CP Network meets Matt Stabb

Lucy_Scope

Lucy had the pleasure of interviewing CP network member Matt Stabb. He has written a book about living with Cerebral Palsy.

Lucy: Hi Matt, thank you for speaking with us about your new book, Keep on Keeping on: Cerebral Palsy. It’s about your life living with Cerebral Palsy. As someone with CP myself, it was refreshing to hear such a real and honest experience. We’re a diverse bunch, but we have so much in common. 

Matt: There really are so many similarities—it’s unbelievable. Even though we’ve grown up in different times and had different experiences, there’s always common ground. So many people have told me, “Matt, your story is so similar to mine.” I just wanted to get my story out there. I’ve always had a lot to say, as you can probably tell! I’m glad you picked up on those shared experiences we all go through as people with Cerebral Palsy. 

Lucy: For those in the online community who don’t know you, would you like to introduce yourself? 

Matt: Sure! I’m Matt. People would describe me as outgoing and sociable. I live life to the full, just like anyone else. I try not to let barriers stop me—though, as you can imagine, it’s not always easy. I live independently, I have a job, I’m married, and I’m a grandad. As I’ve gotten older, I’ve become more aware of what it means to live with CP. I’m covered in tattoos, I love music and football, and I’m passionate about politics—very left-wing. I care deeply about people and can’t stand injustice, which, as you can imagine, is tough right now. I’m a person with CP, but that’s just one part of who I am. As I’ve grown more confident, I’ve become more passionate about making sure our community has a voice and is treated fairly. 

Lucy: What inspired you to write the book?  

Matt: I’d always thought about it. One day after work, I met up with my best friend and she said, “You should write a book—you’ve got a lot to say, you’ve achieved a lot, and you’ve been through a lot.” That’s where it started. But with the speed I type, it would’ve taken forever! So Mary helped me write it, and it took about a year and a half. 

 

Lucy: So, what’s the book about? 

Matt: It’s a short autobiography about my life—growing up in the ’70s, ’80s, and ’90s, when disability was often pushed aside. Things are still tough now, but we’ve come a long way. I wanted to give people a sense of what it was like growing up with CP. I didn’t want it to be a pity party—I wanted to show young disabled people that with the right support, you can achieve anything and live life to the full. 

 

Lucy: You cover a lot in the book—so many aspects of being disabled and how barriers affect you throughout life. Early on, you talk about school and how teachers didn’t have high expectations of you. How did that impact you as a child and later as an adult? 

Matt: It’s strange—you don’t really think about it until later in life. Going to a special school had a big impact. Some things that happened there still trigger me. In a weird way, the low expectations actually motivated me. Everything I’ve achieved feels like sticking two fingers up at them. There were things that happened that you just couldn’t get away with today. I cried a lot. One teacher even messaged me years later to apologise—he thought he was doing the right thing. But honestly, I think I struggled more after I left school..

College was a turning point. That’s where I really started to become who I am. Being away from my parents helped me grow, and I see that experience in a positive light. 

 

Lucy: One of the main themes in the book is self-advocacy. You talk about carers overstepping boundaries, even stopping you from leaving your home. What have you learned about advocating for yourself? 

Matt: I used to be a yes person. But as I’ve gotten older, I’ve realised I have to speak up. Even with amazing family and friends, having carers in your home makes you vulnerable. I don’t like confrontation—they’re there to help—but I’ve learned that if I don’t stand up for myself, I get walked over. Self-advocacy is a continuous learning process, and that’s a good thing. Disabled people get angry—we’re the most marginalised group in the country. But it’s about knowing when to get angry and when to step back, look at the bigger picture, and ask, “How can we make this better?” Sometimes it’s not about big changes—it’s the small improvements that add up. 

I love what Scope is doing. Richard and the team are doing a brilliant job putting CP back on the agenda. 

What I wanted to get across in the book is that CP doesn’t define me. Writing it was cathartic and emotional. 

 

Lucy: You also talk about division within the disability community. What do you think we need to do to be more united? 

Matt: We need to recognise that we all face barriers in different ways. It’s about education and understanding that we all want the same thing: not to be oppressed. 

 

Lucy: In the book, you talk about employment and the ableist attitudes you’ve faced. At Scope, we’re focused on closing the disability employment gap and transforming attitudes. You mention being accused of being drunk at work. How did you navigate that, and how did it affect you? 

Matt: I’ve worked in two user-led organisations, so it was easier for people there to understand. I’ve been lucky to have a strong support network. But Access to Work is the best-kept secret—and one of the biggest barriers. The hoops you have to jump through are ridiculous. I’m really worried that with the cuts to PIP, Access to Work might be next. 

 

Lucy: Can you talk about your experience during COVID? That part of the book was really insightful. 

Matt: When the “Do Not Resuscitate” rhetoric started, I became more aware of what was happening in the disability community. What right do they have to decide that? It felt like we were going backwards. 

A lot of disabled people I spoke to were scared to go into hospital. One of the biggest issues for me was the word “vulnerable.” I’m not vulnerable—I’m an individual. That word is used too often in a pitying or negative way. 

 

Lucy: Final question—what’s the main message you want people to take away from the book? 

Matt: The main message is: yes, I have a disability, and I’m proud of it. I’m proud to have CP—it’s made me who I am. Disability isn’t a dirty word. I want to tell my story and show that you can achieve your goals. It doesn’t have to be something huge like the media portrays. Not everyone’s going to be a Paralympian (no disrespect to them!), but I’m just me—just Matt. 

 

Thank you, Matt, for speaking with us. You can buy Matt’s book ‘Keep on Keeping on: Cerebral Palsy’ on Amazon 

SaraC_Scope

Brilliant interview @Lucy_Scope .