Curiosity Killed My Privacy.

Perhaps I’m making assumptions here, but when I notice people staring at me as I go about my business, I don’t think it’s because of my goddess-like beauty. I think it’s got a little more to do with how exactly I’m going about my business, that being in a wheelchair.

When out & about in Leeds city centre I regularly see other wheelchair users; I often see ten wheelchairs in as many minutes. Admittedly Leeds is the most disabled-friendly place I’ve ever been, certainly more so then London or Manchester, so perhaps wheelchair-users are more likely to be seen here. However, I’ve even spotted an increase in wheelchairs being visible in high-profile TV series & films. Surely by now, the novelty of seeing someone disabled has worn off.

Being stared at as if you were a circus act is beyond irritating, & particularly in adults only serves to make people look gormless & dim-witted. However, unless a well-placed lamp post is involved, it tends to be a relatively harmless practice.

Sometimes, however, the staring is accompanied by questions & I am expected to answer those questions. It doesn’t matter if I am in a hurry to get somewhere, or simply don’t want to recount the miserable tale of how I ended up in a wheelchair for the tenth time that morning; if I don’t provide a sufficient answer, I’m the rude one. More & more I’ve taken to ignoring such questions from strangers on principal; I should be able to go about my business just like anybody else, without having to justify my existence at regular intervals. I have more than made my peace with being considered rude; it’s not like information on disability is particularly hard to find.

When it comes to staring & questioning there is one group I never mind, & that is pre-school children. There ignorance is born of innocence; they lack social inhibitions, & unless someone in the family is disabled, they probably won’t encounter disability until at least school-age. However, at school children have daily social interactions, & since disabled people are no longer separated & institutionalised as in previous times, they are highly likely to encounter some kind of disability as their horizons expand. If nothing else, they should at least know that staring & pointing is considered rude.

It is not my job or my responsibility to educate children. In fact, on more than one occasion I have been chastised for trying to parent somebody else’s child when answering a question. The expectation that disabled people do not have the right to privacy, & must be completely transparent with total strangers about complex & intimate symptoms, is ableism in a nutshell.

Nor is disability something to be ignored, being hushed & hurried away leaves the impression that that is the appropriate response to seeing someone disabled, not treating them as simply another person.

Disability is something that exists. Parents & teachers have a responsibility to teach children that despite our differences, we are still human beings. As a childless person I have no right to tell people how to parent their children, but as a disabled person I should have the right to set boundaries concerning my privacy, & for those boundaries to be respected.

Ignorance is Bliss.

Despite having reproduced for millennia, humans continue to marvel at the mind of a child and the way it tries to piece together the coalition of chaos that is life. This often provokes brutally honest and usually quite amusing reactions to social situations, which arise from the ignorance of complex societal norms created by adults with the sole purpose to make other’s lives as miserable as their own. A child’s views on disability are no exception to this, and in particular young children will not treat someone in a wheelchair differently to someone who can walk. They also occasionally think we’re mermaids (

One summer, I was browsing the isles of the local supermarket searching for a birthday present when a little girl with blonde pigtails and big blue eyes tottered round the corner, almost into my wheelchair. She stopped and looked up at me, before asking in earnest;

“Are you poorly?”

I smiled and confirmed this.

“Will you get better though?” she continued.

“Hopefully,” I said in reply.

“And you’ll be able to walk like me?” she asked.

“Absolutely,” I returned.

Throughout this exchange, the blonde woman who I presume was the girl’s mother looked utterly mortified and desperately tried to coax her daughter away. I looked up at her, smiled, and said it was absolutely fine. I would much rather children ask the questions they want to ask instead of staring silently at me, so as to break the taboo surrounding disability. Children are remarkably robust when facing the negative aspects of life, and are rarely as perturbed as we might have assumed. As such, disability and sickness should not be hidden from children, as it is simply a part of real life.

Sometimes, children have wonderful reactions if they see that the adults they are with have blocked the path of a wheelchair. In many instances children have pulled prams, bags, baskets, or even the adults themselves out of the way, allowing me to pass safely. On a good few of these occasions, the adults have even received a ticking off from the children. My personal favourite occurred after a distracted mother let a door swing shut in my face. Her son, a boy of maybe 6 or 7 years old, came back and held the door open for me. His mum called out for him to stay with her in a somewhat irritated tone, and in response the boy told her he’d only tried to be nice, as she had taught him. He then attempted to say it was “hypocritical” without much success, which fortunately broke the ice and the mother relaxed and apologised.

At other times, it has been me who has been the first to speak to a child if the situation calls for it. I remember on one occasion I was in the local park and a girl was riding her scooter down the hill much faster than her dad could walk. Unfortunately the front wheel of her scooter got caught in a rut in the pavement and the girl went headlong over the handlebars, landing heavily in a messy heap. The closest adult to the fall didn’t bat an eyelid and walked past almost as if they hadn’t seen or heard what had happened. As the next closest adult I went to the child to check she was OK and handed her a tissue to wipe her tear-stained cheeks. Her injuries were very minor, superficial scrapes to the skin, but the shock of the fall seemed to be what had upset her. I remembered doing almost exactly the same thing ten years before, on another hill within the same park, and said as much which made her smile. Seconds later her dad arrived, almost out of breath from trying to stay upright on the slightly slippery path. He smiled and they both thanked me before we went our separate ways. It was not that a disabled person had stopped to help that required gratitude but the fact that a person had stopped to help at all, and I fully believe that they would have spoken to anyone else in exactly the same manner.

The ignorance of these children towards the taboo surrounding disability did not bring bliss to themselves alone but also to me as a disabled person, and I can only hope that as they grow and develop their inclusive attitude is unmarred by the loss of their ignorance.

The Real Mermaid.

I have been extremely fortunate in one aspect of my illness; I am still able to swim, albeit with a sloppy breast stroke interspersed with doggy paddling when my arms get tired. This is yet another of my activities that causes people to raise their eyebrows when they see the wheelchair gliding over the tiles next to the pool, but most people refrain from comment.

Once in the water the buoyancy lessens the pain in my limbs, and I am able to perform slow lengths up and down the pool, with a couple of minutes break between each 25 metre stretch. Admittedly others using the pool can become frustrated if they get stuck behind me, but I try my best to keep to one side, and give others the space to move around me. It is also in the pool that I have had some of the most positive responses to my disability besides my writing, as people are amazed at someone at least attempting to live as normal a life as possible.

There is one particular experience from a swimming session that makes me smile every time I think of it, and is something that others love to hear about.

One of my swimming costumes actually came from the children’s clothes section and is bright blue, with pictures of a coral reef and a rich ecosystem of tropical fish covering the fabric. On this particular occasion I was wearing some starfish-shaped earrings that I am rather fond of, and the combination of the indoor lighting and water made my hair appear slightly red.

There was a small boy with his mother who had been watching me swim slowly up and down the pool for some time, and I made sure I smiled at him as I waded past to climb out of the pool. I hauled up my body, which honestly felt like a block of lead without the support of the water, and swung myself into my wheelchair, something I had done countless times before. The young boy had watched me do this and turned to speak to his mother.

“Mummy, mummy, look, a real mermaid!”

I have never seen anyone look so embarrassed or so hopeful that the ground would open up and swallow them whole as the boy’s mother did at that moment. I didn’t realise that it was possible for all the colour to drain from someone’s face, only for them to blush a brilliant red so quickly afterwards. Before she had a chance to apologise I smiled at her and then started to laugh, which prompted everyone in that section of the pool other than the boy to start laughing, including the mother. I bent over to speak to the boy, and said;

“I’m afraid I’m not a real mermaid, but I’d like to be one.”

I moved away from the pool still chuckling and when I got home 20 minutes later I noticed that I was continuing to smile so long after the event.

The imagination of a child is an amazing thing; the fact that the boy had taken pieces of information that seemingly contradicted each other, such as my ability to swim but not to walk, and string this into what is actually quite a logical conclusion when you really think about it, astounds me to this day.

Image Description: my gold starfish earrings resting on a cream tabletop.