"I always forget you're disabled": Navigating the health system with cerebral palsy

Reviewed by

Team Kin

At 26, I’ve probably spent more time with doctors and physiotherapists than I have with friends and extended family. My diagnosis of Cerebral Palsy came when I was 2-years-old.

As a child, I spent at least one afternoon a week at a physiotherapist. Physio was fun, running around. A chance to play. However, when that support dried up after I outgrew the early intervention and school age programs it was absolutely devastating.

Everything became more clinical. Any joy I took from those sessions was gone. Physios no longer offered me groups to attend and I rarely met with other kids. Everything went quiet on their end.

This was the start of my journey towards finding doctors. Good doctors. Not doctors who would look down at me, or order me around, or act like I wasn’t doing enough.

“Ha, I always forget you’re disabled,” said one therapist. “I think it’s because you’re so articulate.”

This was when I first recognised the difference between “good” healthcare and “bad” healthcare.

I seldom attended physio in high school – they quickly became carbon copies of every other appointment I'd been to:

– Get on the bed.
– Explain your medical history.
– Explain your current pain.

Every session, I waited for them to be surprised with how tight my calves were, chastising me for not doing my stretches.

I felt judged – like I was wrong no matter what I did. I began to hate my disability. I wanted absolutely nothing to do with stretching, with orthotics, or with specialists - I avoided them for as long as possible. I was sick of the pain.

I was referred to a psychologist for my anxiety in high school. I expected sympathy, empathy, and maybe even understanding. For the most part that’s what occurred, however, over the past five years I’ve been in therapy there were always little comments that bothered me:

“Ha, I always forget you’re disabled,” said one therapist. “I think it’s because you’re so articulate.”

I agree that I’m articulate. I have always had to explain myself and why I do things. Still, there is a certain connotation with disabled people and their intelligence.

Struggling with pain and my body, I would sit there while doctors implied that disabled people don’t, or can’t, understand what is going on. It still happens often when I meet new medical staff:

Shock that I’m there by myself. Disbelief that I can recite my medical history and current symptoms very easily.

I don’t see this as something to be congratulated for, or to get a pity "good on you".
The sneaky look I’d get when I walked into a room with tedious paperwork irritated me. This is part of your job, I’d think. This is part of my life.

Doctors would tell me I was lazy with my physical and mental health. One time, printed sheets of advice were stuffed into my face, the type that’s given to every patient doing the same type of therapy.

Through many years of trying, I now have the privilege of a great support system outside of doctors, physiotherapists, and psychologists. This has definitely helped through rough periods. When I received my NDIS plan in 2019, the response was overwhelming.

The plan has allowed me access to the best physiotherapist I’ve ever had. I have a speech therapist and an occupational therapist for the first time since I was quite young, too.

I’ve made leaps and bounds in my sessions and can now talk without taking huge breaths, which has always been a huge insecurity of mine.

I have learnt so much about how to deal with doctors through a lot of trial and error. Most importantly, I have learned that I need to figure out what I want from them so I don’t feel like I’m being walked all over.

It was a frustrating path towards “good” health care. Often, I found myself upset or confused purely because of assumptions on behalf of doctors who I put trust in. But I am here now and I am happy.

My disability is constant and my feelings towards it have changed dramatically over the years. I hope everyone realises that every time you walk into that doctors office you deserve to be heard, not belittled.