24 ago. 2018

How I became known as 'boob girl'


Life with a disability can sometimes give rise to unspoken questions and sensitivities - but amid the awkwardness, there can be humour. The following is an edited version of a sketch by Jessica Donohoe, who has spinal muscular atrophy, performed for the BBC at the Edinburgh Festival Fringe.
Jessica travels down the streetImage copyrightSARAH DOUSSE
People do bizarre things when there's a wheelchair involved. But they're not always a hindrance. In fact, sometimes they can be quite helpful in times of need.
I just so happen to have a body that doesn't work as well as the average Joe's.
I sit down a lot and my wheels "stand in" for my inoperable legs. This is not down to being lazy. I have a muscle-wasting condition called spinal muscular atrophy (SMA), which is genetic and probably means my parents are related. 
Because of a lack of muscle, my arms and legs are slightly fatter than most people's and really not much longer than a French fry. 
My head, funnily enough, is the only normal-size part of my body. I basically have a very similar physique to that of Charlie Brown and the head control of a bobblehead - you should see me go in the car.
I'm not inspirational - unless there are freebies involved - and I have a greater chance of meeting some of the more interesting characters in society. 
While I was at university, my halls of residence were just off the busiest road in Manchester. With everything so close, the idea of changing out of pyjamas that could easily pass as real-life clothing was at the very bottom of my list.
One regular day, I set out to collect a friend from the station - in my bed-wear, because it was just five minutes away from my house.
But shortly into my ride, I started to receive more and more empathetic smiles.
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Storytelling Live: Going Out

Jessica was one of six people with a disability or mental health problem to perform a story about going out as part of BBC Ouch's storytelling event at the Edinburgh Festival Fringe - hosted by Lost Voice Guy. 
You can listen to the programme on BBC Radio 5 Live at 23:30 on Saturday, 25 August, and watch it on BBC Two at 23:30 on Friday, 31 August.
The six BBC Ouch performers for Storytelling Live: Going Out
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Now, I'm not averse to the odd stare and whenever I'm out in public it is pretty much a guarantee that several people will make it completely obvious that they have never seen a cartoon-resembling figure in a wheelchair before. 
But on this particular day, the number of people eyeing me up had drastically increased. I came to the conclusion that I was either: 
  • looking extra sexy
  • looking extra disabled 
Unsurprisingly, it was the latter, but not for reasons you might expect.
As I passed a large group of homeless people that had set up camp under the motorway bridge, it became apparent, with a single vulgar comment hollered by one of the men, where the surge in unusual looks stemmed from.
"Oh my God, her tit's out!" he shouted.
Obviously, he hadn't got the "she's clearly disabled and can't be advised" memo every other, polite, passerby had presumably seen. He ignored this unspoken rule. 
Much to my horror, my whole boob had fallen out of the arm opening of my pyjama-vest. Due to my crooked spine, my hot-dog arm wasn't fat enough to hide it nor strong enough to solve my issue.
I froze. Should I turn back and flash myself to passing cars instead?
I took the executive decision to continue onwards, in the hope I could manoeuvre close enough to buildings to hide my nipple and growing embarrassment.
Then, up ahead, I spotted my worst fear - a road crossing. It was busy. As I approached, I wondered if the street would ever become quiet enough to cross without being noticed. I waited - the traffic didn't cease. 
As I built up the courage to peel myself away from the privacy of the wall to risk the road, I was approached by a woman. I had passed her earlier under the bridge. She didn't seem the most hygienic and carried a bunch of cigarette ends in her hand. 
Jessica approached by homeless womanImage copyrightSARAH DOUSSE
Bearing in mind, pneumonia preys on SMA, colds are our kryptonite and new personal assistants go through vigorous sterilising training, I edged away as she got closer. But she came straight for me.
"Babe, your tit is right out, can I... ?" I didn't let her finish. For the first time in my life, anti-bacterial gel was not my first thought.
She reached out, popped me back in and I remain eternally grateful.
On my way back, having collected my boob-gate-oblivious friend from the station, I quickly discovered it's pretty difficult to go undercover when you're riding a hefty metal machine.
I got a very enthusiastic wave from the opposite side of the road and a loud elated shout of "That's boob-girl!" 
I have avoided that particular bridge ever since.

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