In conversation with Olivia, a 14-year-old with cerebral palsy (CP), and her mum Beth. Born prematurely alongside her twin sister Hetty, Olivia was diagnosed with cerebral palsy at six months old. Over the years, Olivia has learned to advocate for herself and manage the changes that come with the condition.
A Poem by Olivia Lewis
Dear me,
You can be something other
You can be the anomaly
In a room full of similar
Walk differently
You can learn to speak up
You can whisper quietly
In a world full of comfortable silence
Speak truly
You can fight through the lies
All the things they tell you to be
In a life full of choices to make
Choose to be free
You will learn who you are
Apart from what they ask of you
Pave your own way to happiness
Do so proudly
Early Years
Beth reflects on Olivia’s early years, describing her as a “fiercely independent” child. “She’s always been like that, even when she was tiny,” Beth says. “It’s been a privilege to watch her develop her own thoughts and opinions.” Over the years, Olivia has proven herself to be someone who thinks deeply about her experiences and advocates for herself. “She reads a lot about being an advocate for herself and others,” Beth says. “I’m really proud of her for that, and it’s exciting to watch her grow into that role as a teenager.”
A Love for Writing
As Olivia entered her teenage years, she discovered a passion for writing. “I’ve always loved writing,” Olivia says. “I love writing poetry. So that’s one of the main things I write. It really helps me to just, like, express my thoughts and my feelings.” English became her favourite subject, and she now wishes to pursue a career in English Literature and Creative Writing. “I want to write stories – stories that might help others understand what it’s like to live with a disability.”
Writing has become a way for Olivia to explore her thoughts and communicate her experiences. “I really want to look into more like advocating and activism for the disabled community. I think it’s something that I’m really passionate about and that I want to like, carry on doing throughout my life.”
School Life and Accessibility
Primary school was a smoother sail for Olivia. “In primary school, it was a lot easier, you were in the same class all the time, and everyone knew each other and it was a really school small building and. So I didn’t have to walk that far”. Olivia recalls doing a presentation alongside her sister Hetty to her classmates explaining their CP.
Olivia’s transition from primary to secondary school was marked by new challenges. “The school is bigger, and there’s more to manage,” Olivia says. “I have to move between classrooms, and sometimes that’s difficult.” She relies on her classmates and teachers for help with things like carrying books and navigating between lessons.
“Some days it’s exhausting,” Olivia admits. She’s also become more comfortable explaining her condition to teachers and classmates. “I’ve learnt to ask for help if I’ve needed, if I need it, or I’ve had to learn. To explain my CP to teachers and other people.”
Olivia explains how tricky it is to communicate when her CP is different each day “It is still hard to express how I’m feeling, especially because CP is such a dynamic disability. It’s different for everyone and so there are some days where I’ll need certain things and other days that I won’t and it’s kind of hard to explain the nuances of that.” “There are days when I need my wheelchair and there are days I don’t. Sometimes if I tell people I have CP their response is normally ‘What? No you don’t’ – and that infuriates me”
Navigating the Grey Areas of Cerebral Palsy
Beth spoke about the challenges of navigating a system that doesn’t always provide clear answers or consistent support. “You feel like you’re falling between the cracks,” she says. “The twins’ needs were mild enough that they didn’t qualify for certain services, but at the same time, they weren’t fully integrated into the mainstream world either. We had to educate ourselves.” Beth credits the professionals who helped them along the way, including a physiotherapist they worked with early on who provided crucial guidance. “We’ve gotten by because of the amazing people we’ve met – those who fight for what’s needed,” she shares.
Despite these challenges, Beth acknowledges that she feels fortunate compared to many families. “We’ve had our struggles, but I know some families face even greater difficulties,” she says. “We’re privileged in a lot of ways, but even still, the system is broken.”
Becoming Her Own Advocate
Over time, Olivia has learned to speak up for herself. “I’ve had to tell teachers and classmates what I need. At first, it was awkward, but now I just do it. If I need something, I ask for it.” “I think that’s a privilege that I have because I can communicate and I’m confident at talking to adults, but I understand that not everyone is good at that, and I think there is a lot to be said about the support people may need to advocate for themselves”.
Her advice to others facing similar challenges is simple: “Don’t be afraid to ask for help. It’s okay to need support. Just speak up.”
Looking Ahead
As Olivia continues to pursue her academic interests, she is focused on her future. “I want to keep writing and see where it takes me,” she says. “I want people to see that having a disability doesn’t mean you can’t achieve your goals. It just means you have to approach things in a different way.”