Name: Richard Brown, MBE
Where do you call home? I live in a sleepy little Oxfordshire village in the UK. My Wife and I grew up nearby but lived and worked in Oxford and Birmingham before we moved back in 2013.
Education (degree(s): How will FA add to your future [career]?: I have a BA Honors Degree in Modern History from Oxford Brookes University, not too bad for someone who left school at 16 with hardly any qualifications. I studied at home with the Open University to earn enough credit to go to a traditional university. I studied for a semester at the University of Rhode Island as part of my course and stayed after graduating to be an elected student representative. A full-time wheelchair user when I went to university, I think FA shaped the support I received, but it had more of an impact on my career path. I began a career in Local Government, originally focusing on disability, but later moving into other equality issues. It wasn’t until my last job, I moved into work that was not related to disability.
What is your relationship status? Who do you live with? I have been married for 19 years to Helen, but we were together 7 years before that. We have two kids, Bella (12) and Billy (7). We all live together.
What's typical day for you? I feel busier in retirement than I was when I was working full-time. I do lots of volunteering and help run several charities. There is always work to do for those. Sometimes I feel like I am just filling in the empty time until my family get back from work or school! My daily routine changed with the pandemic. I used to volunteer in a school a couple of days a week and travel regularly to London. Now, I don’t visit the school at all and have only been to London once since March 2020. I have been going to virtual meetings all around the world instead.
How long have you known you are living with FA? I was diagnosed thirty years ago aged 15. I was struggling with extreme tiredness at school and went for tests. We had no family history of disability, so it was quite a shock. My family and I desperately needed counseling – we weren’t offered any.
Are there others in your family with FA? I’m the oldest of three brothers, one of my brothers also has Friedreich’s Ataxia, the other does not. Friedreich’s Ataxia has had such a big impact on all our lives. It is important to understand that FA effects entire families.
Describe your transition from walking to wheelchair/walker: It was pretty difficult. I describe the whole experience in a blog post. I use it as an example that acceptance follows anger, I also realized that I was carrying a lot of negative stereotypes that made it even harder for me. Over the years my ability to write or type has slowed considerably. When I retired, I took some Creative Writing courses with the Open University. This time they assessed me and provided me with some voice recognition software. I found this quite helpful for large amounts of writing, but recently as my handwriting and typing skills have diminished, I have come to find it even more useful.I discovered audiobooks in lockdown. With my eyesight making it harder to focus on following lines of print, I found I was reading less. Listening to audiobooks is not cheating, they preserve all the magic of written books and for a bonus, level of intimacy, are often recorded by the author.
What do you like to do to stay active and what type of exercises work for you to stay strong? I use a Thera Trainer for about 90 minutes a day. It focuses on cycling for your legs and arms. You strap your feet in and the motor takes them round, you set the resistance for your arms and push yourself. I know physical activity really helps keep you well, looking after your mental health is just as important. I enjoy the escapism of video games and I think that using the controls helps preserve my (worsening) fine motor skills.
Do you have any hobbies or special interests? I love writing and have an award-winning blog World According to Me where I share my observations on life and some short stories. Most of the experiences and equipment mentioned are covered in more detail there.
What is a good trick to make daily life easier? My solution to me having gradually less ‘range’ outdoors was to get a trike attachment that turns my wheelchair into an electric powered vehicle. I use it to get around the village and it comes on holiday with us every year.
When FA gets you down, what do you think/do to feel better? I think it’s okay to be down. It’s Important to feel your sadness and anger, recognize them, but don’t carry them around with you. I have learned that to get through the worst times you have to go as far down as you can. It is only then you are ready come back up. Trying to be grateful for all the wonderful things in my life helps me feel more positive and optimistic during those sad times.
What is one way living with FA has POSITIVELY affected your life? Two thirds of my life being with FA so my relationship with my disability is a complex one, I have accepted it as part of who I am. It has made me the person I am today. I find the super-power metaphor works well here. On good days, my FA just cannot compete and I am unstoppable. On bad days, it becomes my personal nemesis, a shadowy supervillain who has gleefully taken everything from me and knows it; laughing hysterically from just beyond my reach.
What is a favorite motivational quote of yours? I have made my favourite quote. “Disability is other people”. It is a link to philosopher René Descartes who said “L’inferne, c’est les autres” or ‘Hell is other people’. It refers to the ‘Social Model of Disability’. That disability does not belong to any one of us, but is created by perceptions of shame, sickness and helpless by others and the inaccessible world we live in. With the right support, we can manage our conditions. The flight of stairs doesn’t disable me, the decision to build them did. Seeing disability like this is very powerful, it sets you free.
What is piece of advice that someone with FA has given you that encourages and inspires you? I wish I had been there to encourage and inspire myself at 15. I deliberately avoided meeting anyone else with Ataxia until I retired in 2012. By then, I was 36. So, I began in the role of inspirer and encourager myself. I met Kyle Bryant, a speaker at the AtaxiaUK annual conference in 2020, reflecting on his fundraising work: “By making yourself small, can make all the other people around you big.” I use those words every chance I get!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I have a checklist for living with FA that I repost for International Ataxia Awareness Day:
- 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!
What's the first thing you want to do when a treatment/cure is discovered? I like the wording, when a cure/treatment is found, not if. Having FA is a challenge, but with the right support, we can manage this. It is the progression and the final stages that makes it so nasty. I would welcome a treatment that slowed or stopped the progression, but having lived with FA for so long, a cure would bring with it an existential crisis! What would it do to my identity?
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I think it’s right. I have FA, but I just get on living the best life I can. I have accepted that while I cannot win the fight, I can win daily battles. I just don’t need to think about it all the time. Other people might see that as me living my life in the face of adversity, but I really don’t. I only accept being called strong, brave or inspirational by others living with FA like me.
Tell us a little more about yourself... I was diagnosed with FA and 15, it was the end of everything. I worked hard to go to university, to earn my degree and to work my way up. My career gave me a very good insight into equality and diversity. On the way I got married, learned to drive and had two kids. I retired in 2012 and got involved in AtaxiaUK, soon becoming a Trustee. I started using the knowledge and experience that I was picking up to improve life for other people in my local community. I am a founding Director of a Community Transport service, structure modelled on Ataxia UK. OurBus Bartons is still unique in Oxfordshire and now has 3 buses and was 5 years old this year. I became an Ambassador for Ataxia UK in 2018, and became Co-Chair of Ataxia UK in 2019 and was awarded an MBE this year for services to disabled people and to my local community, the first person with Friedreich’s Ataxia to do so. I’m still waiting for my day at the Palace!