It’s An Honour!

I was awarded an MBE in the 2021 New Year’s Honours. It has been a very humbling experience, but after a hectic couple of days has settled down now. What exactly is it and will it change me?

One late Summer’s evening back in 2018, My Uncle and I were putting the world to rights. We decided that the the Honours system recognises too many politicians and business leaders and not enough people who really benefit their own communities. The next day, he resolved to test that assumption with his favourite Nephew! I provided him with contact details for people I thought could help. My Uncle received a polite acknowledgement that his nomination had been received and advised that if he did not hear anything in two years, he could assume he had been unsuccessful. Life carried on, and after two years had passed without word from Westminster, I let it go. I have found out since that the Honours Committee were busy interviewing my supporters in the strictest confidence.

I was contacted out of the blue in late November 2020, to ask if I would accept an MBE in the coming New Year’s Honours. I was surprised and delighted. Reminded of my Irish Great-Grandfather’s proud service in the British Army in the First World War, and his and my Grandfather’s service in the RAF in the Second, I accepted straight away. I had to keep the news in confidence until the lists were published. December was going to be long month!

Of course, I used that time to completely overthink it. When you are constantly pushed to the edge of society, you question your achievements. I have accepted that my Ataxia is an important part who I am, but being the first person with Friedreich’s Ataxia to be awarded such an honour means something more. For someone trying to live in the present, awards can be problematic. It comes with an expectation that I continue to be a role-model for the rest of my life. The MBE will be with me forever, but it is just something else that I will take with me from day to day.

I was reading A Promised Land by Barack Obama at the time, and understood the unwelcome pressure he felt as the first black President of the US to be an inspiration. I don’t want to be an ‘inspiration’ either. Like the 44^th President, I want my story to be a boost to others who have to put in extra work and effort to achieve. One way he did this was to promote people from backgrounds like his. In his first term as President, Obama nominated Sonia Sotamayor as a Supreme Court Justice. For him, she is someone with “intelligence, grit and adaptability” who has had to work harder and to succeed. It struck a chord with me. I have not overcome my disability; I have adapted to my impairment and performed consistently at a high level for more than twenty years. I feel I have struggled successfully against, and overcome, some of the barriers against which society places against people with disabilities. Now, like Obama, I need to work to remove those barriers.

My citation in the London Gazette reads: Co-Chair of Ataxia UK. For services to People with Disabilities and to the community in Middle Barton, Oxfordshire. This represents more than twenty years of my life; studying from home, my time at university, my career, my association with Ataxia UK, my wider voluntary work and how they all came together to benefit other people.

An MBE is an order of Knighthood, but there are five levels. As it is not one of the top two, I’m not Sir Richard (yet!). Awarded by the Queen, the medal itself is usually presented within a few months at Buckingham Palace or Windsor Castle by her or a member of the Royal Family. I hope mine is presented by Prince William, so that we can talk about our beloved Aston Villa!

As a Member of the British Empire, I am entitled to wear the medal, use the letters after my name, book a chapel at St Paul’s Cathedral for the weddings of my children and their children and commission my own coat-of-arms. I’m still getting used to it, but am already finding that other people behave differently with me. My first official act was to write to the DWP to insist that when they contact me in future, it is with my full title. That felt good, but these are little things, not the real prize.

Getting here has taken an incredible amount of hard work, sacrifice, perseverance, a little luck and lots of support. It is an achievement in which I see all of my friends, family and colleagues. I am so grateful to them all. But it is my Wife to whom I owe the most. Initially, the award must have been a bitter-sweet reminder of all the unconditional support she had given and sacrifices she had made for me over the years. She raised me up, it wouldn’t have happened without her. She knows it is her achievement just as much as mine.

As always, my kids can be relied on to keep me grounded. Billy (6) explained that “Mr Bean got a medal from the Queen for rescuing her dog.” Bella (11) added that it was “Quite good.” Like every occasion, it has been odd not being able to celebrate properly with friends and family. But we all have to sacrifice those things at the moment, I hope to set that right later this year!

The real prize is the good I can do going forward. As 2021 began, the Friedreich’s Ataxia community in the US reached out globally to support their attempt to get approval for the drug Omaveloxolone. A small but thorough clinical trial demonstrated significant improvements in the symptoms of FA patients. I discuss my feelings about it in my blog post: Can I Hope Again? Securing approval for this treatment in the UK would make a big difference to a lot of people. I’m going to try. The MBE has not changed who I am, but it has changed what is coming next.

Richard Brown MBE