Lockdown Life With Ataxia

It is our 6th week of lockdown, how my world has changed and how am I adapting to it? At a time when we are all being forced to reassess who we are and how we interact with the world around us, what does this show us about barriers to equality?

I’m a positive kinda guy. When asked how my family and I are coping, I reply “OK really, the food deliveries are regular, we all get on, the weather is nice.” I’ve rediscovered the joys of reading, and music. I’ve kept up with my blog so far. But my optimism is very precarious. I feel I should end every positive statement with the word YET. What I do not say is that we are so close to disaster. As none of the people I love haven’t been affected, it isn’t real to me (YET).

Volunteering is a big part of my life and is on hold for the moment. Although I know that will come back easily enough, I am secretly bracing myself for worse times. OurBus Bartons, the Community Transport I set up and help run in 2016, suspended operations on 20th of March. So far, people are coping without us, but that can change overnight. As our services are vital to many of our passengers, I thought our vehicles and volunteers would return as delivery drivers for shopping and medicine long before now.

I had booked an abseil from London’s Arcelormittal Orbit in July, much to my Wife’s relief, that probably won’t be going ahead. Mine was a small event, but when you think of all the other events, large and small, that won’t go ahead this Summer, it becomes a real problem for many charities. My Co-Chair at Ataxia UK and I have had several meetings to support our charity to adapt and survive. Our brilliant staff team at Ataxia UK have hosted online meetings to discuss TV shows, books and films, a well-attended quiz, and Q+A sessions with new patron James Moore and with a world expert in Ataxia. The 2.6 challenge is an excellent way that everyone at home can help. My friend and fellow Trustee, Andy Downie, will travel up and down his staircase 26 times. He has just turned 70! – sponsor him here. Inspired by his effort, I have resolved to complete 26 lengths of my garden path in 26 minutes. My path is only 8 metres long, but the 2% slope, the uneven paving slabs (I have hard tyres!) and the time limit will make it quite a challenge! Please sponsor me here.

This is a time of profound change. My retirement from full-time work was also a tremendous change for me and has helped me to adapt. When I retired in 2012, I stopped wearing a watch and left the busy lifestyle well behind me. I was suddenly free to spend time on me and my family. Although my Wife teases me sometimes that I am like an ‘elderly shut-in’, I am not finding staying in a problem. I am very fortunate to have a garden. Finding the time to sit in the shade with a book is something I have found harder over the last few Summers.

At the end of March, I brought a professional membership on Zoom, the video chat platform. This meant I could host events rather than the 40 minutes you’re allowed on the free version. I opened a virtual pub, The Olde Sea Dogge, for my friends and I to catch up every Friday. A very touching moment was when a friend’s Wife came home from a nightshift at a supermarket. She popped in to say goodnight and was roundly applauded by everyone in the pub. Our daughter starts online Guides on Zoom and we’re all looking forward to an exciting family quiz this week.

Our home lives still revolve around our brilliant kids; Billy 5 and Bella 10. Home schooling has been fun. My Wife, Helen, is a Teacher and just started a new job, fortunately, she is able to work from home at the moment. We miss friends and family, but we have each other and are still enjoying the novelty of the situation. Just before the lockdown began, we restored our garden trampoline which our dog had mostly eaten, and our kids spend lots of time on that as the weather improves. They go out for bike rides most afternoons to keep active. Occasionally I join them. I took an instant and irrational dislike to Joe Wickes, the body coach who does PE classes on YouTube. Things have been fairly quiet here. The most danger I have been in was when my wife used the dog clippers on my hair and hoovered me afterwards!

Twitter has really ‘lost its shit’ this time, gleefully throwing up every kind of response to this crisis as people Tweet more and socialise less. It is scary. The National Domestic Abuse helpline has seen a 25% increase in calls and online requests for help since the lockdown. This is disgraceful, we should be looking at ourselves and the way we live.

This crisis has had very little impact on my disability (YET), but the only difficulties have been administrative. Like many with Ataxia, I did not receive a letter from the NHS confirming that I was a ‘vulnerable person’. When supermarkets began to release delivery slots for these customers, a lot of disabled people who depend on deliveries were missed out. This happened to me, so I had to make sure I was included. My brother, Ant, had emailed Mike Coupe, CEO of Sainsburys Plc with the email equivalent of ‘Paddington’s very hard stare’ and forwarded it to me so I could use it. I also filled in the Government’s own list and soon I received an email from Sainsburys to say that my address had been passed to them by the Government and matched up with their customer list, and I would be able to book slots as a vulnerable customer. Shopping deliveries are ok, but only available 72 hours in advance and you never know if it will be cancelled or what is going to turn up.

A Thera Trainer exercise machine

I have been inside a lot, so I’ve lost some of the activity I was doing. When I retired, I bought a Thera Trainer through instalments. It’s an exercise bike with a motor connected to the pedals and hand cranks to assist you. I had tried one before at a rehabilitation centre in Birmingham and was so impressed, I knew I had to get one! I strap myself in and use it for an hour every day, I am sure it improves my digestion, cardio, muscle mass and circulation. It is in front of the TV, so I use it whilst watching Netflix with my Wife when the kids are in bed. I have increased the length of my workouts to compensate for not going out.

As a disabled person, I can see how the lived experience of some disabled people is becoming the norm for people. To some, surviving on welfare benefits, rarely, if ever, going out, and going without is totally unacceptable. My daughter’s friends had a competition to see who could stay in bed and watch TV for the longest. Of course, it’s just kids being kids, playing games as the norms of society fluctuate. But how easily the lived experience of some disabled people become a kids’ game of endurance. For the first time in their lives, some of my non-disabled friends are facing real uncertainty with their own finances and health. This has made me realise how lucky I am and even with my FA, my position hasn’t been shaken like others in my friendship group (YET).

Long-standing barriers to accessible employment, such as home-working seem to have disappeared overnight. Towards the end of my career, I needed to work from home a couple of days a month. I had a good employer, and as my team had been set up to work remotely with one day a week in the office, it wasn’t too difficult to set me up to work for two days a month at home. But because it was never offered, and I had to ask for it, it still felt like a grudging concession to a disabled employee.

A wise friend of mine said I would look back fondly on these days as an unexpected time we got to spend with our families. I hope he’s right. I also hope things do not go back to how they were and that we see that many of the barriers to equality we have lived with for years are actually easily surmounted. I hope that people are waking up to how damaging their lives were. This is a chance for humanity to come together and revolutionise how we tackle global issues such as climate change, how we treat each other, and transform our toxic political and social systems. It is not too late (YET).

Richard Brown

April 2020

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