…”Suddenly I am differently disabled and frankly it’s a bit of a shock”… says new DH contributor, Mark Wilson, who shares this insightful article on how his life changed when he started to use a wheelchair.
I was born minus both legs above the knee and minus my right arm, plus a bit of a digitally challenged hand, and immediately became a fanatical Everton FC supporter which put the tin hat on it and no mistake. So, I’m thinking that my disability stacked up as “significant” in anyone’s book, but I walked all my life until 8 years ago when I gave up what had become an unequal struggle and became a permanent wheelchair user – still wearing my ‘tinnies’ and artificial arm mind you – but swopping “steady staggering” for wheels.
A strange thing happened at this point. People started to see me as “disabled” for the first time (well, that’s what they told me).
Now this takes a bit of getting used to, given I’d been missing all sorts of bits and pieces for, well, ever. But somehow even if you have a bit of a funny robotic walk and your lifelike right hand isn’t flesh and blood, you somehow come across as less disabled than a wheelchair user. Why? I’m still not sure, but here’s the rub, I actually subconsciously felt the same way myself. Yeah, I was disabled, course I was. But I had worked my way up the ladder at my workplace and at times towards the end of a 35 year career I had 1000 people in my command, drafted for Ministers etc and spookily even got the OBE a couple of years ago. So I hadn’t done too badly.
I wasn’t prepared for the impact of becoming a wheelchair user and in particular the increase in the “does he take sugar” moments I’d often talked about when guest speaking on the superb Jobcentre Plus “Raising the Game on Disability” seminars. True, I could actually get around better using a wheelchair, which opened up all sorts of new opportunities for me, but it also meant I couldn’t get up steps.
And guess what? Shock horror, some organisations ignore what we used to call the Disability Discrimination Act (“DDA”) and get away with it. They seem to be getting away with it under the Replacement Act as well, but that’s a whole other can of worms!
My unease at becoming differently disabled was compounded by having to take early ill health retirement, stop wearing my artificial limbs, give up driving and a career, all in the same week. Deteriorating disability, even just through age related impact, is no fun. I’ve a whole new set of “issues”. I’m still getting used to being stared at so obviously by some adults who, unlike the kids, should know better. I can cope with the ten year old shouting at me “hey mister where’s your legs” but the grown man walking backwards to stare gets a nasty glare back, or much worse!
Prior to the “no legged wheelchair thing” I had a bit of a choice as to where I could devour a good bit of Prime Rib, but now even one step at a restaurant can force a rethink and this reduction in “choice” tends to get to me. I have experienced completely unexpected problems transferring from wheelchair to car seat, loo seat, and a few other seats! I’ve overcome the obstacles with a mixture of steely determination, mixed in with a dollop of “bugger, give me a break” type exasperation (well, that’s not quite true actually, apart from the exasperated bit). I’ve lent heavily on friends who use a chair and professional Occupational Therapists whose advice and practical help has made a huge difference.
Equally valuable has been even handed guidance from wheelchair suppliers, well done Da Vinci Mobility in Liverpool, and those purveyors of what we might call “disabled equipment”, much of which requires a small mortgage to complete the purchase, but boy can the goodies help you slice a loaf and butter bread with one hand!
In this day and age many of the support networks are rightly focused on dealing with “existing” disability. But in my previous work-related life I spent a lot of time talking with employers about “acquired disability” i.e. when one of us moves from that rarely understood state of being “normal”, whatever that really is, to a position where being called disabled is something you get used to even if you feel “it isn’t really happening to me”. Employers spend thousands of pounds training recruits to do a job, and teach them additional skills when needed. Enabling a valued member of the team and helping them to move on, rather than lose them due to a newly acquired disability makes sound financial sense.
There is, of course, no reason why coping with becoming Differently Disabled should present barriers that vastly differ to those faced by the newly disabled. I suspect however that employers, customer service folk and, yes, even friends, are sometimes less prepared for significant changes to someone’s existing disability.
Of course that doesn’t make sense, does it? Well, my experience is that when you have spent a lifetime being disabled in one particular way, you really can be ill equipped for things deteriorating due to age and general wear and tear, so much so that the psychological impact can be surprising. “I’ve coped with this stuff all my life so it will be a breeze” or “who better than me to understand my own disabling problems”? The reality is you don’t see it coming or, worse, ignore the signals screaming at you to change and (probably for the umpteenth time) “adapt”.
The answer, I guess, is this: listen to those around you who suggest it’s time for a few deep breaths and be prepared to almost start again, however much of “time served” disabled expert you are. It helps when you have a brilliantly resourceful wife/husband/partner and supportive family. But they can only do so much to nudge you towards accepting becoming differently disabled. It’s that “bugger it” moment again and you have to gird your wotits, do your research and listen to advice in order to make the change happen.
As I’m discovering, being Differently Disabled is a bit of an adventure with lots to recommend it and a few surprises to balance the inevitable negatives. However, for many there are I know few upsides and a constant struggle to face. So what’s the real message here? Well, all I can say is that for me it remains about “awareness”. The awareness of those around you in any environment, work rest and play and yes, self awareness, because without it all the good advice in the world tends to get a bit lost in the static.
By Mark Wilson