After I was diagnosed with Friedreich’s Ataxia at fifteen, I swore, and really believed, I would take my own life before using one. What triggered this reaction and what changed my mind?
I grew up in the eighties, unaware of disability. In my family, my cousin was born with a harelip and cleft palette, but this was resolved by surgery in childhood. My Grandma faced down her various physical problems with great stoicism as she reached the end of her life. I didn’t know anyone else who used a wheelchair. Joey Deacon, an elderly disabled man with Cerebral Palsy appeared on Blue Peter in 1981. Although he was there to raise the profile of disability, his appearance only served to cruelly ridicule disabled people in playgrounds across the Country. Children in Need began portraying disabled people as tragic victims needing kindness of others to survive since 1980 and every year since. Although it never occurred to me until much later, but my Catholic upbringing had perpetuated the idea that disability was an affliction that was a punishment for sin and could be visited on someone or cured by the power of God Himself. The message for me (and most of us who grew up in 80’s Britain) was that disability is a terrible burden that only medical experts, a miracle or the kindness of others can relieve.
When my I had my diagnosis in 1991, the most terrifying aspect of that bleak prognosis was ‘having to go in a wheelchair’. The wheelchair was the symbol of dependency, a pathetic surrender at the end of life. It stood squarely in the way of the ‘normal’ life I wanted. I explore this in my blog post about what I call my ‘origin’ story. Basically, I hid, deflected and dissembled, chasing that ‘normal’ life through my teens. Slowly, my mobility worsened, and my grief deepened.
With grief, you have to hit the lowest point before you can pick yourself up and start come back. You are truly blessed if someone loves you enough to hold your hand as you fall. My lowest point came when my mobility had deteriorated to the point where my quality of life had become much worse than what I thought would happen to me if I ’accepted’ using a wheelchair. It was a very hard, but very important lesson for me to learn. it is one that I have seen other people struggling with in their own life-changing moments.
Helen held (and still holds) my hand. We had met in 1995 and she quickly became everything to me. A small breakthrough came in Summer 1998, on a holiday with Her Family. Although I could still ‘walk’ 100m from a parked car with assistance, I arranged to hire a wheelchair at our destination, so I had a little more capacity in the hot weather on days out. I went along with this because I would be in a safe environment, where nobody knew me. I used this awkward contraption begrudgingly and as little as possible.
Once we returned, everything went back to normal. Except there was a new problem. Helen was leaving to study at Oxford. Although only twenty miles away, I feared that different lifestyles and Helen’s expanding new world would bring a natural end to our 3-year relationship. We kept up regular visits and somehow stayed together. When Helen came back one weekend, we went to a supermarket on the edge of town as usual. Pretending to be grown-ups, we’d pick up supplies for the weekend. I was busy with studies with the Open University and research or writing, but I’d pretty much not been anywhere except the village pub. We pulled up in the supermarket carpark one weekend. “Why don’t you try one of those chairs?” Helen asked brightly. I felt the usual angry response rising, but this time was different. I had had enough of being left behind and knew that I was in danger of being left alone forever. Aware of the very small possibility of seeing anybody I knew, this time I agreed to try. Helen duly wheeled one of the basic contrivances over, with a squeaking wheel and its footplates clumsily adjusted to different heights. I insisted she walk next to me and NOT push; in case it gave the impression to all the people I thought would be watching that I was not independent. I wheeled anxiously through the car park.
Once we entered the supermarket, everything changed. I was overwhelmed by my new freedom. Whizzing down the aisles, popping items into my basket, weighing up the offers; making my own choices again. I couldn’t believe how silly I’d been. I had let my deep shame of being disabled stop me living and trap me inside like an angry spider.
My life changed forever that day. I’ve been a full-time wheelchair user for 20 years now. I went to University, down the aisle, forged a career, and saw both my children born from one. Today, when I tell people about this revelation, I realise with a wry smile that that Richard was blissfully unaware that he couldn’t even reach most of the products, the accessible toilet probably doubled as a store-room and that the staff probably wouldn’t have been trained to offer assistance!
When, and how, do we develop ideas of what is normal and become terrified of being different. As a regular volunteer at my daughter’s Primary school, I was the only wheelchair user and one of the only men the pupils saw regularly. I would go and speak to the reception classes about disability. I would tell them quite simply that: “My wheelchair is a tool, like a car or shoes or a bike that I use to get around.” This made perfect sense to them. I braced myself for the usual questions – ‘What happened to you?’ and ‘How long have you been like this?’ To my great delight, it quickly became clear that at three and four years old, these kids had no concept of disability, race or gender. My favourite question was ‘Where do you sleep?’ This threw me, did they think I slept upside down like a vampire? They were being eminently practical, they thought that as the chair is a physical part of me, how did I ‘do’ sleep.
It is good to know we are not born afraid of or disgusted by disability. As we grow, we form our attitudes and behaviours from our parents, peers and the world around us. As I explore in my blogpost on the media; Disabled people are portrayed as scroungers and harmful ableism justified by pseudo-eugenic argument is increasing. In their 2020 Annual Report, The Joseph Rowntree Foundation found that half of the 14 million people living in poverty in the UK today are disabled themselves or live with a disabled person. The hostile environment continues to push disabled people and their carers into early graves.
The expected narrative for this kind of ‘inspirational’ story is ‘of overcoming great personal tragedy through sheer determination and bravery’. Not for me. It was my own shame of being disabled that kept me out of a wheelchair. Once I had grieved for the life I thought I would never have, it was my fear of being alone and my frustration at missing out that forced me to change. I’m glad I got through that, because I never looked back!