible work to receive recognition for it. Which would itself be more emotional labour!

The mental health and disability research communities are resolute on the importance of compensating lived experience contributions. But how does this play out when the involvement of lived experience is less explicit, and is a function of workplace cultures that implicitly demand disabled people to perform for them?

We have some precedents worth examining. Some universities provide payments to First Nations academic staff to acknowledge the cultural load they carry — the committee work, the community consultation, the burden of being the person in the room who is expected to represent an entire community’s experience while also doing their actual job. Others pay specifically for the contributions made by staff using First Nations languages in their work or contributing to cultural activities outside of working hours. The logic is straightforward: if an institution benefits from labour, it should pay for it.

However, it’s still clear in this case that the Cultural Workload Allowance is for more formally recognised and structured contributions, rather than the informal and everyday emotional labour that First Nations staff perform. Staff are remunerated for cultural load carried in service of the institution. This is not a payment for the emotional labour staff undertake in response to the colonial structures and racist attitudes that try to marginalise them and their success.

This demonstrates the nuance that I’m struggling to grapple with, around the difference between lived experience and emotional labour. For those of us practiced in lived experience leadership, we can sometimes extract the emotional labour component out of this work to an extent. But there is still this less explicit, more invisible, incidental emotional labour that I think institutions are much less likely to see as real, let alone worthy of compensation. It feels more akin to managing microaggressions than explicit representative work.

For the committees where I am often the only student in a meeting room full of staff, I am rarely compensated despite being charged with representing all disabled students (especially when appointed student representatives fail to attend). This is unfortunately still a structural feature of how institutions currently operate. But again, this is more of an issue of lived experience compensation. I think these days it would be hard to find someone who could genuinely argue that it’s fair that a student from a marginalised community should have to sit in a room of well-paid public servants, academics, and professional staff for free.

Anecdotally, I think that the emotional labour requirement in spaces where lived experience isn’t being compensated is higher. When an institution is relying on free lived experience insights with the justification that it will make things better for our communities in future, the emotional labour inherent in either sucking it up, fighting for better, or justifying our decisions not to engage (both to ourselves and others) is huge.

I clearly do not have a neat answer here. But I think it’s worth thinking about the differences between lived experience leadership (official or unofficial), and emotional labour.

Can it be reduced, and by whom?

This question seems much more obvious. The requirement for marginalised communities to perform this labour is inherently unjust and there is a clear imperative to eliminate it.

Though, it’s worth thinking about this carefully. There are two different ways of answering this question and they lead to very different places.

One answer places the responsibility on disabled people. Set better limits. Say no to requests that cross into unpaid labour. Protect your energy. Don’t devalue your work, don’t mask, don’t fawn, don’t perform. Don’t, don’t, don’t.

Arguably there is something to this — I have written before about the trap of becoming pathetically grateful just for being allowed into the rooms where it all happens, only to become tokenised or otherwise exploited.

But to me, this lets institutions and so-called allies off the hook entirely. It asks disabled people to solve, individually, a problem that is collective and structural. It also assumes a level of security and power that many disabled people, particularly students and early career researchers, simply do not have. The person who can afford to say no is not the person who is most exposed to this labour in the first place.

The better response to this question asks what non-disabled colleagues, managers, and institutions would need to change about how they operate. Not asking disabled people to solve problems that belong to paid staff. Not requiring visible, performed commitment before we are respected and believed. Responding to a raised concern by addressing it, rather than generating a new round of relationship management work for the person who raised it.

These are basic behavioural and interpersonal features of a workplace that does not extract unpaid labour from the people it is supposed to be supporting. They are also far more impactful practices than standard diversity and inclusion training programs or afternoon teas. They are commitments that demonstrate allyship beyond pins and email signature blocks.

What are we losing, and what could we gain?

This is the question I find hardest to confront. Thinking about what we have lost as a result of the time and energy spent on this kind of labour can become very depressing, very quickly.

I am wary of framing this in purely productive terms — the idea that disabled people would produce more outputs, more publications, more contributions, if only we had more energy. That framing treats our value as contingent on what we can generate, and I spend a lot of time arguing that the business case for diversity is harmful and counterproductive. Though, it is worth considering this angle, because this is exactly how our institutions measure and quantify our worthiness of promotion and recognition. Mourning our losses here is valid.

But it’s not all about output. It is about what kinds of thinking, connection, and engagement are possible when our energy is not constantly being redirected or depleted unnecessarily. If we weren’t spending Sunday evening rewording an email so it does not read as too direct, rehearsing how to decline an offer of unwanted help without seeming ungrateful, or managing the feelings of the institutions that are supposed to be managing ours, what would we be doing instead? More publications and outputs, maybe. But also, having the time, energy, and space to connect with our communities, strengthen our movement, and solidify our position as valuable and worthy members of the scholarly community.

The critical perspective would suggest that institutions perpetuate the systems which require us to perform this labour intentionally. It keeps us smaller, more tired, more compliant, less feisty. The drain is intentional and is itself disabling. It allows non-disabled and less marginalised folk to maintain their power and influence.

As I said at the symposium: very rarely do we perform labour when it is not benefiting someone. It is certainly not benefiting us.

The hopeful perspective points to an opportunity to unlock the energy and potential of a community which is already punching way above its weight relative to opportunity. Alleviating the effects of this emotional labour frees up our energy to organise, build coalitions, and perhaps even build our own structures to develop and share knowledge. Then, we wouldn’t have to rely on the credibility of institutions that were built to exclude us in the first place. Burn it down, start fresh.

I generally try not to end articles with a call to raze it all to the ground, but this feels warranted. I’m not going to do the emotional labour of softening a call to action to make this more palatable to those whose power would be under threat. Confronting their complicity in disempowerment is their job, not mine.

More on emotional labour:

• From Deficit to Dignity? Young People with Disabilities Negotiating Ableism, Emotional Labour and Resistance (Couch et al., 2026)

• Disabled and academic: A collaborative autoethnography on ableism and cruel optimism within Australian higher education (Cook et al., 2026)

• Emotion Work, Feeling Rules, and Social Structure (Hochschild, 1979)

• Disability and the impact of emotional labour (Lamanna & Scully, 2026)

Support is available. Please reach out to Lifeline on 13 11 14 or Beyond Blue on 1300 22 4636.

You’ll notice throughout that article that I was using the concepts of access needs, accommodations, requirements, and preferences variously and interchangeably. Partially, this is because these often overlap and people have different language preferences; but also, because they have different connotations.

‘Access needs’ or ‘requirements’ feels most definitive and tangible: non-negotiable, and most legitimate when backed by external validation. Auslan interpretation, Braille, captioning, and Easy Read formats come to mind. These are broadly accepted as standard accessibility practice without much debate between those who are on-board with the principles of inclusion.

There are many other access needs that are just as legitimate, but tend to be framed differently. Things like additional processing time in live verbal interactions, summaries and visualisations of text-heavy information, sufficient context and detail to enable full understanding, and reduced text contrast. Instead of requirements, design and practice considerations that accommodate differences in auditory and visual processing, focus, attention, energy, and executive functioning are often classified as ‘preferences’ rather than requirements.

This dynamic extends beyond accessible communication into accessible and inclusive practice generally. A workplace accommodation that feels tangible and clearly ‘disability-related’ — a piece of screen-reading technology, an automatic door — is readily understood and accepted. A request for written instructions and clear meeting agendas gets minimised or waved away as a preference.

Why is this? How is it that some access needs are more equal than others? And what does this mean for our collective pursuit of accessible and inclusive practice?

The problem with ‘preference’

I generally prefer oat milk over soy milk. I like the texture better and the taste doesn’t interact too much with the flavour profile of the coffee I’m drinking. That doesn’t mean I’ll refuse a soy flat white — it’s not going to stop me drinking the coffee and it won’t ruin my day. A preference indicates a strong liking for something over another, developed through personal taste. It’s negotiable.

My requirement for clear meeting agendas with written discussion questions or intended outcomes, however, is not a preference. It is a requirement. When this isn’t available, I cannot participate in a meeting or workshop without additional and substantial cognitive load that disrupts my ability to participate fully and effectively.

Some access requirements are characterised as preferences, which increases the burden on the requestor. We have to push harder, explain more, and make a case that other people with more legible access needs don’t have to make about why we need it and how it’s related to our experience of disability.

The practical effect is a two-tiered system: access needs that are widely recognised as such, and access needs that require ongoing advocacy just to be taken seriously.

This hierarchy doesn’t seem to be based on the impact of the need, or how significantly it affects someone’s ability to participate. A person who cannot engage with text-heavy information without a visual summary is no less excluded than a person who cannot access a building without a ramp. Instead, I think there are two drivers of how access needs get classified: where an access support sits on a broader continuum of comfort, and how we have traditionally thought about communication and learning preferences.

Accessibility on a comfort continuum

The first driver comes from when disabled experiences overlap with common experiences of non-disabled people. My theory is that where an access requirement looks like something a non-disabled person might also want or benefit from in some way, it’s more likely to be dismissed as a preference.

When a person with chronic fatigue requests appropriate seating at an event where this hasn’t been considered, a non-disabled person might see it as a luxury. Surely everyone would like to sit down. Those wearing heels might have sore feet. It has been a long day. When a neurodivergent person requests a five-minute processing break at the midpoint of a meeting, the response can be that while a rest might be nice for all of us, time constraints mean perhaps this person should just step out while the meeting continues without them.

In both cases, fatigue and the need for rest are things a non-disabled person can understand and has likely experienced. You’d think that familiarity would make them more likely to accommodate the request. Instead, it sometimes has the opposite effect: the shared experience makes it harder to see the request as a disability-specific access requirement rather than a preference. Everyone’s tired. Everyone would enjoy a break. So, the request gets absorbed into the category of comfort rather than access, and the person with disability is either left making a case that shouldn’t need to be made, or gives in to the exclusion.

This tends to be particularly pronounced for access needs associated with chronic illness and neurodivergence. Experiences of chronic conditions and neurodivergent neurotypes — fatigue, sensory sensitivity, cognitive load, pain — exist on a continuum that non-disabled people can conceptually reach, even if they’ve never experienced it at the same intensity or frequency. That conceptual proximity, paradoxically, can work against the person seeking accommodation.

Think of it this way: no reasonable person would tell someone using a wheelchair that everyone finds stairs a bit tiring, so they should just give it a go (‘reasonable’ doing a lot of work here, as I know my mobility-aid-using colleagues have some unhinged stories about this!). The requirement is visible, legible, and clearly not a matter of comfort. But when the need is less visible, or sits closer to something a non-disabled person has experienced in a milder or less consequential form, that logic seems to stop applying.

Old learning styles die hard

The second driver is historical, and it has to do with how we’ve been trained to think about information formats. If you also did not predict this hard-turn into learning styles hate, buckle up. It’s been bubbling away in me since completing my Certificate IV in Training and Assessment…

The learning styles framework — the idea that we are each primarily visual, auditory, or kinaesthetic learners — was popular in schools and workplaces from the 1980s through to the early 2000s, and unfortunately continues to persist despite being comprehensively debunked. The evidence is clear that content consumption preferences and learning outcomes are contextual, change over time, and are shaped by neurological and social factors that a three-category model cannot capture.

Beyond being wrong about how people learn, I think this framework has done lasting damage to how institutions think about format and communication. In this framing, if you’re a ‘visual learner’, that’s just how you happen to like receiving information, not something the designer of a document or training program is obligated to accommodate. This thinking predates our more sophisticated understanding of neurotypes, specific learning disability, and accessibility generally, but it has shaped institutional cultures that are still with us and are very hard to shift.

For many neurodivergent people, how information is communicated isn’t a preference at all. It’s the difference between being able to engage and not being able to engage. But we’re working against decades of institutional attitudes that say otherwise.

These assumptions don’t only affect neurodivergent people: anyone whose access needs are tied to how information is structured or presented runs into the same old attitudes. Format has been coded as preference for so long that shifting that assumption requires deliberate effort. Oat milk or soy milk, you still get your coffee. For someone whose access need is tied to format, there is no equivalent workaround.

The cost of playing it safe

These dynamics can produce a response that makes things worse: the anxious and defensive simplification.

When I asked my colleague to retain a visual element in a data report — one that wasn’t screen-reader accessible, but was accompanied by an alternative text-based format presenting the same information — their instinct was to remove it entirely. Not because it was inaccessible in the context of the full document, but because they were worried about being criticised for publishing something that wasn’t ‘fully accessible’. The multiple means of representation we’d applied didn’t feel safe enough. One standard format, even if full of compromises, felt more defensible.

This is an understandable response. The disability community isn’t always forgiving, and for good reasons: needs are routinely ignored, lessons go unlearned, and people find themselves making the same requests repeatedly with no evidence anyone is listening. That history of poor practice creates pressure to default to simple, categorical rules. No tables. Everything must be screen-reader compatible. If it can’t be made accessible to everyone, remove it.

The problem is that these rules, applied without understanding, produce worse outcomes. Rather than publishing something full of compromises to be more accessible to an imagined average, a document stripped of all visual information is actually just less accessible for people whose primary access need is visual.

Accessibility isn’t a single axis along which we can optimise. Thinking about something universal as one thing for all is a simplification that tends to marginalise those with access requirements that get tossed in the ‘preference’ basket.

Putting my collectivist hat on, I also see a real risk of fracturing our community by how our access requirements are framed. People whose needs are clearly legible to institutions get taken seriously; people whose needs are more proximal to non-disabled comfort or coded as ‘preferences’ get left to fight for them. Those who are catered for stop fighting for the rest, and we risk forgetting about each other. That isn’t a dynamic that serves anyone. Disabled people are considerably more powerful collectively than when their experiences and needs are ranked against each other to create factions.

A more mature approach

Universal doesn’t mean one thing that’s the same for everyone. It means as many things as are required to provide genuinely universal access and outcomes.

In practice, this means accepting that no document, event, or program will be fully accessible to every person in every context. Offer multiple means of representation where possible, and be transparent about what you’ve done and why, rather than defaulting to whichever single format seems easiest to defend.

It also means taking access requests seriously regardless of whether they fit neatly into established categories or seem ‘right’ to you. For the person asking for written follow-up after a meeting, for a document in plain text rather than PDF, for a few minutes before they respond, the appropriate response is to take them at their word. Not to assess whether the request looks sufficiently ‘disability-like’ before deciding whether to honour it.

The access needs that tend to get dismissed as preferences are often the ones that require the environment or the process to change, rather than the individual to be given a tool. They can seem harder to accommodate, but they are equally important and valid. Often, addressing them well improves things for everyone. Providing seating benefits the person with chronic fatigue, the pregnant attendee, and the person who has been on their feet since 6am. Written summaries benefit the neurodivergent staff member with short-term memory differences, the overworked executive with a brain like a sieve, and the team member who was off sick and missed the meeting.

What access needs have you seen consistently underestimated or framed as preferences in your context? I’d be interested to hear what’s coming up in the comments, especially if you’re seeing patterns across sectors or types of requests.

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Last week, I attended a large international conference and came away with too many thoughts about event accessibility to sit on them. While they are fresh, this article draws on my own experiences, those of people I attended with, and observations I made as a disability advocate with experience in common access challenges and inclusive design.

So, consider this Part 1A: it connects directly to the themes I opened the series with, drawing on both digital and physical examples.

As disabled people, we never expect that absolutely everything is going to be made possible. We have all experienced enough events, workplaces, and community spaces to know that sometimes we will be accommodated, and sometimes we will not. Sometimes this is a budgetary decision, other times it is an oversight; but it is always political, whether intended or not.

What we do expect is to be told. When something isn’t available or feasible, knowing about this in advance helps us to make alternative arrangements. If we don’t know, we can’t plan or make an informed decision.

The emotional labour of worrying in advance, and needing to respond without warning in the moment, is exhausting. And it is a cost that non-disabled attendees simply don’t encounter.

Last week, I heard several reports from attendees with disability at this human rights-aligned conference. They had provided accessibility requests and requirements in advance but had not received a response to confirm whether they would, or would not, be available. We generally assume that if we haven’t heard back, our request has been accepted: we get it isn’t always possible to send a confirmation to everyone, and if the question of access needs is asked, we assume there is a system for managing these requests. Unfortunately, many people arrived to find what they expected to be available, wasn’t.

Navigating access barriers takes us out of the conference and puts the burden of self-advocacy and education on us. It is not an effective use of our time at a costly event when we could be engaging with others, learning, and experiencing the opportunities that other, non-disabled attendees can access easily. It compounds exclusion, segregation, and makes it even more difficult to be present in mainstream rights movements that claim to be intersectional.

Accessibility statements need to be accompanied by real access

You’ve all read them. “We’re committed to creating an inclusive and accessible experience…” and similar. When you choose to include these lines, it actually means you need to deliver on your commitment. Here are some access features to consider and reflect on next time you’re planning an event.

The digital-by-default problem

I first want to spend some time on the issue of conference apps, because I think it demonstrate the patterns that I touched on in Part 1 of this series.

Digital-first conference programs are increasingly common, and there are good reasons for them: reduced paper waste, easier translation, and searchability to name a couple. These are useful features, especially in an environment where attendees are climate-conscious and multi-lingual.

The problem arises when digital becomes the only option, without acknowledgement that digital access is not always universal.

The conference app was not accessible and was incompatible with my mobile assistive technology. Specifically, it would crash upon opening when features such as reduced animation and increased text size were enabled. When I turned off these features, the app would work, but I require these features to engage with written information on my phone. Without them, I cannot access text-heavy content on mobile.

When I raised these concerns at the accessibility desk, I was asked by event staff whether my phone’s operating system and app version were up to date. This managed to both miss the point and imply the problem was user error. I had already taken the necessary troubleshooting steps. The issue was with the app.

I was not told in advance that paper programs would not be available, and I didn’t think to ask (usually there are a few kicking around). When I asked for a printed copy given the app issues, I was told that the program would be “over 100 pages” and that I could “print it [myself] at [my] own cost.”

This is not an accessible or fair alternative.

Your inefficient design isn’t my burden to carry. Your procurement of inaccessible technology isn’t my problem. And the climate impact of a few printed programs pales in comparison to the mass production of branded conference merchandise. These are issues that organisers need to confront, not us.

A simple day-by-day printout with session titles, times, and locations would have addressed this entirely. I’m not asking for something elaborate.

There are also security and privacy dimensions to app-only approaches that often go unconsidered. For attendees who need to mask their digital presence — those at risk of state reprisal for event attendance, those escaping surveillance by an abusive partner, among others — having this kind of conference data on a personal device carries risk. Needing to connect to a public conference Wi-Fi, given patchy mobile reception in the area, presents additional security risks that some participants are unwilling to take.

A paper option addresses these issues without requiring anyone to explain or justify why they need it. Universal choice of format is both simpler and more protective.

The compliance trap

Many conference venues meet the letter of physical access requirements. Lifts, accessible bathrooms, and ramps exist. However, this doesn’t always mean the experience is easy or equitable for those who require those facilities. Compliant doesn’t mean universal.

I observed this most clearly in spatial design. For example, where catering stations are located matters enormously for wheelchair users and people with mobility considerations. If the only lunch station requires a 20-minute round trip from the main conference areas (assuming you don’t hit a crowd or an impromptu chat with an old friend), with food only available at limited times, you are effectively asking those attendees to choose between eating and attending sessions. They would need to leave sessions early, skip anything that overlapped with the lunch period, and be unable to re-engage on time with the next session.

Multiple stations, or a practical alternative for those who flag barriers, would address this. But it requires someone to have thought about it in the first place. And, just because the venue says they’ve done enough, it doesn’t mean you have to accept the bare minimum as an organiser.

Live support must be functional and effective

Having an accessibility desk is fantastic. At this event, it did provide many attendees with a place to find support and assistance. However, having only one desk in one part of a large venue means that reaching it from the opposite side creates its own accessibility barrier, particularly for those who fatigue quickly, cannot move quickly, or need urgent assistance.

Its placement in front of a very bright window with direct sunlight was also not ideal for those impacted by sensory and vision challenges, or those with light-triggered migraine or seizure activity.

More fundamentally, if an accessibility desk is on offer, it must actually have the ability to respond to accessibility issues. When I approached the desk to request a paper program, I was told this wasn’t possible and that they couldn’t override this conference policy. Staff were also not able to report issues with the conference app to the developer to have them fixed. Some volunteers didn’t have essential information required to support some requests at all. The desk existed, but the infrastructure needed to make it effective did not.

Signage must be clear, abundant, and supported by human wayfinding

Wayfinding is consistently undercooked in large venues, but it really impacts the participant experience. Signage around last week’s event was insufficient. Without a paper map, without access to the app, and with signage that didn’t correspond to the event’s own labelling conventions, it was challenging to navigate and difficult to find someone who could assist.

Brightly coloured shirts or clear visual indicators to identify event staff (not a tiny coloured section on a lanyard), consistent signage, and paper maps available by default would all help.

Flexible seating and compassion

A relative lack of seating in public areas creates real barriers for people who need to sit frequently. Some attendees were told off by venue staff for sitting on the floor both during sessions and in main conference areas. I noticed this diminished over the week, so hopefully the message was heard and venue staff understood the limitations of their space. But the issue remained: for those of us with conditions that require frequent movement or particular seating arrangements, sitting on the floor can offer much-needed reprieve from environments that don’t meet our needs and help us regulate. This needs to be enabled and normalised, not punished.

People with disability should not be made to feel like an inconvenience for doing what they need to do to regulate physically and mentally. Your ideas of what is professional are not welcome here: if I am not in someone’s way or creating a hazard, I will be sitting on the floor.

When plans change, keep us up to date

Many people with disability have time-related access requirements: eating, taking medication, and toileting are a few examples. When events do not run to time and updates are not provided, access barriers emerge. We know it is not possible for event organisers to control everything: sound check runs long, a minister hasn’t appeared, we get it. But, when changes happen, updated times and expected end times should be communicated clearly through MC announcements or app notifications so people can adjust and make informed decisions.

Both the opening and closing ceremonies at this conference presented significant access challenges as a result of late start and end times. This is manageable when we know about it. When we don’t, we can’t plan.

Respectful and effective captioning deserves more than automation

The use of automated captioning in smaller sessions is somewhat understandable given the scale of an event with more than ten concurrent sessions with varying attendance. Using it at opening and closing ceremonies in a plenary is harder to defend.

Auto captioning (which was AI-supported in this case) was inaccurate, and at times offensive when left to run and caption speakers using First Nations languages. When Elders and others speaking in traditional languages were presenting, the auto captions were showing distracting and offensive garble on the screen. A human captioner would know to pause and display something like “[In language]” to show respect and not distract from the speaker. Automated systems cannot replicate this yet, and it is likely that First Nations speakers had not consented to their languages being used to train the AI models supporting this technology.

There are other practical issues beyond accuracy here. Attendees were not told in advance where to sit to see the captions clearly, to be near an interpreter, or to access other accessibility features. Accessing captions on personal devices required downloading yet another app — adding to the barriers already described above — depleting device battery, and creating screen glare that disrupts nearby attendees. Last minute shuffling is stressful, disruptive, and distracting for everyone.

These are solvable problems, but only if they are considered before the event.

The hierarchy we don’t talk about

In Part 1 of this series, I wrote about an implicit assumption that runs through a lot of accessibility work: that some access needs are seen as a higher priority than others. It’s not something many people are willing to say out loud, but we see it at work all the time. It shapes investment, event decisions, and how organisers respond when something goes wrong.

I want to be very clear: I am not suggesting that physical access barriers I’ve described were adequately addressed, because they were not. The issues with mobility, seating, wayfinding, and catering station placement are as much a failure of inclusive design as everything else I’ve described. Compliance-level access is not the same as good design.

But there is still an assumption worth talking about here. We know these omissions are not for lack of budget. The needs that are easiest to satisfy, or are most explicitly required by law, will get resourced first. The needs that are less visible or obvious as disability-related — flexible information formats, time-related requirements, sensory considerations, security and privacy constraints — tend to be the ones that fall through.

This is the same dynamic I see in digital accessibility work: the features that are easiest to demonstrate (captioning, alt text, heading hierarchies) get adopted, while the underlying logic of why we design the way we do, and who we are designing for, goes unexamined. Addressing basic compliance checklists is not the same as designing for the full diversity of our community.

This event explicitly endorsed accessibility frameworks and espouses intersectional, equity-focused values. But, when the expense of event theming and branded merchandise is on full display, and accessibility features are simultaneously absent or inadequate, we get the message: you didn’t really think about us.

What good looks like

Inclusive and accessible event design requires a planning process that starts from the question of who will be in the room and what they’ll need, rather than working backwards from compliance checklists.

When something cannot be provided, communicate this clearly and in advance. A response to say “we are unable to provide this, here is what we can offer instead” is far preferable to people arriving to find what they expected is unavailable.

This is not about budget, wokeness, or performative allyship (I mistyped that originally as allyshit, which I will be using profusely in future). We aren’t being difficult: we are using our voice to exercise our rights to be heard, to access the event, and to participate in the same ways as everyone else.

As I wrote in Part 1, the goal is not one option that works for everyone: it is multiple options that ensure no one is asked to simply make do.

Share Higher Hopes by Ebe Ganon-Davey

Have you navigated access barriers at conferences or events? I’d be interested to hear what good has looked like, as well as the frustrating experiences, in the comments or subscriber chat!

Recently, I’ve been writing about digital accessibility and what universal really means when we produce content. Part 2 is landing next week and gets into something a bit thornier: why some access needs get treated as legitimate requirements while others get quietly dismissed as preferences. Worth a read if you work in higher education, policy, or the community sector.

This checklist is the practical companion to that series. Rather than a technical how-to (there are excellent existing resources for that, and the checklist links to them), it’s a set of reflective prompts to help you ask the right questions before, during, and after you create any piece of communication.

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I know that most of you here are people with disability, have family members with disability, or are people who care about making sure everyone is included. Some of you will be full-bottle on what’s just happened, and for others, this might be the first you’re hearing about the changes.

I am not going to cover all the changes here, and I don’t want to feed into the fear-mongering that usually rushes in to fill the gaps left by missing details. If you’re looking for a fact-checked analysis of yesterday’s car-crash, Helen Dickinson and I wrote an article for the Conversation covering off on the main implications and outstanding questions. I’ve linked some other views at the end of this post.

I also spoke briefly to Triple J’s Hack team last night, reacting to the announcements from the perspective of young people with disability. You can listen to the recording on ABC Listen, with the segment starting from about 14:15.

Here, I do want to quickly point out some of the areas I think we need to watch, talk about, and put pressure on decision-makers to really consider.

I’m not someone who thinks that every single person with disability should need to access the NDIS to get the support they need. But I do see some very significant sequencing issues with the current plans to tighten eligibility and reduce plan size.

We cannot remove existing supports before the alternatives exist. This includes by removing people from the scheme, denying access to the scheme through tightened eligibility criteria, reducing plan size, measures for which were all covered yesterday. Trying to make savings before we have alternatives in place will result in people falling through the cracks with serious consequences for health, safety, and human rights.

States and territories also need to meaningfully progress their planning and implementation of foundational supports, engaging closely with local communities to work out where the gaps are and how they can be addressed. This issue has become deeply politicised, resulting in slow progress and worse outcomes for disabled people.

The government has decided it is fine with taking away individualised funding controlled by people with disability to support their social and community engagement, cutting it, and reallocating a fraction back to organisations who will decide what disabled people want from community and social opportunities. Most of us reasonable folk are not ok with this. But if this is what is happening, it means that we cannot allow these cuts to social and community participation funding to occur until we have evidence that activities funded by the new Inclusive Communities Fund are a) ready, b) well-designed, and c) responsive to the needs and preferences of local communities.

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Relatedly, I think we need to see some BIG changes to how mainstream media outlets are reporting on disability issues and the NDIS. The vilification of disabled people and the programs that support us has been devastating, and frankly offensive to watch. I am not going to link examples because I don’t want them to get traffic and profit from this work. You know the ones I mean.

The government has clearly been reading about manifesting. Telling people that a program has no social license is a great way to, in fact, destroy the social license for a program. Framing focus group questions around assumptions of public anxiety will indeed feed public anxiety. Then, the media just reproduce government talking points and focus group results without any critical engagement, fact checking, or interrogation.

Reducing people with disability to numbers, percentages, and support categories is dehumanising. Dehumanisation makes it easier to sell cuts. And, when we position disabled people as the source of our budget woes and the drivers of fraud and rorts, we make it impossible to have a balanced conversation about the NDIS and similar programs. For those who are not embedded in our communities, this is the only messaging they see. It becomes an ‘us-and-them’ situation, with media outlets playing everyday tax-paying Australians off against dishonest disabled people scheming to rip off a government support scheme.

Instead of being able to talk about both the benefits and challenges of the scheme, and how we can make it even better, disabled people then end up roped into defending their rights to support and inclusion in response to biased (at best) and incendiary (more often) reporting on disability.

Sometimes, our community defers to NDIS evangelism that does not engage with genuine issues with the scheme. This is also unhelpful in the broader context of trying to build quality, responsive, and evidence-based supports that meet the needs of our community. I am not laying the blame with our community—the reactions are generally reasonable and understandable—but I think it’s important to name this cycle that becomes non-conducive to solutions-focused, collective discussion.

We really do need to be able to talk about access inequities, poor quality services, inefficient plan utilisation (resulting from low service quality, usually), poor use of evidence-based practice, and how the NDIS has been forced to pick up a lot of slack as local and community based services have dropped off over time. But we can’t do this when the debate is so polarised.

News flash: people with disability are part of our community. It’s not ‘us-and-them’, it’s ‘we’.

We need to challenge one-sided representations when we see them, hold mainstream media to account, make complaints, and use the tools we have to ensure that public debate is balanced.

Look after each other, and stay hopeful.

Further reading:

• Minister Butler speech at the National Press Club – 22 April 2026

• “Tightened eligibility and cuts to plans: what the NDIS changes mean for participants” (The Conversation)

• “Labor’s NDIS savings plan hinges on state-run supports” (ABC News)

• “Breaking: Minister Butler announces major Scheme re-design” (DSC)

• “Disability community ‘scared’ by dramatic NDIS changes as government defends overhaul” (ABC News)

However, as is often the case, basic knowledge of digital access considerations doesn’t address all barriers that users may face when interacting with content online.

Many have been quick to adopt the fundamentals: captioning, using heading hierarchies, and including alternative (alt) text. But what is missing is the nuance, or an understanding of the underlying logic of why we design things the way we do.

Advocating for access

I started thinking about this problem after providing some comments on a government report recently. The report was focused on the implementation of a very large, complex government program, aiming to demonstrate progress across a vast range of action areas.

As someone with attention and visual processing differences, I suggested that a summary table at the start of the report including traffic-light progress indicators might be a helpful way to summarise status updates. Something like this would make it possible to see, at a glance, which actions were on track, which were stalled, and those that might be regressing or blocked. As it was, there was literally no way to confirm action status comprehensively without the wiggle room that narrative explanations can offer. This is not only suboptimal for accessibiltiy, but also provides poor accountability. My suggestion addressed both issues, in my view.

I’m not sure what happened behind the scenes, but in response to this feedback I was reminded that tables are not accessible for screen reader users, and that our priority should be writing clear, easy-to-understand copy that everyone can engage with universally. Instead of visual indictors, more words were proposed as the answer. Which to me, doesn’t solve either problem.

Let’s unpack it. There are two explicit claims I see here here:

1. Tables are not accessible.

2. Our goal is to produce content that everyone can access in the same way.

Together, these statements illustrate what I think is a misunderstanding of what we are trying to achieve with digital accessibility, and with inclusive practice more generally.

There’s a third, more insidious assumption here too, though:

3. Some access needs are a higher priority than others.

This one is particularly harmful, and not one that many in the disability community are willing to say out loud.

Let’s have a closer look at all three.

“Tables aren’t accessible!”

I preface this discussion with the fact that I am not a screen reader user, though I use other assistive technologies which rely on similar design considerations to function properly. I have also spent a lot of time learning about digital accessibility, accessible document design, and how assistive technologies (AT) work both professionally and privately.

And indeed, in many of the training and development opportunities I have engaged in or delivered, tables often do take up a considerable amount of time: for good reason!

Tables, when designed badly or without an understanding of how AT works, can be absolute nightmares for screen reader users in particular. Without getting too detailed, empty cells, merged cells, non-standard symbols and characters, and colour-coding without alternative channels communicating that meaning, can make it difficult or impossible for someone not accessing a table visually to understand what it is trying to communicate.

However, it is absolutely possible to design an accessible table, whether you’re in Word, Excel, HTML, or somewhere else. Avoiding empty and merged cells, using clear row and heading labels, avoiding non-standard characters, and providing accompanying titles and descriptions are some starting considerations. If you’re interested in learning more about this, I cannot recommend Vision Australia’s training enough.

In some cases, particularly when presenting data, tables can be more accessible than a complex graph or chart representing the same information. Including the table with the raw data is a way to provide the same precision for non-sighted readers as sighted readers get from interpreting a scatter plot, for example. But, even in this example, you can see another challenge emerging: what’s accessible to one person might present big issues for another.

And this brings us to the second claim.

Inclusion means making one, ‘fully accessible’ option for everyone

If anyone ever tells you that their event is ‘fully accessible’, you should be suspicious. Because it’s not possible.

The incredible diversity of strengths in our disability community is mirrored by an equally diverse range of access and support needs. And sometimes, these diverse needs can conflict with each other.

Commonly, we see this where blind and low vision members of our community benefit from audio formats which can exclude our deaf and hard of hearing peers. Designing an event for colleagues with intellectual disability who may engage best during in-person, face-to-face engagements can exclude our chronically ill or immunocompromised community members who may prefer to engage online.

The same dynamic carries over to digital accessibility. Some readers require shorter, plain English expression to engage; others need the details, specifics, and context that often cannot fit in Easy Read or plain English formats. Many will have requirements or preferences for visual, audio, interactive, or narrative formats. These requirements and preferences might change over time; or as a result of fluctuating capacity, context, or degree of interest in what’s being presented. Some are AT users with specific document structure requirements. Others have developed less formal but equally important engagement tools and strategies to get work done.

What should be clear is that it is not possible to create something that is going to support optimal engagement from the full diversity of possible readers. There will always be someone making do with something that’s not ideal for them when we try and please everyone at once. That should not be our goal.

So, what should we do instead?

Understanding what ‘universal’ means

The word ‘universal’ in universal design (UD) does a lot of heavy lifting, and as a result can be misinterpreted. It doesn’t mean ‘one thing that is universally accessible’. Instead, it’s about considering a universal range of needs, preferences, and requirements, and designing accordingly.

What this means in practice is that one product, service, event, or resource might not be the right fit for everyone. It may be logistically impossible to create an event where everyone can engage equally with the same degree of comfort, safety, and enthusiasm. A single report in the constraints of institutional bureaucracies and demands for brevity isn’t going to hit the mark for everyone. In these cases—or most cases, really—there are two things we need to consider.

First, we need to acknowledge the challenges and constraints we are facing. Almost every Higher Hopes reader is working in a resource-constrained environment: time, staffing, funding, space, and expertise can all be limited in the kind of work we do. Notwithstanding the legal obligation of public institutions to provide access to all, sometimes we have to acknowledge that something just isn’t going to be accessible to some. If there are legitimate reasons for not catering for a particular cohort, we can communicate this clearly and transparently to avoid disappointment or loss of trust from those in our communities that might not be served.

In many cases though, accessibility is not optional, and full inclusion is required. This brings us to the second consideration: thinking about what else we need to create, design, or develop, to ensure that everyone is catered for, universally.

Starting from the original product, service, event, or resource, what alternative and additional options or formats can be created that will provide an equally accessible and rich engagement opportunity for those not well-served by our original option? We aren’t trying to create one report to rule them all: we provide multiple options that cater for different strengths and needs.

Here is where my preferred universal design framework, Universal Design for Learning (UDL), really comes in handy. In a nutshell, UDL offers a three-dimensional structure to think about developing inclusive learning opportunities: it is very portable beyond the classroom though, and extremely relevant here. UDL asks us to consider how we can use multiple means or channels across three areas:

• Engagement, how users can relate and connect to the content at hand.

• Representation, how content is presented, communicated, and distributed to users.

• Expression, how users can interact with content and communicate their own insights and ideals.

Understanding the diversity of accessibility requirements, as well as preferences, allows us to design content that not only meets basic requirements, but to optimise for the different strengths and preferences that allow users to have rich, quality engagement with our work. The CAST UDL Guidelines provide a rich framework and practical tools to unpack and plan for accessibility and inclusion across these three pillars.

Coming back to the specifics of digital accessibility, UDL helps us to understand that we aren’t trying to make one thing that works for everyone. We are developing multiple options that provide the full diversity of our community to engage richly and deeply in ways that work for them.

That means that one format might be totally inaccessible to some, but highly valuable to others. And that’s ok, because there will be other formats designed with their needs in mind.

Multiple formats in practice

Recently I needed to develop a stakeholder update as part of a long-term project. We had a lot of survey data results across many different areas, all of which were rich and important. Noting the varied access needs and preferences across the group, this is what I did:

1. I presented each section of the survey results as a table, a graph, and in a paragraph of text (multiple means of representation).

2. I ensured that each of these modes—table, graph, text—were optimised for accessibility as far as possible. Clear headings, alt text, appropriate text size and colour contrast, you get the gist.

3. I put a detailed table of contents at the top of the report, and an explanation of how the report was structured:

This report has been prepared with the widest range of accessibility needs in mind. Each data segment is presented in three ways: a table, a graph or visualisation, and narrative text. Please navigate the report focusing on the style of data representation and level of detail which best suits your processing style, assistive technology, and level of confidence in interpreting data.

This meant that the report looked a bit longer than it really was, and might have seemed repetitive for some. But it meant that users had agency in how they engaged with the information (or, multiple means of engagement), accessibility was embedded, and we didn’t need to ask anyone to compromise.

Does it take a bit longer? Yes, while you get the hang of it. But it also helped me understand my data better, and to communicate my findings more clearly. Importantly, it meant my readers were more engaged and resulted in high quality reflections and discussion (enhanced, and multiple means of expression).

This approach was queried though. A collaborator asked me to remove a visual that wasn’t able to be made fully accessible for screen reader users, even though I had presented that same information in a different format to ensure everyone could engage with it in a way that suited them. I also included an accessible table and narrative description of the data. There were good reasons for the visual to remain: for lots of reasons, disability-related and otherwise, some people just prefer to see data visualised.

Nobody was missing out. So, why remove it?

That brings us to our final, implicit message: some access needs are seen as a higher priority than others.

You’ll need to come back next fortnight to unpack this one with me in Part 2!

Part 2 will pick up where this leaves off: why some access needs get treated as legitimate requirements while others get categorised as preferences and deprioritised. I’m going to explore what I think drives that distinction, why we might be anxious about doing something innovative, and why it’s really important that we acknowledge and challenge the ‘hierarchy of access needs’.

In the meantime, I’d love to know what you’re noticing in your own work. Drop your thoughts in the comments, or in the subscriber chat if you’re a paid subscriber.

After a wedding, a honeymoon, and a solid whack of work travel, I’m really looking foward to getting back to Higher Hopes with some fresh energy and new ideas for trouble.

Before my time off, I was lucky to join Ricky Spencer and the DIIU for a panel on emotional labour in academia; a session with the wonderful Kath Hall’s Just Governance program on authentic and inclusive governance; and the Australia’s Disability Strategy National Forum in Adelaide. I’ll soon be heading over to the Women Deliver 2026 Conference in Melbourne.

All this to say, expect to hear more about these recent engagements; and of course, the April premium subscriber inclusive practice resource will be coming soon.

A sparkly, new thing! ✨

Behind the scenes, I’ve also been working on something new. It is clearly never too late to add a new stereotype to my arsenal: Coding Autistic.

After some final touches, a few more conversations, and a deep breath, I’ll be able to share this with you: hang tight!

Heads up though: I’m going to need some help from you to take it to the next stage. There are going to be a few ways you can assist, with time, with connections, with suggestions, or even with a few dollars, which I’m excited to share with you soon.

So, if you’re interested in the intersection of higher education, data, accessibility, and student agency, or are just one of those amazing people who seem to jump in and support me on whatever weird and wonderful journey I end up on, stay tuned 📺

Higher Hopes ecosystem update 📰

To keep all this sustainable, I’ll be putting the Higher Hopes Podcast in deep-freeze for a little while. It’s definitely not goodbye forever: I’ve really enjoyed producing this so far, and learned more about audio, syndication, and guest management than I ever thought I would.

All of the existing episodes will remain available at higherhopespod.com for your listening pleasure, and there may be some sporadic uploads here and there (borrowing from the ‘On the Reg’ podcasting philosophy), but the main focus will be here for a little while.

As always, I love hearing your ideas and suggestions for the kinds of resources and content that are helpful for you right now. Pop a comment below; or if you’re a premium subscriber, you can hit ‘reply’ if you’re reading this via email or jump into the subscriber chat on Substack.

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