When Covid struck I had time to reflect on what I wanted from the next stage of my life. I was finishing university and focusing full-time on boccia, aiming for Paralympic selection for Tokyo 2020. Lockdown was a key time to consider how to make my dreams for the rest of my life start to happen. During 2020 I started to blog more about being an Augmentative and Alternative Communication AAC user. It was great to receive really good feedback, and even get requests on things people wanted to hear about. However, this came with the growing realization that the website I’d started 12 years earlier needed a complete overhaul.
The original aim for my website, sharing my lived experiences about using AAC, remains. I have now added content that encompasses what I’ve learned along the way. Throughout the website my focus is living with cerebral palsy, dysarthria and a hearing impairment, but this journey has led me to create 3 new spotlight areas.
This section focuses firstly on my experiences and strategies relating to being an augmentative and alternative communication (AAC) user since the age of 4. Secondly, the impact of my hearing impairment on both my communication and day to day life. Then the crucial importance of having good communication partners in all areas of life, both when you use AAC and are deaf. All three topics are interlinked and have direct consequences for my well-being, learning and leading my own team of personal assistants.
Being fit for purpose as an individual is important for everyone. I’ve broken this into 2 sections, again drawing on my own experiences. First, physical well-being where I share about living with CP, the importance of being active, managing pain, nutrition, energy and much more. Secondly, from a mental and emotional well-being perspective my journey has been full of highs and lows. Here I draw here on the positive strategies that help me daily to remain resilient and ready to take on the challenge of life. These strategies include the importance of dreaming as well as mindfulness and relaxation techniques. I also focus on the value of talking with others to make sense of the world around us.
Having the skills for life is a huge area. I’ve broken this into stories relating to lifelong learning. leadership and living independently. This begins with my experiences of attending mainstream and special schools, and then moving to university. I’ve lived independently now for over 8 years, This means I’ve had to develop leadership skills to manage my team on a daily basis. I want to share practical tips and some of the challenges of managing this. Finally, and in hindsight, what I really should have known when I started out.
I graduated from the University of York, with first class honors, in Social Policy in January 2021. Overall l had a really enjoyable experience but it was not without some stress. Full time study created considerable fatigue because by my CP. This led me to extending the course over nearly 8 years to ensure I had time to do justice to the work. What I loved was the opportunity to understand and unpick policy. Then to undertake research, and to ground my thoughts in evidence. The result is this has made me a reflective and critical thinker about life in general.
Public speaker and trainer
I’ve been presenting at conferences and workshops using augmentative and alternative communication AAC since I was 12, both in the UK and internationally. My first presentation was a little scary but I loved that people had chosen to come and listen to me. They then stayed to ask questions and even sought me out across the conference to find out more about me. This positive experience has meant I have become a confident public speaker and AAC workshop leader. To date I’ve written and delivered dozens of sessions on diverse topics. This has ranged from learning styles, developing language and literacy, sport, leadership and independent living.
More recently I’ve also developed and delivered training for my own team and independent organizations specifically around the needs of AAC users.
Augmentative and alternative communication AAC
I use augmentative and alternative communication (AAC) because only a few people understand my speech well. As a multi-modal communicator I use a high tech communication aid every day. This is supplemented by eye pointing, facial expression, finger/hand gestures, body language and spelling out words on a letter card.
I’ve played boccia since I was 10. In early 2020 I was invited onto the Boccia UK World Class programme as a BC3 athlete. This classification means I use an assistive device (ramp) and have a sports assistant on court. You can find out more about my boccia journey in the physical well-being section and on my blog.
Why I have a website and blog
My website was in direct response to the many queries I began to get after starting to present papers at conferences. It was too challenging when boarding away at school to answer individual emails. The resulting initial website was a way to share experiences relating to augmentative and alternative communication questions and topics.
Over time I added pages and the website took on a life of its own, until we got to what we have today. I continue to be overwhelmed and humbled that people want to share my journey. I hope you enjoy reading and find the content both useful and thought provoking.
Passion for potential
I believe everyone needs the opportunity to explore what they can become, not what they are today. Then when they realize what that future might be, to develop the tools and resources needed to fulfil that ambition or potential. You could say I have a passion for potential. Because, I’m living my own dream, and learning to fly in life.
In my humble opinion everyone, whatever their ability, should have things they are passionate about. Each of us has the potential to be many things, and a ‘disability’ label should not define us. Just because things may be challenging does not mean we cannot fulfil our own potential and achieve to the best of our ability.
So why passion and potential?
Passion is an emotion, it’s a strong feeling, that enthusiasm or a burning desire to achieve a goal. I have been lucky to date realizing my own dreams. I’ve had a team of people behind me throughout my life, my own personal cheerleaders working alongside me to help me achieve my goals. I do believe nothing is impossible, we just need to find a way, which might not always be the ‘usual route’. This positive support has given me a passion to help others if I can by sharing my own journey.
Potential is the opportunity to develop, to become your future best self. When we think about a child we want to see them thrive in the here and now. But we also want to give them the right building blocks, the skills they will need for what they will become in the future. This is achieved in society through education, gaining new experiences and developing life skills. And, it should be no different for anyone who uses a communication aid. We need to ensure everyone is in a position to achieve the best they can be in their future life.
The future: combining passion, potential and purpose
At 18 I knew I needed a solid foundation to deliver on my dreams. You can read more about this in the mental well-being section. What was important was I knew I wanted to change things for people who use AAC. Dreams will never become anything unless you have an action plan to make them a reality. My choice to study social policy has been enlightening. I chose options that related to children and young people along with some disability modules. The result is that my head is busting with ideas of how to make my passion a reality.
Please join me as I share here these ideas and thoughts.