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Being diagnosed later in life with neurodivergence and chronic illness changed the way I understood myself.
For many years, there were parts of my life that felt harder than they seemed to be for other people. There were things I found challenging, barriers I did not have words for, and moments where I pushed through because I thought that was what I was supposed to do.
When I finally received my diagnoses, so much of my life started to make sense.
Since then, I have spoken with many people who have shared similar experiences. People who were diagnosed later in life often talk about looking back and realising why school, work, social situations, health, or day to day life felt so difficult. Many of us wish we had known earlier, because with the right information, understanding, and support, things could have been very different.
Education is such an important part of this.
Before my own diagnoses, I had never heard of Dysautonomia. I also had no idea how many different conditions existed, or how many acronyms and letters could suddenly become part of my everyday life. I quickly realised there was a real lack of clear, accessible information about many chronic illness conditions, especially invisible disabilities.
As my conditions became worse and started impacting my day to day life more, I had to make rapid lifestyle changes so I could maintain the same quality of life as much as possible. I also had to do a lot of my own research. I researched my conditions, treatment options, different specialists, and the types of support that might help me. I had to learn how to self advocate in medical settings, at work, and in my community so I could access the supports I needed.
Living with invisible disability can be difficult, because people cannot always see what is happening. Some days I may look fine, but during a flare up I might need to use mobility aids or other supports to get through the day safely and comfortably.
I think it is so important that we normalise mobility aids and all forms of support. No one should feel shame for using the tools they need to participate in life. Supports do not take away a person’s independence. They often make independence possible.
I am lucky that I feel comfortable disclosing and talking openly about my conditions, but I also understand that not everyone feels safe to do that. Everyone has the right to choose what they share and when they share it, especially when discrimination still exists.
Today, I use my lived experience in both my work and my community. I work in disability advocacy, I am an active member of local access and inclusion groups, and I volunteer by running accessible and inclusive gaming events. I am passionate about showing people that inclusion does not have to be complicated. Small changes, better education, and a willingness to listen can make places, events, and communities more accessible for everyone.
My story is still ongoing, but one thing I know is this: diagnosis can be powerful, education matters, and people deserve to understand themselves without shame.
When I was 21, I had a brain injury in my cerebellum. The injury was very serious and came very close to killing me. My parents were told that I might not survive, and they had to make the heartbreaking decision to let me go.
The doctors gave me a little more time, and during that time, I woke up.
Surviving was one part of my story, but recovery was another. I had a long rehabilitation journey ahead of me. I had to learn how to walk, talk, and eat again. Regaining my quality of life was really difficult, and there were many moments where I had to keep choosing not to give up.
During that time, I wrote every day about my life, my thoughts, and what I was going through. Writing helped me process everything that had happened and everything I was still working through.
Today, I box, I drive, and I continue to build my life. Exercise is something I have had to slowly introduce again, and it took a long time to regain the quality of life I have now.
I am currently writing a book about my life. It is about the adversity I have faced, the things I have had to overcome, and the wisdom I have gained through my experiences and travels.
For me, good support means having people around you who encourage you to try your best. It means having people who build you up and support you to become the person you want to be.
I am now a community mentor, and I speak at workshops to help others understand that even if you have to learn how to do everything again, you do not have to give up. With the right support, encouragement, and determination, you can continue to have a great life.
I live with POTS, Ehlers–Danlos syndrome, among other chronic health conditions. Living with these invisible health conditions has shaped the way I move through the world, and has shaped my passion for advocacy, accessibility, and community education.
I am the owner and handler of Western Australia’s first solely scent‑trained assistance dog for POTS. She plays a vital role in helping me manage my health safely and independently. However, we still face barriers from the public, especially when people expect disability to “look” a certain way. A big part of my advocacy is helping people understand that assistance dogs can be any shape or size, and that disability should never be judged by its visibility.
I’m currently in my final year at university studying a Bachelor of Science (Occupational Therapy), completing my Honours research. I hope to use my lived experience to support others navigating similar challenges. Alongside this, I wrote and self-published a children’s picture book to help reduce diagnostic delays for scoliosis. The book uses simple language and gentle storytelling to help families recognise early signs and feel confident seeking support. It’s become an important part of my advocacy, and sharing my own story about living with conditions like scoliosis and being diagnosed later. The book can be purchased here: https://www.amazon.com.au/Crooked-Carrot-Evies-Bookshelf/dp/1763879704
I’m also the Director of Education and Outreach at BioPaws Detection: https://www.biopawsdetection.org.au/
We created BioPaws because people like me often face long diagnostic delays and limited awareness of conditions like POTS, and we wanted to explore whether bio detection dogs could help people receive answers sooner and feel believed earlier in their health journey. BioPaws brings together my passion for dogs, scent work, and advocacy, and my work now focuses on ethical scent‑based medical detection, invisible disability awareness, and community education.
Sharing my story is important to me because representation matters. If it helps someone feel seen, or shifts even one person’s understanding of invisible disability or assistance dog access, then it’s worth it.
My name is Paige, and I recently started my own dog walking business in Busselton.
I have always loved animals, and starting my business has given me the chance to turn that love into a service that helps local pet owners.
As a person with disability, starting a business has come with challenges. I have had to learn how to navigate competition, promote myself, and step outside my comfort zone. It has not always been easy, but I have kept going, continued learning, and grown more confident along the way.
I love being able to support pet owners by offering a flexible and reliable dog walking service. It makes me happy to see how grateful my customers are and to know that my work makes a real difference in their lives and the lives of their pets.
Running my own business has helped me stay active, build my confidence, and continue developing new skills every day.
There is always an opportunity to learn.
My name is Emily, and I am an active community advocate. I work in the disability sector and also volunteer much of my time to help make my community more accessible and inclusive.
I am super passionate about communication, disability, and human rights. Through my work and volunteering, I support initiatives that help people communicate in different ways and be more included in community life.
I teach key word sign and have supported my local council to introduce communication boards across the community. These boards use alternative and augmentative communication symbols to help people share their thoughts, needs, choices, and feelings.
The goal of the boards is to support people with communication differences or difficulties to communicate, while also building awareness and understanding across the broader community. They can benefit many people, including people who are non-speaking, people who use communication supports, people with disability, children, and people who speak English as a second language.
The boards also help improve quality of life by supporting social engagement and community participation. They show what can happen when a community acknowledges difference and takes practical steps to reduce barriers.
Communication boards are currently located at Koolambidi Woola, Hudson Road Dog Park, Big Swamp, and Koombana, with more planned for BRAG, South West Sports Centre, Foreshore Playground, Laughton Park, St Peter’s Green, and other local playgrounds.
This initiative was driven by myself and Laura Rosenhart, a local speech pathologist, with support from the City’s Co-Design Access Panel to develop the signs.
For me, inclusion often starts with people in the community noticing a barrier and choosing to do something about it. Through advocacy, education, volunteering, and practical action, I hope to help create a community where more people are understood, included, and able to take part.
Hi, my name is Rob, and I have been using a wheelchair since 2019.
I have always loved travelling, and being in a wheelchair has never stopped me from jumping on a plane and setting off on an adventure. The world is slowly becoming easier for people with disability, especially when it comes to travel, so my motto is simple:
“Give it a go.”
I live on five acres in the Ferguson Valley and love the country life. I enjoy the space, the peace, and being part of a regional community.
I also volunteer as a school mentor at Australind Senior High School one afternoon a week. It is something I really enjoy, and it gives me the chance to support young people and give back to my community.
I am also about to head off to Ireland for a month of travelling solo, which is very exciting.
Outside of travel and mentoring, I do a lot of informal self advocacy when I see something that could be improved. At the moment, I am speaking with a local ferry service about ways they can make their service more accessible and inclusive for people with disability.
I am an active member of the City of Bunbury CODAP and Access and Inclusion panels, and I also volunteer in community co-design sessions and help lead community initiatives that aim to make Bunbury more accessible.
For me, access and inclusion are about giving people the chance to participate, travel, contribute, and enjoy life in the way they choose. My experience has taught me that sometimes change starts with speaking up, asking questions, and being willing to give things a go.
I was born in 1984, with a condition so rare (Incontinentia Pigmenti), that it wasn’t until the age of four that I was inadvertently diagnosed by a visiting paediatrician from Canada, who happened to be an expert in my condition.
At birth, I was labelled with many things by medical professionals. A vegetable and a funny-looking kid, foremost among them. But it wasn’t until I began speaking at six months old that anyone entertained the idea that I could be a person of substance.
Otherwise, my childhood was normal. Or as normal as a child with a disability’s life can be, and I was an average student. I was always very entrepreneurial, though, desperate to prove to everyone that I was more capable than they presumed.
When I left school, I accepted a traineeship at the Disabilities Services Commission. I then moved on to a career spanning more than 19 years in administration, communications, and marketing at a well-known private healthcare provider.
In 2013, fed up with being constantly underestimated by almost everyone despite now successfully leading a conventionally “normal” life, I started the blog ‘Inner musings of a funny looking kid,’ giving readers a glimpse into what my life is really like and hopefully raising the abysmally low expectations of disabled people in general.
In 2023, I left my role in the healthcare industry to pursue further opportunities elsewhere, confident that my skills and experience would lead me to a new role. Frustratingly, I remain disappointed, and my search is ongoing.
In the meantime, I am still writing and serving in a number of disability advisory groups and co-design projects to promote disability access and inclusion.
All as part of my never-ending quest to prove that you can’t judge a book by its cover.
Check out Nina Blog here , Inner Musings Of A Funny Looking Kid at www.ninimeany.wordpress.com
For forty years I have worked at the same workplace. People at work often tell me I bring kindness to their day, and that means a lot to me. I love being part of the team and it feels good to know my work is valued.
I am an independent woman, and I like doing things for myself. I get ready for work on my own, travel by myself, and keep a routine that I have built over many years. I do have support workers who help me with some things when I need them. They support me but I choose my goals, where I want to go, and how I want to spend my time.
Travel has always been something I enjoy. I have visited countries all over the world, tried new foods, met wonderful people, and seen so many beautiful places. One of my favourite trips was my recent holiday to Tasmania. I was able to hug a wombat, which was something I had always wanted to do, and I tried some of the best food I have ever eaten.
Family is very important to me. I have a close and loving family who support me and celebrate my achievements. I also have great friends and support workers who cheer me on and respect the choices I make.
A good life comes from opportunities you take and the choices you make for yourself.
I had to do a big speech at my service provider’s AGM. I was really nervous. My hands were shaking, and my heart was beating fast. I kept thinking, “What if I mess up” or “What if I forget something.” But I practised a lot. I told myself I could do it. When I finally stood up and spoke, people clapped and smiled at me. That made me feel proud.
I love making TikToks. I make funny videos, happy videos, and videos that make people smile. Creating content makes me feel confident. It is something I am good at, and I like knowing I brighten someone’s day.
My favourite thing now is being a peer facilitator. I like helping other people with disability and talking to them about being your own cheerleader. I like saying, “You can do this” and “Believe in yourself.” When people listen to me, I feel like I am doing something important.
Before this job, I had other jobs that were really hard for me. I tried my best, but I didn’t get the support I needed. Sometimes I didn’t understand the instructions, or things moved too fast. When I struggled, I felt like I wasn’t good enough. But now I know it wasn’t me. I just didn’t have the right support.
Working with Advocacy WA feels different. The team helps me a lot. We practise together, they check in on me, and they make sure I feel ready before I speak or help run a workshop.
I want people to know this: everyone can shine when they have the right support. Everyone deserves a job where people believe in them. I am proud of myself, and I am happy I get to help others feel proud too.
Running a business with a disability has strengthened my focus, empathy, and ability to delegate effectively. I’ve learned to design systems and spaces that empower others — from adaptive layouts in our restaurant to inclusive hiring and leadership practices that value capability over conformity. My chair doesn’t define what I can do; it reminds me to innovate around obstacles.
In a demanding industry that prizes endurance, I’ve found that true strength lies in adaptability and mindset. Success, for me, has meant proving that excellence isn’t achieved despite disability, but often because of the perspective it brings — resilience, patience, and an unshakable commitment to quality and people.
I hope my journey encourages others to see that barriers can become blueprints for building something enduring and exceptional.
— Darren Haunold
Managing Director, Will’s Domain Winery & Restaurant
Michelle – Barriers Are Built Into Systems, Not Bodies
I was lucky enough to grow up around my Aunty and cousins who never treated me any different. At home, I was just one of the kids swimming, building treehouses, filling the hallway with Lego cities. It wasn’t until I started kindy that I realised my mobility was going to be an issue.
Back then I wasn't using a wheelchair, I was walking but with heavy calipers that made me slower than the other kids. Moving from one classroom to another, I was always the last to arrive. My best friend Jodie, would hold my hand to help with balance and walk with me wherever we went. Even when the teasing came because I looked and walked differently, having her by my side made school feel like somewhere I belonged.
But things changed. One day a bus showed up at our house to take me to a different school because my old one apparently “couldn’t cope.” No one asked me or my family what I wanted. I cried getting on that bus. At the new school the classes were small and structured, but the work felt watered down. I finished first, got extra marks, but I wasn’t being challenged. Later, I was moved back into mainstream another decision made without me.
Each change was a reminder that it wasn’t me holding myself back it was the system around me. Stairs I couldn’t climb, toilets in the wrong place, playgrounds I couldn’t reach in time. It wasn’t my body that made school harder, it was the way schools were designed and the decisions made without listening to me.
Through it all, I found strength in connection. I think about Bradley, a boy with cerebral palsy who communicated by tapping out letters while I wrote them down. To me, he was the smartest person in the room, a reminder that ability isn’t lost when communication looks different, it’s lost when people don’t take the time to listen
Looking back now, I can see how much things have changed and I’m grateful that children today have more opportunities to be included. But we still have a long way to go. Decisions about where children with disability learn, play, and grow are still too often made without them or their families at the table.
We can’t let systems decide what children are capable of. We need schools, services, and communities to see us as part of the decision-making, not as problems to be solved. That’s why we must keep pushing, because true inclusion isn’t about adapting people to fit systems, it’s about changing systems so every person belongs.
*This story is shared by a community member who uses a mobility support aid. Their name has been removed to protect privacy.
I’ve always loved going to music festivals and big events the energy, the people, the atmosphere. But every time, I’ve had to advocate for myself just to enjoy it like everyone else. And it’s usually the simplest things.
At one recent festival, I went to the ‘accessible viewing area’ only to find there weren’t any chairs. Once again, I had to go and ask, to explain why it mattered, to remind people that accessibility is about more than just a space behind a barrier. They did bring chairs in the end, but it shouldn’t be this hard.
I wish I could say that story was a one-off but it’s not. I’ve had similar experiences at most events I’ve attended. Too often, accessibility features are there in name only: ramps blocked by signage, “accessible” spaces that aren’t actually usable, or staff who haven’t been trained to manage them properly. At the last event I went to, the accessible viewing area had even been opened to the general public because security didn’t understand why it needed to be reserved. It’s not about bad intentions it’s about systems that still don’t understand the purpose behind accessibility.
I’ve worked in the community and not-for-profit sector for a long time, so I know firsthand how much time, energy, and passion goes into running events and I also know that accessibility isn’t optional. There are clear legal requirements, but beyond that, there’s a moral responsibility to make sure everyone can take part.
When you attend a lot of events, you start to see the difference between accessibility that’s been ticked off on a checklist and accessibility that’s been thought through with real people in mind. One feels like a box ticked, the other feels like genuine inclusion.
That’s why it means so much that Advocacy WA has taken my story on board. Instead of me having to keep speaking up on my own, they’re working with event organisers to give lived-experience feedback and turn it into change. There’s power in knowing my experience won’t just fade away it will help shape events so the next person doesn’t have to fight the same fight.
For me, that’s the real hope: that one day going to a festival will just be about the music, the friends, the fun not about battling for the basics and with All Access Events, I believe we’re heading in that direction.
Story told by his mum, Bec
When I was pregnant with Jack, we received no real support or guidance. We were handed a single black-and-white pamphlet about Down syndrome and told to come back in two weeks if we had questions. There were no referrals, no connection to services, and no sense of community to walk alongside us in those first days.
From the start, we had to carve our own path. Jack was deemed “not complex enough” for public care, so every cardiology, ENT, and ophthalmology appointment was arranged privately and self-funded. We became not only his parents but his coordinators, advocates, and constant champions.
When it came time for school, people questioned our choice to enrol Jack in a mainstream classroom. There was an assumption that disability automatically meant segregation but we knew Jack belonged with his peers. And we were right. His school welcomed him wholeheartedly, ensuring meaningful participation with the support of his EA and AAC device.
The result has been nothing short of incredible. Jack has thrived in his mainstream environment, not just learning but leading. He has been elected Student Councillor for Year 1, joins in assemblies, and is an active, valued member of his school community. This school has been one of the few places where I haven’t had to fight for his inclusion, where support was offered freely, not wrestled from the system.
Of course, battles remain. Access to out-of-school care and vacation programs continues to be a struggle, with many centres lacking the resources or willingness to accommodate children with disability. Advocacy is still part of our daily life.
But Jack’s story is not defined by barriers. It’s defined by friendships, leadership, and possibility. His journey proves that when communities choose inclusion, children with disability don’t just “fit in” they flourish.
Stu Schonell, CEO – Advocacy WA
After a life-changing accident in 1988 left me a paraplegic, I was told meaningful work wasn’t in my future. However, I refused to let a diagnosis define my destiny.
I went to university and earned a degree as one of the only students with a disability on campus. I also re-certified in SCUBA diving—defying assumptions that wheelchair users can't explore the depths. Frustrated by employers unwilling to hire someone with a disability, I launched a shoe-repair shop. This grew into a thriving entertainment-games business. A chance meeting led to a sales role with Bacardi Rum, enabling me to earn a commission when visiting towns to service gaming machines.
At 36, I changed direction seeking new challenges, as a business lecturer at TAFE Karratha. Teaching ignited a new passion, so I completed an education master’s and ran a registered training organisation, pioneering fly-in fly-out training sessions by wheelchair!
Seeking a new challenge I applied for a senior teaching role at the University of Tasmania. After nine years of shaping programs that welcomed students of all abilities, ending with a stint as an Associate Dean, it was time to head home.
Today, as CEO of Advocacy WA, I draw on these decades of barrier-breaking experience to dismantle obstacles for people living with disability. I lead a team that advises government, influences legislation and provides direct support to hundreds of Western Australians every year.
Purpose, persistence and belief can transform every “no” into a stepping stone. I’m driven by the conviction that true inclusion begins when we refuse to accept limits—whether imposed by others or ourselves.