Not Goodbye, See You Later: Eight Years with Ataxia UK

Ataxia UK2
An opera singer from ataxia UK takes to the stage. She steps out into the spotlight, she has worked hard, made sacrifices, and learned. THIS is her moment – everything has built to this. She takes a deep breath as she opens her arms wide. Then the lights go out and the curtain falls!

That is dramatic, but it’s how I feel.

I have had an amazing adventure with Ataxia UK over the last eight years. It has helped me as much as I have helped others. Just when I feel I am ready to do my best work; the best practices from the Charity Commission (and our own rules) say it is time for me to take a break.

I am very proud of the direction that Ataxia UK has taken since I joined the Board as a Trustee. That was back in October 2013. United by the ambition of encouraging steady growth and increasing professionalism, the Board created and invested in a Fundraising Team. They helped develop a world-class Research Team and improved the processes of our Finance Team. Additionally, they built a digital presence and brought in support for our Chief Exec.

What’s being a Trustee like?

I highly recommend it. Being a Trustee is great because you get to run a company with great people. With powerful motivations who bring their unique skills and experiences with them. You also get to work with members of staff who are some of the best in their fields. Also, I get to know many of the wonderful Members and brothers and sisters around the world. To understand our Members better, I trained them to take calls on our Helpline. They also run our Facebook group for Parents with Ataxia. I have made lifelong friendships amongst all of these groups of amazing people.

Special mention to Harriet Bonney

Who was a kind and supportive Chair for much of my time as a Trustee and the most organized person I’ve ever met, and Andy Downie who can spot a circular argument from a mile away. Through it all, has been our CEO, Sue Millman. A selfless incredible person who works as hard as three people. I have learned so much from working with my Co-Chair William Little boy as we helped steer Ataxia UK through very difficult times over the last couple of years. He helped me find the missing pieces in my development, understand risk and utilize a hard edge at the right moment!

As we built this foundation, we completed some exciting projects and campaigns. We introduced a striking new logo, moved to a new office, and ran the Fractured Lives campaign. I took a special interest in projects that put people with Ataxia at the very centre of our charity. We developed the 16-30 group to hear the voices of young people with Ataxia, sought to add an element of challenge and championed the many achievements of people with Ataxia through our conferences, and targeted bringing volunteers in through the In-Control project. I cannot take credit for any of these, but I know I influenced them.

Was there a specific difference you made?

I directly influenced Ataxia UK through my work with the All About Ataxia workshops. My first was before our conference in 2015 when I helped deliver videos and prompt discussions. As I grew in confidence, I started sharing my own stories and taking people through their diagnoses, helping them to become experts in ataxia and take control of their lives. Over the years, our team grew. I love catching up with former participants who tell me how their lives have improved since they took the course! Recently, with improved videos, we delivered the workshop every few months online as part of our In-Control Project. Then we started seeing volunteers come forwards. I was very proud to see the last couple of workshops being run by these volunteers. Now they are encouraging people to stand up for themselves and be assertive when dealing with others.

What is the most important thing you have learned?

I have learned a lot about myself, teamwork, leadership, and disability in all its aspects. A big personal lesson came when I took my re-election in 2016 for granted, did little to prepare, and lost. I learned that to represent others properly, you must ‘DO THE WORK’. Rather than lose me, my fellow Trustees decided to co-opt me to the Board so I could stand in the next election (which I won!). This really boosted my confidence, I was voted in as Vice-Chair a year later.

An important understanding I was able to develop was what is called the ‘Social Model of Disability’. I first became aware of it at some awareness training at the very start of my career but developed my understanding of it through work with Ataxia UK. The Social Model of Disability first emerged in the UK in the 70s and explains that disability does not belong to any one of us, but is created by perceptions of shame, sickness, and helpless by others and amplified by the inaccessible world we live in. 

Literally, ‘Disability is other people’.

That I cannot climb the flight of stairs doesn’t disable me, society’s acceptance of them does. Seeing disability in this way sets you free but it also exposes you forcefully to the ableism that ignorance creates. Instead of being angry and resentful, working with Ataxia UK helped me understand that with the right support, disabled people can manage their conditions and do great things. This is exactly the kind of support family, friends, employers, and Ataxia UK have provided.

How has being a part of Ataxia UK helped you in your personal life?

There’s the networking, the contacts, the training, and the experience. But for me, Ataxia UK really has been a gateway to other things. I started using the knowledge and experience as I was picking up two improved life for other people in my local community. I am a founding Director of a Community Transport service, structure modelled on Ataxia UK. OurBusBartons is still unique in Oxfordshire and now has 3 buses and was 5 years old this year. As well as daily, timetabled services, we support local schools and community groups and events. I have become involved in many other Charitable projects as a result.

What are your favorite moments?

Smiling for the camera! My Tandem skydive in 2014.

Helen and I at at Ataxia UK’s 50th Anniversary Dinner in 2015.

There have been many unforgettable moments: completing the Birmingham Half-Marathon with 90’s Batman (I was dressed as 60’s Robin!), and surviving my skydive! In 2014.

The most memorable was attending Ataxia UK’s 50th anniversary Gala dinner in London in 2015, me in my tuxedo and my Wife Helen looking beautiful in her cocktail dress. A magical moment in history.

The funniest was Arthur Lager declaring his undying love for our Chief exec, Sue Millman and fellow Trustee Tony Kaye singing and dancing for the same ventriloquist at our conference in 2019.

What’s next?

I am confident that Ataxia UK will continue to grow and thrive – I will help however I can. I could return after a year, but I have confidence in the current Trustees and new Chair that I won’t need to. The continued work of our In-Control Project and the redevelopment of our Helpline with our hopes of developing advocacy and campaigning functions will see Ataxia UK continue to provide much-needed support.

I was very proud to be made an ambassador for Ataxia UK at the conference in 2018. Being 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 is such a privilege. I know it comes with a responsibility to continue to represent people with Ataxia, so, like the opera singer, I will dust myself off and keep going!


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