Nothing About Us Without Us
From the sporting arena to her role as RIAC’s Ambassador, Carol Cooke AM PLY has seen how self-advocacy is essential to empowering people with a disability to defend their rights and be included on their own terms. National Self Advocacy Day is a chance to celebrate the courage it often takes to self-advocate and to support people with disability in being heard.
Why self-advocacy matters more than ever
I have spent a lot of early mornings on a trike, pushing into the wind and wondering if my legs would hold up for another kilometre. You know where the finish line is, but sometimes the hills and headwinds make you question if you will get there. Living with multiple sclerosis has often felt like that. The diagnosis more than 27 years ago was life-changing, but it also gave me a choice. I could sit back and let it define me, or I could speak up and keep moving forward.
In cycling I learned quickly that nothing comes without self-advocacy. Access to training venues, fair competition, being recognised for what I could do rather than what people assumed I could not. None of that just landed in my lap. I had to ask. Sometimes I had to fight. And sometimes I had to laugh at the sheer absurdity of it all.
That lesson has never left me. Self-advocacy is not an extra, it is a survival skill. It is how people with disability get the support, respect, and opportunities they deserve. And it is why today, National Self Advocacy Day, matters so much.
Self-advocacy is about finding your voice, even when you are tired, even when you have been ignored before, and using it. It is about saying, “this is my life, and I know what works for me.” It is also about standing together. One voice can be dismissed. A chorus of voices is much harder to ignore.
Too often, decisions about disability are made without the input of people with disability. Services, policies, programs, all rolled out with the best intentions, but without the lived experience that makes them effective. That is where the saying “nothing about us, without us” comes from. It is not a slogan, it is a reality check for anyone in power.
At RIAC I see every day how powerful self-advocacy can be. It changes systems. It changes services. It changes lives. Whether it is someone speaking up to keep their housing secure, to make sure their child has the right supports at school, or to challenge discrimination in the workplace, those moments of courage add up to real change.
Here is the truth. Self-advocacy is not always easy. It can be exhausting. It can be confronting. It can feel like shouting into the wind. But every time someone speaks up, they chip away at those barriers. They make it easier for the next person. And that is how movements are built.
So today let us celebrate self-advocates everywhere. Let us listen to them. Let us make room for them at the table, not as a token, but as equals. If you are a person with a disability, I encourage you to keep going. Your voice matters, even when it feels small. And if you are an ally, whether you are a friend, a family member, a service provider, or a policymaker, then your role is simple. Amplify those voices, do not speak over them.
Change does not happen overnight. And it does not happen alone. But it does happen, step by step, word by word, voice by voice.
On this National Self Advocacy Day, I want to say thank you. Thank you to the people who paved the way by demanding better. Thank you to those still pushing, still questioning, still refusing to be silent. You are the reason the world gets fairer, stronger, and more inclusive, not just for people with disability, but for everyone.