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.

Defining Disability.

Lots of interesting things were discussed at a conference I recently attended, but nothing quite captured my attention as much as the discussion on how disability is defined. The dictionary definition of the word is “a physical or mental condition that limits a person’s movements, senses, or activities”, but this definition has multiple fallacies. Most problematic for me is the use of the word limit, suggesting that our contributions to society are weaker & lesser. It also promotes inaccessibility by making assumptions about our conditions & how that affects our needs.

Furthermore, in my personal experience of disability I am mobile; I can stand or walk. My difficulties arise because I can’t do them for even a short time, nor can I do them frequently, & so I must use a wheelchair to be able to get around. Is time or distance considered a limit under this definition of disability?

Then we have the medical definition of disability. This model of disability defines an illness or disability as the result of a physical condition, which is intrinsic to the individual & which may reduce the individual’s quality of life and cause clear disadvantages to the individual.

This is somewhat more inclusive towards people with chronic illnesses like myself, except that many of these illnesses are still lacking a biochemical or physiological explanation, so could be denied the status of intrinsic physical condition. It also fails to encapsulate environmental factors such as being involved in a traffic accident. While perhaps the physical damage is intrinsic, a large metal box on wheels causing said damage is distinctly extrinsic. In addition and somewhat similar to the dictionary definition, there is also an emphasis on disadvantages & limitations. Once again, we are weak & pitiful creatures with nothing to offer, & nothing can be done to help us.

Finally, we have the social definition of disability, as developed by the World Health Organisation in 2001. They state disability to be an umbrella term for impairments (problematic body function or structure), activity limitations, & participant restrictions. Quite how the last two points differ I’m still unclear upon, but what does come across in some of the examples used to explain them is that these limitations are not always intrinsic. For every aspect of disability like pain or fatigue is another aspect beyond our control, imposed upon us by an inaccessible society.

If you are a wheelchair user, a step is a barrier. There are ways of overcoming said barrier, namely a ramp. For a flight of steps a lift is often more appropriate, & as simply as that, the barrier is removed.

If you have a visual impairment, reading written words can be a barrier. A screen reader or braille can overcome that barrier.

If you have a hearing impairment, sign language or subtitles can overcome that barrier.

What comes to light through this social model, although it is by no means perfect, is that society is as disabling as the conditions that ail us. With the proper inclusion of accessibility features, many barriers can be reduced or removed altogether. At the end of the day disability will always be a disadvantage, but does it really have to be as big of a disadvantage as it is right now?

Saturday Streamer Starts Tomorrow!

Don’t forget to log into Twitter (@WheelsofSteer) tomorrow at 6 pm (BST) for my first livestream! You’ll get an exclusive look around my new home, an update of my health, & an introduction on how I plan to run these livestreams every other Saturday.

Living in Leeds: Saturday Streamer. 6 pm BST on Twitter.

Wheels Ahoy: Yet Another Short Story.

“What’s the weather forecast, lad?” the captain said in his gruff voice.

“I’ll just check, cap’n,” the first mate, a young man in his early twenties, replied. He crossed the captains’ spacious cabin, opened the wooden door, and peered up at the mast.

“What be the weather on the horizon, laddie?” the first mate bawled up at the cabin boy who was perched in the crows’ nest, buffeted by the strong winds.

“Looks like there be another storm comin’” came the faint response.

“Another storm comin’ by the look of it, cap’n,” the first mate said as he re-entered the captains’ quarters, receiving an exasperated sigh in response. As if in confirmation of the first mates words, the captain felt the swell of the sea increase beneath him.

“We’ll have to go to port soon, then, I doubt the Rolly Roger can take much more of this.”

“Aye, cap’n,” the first mate said, bending over the map spread over the desk, “the nearest be one days’ good sailin’ away sir.”

“That’d be sailin’ in good weather, lad,” the captain replied, then paused in thought, “I’ll take the helm ‘til the storm hits.”

“Aye aye cap’n.”

The captain moved away from his desk to reveal a specially crafted wooden chair, with two small cart-wheels where the legs would normally have been. It did not look especially comfortable and was even slightly askew, but the captain was accustomed to it and didn’t even seem to mind the frequent splinters all over his hands from contact with the wheels. He turned awkwardly to move around the desk, then headed to the door of the cabin which the first mate held open for him.

“Afternoon men,” the captain roared heartily as he emerged on deck.

“Aye aye cap’n,” came the chorus response.

The captain headed towards the ladder leading up to the helm, stopping in front of two large, impassive men stationed there. Not a word was needed. One man carefully lifted the captain from his wheelchair, and started to ascend the ladder in a balancing act that was uncomfortable to watch, and the other had the equally cumbersome task of carrying the wheelchair. At the top of the ladder the captain was gently set back in his wheelchair. This procedure, unusual as it was, did not attract much attention as the crew of the ship were accustomed to the captains’ condition, just as he was to his wheelchair.

The captain took his place by the wheel, which was set lower than was conventional so that the captain could reach it comfortably. The dark clouds on the horizon were creeping forward, consuming more and more of the clear, summer sky, and the wind was growing noticeably stronger. Overhead seagulls circled in the sky, screeching and occasionally dive-bombing the poor cabin boy who was still not relieved of duty in the crows’ nest.

The captain stretched out his arms so that the back of his hands were visible, his thumbs stretched out at right angles to his fingers. On the left hand a “P” had been tattooed indicating “port”, and on his right an “S” for starboard.

“To port!” he called to his men, who then had the unenviable task of coaxing the old, heavy ship to turn.

Once the ship was set to the right course a flurry of action ensued as the sails were folded away to prevent them from becoming damaged in the storm. Finally the cabin boy was allowed to scramble down the rigging, his bare feet slipping on the ropes. About half way down in the transfer between two adjacent sets of rigging, he slipped and fell, landing with a loud, wet thump on the deck besides the captain.

“Careful laddie,” the captain looked down at the bedraggled boy, “that’s how I ended up in this thing.”

“I’m good, cap’n,” the cabin boy croaked.

The first mate came scurrying up the ladder to the captains’ side.

“I suggest you go inside before the storm hits, cap’n,” he offered, “I’ll take the helm.”

“I can make my own decisions, lad,” the captain said before turning to the men stationed by the ladder, “First mate on the helm, we all know what happened the last time I got caught up here in a storm.” He eyed the messy patchwork of wooden shingles and nails that covered the hole his old wheelchair had made when it rolled off the deck in a storm. Then began the process of getting both the captain and his wheelchair safely down the ladder, which with the swell now picking up was particularly tricky. Once he was down on the main deck again the captain returned to his cabin, accompanied by the cabin boy to serve some much-needed rum.

The captain relished in the relative warmth of his cabin, a mug full of rum in his hand, watching the stormy sea slap the sides of the ship with increasing ferocity. Slowly the day darkened into night, and the ships’ cook brought a plateful of warm food up to the captain. Sometime after finishing his meal alone in his cabin the captain fell asleep, only to be awoken by his wheelchair sliding backwards until it hit the cabin wall with a substantial impact. As he wearily looked around the room the floor tilted the other way, and the captain rolled across the cabin to the other wall, which he had barely collided with before the motion reversed. Around his wheels, empty rum bottles clinked and clattered as they travelled with him back and forth.

With a tired sigh the captain turned his wheelchair perpendicular to the waves in an attempt to stop the distressing movement, but the force of the waves overturned his wheelchair completely, leaving him in a heap on the floor pummelled by empty rum bottles. Despite the obvious discomfort the captain was tired and drunk enough to return to sleep, and when he awoke once more the worst of the storm had passed.

***

“Land ahoy!” the shout from the crows’ nest was audible from within the cabin as the captain sat himself upright, leaning against his desk. His wheelchair had ended up in the far corner of the office, still overturned. He was about to start the laborious process of crawling over to it when the cabin doors burst open and the first mate thundered into the room.

“Did your parents not teach you to knock?” the captain tried to sound disgruntled, despite being secretly pleased that help had arrived.

“I didn’t have none, cap’n, I was brought up in an orphanage,” the first mate failed to realise the rhetorical nature of the question as he scurried over to the captain, “You alright?”

“Of course I’m fine, lad, I’ve ‘ad worse,” he paused dramatically, “Have I not told you of the time I-“

“Single-handedly fought off the kraken and saved a hundred pirates’ lives, including that of Blackbeard himself, all from a wheelchair? Yes, cap’n, you have, many times,” the first mate replied as he set the wheelchair upright, and pushed it to the captains’ side before gently helping him into it.

“We’ll be dockin’ this afternoon, cap’n,” the first mate said as he left the cabin again.

***

As the Rolly Roger drew into port, the captain was uncomfortably aware of the many staring men and women as he sat at the helm of the ship. The crews of other ships stopped their work briefly to gawp as he drifted past, trying to ignore a thousand eyes staring into what felt like his soul. Once the ship was still and the gangway down the captain was lifted onto the deck once more, and then had to make the precarious journey over, the narrow gangway from ship to shore. Once on the jetty the captain was approached by a man who looked as if the last time he had had any fun had been in a previous life, in which he had also been a slug.

“No wheeled contraptions on the jetty, it damages the wood,” the man pointed at the wheelchair, failing to address the captain appropriately.

“And what would one ‘ave me do?” the captain replied in a mockingly eloquent tone, “levitate?”

A few people tending to a ship on the other side of the jetty sniggered, which only served to annoy the man even more.

“We’re just here to pick up some stuff from the market and we’ll be gone again tomorrow,” the captain said icily, “I have no intention of staying for long.”

“Well someone else will have to do it. Now if you won’t be reasonable I’m sure your captain will. Where is he?” the man snarled back.

“You’re talking to ‘im, you mollycoddled, do-gooding landlubber,” the captain said fiercely.

“I’m not sure your captain would appreciate such humour,” the man replied.

From the deck of the ship the first mate had watched the exchange and finally decided to put the pompous fool in his place.

“Captain!” he called, “what should I do with this ‘ere plague-ridden, fleabag rat?”

“Just throw ‘im ashore,” the captain called back, trying not to look too smug.

“Oh goodness, captain I do apologise. You must understand, your case is so unusual-“

“Oh I know, lose a leg and everyone thinks you’re a legendary warrior, lose movement in your legs and everyone wonders where your brain got to. Now, are you going to let me pass or not?” the captain interrupted and his adversary stood meekly to one side.

In the village the captain wandered around the cobbled market place, occasionally getting stuck on the uneven ground, sending his men to collect the necessary supplies. At the very edge of the market was a stall that caught the captain’s attention. It was laden down with precious stones of every imaginable shape, size, and colour, some set into jewellery, and some on their own. The vendor behind the stall saw his potential customer and immediately set to work.

“Healing stones, get your healing stones here! Make blind men walk and lame men see – no, hang on, blind men see and lame men walk,” on the last point he looked directly at the captain.

“What do I do?” the captain asked, “Swallow one?”

“No, no, sir. They are charmed with the blessings of healing spirits-“

“Ah it’s a long time since I was on the receiving end of any blessings, I think I’ll pass,” the captain turned away and set off towards the harbour again, his crew following him with all that they had bought.

***

The captain was the last to traverse the gangway. As he started to make his way over the path barely wider than his wheelchair he noticed a beautiful woman dressed in the latest fashions walking along one of the walls overlooking the port, her luscious curls falling almost to her waist. Distracted, it did not take much for his wheelchair to go off course, and before he knew it the captain was plunged into the cold, scummy waters below. Seconds later he was joined by the first mate, who having seen the captains’ fall had dived into the murky waters without a second thought, and he heaved the captain to the surface. As air once again touched the captains’ face he took a great, gasping breath, and then proceeded to cough what little water had entered his lungs back into the ocean. Still coughing and gasping, two crewmen who had returned to the jetty to help the captain heaved him up, where he lay flat on his back soaking the wood beneath him. The first mate dived back into the waters, staying below the surface for almost a minute before resurfacing.

“The wheelchair’s gone,” he said as he pulled himself onto the jetty, “I’ll ‘ave to build a new’un. Take the cap’n aboard while I go in search of materials.”

The two crewmen carried the bedraggled captain onto the ship, leaving a trail of wet wood in his wake. They dragged him to his cabin and placed him on the bed and the cabin boy was instructed to give the captain clean, dry clothes.

By the time the first mate returned from town, having spent all the gold from their past three lootings altogether, the captain was warm and dry if a little shaken. The crew spent the entire afternoon crafting a new wheelchair for the captain, taking until sunset to complete the task. As darkness fell the first mate pushed the new wheelchair into the captains’ cabin.

“There you go, cap’n,” the first mate presented the chair proudly, “We’ve got t’wheels even this time so it won’t be slightly askew.”

“Ah now that’s a welcome relief, thank you,” the captain smiled to the first mate as he was lifted into his new chair, “By the way, as reward for ya work today our next task will be t’seize another ship.”

There was a pause.

“A new ship, cap’n?” the first mate queried.

“Aye I’m promoting you to captain of your own ship, lad,” the captain grinned, showing off a full set of rotten teeth, “The crews’ big enough to divide between two ships.”

It took a minute for the news to sink in, but when it did, a warm grin spread across the first mates’ face. The captain took on a serious tone again.

“We leave at dawn.”

A Trip to the Dark Side.

As my alarm burst into life at 5.30 am I began to regret my decision to go to Manchester (which is in Lancashire, the sworn enemy of Yorkshire, for anyone who doesn’t reside in the UK) for a conference on disability & LGBT+ intersectionality. I scoffed down some cereal & coffee, washed & dressed hurriedly, & carefully pinned my hair into something resembling a neat hairstyle. Within an hour I was making my way down to Leeds train station where I met my colleague, & together we wove our way between the extensive building works scattered around the ticket hall. Commuter traffic began to increase as we headed to the platform, which involved a lot of ducking under backpacks & around important-looking men in suits who looked down their noses at everyone else.

Black & white selfie. My hair is in a bun on the back of my head & I'm wearing light eye make-up & lipstick.

My colleague & I had booked a ramp to enter the train, instead of relying on mythical levitation tactics, & to my surprise a porter carrying a ramp appeared with time to spare. The ramp was set up without a fuss & soon enough I was on the train heading to Manchester. Funnily enough, I was in the 2nd wheelchair space opposite another wheelchair user, who as it transpired, was heading to the same conference.

A little under an hour later we disembarked without problem, & I pulled on my raincoat as the first drops began to fall. Sheltered outside a small, inaccessible coffee shop we began to call taxi companies. The first company didn’t take wheelchairs at all. The second only took manual wheelchairs that could fold up. The third only had one wheelchair-accessible vehicle which had been booked. The fourth didn’t even answer the phone. In the pouring rain we headed onto a main road & hailed a black cab, & then spent a good 5 minutes finding a suitable place for the taxi to pull over & let me in. The taxi driver lowered the ramp, barely wider than the wheelchair & with no edges to stop me falling off. With great care I edged up the ramp & sat in the taxi. There were no restraints for the wheelchair so I was forced to brace myself as best as I could while we drove through the city centre.

Eventually the taxi came to a stop nowhere near the venue, & I was forced to reverse down the horrendous ramp, leaving a puddle of rain water in the cab. The rain lessened as we hurried to the conference centre, where I saw two sets of revolving doors.

Revolving doors are to wheelchair users what Shakespeare is to infants; a complete waste of time & resources (in fact, I suspect many adults feel this way about Shakespeare too). There were automated double doors between them however, so naturally I went to those.

“Call reception” was the only button for the doors. In the rain I rang the bell & waited while the receptionist finished having her coffee & chat before the doors eventually opened. Then there was a second set of doors, & again I had to call reception & wait to get in. The fact that able-bodied individuals could come & go as they pleased curtesy of the revolving doors, but that I as a disabled person had to be let in like a dog, was infuriating. I was attending a conference about disability that had disabled speakers, & yet ableism was the first thing I faced.

I made my way to the reception desk where the member of staff told me I hadn’t registered (I had, or I wouldn’t have had the ticket with me) because they had missed my name when creating visitor badges. I got a blank & wrote down my name, then had one small cup of coffee. In that short time I was recognised by the first of several readers & followers, something which was a very new & novel experience, which I must admit to enjoying. Then the conference began.

The opening screen of the conference presentation, projected onto a pull-down screen in the sports hall.

As we sat around tables in a chilly sports hall the leaders introduced themselves, & then the first talk about the social & medical models of disability was underway. An hour later we broke off into smaller groups for more interactive workshops, & I remained in the sports hall to look at how being a marginalised group within a marginalised group (i.e. being disabled among the LGBT+ community, or being LGBT+ among the disabled community) effected social interactions, while my colleague made her way upstairs. After the morning’s work we were directed to lunch, a buffet which was impossible to reach from a wheelchair, & went to eat in a dining area filled with long wooden tables & long wooden benches, the type that cannot be moved to accommodate a wheelchair user. I chose to get out of my wheelchair & sit with my colleague, but the others were forced to eat in a separate area with their lunch. I regretted not joining them to make a point, although it did mean that I was nearby when the assistance-dog in training decided to take a nap on the floor.

A black Labrador, assistance dog in training, resting on a patch of sunlight on the floor.

After lunch was a short talk before another workshop. This time I made my way upstairs, having to wait some considerable time for the lift as at least 1 wasn’t working. In the room a member of staff stood in the only space available to reach from a wheelchair due to the cramming of furniture into a small space, & once she did move I had to kick a chair out of the way. Shattered, I barely took in the next session, not least because they decided to over-run into a much-needed break.

I made my way back downstairs for the final session, once again in the sports hall. This one addressed discrimination that can be experienced within marginalised groups, particularly racism, ableism, & transphobia within the LGBT+ community. It is the only time I have ever seen Grindr screenshots used to make a poignant statement.

Afterwards there was a drinks reception, which was ironically one of the most accessible parts of the day, & slowly we drifted away. Myself & my colleague wandered through Manchester, the day having turned bright & sunny, & we stopped for a drink purely for the purposes of hydration. We waited until the commuter traffic had tailed off before heading to Manchester Piccadilly station, & this time we had the cabin to ourselves when we entered the train (also without incident).

A little while later as we pulled into Leeds it was going dark, & the station was the quietest I have ever seen. A ramp appeared as if by magic, & I said goodbye to my colleague who caught a taxi home, this time having no trouble whatsoever as I wasn’t travelling with her. About ten minutes later I was home myself, & not long after that, asleep.