Comment: 'I found myself a prisoner of circumstances over which I had little control'
In June I had knee surgery. Knowing recovery would be long and arduous, I braced myself. Not without good cause. I don’t mind admitting, it’s been tough.
But something else happened, which I hadn’t prepared for. I caught a glimpse of life in a disabling world.
The experience took me back to the mid-1980s when I was on a national trade union working party about positive action. Among many memorable moments, one stood out – on a plane leaving Glasgow after a visit to hear from Scottish members.
As I sat in the window seat, my colleague, Rory, a blind man, was in the aisle seat. In between us, was a member of the union’s executive.
To our utter bewilderment, she started to tell us that the night before she’d tried to understand what it might be like to have no sight.
She’d blindfolded herself with a scarf and attempted to navigate her hotel room. As we listened, Rory’s incredulity seared through me.
She meant no harm, of course, but as he muttered to me later, she could have done herself some. We chuckled helplessly but it was no laughing matter.
Over the last decade, the phrase ‘lived experience’ has become a public policy mantra in Scotland. We aspire to bring it to the heart of policymaking; to identify solutions which level the playing field.
We recognise, on paper at least, that we can’t create accessible and inclusive spaces and services unless we involve those with lived experience of disability.
As someone with a history of severe depression, I have lived with a disabling condition. But I don’t have a scooby about the impact of physical impairment on daily life.
That changed this summer. Not completely and not forever. But enough to challenge any lingering complacency I might have had about access and inclusion.
The surgery left me unable to walk unaided for eleven long weeks, six of which involved no weight bearing on the affected leg. I found myself a prisoner of circumstances over which I had little control.
The lead-up had been challenging enough. I’ve been a runner for nearly 50 years. My idea of fun is to run 12 miles on a Sunday morning, blethering to friends. And that’s just what I’d done – week in, week out. Running is part of who I am. I’ve even won the odd medal.
But a year ago, I learnt I had osteoarthritis which threatened to change all that for good. And now, post-surgery, I could barely get out of my own front door.
As I muddled my way through the early stages of rehabilitation, something else occurred to me. I had become ‘disabled’, albeit temporarily. And it was a painful, frustrating and, sometimes, enraging experience.
Just getting about was a logistical minefield. Daunted, fearful of injury, exhausted, sometimes I just couldn’t summon up the energy.
Since those days on the working party, I’d dealt with access issues countless times. As an equalities manager undertaking building checks, I’d found myself, on more than one occasion, being shown to a dirty goods lift at the back entrance of a hotel.
In another role, I’d faced down a planning officer who’d told me the platform lift we were seeking permission for wasn’t aesthetically pleasing. Exasperated, I’d quipped it might look quite nice to someone in a wheelchair. We got consent.
But in all those encounters, though I felt impotent professionally at times, it had never really affected me. Not personally.
Now, overnight, I found myself arriving at events with steps I hadn’t been warned about, lifts which couldn’t be used without assistance, and doors which were too heavy to open – rendering the ramp leading to them next to useless.
I came face to face with just how excluding such moments are.
Approaching people along crowded pavements, I marvelled at how often no one noticed my crutches. Learning to manage without them, my limited mobility became even more invisible.
Just getting about was a logistical minefield. Daunted, fearful of injury, exhausted, sometimes I just couldn’t summon up the energy.
In the daily grind, there were examples of good practice – at least to my untrained eye. I’d single out the Edinburgh International Book Festival. Not just because the access arrangements worked, but because I didn’t feel patronised.
What did I learn during this brief sojourn in a disabling world? Just briefly, vanishingly so with hindsight, I got the impact of physical impairment in a way I never had before. Not just intellectually, but emotionally.
This was for real. I couldn’t take off the blindfold.
And what I also got is that we have so far to go. For all the progress we like to think we’ve made, we are light years away from inclusion.
Infrastructure creaks and attitudes lag. Whatever the good intentions of policy, the space between fine words is a chasm – the implementation gap is a ravine.
But the glass half empty optimist in me realised something else too. We can fix this – if we really want to. Things like automatic doors aren’t rocket science. They simply require investment, effort and forethought.
But that won’t happen without putting lived experience front and centre. Co-production isn’t nice to have. It’s a pre-condition.
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