This blog was prompted by a loose discussion within the PDA Board about our experiences travelling abroad. After hearing some truly horrific stories from some of our members, I volunteered to try a lighter tone and share some history about how I used a bit of lateral thinking to enjoy a much better time than my early efforts.
Many years ago, I dropped in on my sister Sally’s apartment in East Melbourne to find her hosting drinks for friends just returned from a month in Jamaica. I quickly gathered the champagne had already been flowing for some time and listened in to stories about the girls meeting seven-foot West Indian men through a new dating app called Tinder.
What is Tinder, I hear you say? In short, it’s an early 2010’s dating app that helps singles connect by the sharing of photos and two-sentence introductions. Users scroll through the photos of prospective dates, swiping right to indicate interest and hoping that one will receive a right swipe in return. This then enables an online conversation within the safety of the app that can eventually lead to a hook up in the real physical world. Love Story it is not.
And how might this Tinder app assist a young man with disability travelling abroad? Not at all in the beginning, as it happens. When I first downloaded the app ahead of a four-week trip to Paris, London and New York, I found it was completely inaccessible to a blind person such as myself. I obviously couldn’t see the picks, but the app also had problems preventing me from swiping left or right, sending texts and the like.
I reported this to the Tinder designers and was somewhat surprised when they replied immediately seeking assistance fixing the app. I continued to test it for them as I passed through Paris, London and New York. By the time I was sitting in JFK Airport waiting for my flight home, I was able to start getting matches and receiving requests for a date. Encouraging…
Later the same year, I was back in an airport lounge starting a trip to Argentina. Ahead of boarding, I turned Tinder on, set my location to Buenos Aires and published a two-sentence description of myself as a blind Australian in town for three weeks seeking dates with local women willing to show me around their city.
The results were nothing short of amazing. By the time I arrived in Buenos Aires, I had scores of matches on Tinder and a full schedule of dates. Within 48 hours, I’d been taken for cake by a Norwegian equestrian athlete, on a tour of a wooden sailing vessel by a woman who worked for the Argentine foreign office and on a series of walking tours by Veronica, a puppeteer from the local version of the Mr Squiggle television program.
It made for a much better holiday than might otherwise be the case. When I got off my plane at the airport, I was advised that no sighted guide service was available and I would need to navigate my own way through border control. I had over-estimated how much English is spoken in Argentina – the Falklands War might have been a hint – and there’s a good chance I’d still be lost in that airport now if not for the assistance of a university student in a wheelchair who warned me that accessibility in Latin America is not the same as what I’m used to at home. Little did she know I had a cunning plan to overcome any anticipated barriers.
With the help of Veronica, I was able to explore a foreign city to a depth and diversity that I’d never been able to do before. We covered everything from grand Cathedrals, the sites of famous riots and gigs in back street bars by Spanish-speaking Nick Cave clones. True to the legends of passionate South Americans, she wept when it all came to an end and I headed back home a few weeks later.
I should say that Tinder is now all ancient history for me. I don’t even know if it still exists. My 132nd Tinder date was with Jane, my current partner and mother of our 9-year-old daughter Josie. Our foreign holidays are now largely confined to the comfort and reliability of beachside resorts. It’s nice – but not quite the grand adventure that this disabled man enjoyed back in the day.
Written by Sean Tyrell, PDA Associate Director Victoria
Many PDA members are aware that the Parliament has passed legislative amendments intended to make it easier for victims of sexual harassment, discrimination and victimisation to enforce our rights in the Federal Court. The law has been changed so that the payment of legal costs no longer follows the outcome of a case.
For many decades, the prospect of paying the other side’s legal costs if I lost a disability discrimination case deterred me from going any further than alternative dispute resolution. But over the past few months, I have gone forward with an application to the Federal Court for an Order declaring that the National Disability Insurance Agency contravened the Disability Discrimination Act by failing to make the reasonable adjustment of providing correspondence in accessible format. The PDA membership is perhaps one of the few audiences who won’t be surprised that I’m one of many blind NDIS Participants who gets sent his Plans and other vital information in print – despite my years of asking for it in a format I can actually read.
My reflections on how the cost protection amendments have changed things are mixed.
First, I’ve certainly found it true that Parliament limiting the other side’s threat to seek a costs order against me has significantly levelled the playing field. It has both made me a lot bolder in advocating for fair treatment while simultaneously focussing the other side on the need to resolve matters without a trial.
Second, it is early days and the impact of the costs protections amendments is still filtering through legal professionals. I’ve been advised that so far no one has asked a Judge to apply the new laws, and everyone is therefore waiting for someone else to go first. As a result, barristers are taking a careful line and advising clients to proceed with caution.
Third, as good as the cost protection amendments are they are not a silver bullet for overcoming the deeper problems with the Disability Discrimination Act 1992 and Australia’s other rights protection statutes. This might mean that all the Parliament has really done is make it easier for people with a disability to lose test cases that our community might assume we would win. While for many years I’ve listened to lawyers warn me about the dangers of an adverse costs order, I’m now hearing warnings that the definitions of direct and indirect disability discrimination are so narrow that it makes it virtually impossible to win.
Fourth and final – and somewhat contrary to all the above – the Court itself does give off a strong vibe that it wants to get more active in protecting the rights of Australians with a disability. To my utter amazement, within just a few weeks of me lodging my application I got a call from the Judge’s office advising he wanted to start hearing the case as soon as possible. A month or two after that the Court doubled down by connecting me with pro bono lawyers from a large and formidable firm. I’m also hearing reports that some Judges and Court employees have been undertaking disability confidence training.
In the end, the proof will be in the pudding. While there’s certainly been useful cases since Parliament passed the Disability Discrimination Act 1992, I think it’s fair to say physical disability is still waiting for our Mabo or Richardson v Oracle. Let’s see which member of our PDA community will be first to pick up a hammer and swing it with all her might.
I went to Sydney for my brother’s wedding in November 2025. My airfares and hotel were booked back in June, so I could relax and wait for my trip to happen. Or so I thought.
This was my first trip on a plane with my boyfriend James, and his first time to Sydney (my fourth trip there, I think). I was relaxed, but James was getting stressed leading up to the trip. He’s autistic, and I was putting him in a situation he’d never been in before. It was bound to overwhelm him at some stage. My support worker Gen also came with us.
We wrote lists of what to pack, and triple checked them before zipping our suitcases shut. My mum dropped us all off at the airport (six minutes is how quick you have to be to not be charged. When you have 3 people, 3 suitcases, and a wheelchair to offload, there should be some leniency. But Mum was quick enough to get out for free!).
James wanted to be there super early. We ignored the prior messages from Qantas about online check-in and made our way to the special assistance desk. We handed over our luggage, got tags on my wheelchair and answered 100 questions about its size and weight.
By the time we got through security (and my pat down), ate lunch, and went to the toilet, it was time to be at the gate. I’d told Qantas when I booked in June that I’d need the Eagle Lift to get to my seat. They had it, but brought it out at the last minute. As I drove underneath it to be hoisted up out of my chair, they had trouble making it wide enough to fit easily. It should have been a red flag.
They brought me into the plane and then realised the sides weren’t able to come in again. They were stuck in a wide position. This would not do to get me onto my seat as it needed to be adjustable to go between the rows of seats in economy. I was hanging around in the doorway of the plane while they figured out a plan B. The staff were getting quite stressed and embarrassed by this malfunction of the lift. The plane had already been delayed an hour, so what was another few minutes? I was happy to hang around in the doorway.
I asked if they had an aisle chair nearby. Up and down on the lift still worked, so I suggested they go find one. They did, so they lowered me on to that, removed the Eagle Lift from the plane, and wheeled me down to my seat. James and another crew member managed to lift me on to my seat. Just a bit of drama to start our holiday. I hoped it wasn’t an omen for what was to come.
We had an enjoyable flight, and my wheelchair made it in one piece. It was after 11pm when we lined up for a taxi. We didn’t have to wait too long before a maxi taxi came. 22 minutes later we were at our hotel, but it cost $80! I couldn’t believe how expensive it was. My interstate voucher has a value of $25, so I had to pay $55. I was paying cash but the driver didn’t offer a discount. We took a while to get the correct change, which he didn’t appreciate, and he took off in a huff. I found out later that the NSW Government pays drivers $27.50 every time they take a local wheelchair user (a lift fee). But not when you’re from interstate, so I had to bear that cost. That’s why it was expensive for a short trip. Why isn’t it the same across Australia? If only Ubers took wheelchairs in specialised vehicles…
We checked into the Adge Hotel in Surry Hills. But when we got to our room, there was no hoist. I’d booked Independent Living Specialists to deliver a full hoist with pivot frame that day. We made a call to reception but they didn’t know anything about it. James was able to lift me from my chair into bed, but we’d need it in the morning to get me up safely. We set our alarm for 8am and fell asleep.
We called ILS just after 8am but they didn’t open until 9am. We finally had a call from John at the warehouse around 10am, He was furious that the delivery man tasked with dropping off my hoist the day before didn’t do it, nor told anyone that he hadn’t. So John was going to come himself, but not until after midday. This was the first day of our holiday. I didn’t want to spend most of it in bed. Plus I was hungry. The meal on the plane hadn’t filled me up.
So I decided to skip a shower, and get dressed in bed. Gen and James were able to top and tail me, and lifted me back into my chair. It sure beat waiting for the hoist to arrive.
John called us before 12:30pm to say he was there. We had already left and were on our way to Circular Quay to show James the iconic sites. I forgot how hilly Sydney was, and how steep ramps can be. It was lucky that James rides on the back of my chair as he was able to hold my shoulders while going down slopes. My balance isn’t great, so it was nice having James support me. The alternative is to tilt my chair back every time I went down steep ramps. That would take too long each time and I’d be late everywhere. Even with my footplates elevated, I still scraped the bottom on some ramps.
After lunch at Circular Quay, we did an accessible tour of the Sydney Opera House. It was nice to see behind the scenes, and the roof tiles up close. Our guide was knowledgeable and courteous of our needs.
When we arrived back at the hotel that night, the hoist was indeed there, and fit under the bed with the blocks I’d brought. But the carpet was very plush, and took a lot of strength to push it in our room. Why do accessible hotel rooms have carpet? It would make life easier if they had a hard floor covering instead, with the option of a rug if people required it.
The next morning we got up and had a shower. It was easier to leave the hoist in one position and bring the chairs to me. The hoist plus my weight made it tricky to move with me in it over the thick carpet. Of course we had to move it from the bed, but once clear, we left it in place. I was lowered onto my shower chair (I brought my own) and had a nice shower (although there was a large leak coming from the hose. While rinsing my hair it was washing my face at the same time!).
When it came time to transfer from the shower chair to my wheelchair, we hoisted up to the maximum height (which wasn’t very high). After changing chairs beneath me, I was lowered. We detached the sling, and pressed the up button. Nothing happened. It wouldn’t go up to make space for me to reverse. It would only go down.
I managed to back away, and plugged the hoist in, thinking it had a flat battery. Ten minutes later we tried again, but no change. At least I’d had a shower and got dressed and was in my chair before it broke down. I called John from the day before and told him about the issue. He said he’d send someone and report back later today. We left it at reception and headed for Taronga Zoo.
I’d forgotten how hilly the zoo was. In some places there were gentle slopes, but steep slopes in other locations. I’m glad I’m in a power wheelchair as manual chair users would have trouble. The zoo does have access maps, so is possible to plan your trip.
One of their lifts was out of service, so to get back up from one area, we had to go back all the way we’d come. Everyone else could go straight up the escalator instead. The views from some parts of the zoo are spectacular, and we saw plenty of animals.
John called me back to say they sent someone to check my hoist, but is in working order. They couldn’t find a fault with it, apparently. Very strange.
The bus drivers we had that day were kind enough to let us on without paying. I informed the drivers that we have electric ramps on our buses in Perth. They sounded annoyed that they had to fold the ramp out manually. I was impressed there was a seatbelt for wheelchair passengers to use, and I probably should have. Those roads are so bumpy and have I mentioned how hilly Sydney is? My wheelchair slid a few times.
The next day we had the same issue with the hoist not going up again. Instead of calling them, I asked Gen to lower it all the way to the bottom. Sure enough, it then went up again. I’ve never had this issue with a hoist before. We made sure we never went to the maximum height after that, and didn’t have another problem with it.
The wedding was held at the National Art School in Darlinghurst. It was beautiful. A real party. But no accessible toilet. After 5 glasses of champagne, it was almost midnight, so I decided to call it a night. I went back to the hotel to use our accessible toilet. It was a shame that I couldn’t stay on, and party until the sun came up like my brother did with half the guests. But I still had fun.
On our last full day there, we decided to go to Manly on the ferry in the afternoon. But first, lunch. Some locals raved about a ramen shop nearby that we were keen to try. We ran out with 30 minutes before their kitchen closed, only to find they had a big step out the front. We were so looking forward to ramen, but had to settle for burgers down the road as they had access. It wasn’t fair.
The Manly ferry was nice, once I got over the shock of the gangway. It was steep. Going up is easier for me than down, so I got on without much trouble. I was hoping we’d come back to a different pier; one where it was less steep. My heart sank when we weren’t.
“Wait until everyone else is off, please,” the ferry worker told me. I was preoccupied with the steepness of the slope that I failed to notice how close the fence was to the end of the gangway. I wasn’t going to be able to turn as soon as I was down and I would probably hit the fence.
As soon as everyone else was off, they moved the gangway so that it was no longer on a 90° angle with the ferry. It looked very dangerous being on a more acute angle. They reassured me that it was safe enough for me to go down. I tilted my chair back, James jumped on the back of my chair so he could hold on to my shoulders and keep my balance, and we went down very carefully with my heart in my chest. It felt like a miracle that I made it off the ferry in one piece, and didn’t crash into that fence.
I was so stressed about getting off that ferry safely that I forgot to get a video or a photo. How they can justify that it meets disability standards is beyond my belief. I recently travelled to Rottnest by ferry, and also had issues with the steep ramp getting off.
As much as I enjoyed my time away, I looked forward to coming home. But it wasn’t before more dramas with the Eagle Lift breaking down at Sydney airport before boarding our flight. Luckily, they had a spare, and it was brought out to assist me all the way to my seat on the plane.
Sydney is a very pretty city, but for anyone in a wheelchair, it’s a tough place to navigate. There’s no place like home, and I was very grateful to be back in my own bed, with equipment that worked, cheaper taxis, and in an easier city to navigate on six wheels.
Katherine Reed is an incredible woman and someone that we are proud to have involved with PDA as Tasmania’s Associate Director.
She has just had her story shared by the ABC.
A great read.
https://m.facebook.com/groups/physicaldisabilityaustralia/permalink/10162578990732599/?
Photo supplied by Basketball Victoria.
The elevator doors closed behind me, but it didn’t move.
Uh-oh, I thought. Now what?
In the 14 years I’d been a wheelchair user, I’d never been in a lift on my own before. But here I was, in my first semester of a Japanese Studies degree at Murdoch University, and needing to get to the second floor for a lecture on cross-cultural psychology. It was a very small lift in an old building at the opposite end to the lecture room. My arms weren’t long or straight enough to press the button to go up. I was stuck. For about an hour. And missed my lecture.
This was 1997, before everyone had a mobile phone, so I couldn’t even call for help. Eventually someone came to use the lift and found me – what a surprise they got. I was just relieved to be out of there. Lucky I don’t get claustrophobic.
That afternoon when my mum came to pick me up, I told her what had happened. “You need to carry a stick,” she said.
Being the practical person Mum is, we stopped at Bunnings on the way home. She bought me a wooden dowel, a pack of rubber stoppers that fit the end, and some plastic tubing. When we got home, she put a rubber stopper on one end of the dowel, cut some tubing and slid it over the other end, and gave it to me. Voila: my stick was born.
I put the plastic tubing end into my mouth and tested my stick on a light switch. Oh my goodness, it worked! For the first time in my 17 years, I could do things I’d never thought possible, like turn a light on or off. This would be the start of the independent life I’d craved. Thanks Mum!
But what else could I use it for? I looked around my room. If I hooked the little rubber stopper on my pencil tin on my desk, I – oh yes – I could bring it closer or push it out of my way. I learnt that I could also scratch my head, type on my computer and open and close doors. While I was living with my parents and three younger brothers, it hadn’t occurred to me that I’d need to be capable of doing these things for myself if I wanted to move out of home and not need 24-hour care.
The only challenge with my new stick was how to carry it? I’d need it at uni to press lift buttons, so I wouldn’t get stuck ever again. My stick might be small in diameter but was about a metre long. It was too big to carry on my tray.
My dad got to work in his shed. He was a boilermaker and had lots of tools at home. It didn’t take him long to develop a stick holder. Made from aluminium tubing, he blocked the bottom, and attached a bracket to screw to my leg rest. I now had a stick and could carry it everywhere I went. Thanks Dad!
I developed an independent spirit from that day. My parents had always encouraged me to do as much as I could for myself, while accepting help for the things I couldn’t. But with this stick, I could demonstrate it practically to others. I’m certain it helped me be accepted as an exchange student to Japan in 1999 for 10 months. I wasn’t taking no for an answer and was determined to fulfil my university studies degree by studying at a Japanese university.
The problem with wooden sticks is they broke often. And when overseas studying, it became an issue. We found a hardware / garden centre that had my stick replaced quickly, every time I broke it.
Once back in Perth, I graduated and had to find a job. I was invited to be a guest speaker at disability awareness training sessions for Main Roads staff. I always started my talk by showing my stick and asking what people thought it helps me with.
After one presentation, a man at the back put his hand up to ask me a question. “Why do you use a wooden stick? Have you ever used fibreglass sticks?”
I shook my head. During the morning tea break we chatted further. “We use them as flag poles for the orange flags at children’s school crossings,” he explained. “We often get them back a bit worn out. I could deliver some to you next week.”
Sure enough, the following week he delivered four to my door. They were slightly slimmer than the wooden ones I was used to, and a little heavier. I had to build my jaw muscles to be able to use it effectively, since I use it in my mouth for most things. It took me a while to get used to it, but I haven’t broken a stick since. I’m still using the original ones – for over 20 years now.
In 2015 I received my third assistance dog, Upton. He found my stick difficult to pick up off the floor. He couldn’t get his front teeth underneath it. “What if we added an elastic band?” his trainer asked me.
With the band in place, Upton learnt to target the band to pick it up every time. But I quickly found another use for it: tagging my Smartrider card on and off buses and trains. I always carried my card in a plastic pouch with a pipe cleaner handle, and dangled it from the end of my stick. But on buses, the tag-on machine is above my head height, so the pouch always slid and hit me in the face. The elastic band stops it sliding, and since then I haven’t had to ask other passengers to tag on for me. Thanks Upton!
In 2023 I was browsing social media when I saw a competition called the Simply Open Awards. They were looking for simple solutions and innovations that can help people with disabilities. I made a five-minute video about my stick. I explained why I needed it, how it was made, and demonstrated several uses around my home, from pressing light switches to sliding doors open and closed. I even showed how I can heat my leftover dinner in the microwave with the short stick I have.
One evening I received an email saying I was a prize-winner (a cash prize of £750), and my video had been sent to the judges at the Discovery Awards. The next night I received an email saying my video was voted the top two innovations IN THE WORLD, and my prize was a trip to Vienna to attend the Zero Project Conference in February 2024! All because of the video I made about my stick. The stick I carry everywhere because I was stuck in a lift and couldn’t reach the button. The same stick that has enabled me to catch public transport to work independently, and not need 24-hour care. It really did change my life.
PDA’s CEO, Jeremy Muir, was a recent guest on Navigating Disability’s popular podcast.
We admit to being a biased crew here in the PDA office, but we think this interview is so powerful and simply confirms our superfan view of Jeremy.
Interviewed by Kate Read and Jenn Abbott, this podcast explores Jeremy’s life both before and after acquiring his disability, where his life has taken him and how he came to a place where he is proud of what he’s achieved and who he has become.
It’s now available to view on YouTube (www.youtube.com/watch?v=oQK9C55JbI4) and is particularly relevant to share with you on #ruok day.
We encourage you to check it out.
“At just 19, Jeremy Muir’s life changed forever after a car accident left him with a spinal cord injury. But as Jeremy says, “Why not me?”, a question that became a driving force behind his journey of resilience, reflection, and radical independence.
In this powerful episode, Jeremy opens up about the mental, emotional, and physical challenges of adapting to life as a quadriplegic. From his early struggles with depression and suicidal thoughts, to building a fulfilling life filled with love, purpose, and advocacy, Jeremy’s story is both deeply human and extraordinarily hopeful.
We talk candidly about the gaps in mental health support, life before the NDIS, navigating relationships, and why disability must never be an afterthought in society. His reflections remind us that inclusion isn’t just a policy, it’s a mindset and a responsibility we all share.
⚠️ Trigger Warning: This episode discusses topics related to depression and suicide. If you or someone you know needs support, contact Lifeline at 13 11 14.
🎧 Join us for this emotionally rich episode that will leave you inspired to listen more, judge less, and advocate fiercely.”
As it comes to end of Disability Pride month for 2025, I wanted to reflect on what ‘Pride’ means to me as a person who has lived with their disability for over 40 years.
Every July, Disability Pride Month offers an important opportunity to honour the dignity, achievements, and vibrant diversity of the disability community. It is a time to celebrate the unique contributions, creativity, and resilience of people with disabilities, whilst also recognising the ongoing efforts for equity and accessibility.
Disability Pride Month reminds us that disability is an important part of human diversity, deserving of visibility, respect, and pride. By embracing inclusion and dismantling barriers, we move closer to a world where everyone can fully participate and thrive.
As I have always worked in the disability sector in one role or another, I have had the privilege to meet, to know and to learn from some of the most committed, most talented and just straight-out wonderful individuals living with disabilities or those without disabilities who have worked for the cause. For this I am forever grateful and extremely proud that I have had the opportunity to learn from the best.
Fortunately, I still get the opportunity to meet and learn from people with disabilities and those who work in our community who are new to my life, and I am constantly reminded by how resilient, dynamic, intelligent and committed they are to fighting the good fight for people with disabilities. I am often humbled to call them colleagues, to call them friends and further humbled that they consider me the same.
I am proud of our disability movement, I am proud of everyone I work alongside, I am proud of our history, and I know I will be proud of our future.
More importantly and often difficult to acknowledge, I AM proud of myself.
As NAIDOC weeks draws to a close once again, I want to pay respects to all the deadly mob who have come before us, who are with us now as elders and those that are following the song lines of our elders.
The oldest living culture on earth does not have a single word for disabilty but views disability more as a state of the human condition, focusing more on specific impairments, “aunty can’t walk real well” or “uncle can’t hear too good” (First People’s Disability Network, 2025).
In a community where the focus is on caring for everyone, where all mob are treated equally, where kinship and family are the backbone of the connection to community and country, we can only as a whole nation aspire to this.
We are not there yet!
The rates of Aboriginal children in custody are still high. The rates of disabled men, women and children abused in our institutions are high. Death in custody is a real and present danger for community and racism within systems impact services and treatment community received.
We are not there yet!
When we speak of disability and being disabled as a member of a community (the broader Australian community), most of us know that in this land, having a disability means you are discriminated against, daily, actually ever time you go out in public there are acts of unconscious bias and even conscious bias towards us as disabled people.
We are served last in shops, we are spoken to like children, we are excluded from mainstream society. Our outcomes for health, education, employment and housing are the bottom of the statistic in this country.
BUT resilience can be seen and witnessed in even the darkest of corners, where disabled people are pushing back, where community is standing by us and in some instances, we are thriving.
The intersectionality between black and disabled provides us with a lens to examine our priorities when it comes to unconscious bias and institutional racism. It is time to call it out. Not in a rabble of disconnected individuals but as a community.
It is reported that 63% of Aboriginal people with disabilities have a physical disability (australian institute for health and welfare 2025).
So at the end of this NAIDOC week 2025, I want to give thanks to those who are striving, thriving, and pushing back against the almost insurmountable societal challenges that we all face everyday. The theme of NAIDOC 2025 is, Next Generation: strength, vision, and legacy. To mob stay, deadly and strong!
We can get there!
(I am a stepchild, raised by an aboriginal man since I was 12 years old, a Palawa man, whose mother was Violet Smith (née Burgess). I have an undergraduate degree in Indigenous studies from the University of Tasmania.
#NAIDOC2025 #NAIDOCWeek #StrengthVisionLegacy
You know that thing when you hire a cleaner and then go around making sure that the house is tidy enough for the cleaner because you are embarrassed and you don’t want them to think you are hopeless?
You know that feeling of dread you get when you have to “ask your cleaner to do something?”
It’s like you are asking a huge favour and they are not obligated at all to comply. I mean seriously, are they are doing you a favour coming into your home for money to wash your clothes and clean your bathroom?
Okay, let us take out “cleaner” and insert “support worker.”
Why is it that so many disabled people (including my self) feel nervous and scared of rejection if we ask support workers to simply do their job?
I often hear myself asking “can you do me a favour?” if I am asking them to check the mailbox, get the bins in or make me a cup of tea. It feels like I’m imposing. Does this happen to anyone else or is this an internalised ableism?
I don’t think so. When we talk about the relationship between support worker and disabled person there is the warm and fuzzy – the helping and gratification model of support work, where the person is a hero for preforming the work, rather than a dedicated professional engaging in their work.
In contracts or “service agreements” there are “how we will treat you” and “how you will treat us” clauses that speak of mutual respect and kindness. So why does it feel like I will hurt a support worker’s feelings if I cancel a shift or choose someone else to do a shift instead of them? Is it the worry that they won’t come again and I will lose their services?
In looking at the “how we treat you”, there is a gaping hole of detail that does not acknowledge the power imbalance, the trauma that a disabled person carries with them, and the unique and personal experience of discrimination, subjugation and ‘othering’ that the person with disability has been a victim of all their lives.
We should be skilling our support teams with trauma informed practice. They should least have a basic understanding of how their presence is in fact that of power over us.
How many times have I heard “that client was mean” from support workers? Seriously, that person has a complex and difficult life and your feelings are hurt?
We are doing a disservice to professional and skilled support workers by allowing our leadership to allow the rogue element of workers, motivated by money, rather than professionals to populate the workforce – but how do we make a standard that protects everyone?
Scenarios that make us fearful include support workers not turning up for a shift or ringing at the last minute to say they are unwell.
Similarly, gaslighting where a support worker says that they don’t feel well and so, to make it easier on them, you scale back their work for the day and change your plans, so that you do not go out.
Also, If we change their agreed hours from say 8 hours to 5 hours and this results in their sudden inability to work for you anymore. They reason that they just cannot make ends meet with a reduction of hours. I mean with no overheads other than insurance and a base rate of $67 they are not that bad off.
These are real situations.
So how does policy and quality and safeguards protect the person with disability?
I recently travelled to Adelaide, the capital city of South Australia. Adelaide is known as the city of churches and for the natural green belt that surrounds the city. It’s also known to have an easy-going lifestyle.
My visit to Adelaide was to enjoy this and to also attend the National Amputee Conference, which is held every 2 years and hosted by Limbs 4 Life Australia. This was my second visit to this event. My first was the last one, held in Melbourne – my home city. I enjoyed it and the connections I made so much, that I promised myself that I would attend the next one – wherever it was held. And so I did.
The conference was held at the Adelaide Convention Centre, a great venue with good accessibility great staff. This year the conference was attended by 300+ from all corners of the country, and included all types of amputees and those who support them.
Limbs 4 Life Australia is a peak organisation for upper and lower limb amputees, and provides services to them, their families and caregivers and support before and after amputation. You can find out more at https://www.limbs4life.org.au
The national Amputee conference is known as AMPedUp and enables all amputees and those who support them find out about the latest in prosthetics, hear talks by healthcare professionals, better understand legal matters, learn about available Assisted Technology and listen to some amazing presenters sharing their struggles with limb loss.
There were also many networking opportunities for attendees over morning teas, lunches and afternoon teas, also allowing friendships to be made and stories and struggles with limb loss to be shared. It was also great to check out the many exhibitors showcasing the latest in prosthetics, wheelchairs, and vast array of healthcare providers. A converted car was also on display by Brazier Mobility, which drew a lot of attention.
Image 1 Exhibitors display
Image 2 Returning from Afternoon Tea
Of most interest to me was attending presentations from numerous speakers who shared their stories and the experiences they had in dealing with limb loss, in terms not just of their own struggles but also those of their families – and especially their children.
One of presenters Kylie, provided her perspective as a congenital amputee. She recounted stories around parenting and her ability to perform everyday tasks (such as hanging out clothes to dry or changing nappies). She also spoke of her childhood where adaptation and problem-solving were emphasised over limitations. Kylie also mentioned her absence of phantom limb pain, a striking contrast to many attendees’ experiences, which highlighted the differences between congenital and acquired limb loss.
Another presenter and his wife shared their experiences following their involvement in a transport accident whilst overseas, and how they dealt with the barriers created by their children being back home in Australia. Their presentation titled ‘Why Us?’ is also the title of their published book, and included snippets from that book written by the husband about his wife’s resultant life changing injuries and his struggles in dealing with his almost injury free future. It was such a great story that I bought the book to read about it further.
Presenters from Paralympics Australia also put on a remarkable presentation, talking about Wheelchair Basketball and Australia’s first Gold Medal in Rowing at the Paris Games. If you put your mind to it almost anything is possible. There were also presentations from Ottobock Australia, Ossur and OPC health and many more, each showcasing the latest in prosthetics and how far we have come.
There were also presentations titled “Laughter is the best medicine” by Jan Vaughan which got the audience involved, and another named “Musical Mystery Madness” where we had to name the song by title and artist. We also had to work out the common theme of the songs. Guessing wasn’t that easy, but when the answer was revealed I could understand the reasoning. Whilst I can’t remember all 7 songs included, the theme was cleverly built around limbs or body parts.
We were reminded of the many quotes familiar to most of us throughout the conference, motivating us and reminding us to look back at these these when we’re feeling down and struggling. These included:
Image 3 Some light entrainment at the Welcome event (look for a familiar face.)
For those who don’t understand limb loss and how it effects lives, I recommend that you attend one of these events and see it from our many perspectives – as all amputations are not the same or as they appear to be. I will be at the next conference whenever or wherever it will be.
During my time in Adelaide, I also had the chance to explore some of the attractions, soak up the culture and check out the city from an accessibility point of view – perhaps a topic for a future blog?!
Whilst at Adelaide airport waiting for my flight home, I saw this quote by Henry Ford
“When everything seems to be going against you, remember that an airplane takes off against the wind not with it.”
Something that I took home,
Thanks for reading.
Links to some of presenters who shared their stories and experiences
https://www.limbs4kids.org.au/personal-stories/kylie-grew-up-with-no-limb-its
1800 732 674
