It’s Tuesday night and I have been back in Sydney for over two weeks. Darwin seems like a million years ago. I can scarcely believe I have spent three and a half months, this year, living away, until you look at the house. Mind you, almost all of the work has been done on the house that needs to be done. On Thursday morning, the carpet will be relaid and I will have my normal house back again. Actually, an improved house, as I’m changing my ways, I’ve stopped being a horder, and have been pretty happy to throw things out.
My friend, Sue, from Melbourne, got to see the damage of the flooding first hand, and was there, every morning, as the builders arrived to do their thing. Sue visits Sydney about three or four times a year for the “residential” for her university course.
While Sue was here, Damien asked me to go and see a play, “Milo’s Wake”, at Belvoir Street. The synopsis reads,
Milo O’Connor is alarmed. Although his doctor has declared his chest is clear and has given him a clean bill of health, Milo is still convinced that he can see Nostradamus in his X-ray! This can only mean one thing – he is going to die! For Milo one of the sadnesss of life is that people only say good things about a person once they’ve died. He’s determined that this won’t happen to him and decides to hold his own wake before he dies. A wake complete with songs, poetry, and live music to give family and friends an opportunity to raise a Guiness and sing his praises. But the family and friends have other ideas.
I thought the play was enjoyable, but predictable. The actors were very good.
On Sunday, I undertook one of the many historic walks you can do of “The Rocks”. Although I know a fair bit of the area’s history, and have undertaken an Historic Pub Drinking Tour, this one was very different and I learned some really interesting things about the area. According to the company which runs the tours, The Rocks Walking Tours, the area
…is Australia’s European Birthplace. In 1788 a fleet of 11 British ships safely moored in Sydney Cove after an eight month voyage from Portsmouth, England. So began the exciting saga of the exiles in an alien land. Banished, as these convicts were to an unknown continent with little hope of ever returning. The sandstone breathes their story today. Sydney’s humble beginnings were that of a penal colony, inhabited by 1,300 disoriented convict rabble, military and their families and the indispensable government officials. On the western shoreline of Sydney Cove steep ledges of sandstone and outcrops of rock rose up from the water’s edge. The male convicts were ordered to go ashore onto ‘the rocks’ to build crude structures for shelter. Convict camps replaced Aboriginal camps on The Rocks. For the local Aboriginal people, the Cadigals, the harmonious life these people shared with the land changed forever. The Rocks colourful history continued by becoming a lively part of town catering to the sailors of the world who manned those early tall masted ships full of cargo, sometimes human, to this isolated land.
Last night was a big night for television, with the season finale of “Big Brother”. Although I didn’t really warm to the character of Peter, he seemed like a deserving winner. The moment when his young brother, Tom, who he’s cared for since the death of their parents, ran into the house was touching. Everyone I spoke to at work today said they cried when it happened… as did I.
I begun my task, today, to see as much of the Biennale of Sydney as possible, by heading of to the Art Gallery Of NSW. Actually, task is probably the wrong word, because it’s going to be an absolute pleasure, but with the works on display at twenty or thirty venues, I’ll need to have a methodology about this. Anyway, there were three works on display at the AGNSW that I really liked and a lot of works I felt fairly indifferent about.
Unfortunately, I don’t recall the name of the creator of my favourite work, as I can’t actually cross-reference it to either the Biennale Guide nor the website. Imagine if you would something about 30 feet wide by six feet deep and four feet high, a three dimensional map of the world created out of many layers of canvas. I liked the creative concept, the enactment, and the craft that went into this work. Actually, maybe it’s not part of the Biennale at all?
I also really liked the work by John Reynolds. The NZ-artist has created a memorable work featuring hundreds, maybe thousands of words printed on boxes, all displayed on a wall. While I sometimes think works like this can seem all a little contrived and PC, especially in the choice of words, I thought this work showed humour and intelligence.
The most memorable works, though, were probably those paintings by Biljana Djurdjevic. Set inside a swimming change room or was it a Nazi gas chamber (or something like that), the images were of frightened, disturbed people with wide eyes and pale skin. I interpreted one work, “Paradise Lost” as being about child abuse, though I could be wrong.
“I feel like I’m a full-time amputee,” I told my physio on Tuesday.
It was a comment that slipped out, but the more I’ve thought about it this week, the more accurate it feels. When you live with limb loss, there is an entire hidden calendar of appointments, assessments, and admin that can easily swallow your identity if you let it.
Take this week alone. It kicked off on Tuesday with my physio to keep my body moving properly. By Wednesday, the focus shifted to accessibility, doing a wheelchair assessment out in Burwood with the team from WheelEasy to map out the real-world boundaries of our local streets.
On Thursday, it was a deep-dive conversation with my occupational therapist about navigating daily life. By Friday, I was seeing my prosthetist to get measured for a replacement prosthetic. Because our bodies change, stump shrinkage means my current one simply no longer fits—a stark reminder that the hardware requires constant maintenance just to keep up with the biology.
Getting fitted for a new prosthetic involves some old fashioned plaster moulds.
By any definition, it’s a full-time gig. It’s physically exhausting, mentally demanding, and requires a level of scheduling logistics that would make a corporate project manager sweat.
After that intense week of appointments, I desperately needed to shed the “patient” label. I headed to the Drummoyne Sailing Club for dinner and drinks with friends. Though we got there after dark and missed the spectacular 180-degree panoramic view of the harbour—with Cockatoo Island and the lights of North Sydney glittering across the water— it was still the perfect antidote. Looking out at the shifting tides, the stress of the medical week completely melted away.
Ross won the meat tray! Another lucky winner was a VERY PROMINENT Australian. We recognised her name and face straight away, though she’s obviously better known at the club simply by her first name.
Then came today. The weekend vibe started early, but with a very specific, bittersweet purpose. I joined a gathering at the Hero of Waterloo in the heart of The Rocks. Walking into that heritage-listed, convict-built pub is always like stepping back into 1843, with its old hand-chiselled sandstone walls and heavy timbers. Today, the pub was absolutely jumping, packed with people soaking up a wonderful live band.
But our corner of the pub was gathered for something unique: a celebration of the life of Görel Hanser, ABBA’s legendary long-time manager, who passed away recently. Today would have been her birthday.
In some ways, it sounds like an odd gathering—a room full of fans toast-raising a manager in a historic Sydney pub—but there was so much to talk about. The overwhelming consensus in the “ABBA world” is that Görel wasn’t just a fierce professional who did her job incredibly well; she was someone who genuinely cared about the community and was truly a friend of the fans. Being surrounded by that unique energy was brilliant.
With that warmth filling the tank, I headed off after lunch to record a podcast interview with a fellow amputee for my podcast. He is based near Toowoomba in Queensland, so the recording was online. Nonetheless, it was a really great opportunity to hear wisdom from a fellow amputee, thus rounding out my week.
Today, as we boarded the L90 bus to Collaroy, our journey took us through the federal electorates of Warringah and Mackellar. Historically, both constituencies have been considered safe seats for the Liberal party. However, this time, there seems to be a potential shift in Warringah (currently held by Tony Abbott), where the Independent candidate Zali Steggall might be a viable choice for the upcoming election. Interestingly, one of my lunch companions, a staunch lifelong supporter of the Liberal party and Tony Abbott, appears to be contemplating a change in his voting preference this time, although he hasn’t explicitly stated it.
While gazing out the bus window, we were greeted by a plethora of political posters that adorned the streets. Vehicles proudly displayed the faces of various candidates as they traversed up and down the roads. People proudly wore political t-shirts, showcasing their allegiance. Notably, one house stood out with three posters endorsing a specific candidate, displaying their enthusiasm for the upcoming election.
In contrast, the incumbent Liberal candidate for Mackellar seemed to be the dominant presence in terms of campaign posters.
The bus trip turned into a captivating experience, as we approached a beachside club in Collaroy to celebrate a friend’s birthday. The impending federal election added an extra layer of excitement and curiosity to our day.
Waves crash against the beachside pool at Collaroy Late afternoon at Collaroy Beach, Sydney
Closer to home, I had my own brief personal encounter with politics (aside from work which is lots of election-related activity right now) this week. Most nights I sit at home and watch TV/listen to the radio, but this has been quite a “social” week for me with a few functions happening. On Tuesday night, I went to the launch of https://50secrets.com.au/, a fundraiser for the Bourke Street Primary School, and also a terrific document about the history of my ‘hood. My friend, and co-collaborator on Surry Hills & Valleys, Karina Kreminski and her husband, Armen Gakavian were also there, along with Tanya, Clover, and all of the others who only need a first name introduction.
Tanya Plibersek speaks at the 50 Secrets book launch on Tuesday night. Pic from Tanya’s Twitter feed.
It’s actually been a reasonably busy “social” time since in the last few weeks. Of course, I’ve already posted about the “live radio” events I’ve attended, but I’ve also attended some exhibitions, including The Bald Archy for 2019, some of the exhibitions associated with the “Head On” photo festival, and an exhibition opening at Manly Art Gallery.
Bald Archy Exhibition 2019 Head On LaunchHead On photographic exhibition at the Paddington Reservoir. Catching the right light at the right time. Catching the Manly Ferry. Pic: Catherine Croll
You know how the weekend is supposed to be when you relax, and catch up, and get your life back in order after working hard all week? In theory at least you should feel refreshed.
It’s now Sunday night and I’m bloody exhausted. This is despite the fact that I had an afternoon nap on the couch. And despite the fact that I didn’t do all that much today except go out for lunch with some friends.
After my recent lunchtime experience at the Tap House Hotel (excellent roast), I invited four friends to join me for lunch there.
Unfortunately today the roast was a little tough. I’m guessing it had been carved a little too early. The rest of the meal – two plates of antipasto and a swathe of chocolate deserts – however, was excellent.
They’ve done a terrific job on the upstairs renovation of this wonderful old pub, without the need to resort to polished boards or faux-Irish fittings.
Tap House Hotel
It’s a very comfortable place where you can have a meal and then retire to some nearby couches to finish off that last glass of wine or beer.
I’m hoping for a good night’s sleep tonight, as the week ahead is reasonably busy.
Not quite knowing what to expect, I signed up to do a “mapping exercise” of public spaces in Burwood, Sydney. The event was organised by the Physical Disability Council of NSW in conjunction with WheelEasy. While standard online resources like Google Maps can help people with a physical disability navigate, WheelEasy takes it a step further by crowd-sourcing information, empowering people with disabilities to update the maps themselves.
The platform was founded by Max Burt OAM, a prominent Australian disability advocate, entrepreneur, and the driving force behind the WheelEasy charity and web application. Max’s work focuses on improving accessibility information and shifting societal attitudes toward disability—efforts that earned him the Medal of the Order of Australia (OAM) in the 2025 Australia Day Honours List.
Before his advocacy work, Max had a fast-paced, highly successful career in the United Kingdom as an advertising executive. In late 1999, his life changed drastically when his car was hit side-on by an on-call fire engine. The collision left him with severe head injuries, partial paralysis on his left side, and significant speech, sight, and hearing impairments. Becoming a permanent wheelchair user meant completely rebuilding his life from scratch.
Driven by the sheer frustration of not knowing which venues he could easily access, Max created the WheelEasy Access Information web app. Often described as a “TripAdvisor for accessibility,” the mobile-friendly web app provides crowd-sourced information, reviews, and photos of accessible locations—ranging from cafes and cinemas to parks and beaches. The ultimate goal is to allow people with mobility needs, the elderly, and parents with prams to enjoy spontaneity when going out.
For our mapping day, a group of wheelchair users and people with limited mobility set out to review various locations around Burwood, including the train station, the library, the shopping centre, the cinema, and local parks. My specific task was to review two small reserves featuring children’s playground equipment. I was accompanied by Jose, a Master of Social Work student originally from Bangladesh who is currently studying here, and doing an internship with WheelEasy.
My Reviews
St Paul’s Close Reserve: The primary issue here is the lack of accessible pathways. Although there is a footpath on the opposite side of the road leading up to the park, there is no connecting path to get to the playground equipment, such as the swings and the slippery dip. Navigating this area in a manual wheelchair would likely be impossible. Even in a mobility scooter, the journey is difficult due to the highly uneven ground you have to cross just to reach the facilities.Jacket Reserve: This reserve is much better in many ways, though some accessibility issues remain. Coming down the street, there is a significant lip to navigate from the gutter onto the footpath, which required a long trip up the road just to find a spot where the lip was low enough to cross. While the footpath itself is fine and a nice path leads directly into the playground, the gate presents a major challenge. It is very difficult to open independently, and because it swings backward toward the user, you have to reverse just to get inside. Once you are through, however, it is a lovely reserve with beautiful trees and plenty of footpaths to travel on. It is the type of space where a child in a wheelchair, or a parent who uses one, could easily visit and enjoy a pleasant afternoon.
It was an incredible experience that forced me to see things from a perspective I might not have noticed before I became an amputee almost three years ago. I also had the chance to speak briefly on video during the day, which I look forward to featuring in an upcoming episode of my podcast.
INTERVIEW WITH MAX BURT OAM
When Max Burt moved to a beachside area north of Sydney in 2011, he discovered a glaring gap in accessibility information. It took him three years to realise the local beach had a mat rolled out for wheelchair access. “And that obviously wasn’t because it didn’t… It’s because it wasn’t promoted in any way whatsoever,” Burt explains. “There was no information.” After conducting an online survey, he found that “over nine in ten” wheelchair users faced similar issues finding reliable details. “It’s not rocket science,” he notes, “and information is really not that hard to gather together if you know what you’re looking for.”
Before WheelEasy, people with mobility needs struggled to find answers. “They normally don’t,” Burt says regarding where people find information. When they look at individual company websites, the details are often “hidden away on the back pages,” sometimes incorrect, incomplete, and there is “hardly ever any use of photos.”
This sparked Burt’s vision for WheelEasy “to become a forum where people… with needs would [share] information that makes a real difference in the quality of their lives.” By crowdsourcing real experiences, the platform provides accurate, community-driven data.
The initiative has grown significantly. “We’ve now done over three and a half thousand” sites in Sydney, Burt shares, adding that they are “nudging nine hundred in Canberra” and expanding into Melbourne, Newcastle, and the Central Coast. “The idea is to one day cover all of Australia.” Following a successful day in Burwood, Burt emphasizes that the goal is not just mapping locations, but to “get them excited about the idea so that they tell other people they know who might need something similar.”
Lately, I’ve been recording some incredible interviews for my Limb Shift podcast. This episode features the brilliant Madeleine Stewart. Born with a limb difference, Madeleine wore a prosthetic arm for several years before deciding it wasn’t for her. She is a talented actor, comedian, and passionate disability advocate—and, quite frankly, she’s awesome.
“It’s not inspiration, it’s not pity, it’s normal. It’s saying you’re different, but we accept you and you’re just like us”. This philosophy serves as the cornerstone of Madeleine’s mission, a vibrant and unapologetic voice currently reshaping the Australian creative landscape.
Born in 1994, Madeleine entered the world on the twenty-sixth of May weighing just 1.1 kilograms, a “miracle baby” with one arm. Today, she stands as a multi-hyphenate artist—a comedian, actor, advocate, and filmmaker—whose work challenges the reductive narratives that have long defined the disability experience.
Growing up, Madeleine’s connection to the disability community was virtually non-existent, leaving her to navigate the complexities of her identity largely on her own. Her early life was spent navigating constant medical intervention, primarily at Westmead Children’s Hospital, where she was fitted for prosthetic arms she found largely alienating.
“I thought hospitals are for sick people or for people in pain, and I wasn’t sick and I wasn’t in pain,” she recalls. “I thought I felt normal, I felt healthy, I felt like every other kid, but I was treated differently and I couldn’t understand why”.
The physical impact of these early prosthetics was also significant and painful. Madeleine describes how, as a young girl, the devices were forced into sockets that caused rashes, itchiness, and ongoing pain while “hanging off the joint of my elbow”.
Beyond the discomfort, the practical limitations were stark. She recalls a childhood memory of playing in a “play maze” and becoming caught in the netting by her prosthetic arm, left hanging and calling for her mother while dozens of other parents looked on.
This incident cemented her view that the prosthetic was a hindrance rather than a tool, stating, “I naturally wanted to do things with one hand and I just couldn’t into the two-handed life”.
These medical challenges were compounded by the financial realities of the era. Growing up in the nineties and early two-thousands, before the implementation of the National Disability Insurance Scheme (NDIS)—an Australian government program designed to provide funding and support for people with permanent and significant disabilities—obtaining prosthetic limbs required a complex and often demoralising process of grassroots fundraising.
Madeleine describes having to visit Rotary Clubs to “sing my sad little song” to secure financial support for her artificial arms, with costs split between hospitals, local charities, and her own family. This constant pressure to justify her need for equipment through charity—often without anyone asking for her personal input or consent—left a lasting mark on her self-esteem. “A lot of effort, a lot of charity, a lot of singing my sad song, and that really cuts away at your self-esteem from a young age,” she reflects.
Her path to self-acceptance was paved by the unexpected influence of science fiction. When she was nervous about entering primary school, her brother introduced her to Star Wars and the character of Luke Skywalker. Seeing Luke embrace his mechanical hand as the tool of a Jedi rather than a sign of brokenness was transformative. “The confidence I had, I truly believed that I was a Jedi,” Madeleine says. “He restored peace to the galaxy. And he has one arm just like you”, her brother told her.
As Madeleine transitioned into adulthood, she found that the professional world—specifically the theatre industry—was far less welcoming. She was frequently told there was “no place for me in the industry”. Rather than retreating, she turned to the one space where she could reclaim her narrative: comedy.
A pivotal moment in her development occurred when she was sixteen and attended a show by Adam Hills, a celebrated Australian comedian and television presenter also known for his advocacy and Paralympic sport coverage. Madeleine waited to speak with him after the performance, and he encouraged her to pursue comedy.
However, Hills offered a candid piece of advice regarding the visibility of her limb difference. “He said that he for years was able to have, in his words, the luxury of being able to hide his disability and get his craft as a comedian like anyone else,” Madeleine explains.
“And he said, unfortunately, everyone’s going to see that you have one arm instantly, so you’re going to have to make jokes about disability”. Madeleine took this advice to heart, finding that “people are like, okay, we’re comfortable with this now. And then you can go on and talk about whatever you want”.
Madeleine’s comedy is marked by a sharp, cheeky subversion of how society perceives disability. This is evident in her creative output, including her ABC documentary and SBS podcast, both of which tackle the often-taboo subjects of intimacy and sexuality for people with disabilities.
She views these projects as vital for breaking down the dehumanising myths that follow disabled people into adulthood. “I just find it fascinating that people think that we can’t have sex or date,” Madeleine explains. “I think that people have these assumptions and people don’t know. And I think that it’s a, it’s a humanity thing. It’s about humanness of all of us”.
In her documentary and podcast work, she explores how a lack of adequate sex education in school left her and many others in the dark. “For me, it’s just like, oh, really? Really? So it’s like just basic sex ed baffled me during that podcast”.
Beyond education, she champions the inventiveness of the disabled community. “I think that is genius, the way that we can solve things, the way that we can go. Yeah, let’s figure this out”.
Madeleine’s work also acts as a rigorous critique of “inspiration porn”—the tendency of media to frame the daily lives of disabled people as inherently heroic. She notes that even her own film, designed to highlight the toxicity of such tropes, was met with praise that missed the mark. “The most common thing people say to me afterwards was how inspired they were on my film. And I just think I literally just look at them and go, did you watch the film?”.
Maddie appears in the film “Diving In” with fellow Limb Shift interview, Adam Bowes.
Despite the frustrations of existing in a world still grappling with ableism, Madeleine remains stubbornly optimistic. She sees the current rise in representation—and the increasing public discourse around neurodivergence and disability advocacy—as a necessary step toward genuine empathy.
“Every disabled person has friends and family and like a community around them, people who know them and care about them. And that that is advocacy too, because you’re showing people around you that you’re not this stereotype”.
Looking ahead, Madeleine is embracing a “semi-sabbatical” to recalibrate her creative output, stepping back from the relentless pace of her previous years to ask: “What do I actually want to create?”.
As she balances the two “trains” of comedy and advocacy, her long-term goal remains consistent: to ensure that the future of representation looks exactly like the inclusive, vibrant world she once saw on Playschool—a world where difference is acknowledged, but fundamentally, everyone is just normal.
Abril Felman
Madeleine’s journey is far from over, but she has already succeeded in shifting the spotlight, forcing audiences to see past the arm, past the “inspiration,” and directly into the reality of a human experience that is rich, funny, and entirely her own.
The audio from this interview will be featured in The Limb Shift later in the year. Click on the links above for Spotify, Apple and Youtube to follow the launch.
