Emma Livingstone, 48, is a former speech and language therapist, a mum to 3 children, life coach and the co-founder and CEO of UP – The Adult Cerebral Palsy Movement. Emma talks to us about her journey navigating through university, building a career, marriage, motherhood, and everything in between.
Early Childhood and Diagnosis
Emma was diagnosed with Cerebral Palsy at the age of two. “I met all my early milestones like sitting and talking fairly early, but when the GP did a home visit to see my Dad, he noticed I wasn’t walk in and thought it needed investigating. I was then taken to Great Ormond Street Hospital, for an MRI and I was then diagnosed with CP”. Emma has right sided spastic hemiplegia, which means that she has right sided weakness “I have a funny gait, I sometimes need to use crutches for balance, and a wheelchair for long distances. My car is automatic with a left accelerator pedal”.
Transitioning to Adulthood
Emma went to mainstream primary and secondary schools, all through her paediatric life she had regular physiotherapy, and had minimal adjustments made for her through school (such as installing handlebars along staircases). “But in terms of my accessibility things like PE were difficult. I guess in some ways, looking back now, socializing in the playground was as challenge when everyone was running around, and I was sitting on the bench and hoping people would come and talk to me”. Like many young people with CP, Emma found the transition to adulthood challenging. “There’s a lot of support when you’re a child, but as you get older, those services start to disappear,” she says. Simple tasks like finding accessible housing and navigating higher education required careful planning. “I always knew I wanted to go to university, but my parents and I had to think about what adaptations I might need when away from home,” Emma explains.
Managing CP as She Aged
As she got older, Emma noticed changes in how CP affected her body. “Fatigue became more of an issue, and I had to adjust how I managed daily life,” she says. She emphasizes the importance of listening to her body and adapting accordingly. “Aging with CP isn’t talked about enough. It’s something we need more awareness around.”
“I remember going to the GP and saying to them, and I’m falling more often, it hurts a bit more, and it doesn’t look as pretty – and they say to me ‘we can refer you to a polio clinic as it’s a bit like polio or maybe antidepressants might help? They really didn’t know how to support me. It was frustrating.”
Emma’s career also had to adapt to her evolving CP – full time work became taxing and exhausting to keep up with “I also had to change my job, I used to work with younger children which meant sitting on the floor which became harder moving to big children on higher chairs and then into a more management role. However, as I started to fall more often I started to think about giving up work. And that was a real impact because being a speech therapist was really important to me”.
Marriage and Motherhood
Emma met her husband through mutual friends, and their relationship grew from shared values and understanding. “He’s incredibly supportive, and we work as a team,” she says. “Of course, there are practical challenges, but we find ways to adapt.”
Motherhood brought new experiences and challenges. “When I became pregnant, there were so many unknowns because there’s not much research on CP and pregnancy,” Emma shares. “I had to figure a lot out on my own.” She talks about the adjustments she’s made to care for her children, from finding the right equipment to managing fatigue, which is at a whole different when you have an underlying neurological condition . “It was so important to be able to find equipment such as strollers that were light in weight, so I did not need anyone’s help to use it”
Gap in care and UP
After finding a gap in her own care and support while undergoing hip replacement surgery Emma co-founded UP – The Adult Cerebral Palsy Movement after realizing the lack of support for adults with CP. “So much of the focus is on children, but CP doesn’t go away when you turn 18. We needed a space for adults to connect, share experiences, and advocate for better services. People think CP is non progressive and doesn’t change, they fail to factor into consideration the different milestones you and your body reaches in adulthood and the support you need around it.”
As co-founder and CEO of UP, Emma continues to campaign, lobby and speak both nationally and internationally for better awareness and support for adults with CP. “We need more understanding, more research, and more resources. My goal is to make sure that no adult with CP feels invisible.”
Looking Ahead
Emma remains passionate about raising awareness and advocating for adults with CP. “People assume so much about what I can’t do. I want to challenge those assumptions and show that disability doesn’t define a person’s potential.”
Advice to my younger self: “Believe in yourself, it will be okay. it is okay to be different and vulnerable.”