As a 35-year-old man, I am sure that my fear of getting old is not uncommon. But for me, that fear goes deeper. I have spina bifida.
“Disability is never an individual diagnosis”
Words by David Proudphotography by Thomas S G Farnettiaverage reading time 5 minutes
I have no problem with finding the odd grey hair or having an excuse to be a little grumpier. What worries me is that I use a wheelchair and – while my condition allows me to function reasonably well at the moment – I might one day become more limited.
As someone who played wheelchair basketball for over 20 years, I am pretty handy in a wheelchair, but I worry that my mobility will become increasingly impaired. At the moment I get by, but I am noticing changes. Longer distances in my wheelchair, steep inclines and rough pavements all take their toll.
The greatest impact is on my energy, with even basic day-to-day movement requiring a tremendous amount of stamina. I liken it to non-disabled people trying to walk through treacle. I am pushing my entire weight, and the weight of my wheelchair, through each and every movement. And this makes you selective in the activities you decide are worth that effort.
As a married man and a father, I know that my family have to assist me more than someone without a disability. For my wife there are tasks that are never ‘my turn’. It is always my wife that puts out the bins, lifts heavy objects and builds the flat-pack furniture. I know that I bring other strengths to my family, but there is no avoiding that a disability is never an individual diagnosis – it is always a family that deals with a disability. So, it’s not just my own ageing that I have to consider; as my wife grows older her responsibilities will inevitably become more challenging too.
A brighter future
However, it isn’t all doom and gloom. I am immensely proud of my disability. It has made me ambitious and driven. It is both my superpower and my kryptonite. My delight in proving doctors wrong for the past 35 years has helped keep me going. In fact, proving them wrong has become a hobby of mine. Recent advances in medicine and technology have also allowed me a glimpse of a brighter future.
My first wheelchair from the NHS was horrendous. I got it home and took the side guards off it and my Dad removed the anti-tip bars at the back. It was like a montage from The A-Team. I got into playing basketball and discovered titanium wheelchairs, commonplace now but cutting edge back then. Technology has evolved and the innovation generation has hit wheelchair mobility and design in a massive way.
I can now get a wheelchair that allows me to go over grass, so I can go to a music festival, or even trek to Machu Picchu. I can get a chair that can elevate me to the upper shelves of a shop or library, and I can now go to a beach with my son. These moments are priceless, but unfortunately the chairs are not. A Segway wheelchair costs in excess of £8,000. A simple electric wheel to aid manual wheelchair users will set you back almost £5,000. The fear kicks in again that access to this technology is not based on need, but on the size of one’s bank balance, making disability not just an impairment but also a potential poverty marker.
Leaps in technology are great but advances in medical science could make them all redundant. In the future, it may be possible to cure all impairments. With an increased ability to scan for abnormalities at birth, and an increase in our understanding of various disabilities, the idea that someone could cure me has never been more real. I struggle to process my feelings about this. I attribute so many positive things in my life to my disability; how would I feel about my identity changing to such a major extent? While I suspect that it is still not something that will happen in my lifetime, we can at least begin to think and talk about it more.
Growing old and staying young
For now, I will try within my means to use technology to help myself and my family; to push the boundaries of my activities to stay as fit as I can. I will try not to laugh when my smartwatch tells me I’ve done 1,000 steps in a day and gone up a flight of stairs. I will try and grow old like everyone else and push all other worries to the back of my mind.
Age forces all of us to make compromises, and once you begin to peel back the layers of mobility and independence, you find that everyone is just trying to stay as active as they can for as long as they can. We are all battling an impairment of some sort, and will all end up in the same place at the end.
In my mind it’s not a question of how we grow old, but how we stay young. If medical and technological advances can assist, then great, but neither of them will ever match the benefits of good old-fashioned positive mental attitude, and a good sense of humour.
About the contributors
David Proud is an English actor who was born with spina bifida. He has appeared in a number of BBC TV series, including EastEnders, Desperados and Siblings, as well as four films, including ‘Special People’ (2007) and ‘iWitness’ (2014). He is a patron for Shine, which provides specialist advice and support for people with spina bifida and hydrocephalus.
Thomas S G Farnetti
Thomas is a London-based photographer working for Wellcome. He thrives when collaborating on projects and visual stories. He hails from Italy via the North East of England.