‘…are you cold?…’

I’m used to people asking if I need help.

When I first began my wheelchair adventures I couldn’t wheel it a few feet. I’m not kidding. My first trip in the chair was on the pavement outside my flat next to the road and the subtle camber of the pavement pulled the chair toward the road every few centimetres of progress. I didn’t have the strength to pull the chair back to the pavement and after a few feet I lacked the strength to stop it from fully pulling me off the pavement and into the road. I wondered how anyone was able to use a wheelchair, the local shop was totally beyond my ability and the wider world entirely out of reach.

While I was getting stronger I know how I must have appeared to onlookers… and there were always onlookers. So when people stopped to ask if I needed help I reluctantly understood how I had been perceived and while I always kindly declined I appreciated that even in the depths of despair there would always be those who would stop to help.

But then I became stronger and more capable; I worked hard every day to get stronger, to go further, to become freer. I went to present at Google’s HQ in London, to a conference in Vienna, around a tea garden in California, all the while getting stronger. This week we trekked to the Peak District and we managed a 4-mile offroad hike in the chair; I mean there were breaks… and a pub in the middle… and I very nearly wet myself…

…and my arms feel like they no longer contain bones…

While wheling through Eyam, a lovely little village with a pretty awesome little plague museum I recommend (I learned that some families learned that allowing small birds to fly freely inside or keeping spiders inside both helped to prevent infection, likely because they ate the plague fleas, amazing), a lady stopped her car next to me outside and wound down her window.

I’m used to this happening, and it’s always someone wanting to offer help. Never mind that if I consented they’d need to find a place to park or I imagine leave their car in the middle of the road to jump out and do… something. Of course the person asking isn’t really asking, they’re hoping to feel a little better about themselves and how they react when they see a disabled person; they’re the type of person to offer help, aren’t they?

Of course, offering help also reveals how they see a disabled person in a wheelchair. To me, as you well know by now, I see myself as climbing a mountain in full gear during a bad storm. Yes it is unwise, even dangerous, and yes sometimes I fall and yes sometimes I wet myself, but damn if each of those falls doesn’t make me an absolute badass. But to the people asking if I need help they don’t see me as a well prepared if ill-advised adventurer, they see something else, someone struggling, in pain, someone worthy of pity more than respect. ‘Can I help?’ is often followed with a look and sometimes even articulated with ‘you poor thing’.

Cram it up your ass, onlooker, I’m working out over here, you seen these muscles!?

But this lady stopped her car, wound down her window. I’m sweating from the workout, the last bit was up a steep hill. I’m in a vest top and trousers, my exercise get-up, and I take off my headphones to hear her. She looks at me with those familiar compassionate eyes, the eyes you’d use if you saw a wounded puppy, and she asks ‘…are you cold?’…’

Now listen, the dissonance between this lady’s perception of me and my perception of myself is wide enough to fit a small planet through. Here I am feeling accomplished, I managed a hill that would have been laughable before, I’m fully kitted out for the trek, I’ve got my playlist thrumming in my ears, I’ve planned out wearing layers so I don’t get too hot, I’m wearing my big hollywood-era sunglasses (there’s a story behind them, another time), and I’m well hydrated and found a public toilet to empty in so there’s little risk of accidents. Not only have I managed the hill, but I’ve done so thoughtfully, knowing the challenge, and godsdamnit if I needed help I’d ensure I had it in place before venturing out.

Am I cold?! What does this mean about how I’m being perceived? Does this lady think I’ve gone out without thinking about the temperature? Like I wasn’t capable of looking after my personal needs, of planning in advance, or of having the ability to solve the problem for myself if I had become colder than planned? I keep wondering what would happen if a total stranger stopped the car in the street, wound down their window, and asked a woman walking up the pavement whether she was cold? What would the woman’s reaction be? Her head would turn in a full circle and fall off with the surprise.

And what happens if I say ‘yes’? Is this kindly lady going to get out of her car and give me her coat? Would she run over and hug me?? Would she lift me into her car and whack on the heaters??? I have questions.

So I say ‘no, I’m good, it’s a hell of a workout!’ and she doesn’t immediately understand me, like the suffering puppy she’d seen moments before just started quoting Nietzsche and it took a moment for her to realise she’s talking to a University Professor with an unusually wet nose and floppy ears, like what she was seeing took some bandwidth to reconsider and we got stuck for a moment buffering.

I get it. The media representations of people in wheelchairs nearly always considers the chair as evidence of some terrible befalling, a cheap tool to drive empathy, or inspiration. So when the kindly lady sees me a bunch of assumptions run through her mind, I’m in pain, I need help, what has happened to me, who I have become is some terrible trajedy, and with so many representations, and so many of these same interactions… so. many. onlookers. with those same godsdamned expressions of pity etched on the cold stone of their faces, it works its way in to my self-concept.

I have to fight the temptation to pity myself.

This story doesn’t have an end. The lady smiled and drove away, I made it back to my car, to my family waiting for me. I put the chair away, got into the car and drove us to a pub overlooking the beautiful fields of the Peak District. When the bartender brought us our drinks and placed them on the table it took all my resolve not to stop, look at her sympathetically and ask ‘… do you need help?…’