This week’s blog has been written by Toyah Wordsworth, an active member of our peer mentoring programme. Toyah has Friedreich’s ataxia, a rare neurodegenerative condition that affects coordination and balance, amongst other symptoms. In addition to her role as Chair at the Ataxia UK Sheffield and District branch, Toyah has designed and produced a board game to raise awareness about the difficulties faced by people with disabilities on a day-to-day basis. 

My life so far has been a multitude of experiences. There have been some amazing times but also much pain and trauma. Importantly, I can now say that I look forward to my future, and through my adversity have learnt to grasp life fully. I can now appreciate how far I have come and how far I still have to go.

My memories of early childhood focus on being a healthy happy little girl. It was from the age of 8 that my life began to change forever. At this age my walking and balance began to deteriorate. My family noticed that I wasn’t walking straight and I kept falling over and banging into doors. I was constantly covered in bruises. My mum took me to the doctor, believing there was something wrong with my hearing that was affecting my balance. It took 2 years for the doctor to finally take my mum seriously (believing her to be an overprotective mother), and send me for a brain scan at the hospital. The scan was clear, but finally at the age of 12, due to my Mum’s persistence I was sent to Sheffield Hallamshire for an intensive range of tests.

At the age of 13 I was diagnosed with Friedreich’s ataxia, a rare genetic disease that affects balance coordination and speech. My symptoms were becoming more pronounced to the point of me needing one to one support to help me walk, and at the same time I was very confused and didn’t fully understand my diagnosis. My friends and family were incredibly supportive and kept me going through my very dark periods. As a teenager I felt despair with no hope and a very grim vision of my future. I went to the lowest place possible, with no fight left in me. But fight I did. I realised this disease wasn’t going to beat me, that I was still going to live my life and turn my pain and suffering in to something positive.

By the age of 19 I was permanently using a wheelchair. This is when I recognised the barriers I had to face being disabled in everyday life. These barriers made me realise that it is in fact society that creates disability through perception and ignorance.

In 2003 after many months of rejection whilst seeking employment I found myself with two jobs and voluntary work with Scope, where I mentored disabled people about independent living. At this stage I required a personal assistant for my own care and to support me with my jobs. I was struggling to physically meet my own needs as my condition became more aggressive. In one job I worked for a charity called ‘My ways’ where I started doing disability training workshops for corporations and government organisations educating employers and their staff. This work proved to be invaluable and productive, and promoted my own self esteem. I was also studying for teaching certificates, and a post-graduate certificate in disability studies. Eventually this led me to start my own enterprise ‘Equal Equality’ where I delivered this training for large companies. At this time I started to ponder that this type of training was necessary in schools, to help children to understand the obstacles faced by disabled people. I knew children would not be able to concentrate with me speaking to them for an hour, so the idea of a board game formed in my mind – one which I could take into the education system to educate inspire and entertain.

Through my personal experience I created a fun interactive game, which my uncle helped me to create. The game became an instant success in my workshops and as time went on I kept changing and improving it. In 2008, through the Princess Trust Award, I had my first copy printed professionally. This was a very exciting empowering time for me, and I was lucky to stumble across Dave Lupton, a very talented artist who I commissioned to do the artwork for my game. My game became a monumental success with the children and with adults.

In 2009 my life again took another turn through the charity Ataxia UK. I won a holiday of a lifetime from the Jerry Farr Fund, which took me to India, Thailand, Australia, and New Zealand. I was determined that my disorder wasn’t going to stop me having this life changing experience. I challenged myself against all of societies obstacles and went travelling, proving to myself that all barriers can be overcome. After this life changing experience I continued with training and workshops on a voluntary basis still working with my board game.

I came back from my travels with a new found confidence and determination. I pushed forward with my dream of creating a board game to promote the challenges faced by disabled people. I managed to attain funding from ‘Unlimited Awards’ that allowed me to hire ‘Focus games’ – a company that specialises in developing board games for people in the health and social care sector. They have produced my game, and are in the process of taking orders. The team at Focus Games used their experience to refine the game, and I’m delighted that it is now available for any individual or organisation to buy from their online store.

My vision has always been, and always will be, to educate people. I wish to take my game as far and wide as possible, promoting it in the community targeting disabled charities and organisations, along with their trainers. Talking and discussion stimulated by the questions in the game is what helps players to learn. Barriers are often overlooked simply because people don’t realise they exist. The Removing Barriers Game helps people think about the barriers that exist in their communities.

The Removing Barriers Game now has its own dedicated website where you can find out much more about the game and how it works. You can find this at www.removingbarriersgame.co.uk.

My game gave me my passion back for life and I fully believe in it. It has taken a long time to come to terms with my disorder and to feel a part of a society that has marginalised me, mainly from lack of understanding. I aim to spread this awareness and my dream is for as many people as possible to engage with my game and take the teachings of a fun interactive experience into their life so they can help remove disabilities and bring ‘Equal Equality’.