It’s Rare ‘Condition’ Day!: AtaxiaUK and Me

February 28th is Rare Disease day. That word ‘disease’ grates on me, I don’t like it at all. A disease is negative, contagious, unpleasant and unwanted. Someone with a disease is broken and needs a cure. It is an outdated term and saddles disabled people with very toxic labels. It simply fails to even come close to describing either Ataxia or my complex relationship with my Ataxia. I prefer ‘condition’, as this describes a neutral, changing state, something a person can qactually live with. I have raised this with the gatekeepers of Rare Disease Day, who I imagine are not disabled themselves, to no avail. It makes me angry that disabled people cannot choose the language other people use about us.

As I live with a rare condition, I very much want to contribute to today, because any opportunity to hear the voices of disabled people is precious. I started thinking about my awareness of, and passion for upholding the rights of disabled people. I quickly realised how much my relationship with AtaxiaUK has enriched my life and helped me to support my local community and the Ataxia community. I have met so many amazing people and found in them, the quiet strength and confidence to do things I didn’t expect.

So, how did I first get involved with AtaxiaUK? I retired in 2012. I was 36 and had spent my life living it and stubbornly stayed well away from the Charity. Now was the time for me to get involved. With support from AtaxiaUK and a friend, I set up and ran its Birmingham Branch. I coordinated an Awareness day in the City-centre and gave an awareness raising presentation on Ataxia to a group of trainee Physiotherapists at a Hospital in Halesowen.

As I rediscovered my independence and the joy of really making a difference, I came to understand some of the difficulties faced by people with Ataxia. Having moved to Oxfordshire with my family, I was elected as a Trustee of Ataxia UK.  In addition to attending and making valuable contributions at Board meetings and additional meetings and events as a Trustee in my own time over the last five years, I have helped steer the Charity through difficult financial conditions. Last year, I helped develop the Charity’s ambitious Fundraising Strategy. This will strengthen Ataxia UK’s fundraising capacity, resulting in a realistic ambition to double the Charity’s income in the next five years and enable greater investment in support and in research. I’m in my second term as a Trustee and was recently elected as Vice-Chair.

I have been privileged to do so many things and meet so many people as a Trustee of AtaxiaUK. To celebrate the Charity’s fiftieth anniversary in 2015, I visited as many branches and support groups in the Midlands as I could over that Summer. I have led the inspirational ‘All about Ataxia’ workshop, supporting and informing people with a recent diagnosis of Ataxia at the last five of the Charity’s Annual National Conferences. I attend or speak at a wide range of events and have featured in several of the Charity’s awareness raising campaigns. I am a moderator of Ataxia UK’s ’Parents with Ataxia’ closed group on Facebook and I volunteer one day a week to answer calls and emails on the helpline. My proudest moment came at this year’s Ataxia UK Conference, when I received An Ambassador Award.

I have done things I would never have thought possible. I completed the Birmingham Half-Marathon, a tandem sky-dive, and was went to a reception at the House of Lords! But it is the experience I have gained that helped me to benefit my local community that I am just as proud of.

How Being a Trustee Has Helped Me and My Local Community

As a Trustee of Ataxia UK, I have developed a good working knowledge of fundraising, strategy, finance and a basic understanding of charity law. I have made a valuable network of friends and would never have met so many lovely people and become part of my community. Using this, my own, and the lives of a great many people have been improved.

I became a School Governor at our village school from 2014-18 and supported everyone at the school through an Ofsted inspection. My insights into running a business, HR and finance were very helpful. One of the most rewarding aspects of being a Governor at my children’s school was reading with the pupils with my dog, Tara. I have just signed up to a reading charity for children in Oxfordshire.

A six year-old-girl sits in an armchair and is reading to a dog in a high-vis jacket who lies at her feet.
Tara, Middle Barton School Reading Dog – 2015

In 2014, I set-up Friends of Middle Barton School as a charity to help it apply for funding and increase its income by applying for funding from Trusts and Foundations and claiming gift aid. Both of these things I had learned from AtaxiaUK. In February 2017, I successfully applied for funding to support its first major project, the conversion of an unused outdoor pool area into an outdoor classroom.

Richard and his trike, marshalling a charity cycle ride - 2017
Richard and his trike, marshalling a charity cycle ride – 2017

After my local community had its bus services cut, a group of concerned villagers took on the task of setting up and running our own bus service. As an experienced Trustee, I took on the task of leading the group and registering OurBus Bartons as a charity in August 2016 and helped apply for start-up funding we desperately needed. I’m still very much involved in running the company and use my skills as a Trustee every day. Since our services began, we have completed 15,000 passenger journeys and 80 hires for private customers and community groups. We have just bought our third vehicle.

I also used my growing fundraising expertise to improve my own life. In 2017, I successfully crowd-funded the cost of an electric trike attachment for my wheelchair. This included a benefit concert by our community choir. The trike enables me to pick up my children from the village school, visit my friends and go to meetings and events in my community. I have even taken the trike with me on holiday!

Being a Trustee with Ataxia UK has changed my own perceptions and allowed me to show others a very positive message about what disability means. My achievements confirm my confidence and the value my volunteering brings to people around me. Most of all, it shows that I am living the best life I can with my condition. This is so important for disabled people who are struggling to survive in a society that tells us we are diseased, broken and worthless.

Become a Trustee. You only need enthusiasm and a little spare time to get started. Your expenses are met, and all training is provided. Volunteering just a couple of days a month will change your life forever!

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