Meet Richard, the Co-Chair of Ataxia UK, who will in his blog tell you a bit about himself.
Hey Ataxia UK family and friends, some of you know me already but I would like to introduce myself to those who do not! I am Richard, in my mid-40s and live in Oxfordshire with my wife and children. When I was 15 years old, I was diagnosed with Friedreich’s Ataxia and felt as if everything was over. I worked hard to attend university, earn my degree, and advance in my career. Throughout my career, I have gained a great deal of insight into equality and diversity.
My focus in 2011 became giving back to Ataxia UK, volunteering, and writing, as I felt worn out from all the work I was doing. It was only then that I realised what a treadmill I was on, and how truly rewarding volunteering really is.
Having retired in 2012, I became a Trustee of Ataxia UK. I began using my knowledge and experience to improve the lives of others in my community. In 2018, I became an Ataxia UK Ambassador, and in 2019, I became Co-Chair of Ataxia UK. I was awarded an MBE award for my service to disabled people and to my community, becoming the first person with Friedreich’s Ataxia to receive this
Over the years, I have been involved in all aspects of the Birmingham branch of Ataxia UK, as well as its events. The workshop I run at the annual conference gives people newly diagnosed with ataxia an understanding of what ataxia is and how to cope with it.
In 2020, Kyle Bryant spoke at the Ataxia UK annual conference and said: “By making yourself small, you can make all the other people around you big.” Those words stick with me.
The fact that I have FA (Friedreich’s Ataxia) is not going to stop me from living my best life. I have accepted the fact that, though I cannot win the fight, I can win the daily battles. My mind does not need to dwell on it constantly. I am strong, brave, and inspirational…and believe me, so are you!
Here is a checklist for my newly diagnosed friends, family, and anyone else who needs it!
- Educate Yourself: Understand disability and your rights.
- It is not your fault. Accept it, lose the anger, and move on.
- Be Assertive: Stand up for yourself.
- Believe in yourself and others will.
- Get yourself out there.
Of course, this is hard-won wisdom – I did precisely none of those things myself at 15 but I hope you will!
For those of you interested in learning more about my story, here is my MBE interview!
- Tell us a bit about yourself and your interests.
I have been involved with Ataxia UK in one capacity or another since I took medical retirement from a successful career in local government. I am an ambassador for Ataxia UK, after having served as a trustee for the charity for eight years. I was the chair of the trustees for the last two years during the covid pandemic. I helped establish the Birmingham branch of Ataxia UK and have been involved in running all aspects of the charity and its events. I run the workshop at the annual conference for people newly diagnosed with ataxia to help educate them about what ataxia is and how it can affect you and what you can do to help yourself. Alongside volunteering, my other passion is writing, and I publish a blog at www.worldaccordingtome.blog and am currently writing an autobiography.
- Tell us about your journey to being diagnosed with FA.
I was diagnosed with Friedreich’s Ataxia when I was 15 years old. In the lead up to being diagnosed, I remember feeling quite tired, and it being a painful tiredness, with pain in my joints and muscles. I remember turning my ankle and being unsteady on my feet sometimes. At first these were dismissed as growing pains, but eventually the GP referred me to neurology at the John Radcliffe Hospital in Oxford. This was in the days before the genetic mutation causing FA had been identified (by a project sponsored by Ataxia UK), so I had two days of painful tests involving direct electrical stimulation of nerves before my parents were informed that my diagnosis was FA. Similarly, it was in the days before the internet so my parents had to look up FA in a textbook or similar and discovered the bleak description. It was very difficult for me, for my parents and my siblings. I was in denial when I was diagnosed, and set my focus on achieving all the things I thought I should achieve: going to university, getting a job, earning my own money, learning to drive etc. In 2011 I began feeling tired with everything I was doing: commuting, working full time and bringing up my two young children with my wife, and turned my focus onto giving back to Ataxia UK, my other volunteering roles, and my writing. It was only then I could see what a treadmill I was on, and appreciate how truly fulfilling volunteering is.
- What is something about living with FA that you feel is underappreciated and is important for our researchers and others to know?
I have learnt that a diagnosis such as FA does not only affect the individual with ataxia themselves, but also their parents and siblings and other family members too. They also need help to process the diagnosis and the associated thoughts and emotions. It is not right to give parents a difficult diagnosis and expect them to pass it on to their children without any support. I also had not appreciated how important pushing yourself physically is, and I wish I had learned sooner that keeping active and doing stuff is so important. There is an important physical side of not being active that is very easy to overlook, and it comes back to how disability is generally perceived by
society – that disabled people cannot do fitness and health and that fitness is seen as being a possession of the able bodied. It is about empowering disabled people. I have worked hard with Ataxia UK to recognise and develop volunteers with ataxia throughout the organisation.
- What, in your opinion, is the best thing the FA Alliance at Oxford can do to help people with FA?
This is a difficult question to answer! It is brilliant that we have researchers and medical professionals striving to find a cure and develop treatments and therapies to help us. For me, the biggest thing that I would change if I could is the lack of counselling offered to people when they are diagnosed. Receiving a diagnosis such as FA, and the implications you are told it will have on your life can take a long time to come back from, and it did set me back years. There is a lack of understanding of disability in general, particularly from many medical professionals and we need to challenge the way disability is perceived by people. Finding a cure is good, but it is not enough. Greater focus needs to be on keeping disabled people healthy. I also advocate for a move away from the term “rare disease” in favour of “rare condition” to help remove some of the negative connotations of having a disease or disability. We should use better terminology and aim for an inclusive approach to help people live with their disability; tell people about exercise, which gyms they can go to, speech therapy, physiotherapy, what mobility aids can help restore independence, what living aids are available to them to have in their homes, providing respite care and financial support for carers. We should take a more positive approach to disabled people and welcome disability in our lives.