In the lead-up to World CP Day (6 October) I was invited to speak as part of Cerebral Palay Alliance’s 80 year celebration event, Stories That Made Us – 80 Years of Advocacy & Action.

My talk centred around reflections about growing up as a member generation X and the importance of discovering community connection and disability pride.

In some ways, I think people with CP my age and and older have fallen through the gaps. Inclusion wasn’t talked about when we were growing up, and the programs and research that exists today tends to exclude people who are 30+.

I was fortunate to speak alongside some truly exceptional people, and was very grateful to CPA for the opportunity. Thank you to John Carey, my friend and fellow researcher on the CycLink Study, who gave me some technical notes on this talk, reproduced below.

I was born prematurely with spastic diplegia cerebral palsy (CP), which mainly affects my lower limbs and the way I walk. Growing up in the ‘70s and ‘80s, I wasn’t encouraged to talk about my disability all that much. It didn’t really get raised outside of home life and clinical care.

I had physiotherapy and orthopaedic surgeries throughout my childhood and early adolescence, which made a massive difference to my appearance and ability to walk. Botox injections for tight muscles wasn’t a treatment option for CP in those days and is not something I’ve ever tried.

When I was 15, I was old enough to be asked to consent to my next operation. And to my doctor’s surprise, I said no. I didn’t want any more surgeries or time away from friends. I vividly remember thinking, I was happy with the way I was.

I got teased mercilessly in high school, as I’m sure many of us in schools still do. I remember teachers in the late ‘80s telling me to ‘suck it up’ when I told them I’d been bullied, facing the double whammy of having CP and being called out for being gay.

But the tables were turned on my high school tormentors. I met an amazing man soon after high school, and I’m still with him to this day. We got married six years ago when it became legal, and my husband is the most incredibly supportive person I know.

After I left school and the paediatric healthcare system, I realised it was desert as far as physical medicine and CP was concerned. There were few specialised services for adults, and no guidebook on what to do or expect

Among a variety of l symptoms, I put up with nagging foot pain all through my 20s until one day I couldn’t take any weight on it at all. It took six months of podiatry to sort it out, and now I see a podiatrist every four weeks to keep it in check. I often wish someone had sat me down in my 20s and explained what kinds of services and supports might help.

Now that I’m older, I’ve gotten involved in health advocacy. I work on steering groups and projects creating resources for adults with CP — something that’s sorely lacking, much like research into CP and ageing. There’s never been a clear path or good information about this. That desperately needs to change.

In the last five years, with support from Cerebral Palsy Alliance, I’ve engaged with the NDIS, and for the first time in decades I’m back in the rhythm of weekly physiotherapy.

Dealing with the NDIS is never easy, but it’s absolutely transformed my life. In many ways, I’m in the best health I’ve ever been because I can access a level of care I just couldn’t afford otherwise, even though I work full time.

It has also given me the chance to try new things – like learning to ride a modified eTrike as a adult .

Peer support is also incredibly important. It might surprise you to hear that I’d never met another adult with CP until the last decade.

Through an interstate pilot program for adults with CP in Victoria (because none existed where I lived) I was able to connect with my peers for the first time.

Having people to talk to and share strategies with has been lifechanging. I’m now part of a strong network of friends with CP. It’s something I wish I’d had much earlier.

I’ve also discovered the Disability Pride movement, something that I’m very passionate about. I recently joined Disability Pride Sydney who have led the establishment of the movement here in Australia over the last few years.

Today I also work for Inner West Council, who in 2022, became government organisation in Australia to raise the disability pride flag, in collaboration with Disability Pride Sydney.

I’m working on the development of this year’s Inclusion Festival, a free annual event held in December by Inner West Council showcasing disability culture and pride in the Inner West. I encourage everyone in NSW to come along

After a lifetime of being encouraged not to talk about my disability, disability pride and peer support is the medicine I need.

That’s why I think events like today are so important. They give us space to connect, share stories, and raise awarenessabout things that need to change. Not only for the nextgeneration, but for all of us who are already here.