I remember arriving at a doctor’s office for a routine check-up. I use a wheelchair and communicate using an Augmentative and Alternative Communication (AAC) (Augmentative and Alternative Communication) device. As soon as I rolled up to the front desk, the receptionist looked right past me and asked my support worker for my name. I tapped out my response on the AAC, but she continued to talk only to my support worker, asking, “Can she understand me?” – as if I weren’t right there, already responding. That moment stung – not because it was surprising, but because it was so familiar. It was yet another reminder that people with disabilities are often spoken about rather than spoken to.
Unfortunately, this isn’t a one-off experience. During a physiotherapy session, the physio assumed that because I use a wheelchair, she didn’t need to ask what movements were safe or comfortable for me. She just started manipulating my legs, despite my efforts to explain my physical limits. Similarly, a doctor once told my mum that the pain I was experiencing in my hip for two years was “all in my head.” That dismissiveness delayed the proper diagnosis – and a much-needed hip replacement.
These stories aren’t shared for sympathy. They’re shared because they represent a much larger issue: decisions in healthcare are too often made for people with disabilities instead of with them. And that disconnect can have serious consequences – not just physically, but emotionally and psychologically too.
Take assistive technology, for example. I once received a $12,000 eye-gaze AAC device that was supposed to support my communication. It now sits unopened in a box – too complex, not matched to my actual needs, and never properly trialled with me involved in the process. It’s become a very expensive paperweight. Ask around in the disability community, and you’ll hear countless similar stories of mismatched supports, wasted resources, and unmet needs.
When most people think of “accessible” healthcare, they picture ramps, wide doorways, or lowered counters. And yes, physical access is vital. But accessibility goes far deeper than architecture.
True accessibility means:
Clear, respectful communication: Are AAC users given time to respond? Are interpreters provided and respected? Is plain language used?
Flexible systems: Can longer appointments be scheduled when needed? Are support people welcomed without awkwardness?
Inclusive attitudes: Do providers speak directly to me—not just about me? Are assumptions replaced with curiosity
Because even the most state-of-the-art medical facility can feel inaccessible if the people inside treat you like a problem to be solved instead of a person to be supported.
And not all disabilities are visible. Cerebral palsy is complex and varies from person to person. Some of us need physical support; others may need a communication aid, and many need extra time – not because we’re incapable, but because we experience and interact with the world differently. Yet medical professionals often make sweeping generalisations. I’ve had doctors skip entire aspects of my care – like sexual health or mental wellbeing – because they assumed those things didn’t apply to me. But they do. People with CP deserve holistic healthcare that sees us as full human beings, not as symptoms or diagnoses.
That’s why self-advocacy becomes essential. Many of us become experts in explaining our conditions – because we must. We spend emotional energy reminding doctors to address us, not our carers. We learn to insist on being heard, to ask for accommodations, to challenge stereotypes. Self-advocacy is empowering, yes – but it shouldn’t be the baseline requirement just to receive respectful, effective care. No patient should have to fight to be seen as worthy of attention.
Inclusive healthcare isn’t about doing us a favour. It’s about recognising our humanity. People with disabilities are not problems to be fixed – we’re people with lives, dreams, feelings, and knowledge of our own bodies. And when health systems include us meaningfully, we:
Experience better physical and mental health outcomes
Avoid unnecessary complications or hospital visits
Develop stronger trust in healthcare providers
Feel respected and safe in medical settings
What’s encouraging is that many solutions don’t require enormous reforms or financial overhauls. Sometimes the most powerful change begins with small, intentional acts:
Asking, “How can I support you today?”
Pausing to let someone using an AAC device finish speaking
Using visual aids or simple language to explain a procedure
Making eye contact with the patient – not just the support worker
Creating space and time for the patient to feel in control
These may seem small, but they have a huge impact. They build connections and dismantle stigma. They send a message that we belong here – that we are valued.
Healthcare is deeply personal. It’s where we turn when we’re vulnerable and need help. For someone like me, those moments – whether supportive or dismissive – stay with you. So, as we continue national conversations about health equity, human rights, and reform, let’s make sure disability isn’t left behind.
We don’t need to be fixed – we need to be heard. We need systems that work with us, not just for us. People with CP and other disabilities are not passive recipients of care – we are experts in our own lives. What we need most is partnership: healthcare professionals who are willing to listen, to learn, and to adapt. Because when you start by listening, you lay the foundation for care that truly heals.