What do you do?
Ever since I got my first electronic communication aid at the age of 4 I’ve been passionate about empowering others who need augmentative and alternative communication (AAC) to fulfil their own communication potential. I studied for a degree in Social Policy alongside an international sporting career in boccia. Now I’ve returned to University to study for a Masters of Research in Social Policy. I’ve always believed it is easy to talk about making changes but to make change a reality we usually need to understand policy first.
Delivering on my passion around AAC I am a Patron of 1 Voice, a Trustee of Communication Matters, and a committee member of the International Communication Rights Alliance. I’m also a member of number of other national and international groups with a communication focus.
What has been your greatest achievement?
I retired from elite sport in early 2022 having successfully made my dream come true at the 2020 (2021) Tokyo Paralympics competing in Boccia. I’d dreamed of representing Great Britain since watching the Sydney Paralympics in 2000. Going out onto the field of play in the Ariake Stadium was a spine-tingling moment I will never forget. It was so worth the 17 years of playing, training and competing and the 21 years of dreaming.
What was your biggest challenge and how did you overcome it?
My biggest challenge growing up was feeling never getting heard or seen outside of my home in a good way. Primary school were good but when you are a communication aid user it is easy to be talked over, and sadly in the wider community you are often judged and not just on your physical appearance. People often see first the power chair and the communication aid and make an assumption that the person in the chair must have a learning disability. Even now I’m regularly patronised when I’m out and about, many people either talk to my assistant, ignore me or think they have to shout.
This made me so frustrated that at the age of 10 I wrote ‘my life story’ to explain how I felt being a communication aid user. This led to me being the then youngest ever presenter at the International Society of Augmentative and Alternative Communication (ISAAC) conference at the age of 12 in 2006. That conference in Germany was a pivotal event in my life. I met participants from around the world who chose to come and listen to me, who sought me out during the conference and wanted to know about me. They made me feel valued and respected for who I was.
The result was my hobby growing up was public speaking, sharing my lived experiences of being an AAC user at conferences and events. More lately this has developed into delivering workshops and training events. Despite often being anxious about speaking up in the wider world I developed the confidence first within the AAC world to know people do listen when you have the courage to speak out.
Who was your role-model growing up?
I can’t say I had one role model because I’m lucky to have had, and still have, many. My earliest role model was Caroline Baird, a Paralympic sprinter who I saw on TV at the age of 6 and who I count as a friend now 23 years later. I have 2 Australian friends, Mel and Meredith, who I met at that ISAAC conference in 2006 who were (and still are) successful working adult AAC users. They have both encouraged me in different ways across the years to grab life and always try my best. Then there is Toby who I first met at the age of 8 who uses AAC. He was then 21 and he showed me I could live independently and work if I wanted. I’d also say my Mum for her passion and her belief that I could do anything I wanted. Both my parents for their unstinting voluntary work and unconditional love and support. But, like everyone else I have had many role models from my child minder’s children who I count as my siblings to heroes in sport, the world of entertainment, through education and more. Then there have been friends who dealt with life’s hand with fortitude and humour.
We often talk about role models as being good, but I’ve also learned from who I consider the ‘not so good’ role models. I’ve been on the receiving end, and observed, poor behaviour. My belief is we can learn from nearly everyone we meet about what we want to be and how we want to act.
What do you think would help more adults with CP achieve their ambitions?
One of the challenges I believe many people with CP face when they want to live independently is the sudden cliff edge we can face of managing our own support. In my case I moved from residential boarding school and a supportive family home to university and living in halls of residence. I’d had personal assistants since I was 12, and experience of directing staff some of the time both at home and in school. We planned meticulously for the actual move but failed to consider the physical and emotional cost, the time and skill it takes to learn to manage a team of people who are there 24/7. There is so much I could say on this topic, but suffice it to say I believe as a minimum we need to train young adults in understanding their rights, safeguarding issues, how to manage budgets and how to lead a team if they are to make a successful and seamless transition into independent living. This sort of training and being able to lead the life each of us want has to be key to having a solid platform on which to build for our futures so we can achieve our ambitions.