diaryofadisabledperson

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?

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 2^nd 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.

Inside the building, looking up a large flight of steps towards the library, with sunlight pouring through the glass roof.

Outside the building. Taken from across the road under a blue sky, this photo shows the block building with a glass front, & grey tiles patterning the other walls.

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).

Inside Manchester Piccadilly train station, looking up at the departure board underneath the translucent ceiling.

A red berry mojito, mint leaf included, in a tall glass.

Inside the cocktail bar. The maroon ceiling is high with cream, spherical lamp-shades dangling from it. The chairs are mismatched around similar tables, & there are a handful of people at the bar.

A path between two trees, framing a grassy space in central Manchester.

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.

Big Brother.

The Department of Work & Pensions are best described as a necessary evil, & that’s being generous. You’d think that an organisation that is supposed to support people in finding employment & aiding us in retirement would be well-loved, but the fact of the matter is that much like the NHS, the idea has outshone the execution.

Lots of people have cause to dislike the DWP, but the hostilities are perhaps felt most strongly among disabled people. Simply put, the majority of us live in fear of them.

At the time of writing I’m on the higher mobility rate of Personal Independence Payment & get nothing for the care rate. My powered wheelchair, without which I couldn’t go to work, is paid for on a scheme that takes the money from my monthly allowance before I have received it, and the little that’s left over goes towards (but by no means pays for) medication, other mobility aids, & transport. When this contract comes to an end, I plan not to renew it, but to buy my own wheelchair independently. Why? Because all it would take is someone from the DWP to put my benefit up for early review & the rate be dropped, & I would lose my wheelchair instantaneously.

This may seem paranoid but multiple acquaintances of mine have already experienced this, & the cases reported in the news demonstrate that this is not as rare as you would think.

CCTV footage from public places, particularly supermarkets, has been used as evidence in court to show that someone is not disabled on multiple occasions. On the surface this might seem sensible, or at the very least, not objection-worthy. However, despite clearly stating on my application form that I am capable of standing up & walking short distances with support, & that my condition varies greatly day-to-day, I still find myself looking for all the CCTV cameras in a store when I’m on my walking frame. I worry that I don’t look disabled enough, particularly on days when I feel well. Quite frankly it is like living under the judgemental gaze of George Orwell’s Big Brother.

At this point people like to argue that if you’ve done nothing wrong, you have nothing to fear. I wish this was true but I fear wrongly convicted criminals might feel a little differently. The fact of the matter is that while in a court of law you are innocent until proven guilty, the reverse seems to be true for disabled people.

For example, I have to watch what I post online, which for someone with a blog about disability is rather contradictory. I like to take photos of my outfits for Instagram, but I’ve taken to sitting down for most of these out of fear that someone could take a snapshot quickly taken before sitting back down, & use it to claim I’m lying. Every picture & comment becomes a calculated risk, & even this blog post is no exception.

Even being called back for your review assessment after the assigned period of time since the last one is dehumanising. Assessment centres are often inaccessible, but your application will be denied automatically if you fail to attend.

Even if you do make it into your assessment, the assessor is not the one who makes the decision about your benefit; this decision is made by someone who has never met you. They take the assessors report, look at any other evidence you have managed to supply (the majority of which they will tell you is ineligible due to arbitrary reasons), & having never seen how you have to live will make a decision that controls how you live for the next few years. Appealing poor decisions takes months, is highly stressful, & everything you say & do is subject to scrutiny for the duration of the procedure. Anyone who does choose to appeal is made to feel like a criminal.

Disabled people are not criminals. Being disabled is not a crime. Yet it is demanded of us that we repeatedly prove our innocence. Under any other circumstances this would be deemed diabolical, yet it is how many of us, myself included, must live.

Rob the Roller: Yet Another Short Story.

The sound of van doors slamming signified Rob’s arrival. The builders leant casually against the fence, taking great swigs of tea as Rob glided across the muddy yard towards them.

“Morning Rob,” Tyler, one of the builders who was forever receiving comments about how apt his name was for his profession, said as he handed Rob a steaming cup of tea as supplied by the owners of the plot of land they were working on.

“Morning lads,” Rob accepted his tea with a nod as he addressed the team; “What’s the situation today?”

“We ought to get the concrete foundation laid while it’s still dry,” Jess, the only woman in the group, answered.

“And someone needs to check the deliveries,” Seb piped up.

“Right, well, I’ll get that delivery sorted while you prepare to lay the concrete,” Rob looked around the group who all nodded. Draining the last of his drink, Rob got to work.

Checking the delivery and recording all the items in the inventory and finance records was a long, arduous, and particularly boring task, but laying concrete from a wheelchair was even worse. Rob sat in the shelter of a tarpaulin sheet stretched over the corner of the yard they were working in, feeling drops of water fall from the edge of the sheet onto his head and trickle down his back. Occasionally a member of the team would bring him another drink, for which he was grateful as the hours dragged slowly by.

He had almost completed the whole process when his pencil snapped, and to his dismay Rob found all of his pockets devoid of any pencils. Rob sighed loudly, turned around, and started to roll back across the yard.

“Rob!” hearing someone shout his name, Rob looked up suddenly.

“The concrete, it’s still wet,” Jess yelled.

“You’ve laid it already?” Rob said, surprised. He felt his wheels sink slowly into something, the resistance against them increasing as he tried to propel himself forward, “Great.”

Seb and Tyler came running towards Rob, and started to pull him backwards onto dry land. After a few minutes of heaving, straining, sweating, and swearing they managed to pull him to safety. Rob looked down at his wheels covered in grey slime, which he ineffectively tried to brush off.

“It’ll be easier to get off when it’s dry,” Jess came towards the men with a tray of fresh drinks.

“Thanks Jess,” Rob said dejectedly, inspecting the damage done by his carelessness. Four tire tracks cut harshly in the otherwise perfectly smooth concrete, two narrow and close together from his front wheels, and two larger and wider apart at the back. Lining each track was a small pile of wet concrete that had been pushed aside, and even the patterns from the tires had been imprinted into the concrete. Alongside the tracks were two large sets of footsteps, in many cases elongated as the men slipped and slid in their efforts to rescue Rob.

“Don’t worry, we can fix this,” Seb put his hand on Robs’ shoulder, seeing the miserable expression on his face.

“Any of you lot got a pencil I can borrow?” Rob asked after a short while.

“Sure,” Tyler passed a pencil to Rob, who returned to complete the inventory, leaving the others smooth over the damaged concrete to the best of their abilities and fill in the holes. By the end of the day the inventory was complete, the materials had been sorted carefully depending on what materials would be needed first, and the holes in the concrete were barely perceptible. They all left the building site a little earlier than their usual time, leaving the concrete undisturbed to set overnight.

***

Rob was the first of the team on site the next morning, and the site that met his eyes made him curse violently and vehemently.

“Damn that stupid bird,” he yelled, in between other, less repeatable statements. In the concrete the tracks of a single bird hopping across the yard could be seen, going all the way from one corner to the other.

Next to arrive was Jess, then Seb, and then Tyler.

“What’s on the cards today?” Rob said as he swigged his usual cup of tea.

“Fill in those holes,” Tyler pointed out the obvious, looking at the concrete.

“And then it’s time for bricks and mortar,” Seb said.

Half an hour later the birds footsteps had been filled in, and together they were building the walls of the garage. The four of them carefully laid the bricks by hand, smoothing down the mortar that held them together. The banter between them was light and friendly, with Jess supplying music via an old, beat-up radio with an extension cable leading into the landowners house. Slowly the wall grew to one foot high, then two feet, and by the end of the day it was three feet high.

The next day Rob could no longer reach the top of the wall to add more bricks, so spent his time as a human wheelbarrow, fetching a load of bricks across on his knees and handing them up to the rest of the team. His thighs soon bore the bruises of this task.

The following day, Jess, Seb, and Tyler all needed to use stepladders to continue their work, until finally the wall was a staggering 7 feet tall.

Next came the flat, plywood panels that were the ceiling of the garage, punched into place with a nail gun and hiding the ugly steel rafters that would support the garage roof. This was covered in tarpaulin while some scaffolding was set up around the garage. At one end of the scaffolding was a strange system of pulleys, one end splitting into four chains each bearing their own hook, and the other end with a sack of bricks wedged into a tractor tyre tied to it. The family who lived in the house were perplexed, but were too British to inquire about this. They were to get their answer the following morning.

As always the morning discussion of the tasks to do that day took place over the cups of tea, and then they set to work. The family watched from behind semi-closed curtains as Rob approached the pulley system, and Tyler helped him hook the chains securely to various anchor points on his wheelchair. Seb and Jess clambered up the scaffolding to the top, stopping by the brick-filled tyre which they hauled onto its side.

“Ready?” Jess called down.

“Ready,” came the reply from below.

“1… 2… 3,” Jess counted slowly as Seb and herself rolled the wheel towards the edge of the scaffolding simultaneously. The wheel reached the edge of the wooden platform, teetered for a second, and then plunged towards the ground. The rope uncoiled, stretching out until taut, and then sent Rob soaring upwards towards Seb and Jess, who caught his wheelchair and pulled it safely onto the platform before unhooking his wheelchair from the pulley. Inside the house the family watched in amazement.

Tyler untied the tyre from the pulley system as the team formed a human factory line. Tyler put heavy roof tiles in a sturdy bucket which was hauled up the scaffolding by Jess and Rob using the pulley system. They unloaded the bucket onto the platform, and Seb began to lay each tile along the roof, one by one. The empty bucket was returned to Tyler and refilled, repeating the process until all the tiles were safely by the roof.

Tyler hopped up the scaffolding to join the team as they all set to laying the tiles. Once they had gone too high for Rob to reach, he took to carrying the tiles to the rest of the team while they built the roof. Working together in a swift manner as they had done so many times before, they completed the roof in a surprisingly quick time. It was at this point that it started to rain.

The rain was torrential, beating down on the team with extraordinary force. Rob’s lap was soaked within minutes, and Jess’s hair clung to her face and neck. Tyler scrambled down the scaffolding, slipping once or twice, but reached the bottom unharmed. He removed the bricks from the centre of the tyre, re-attached the tyre to the end of the rope, and waited for the others’ signal. On the scaffolding above Seb and Jess were fumbling with the hooks on Rob’s wheelchair, barely able to see as the water streamed down their faces. After a few minutes their faces appeared over the edge of the platform, Seb giving a thumbs up to Tyler below.

Rob was pushed gently over the edge, Tyler gripping the wet tyre to the best of his abilities. Slowly and carefully the team started to lower Rob to the ground, Tyler gripping the tyre with all his might as he clambered back up the scaffolding slowly. However, keeping his grip on the tyre in the downpour was akin to fighting a losing battle, and almost inevitably the tyre slipped through his fingers. Rob felt the ground disappear from beneath him, his stomach turning with the sudden motion as he fell. He braced for impact, scrunching his eyes shut.

His wheelchair halted mere inches above the ground, swinging slowly back and forth on the end of the pulley. Rob slowly relaxed his tense muscles and opened his eyes. He looked up.

“It’s jammed!” Seb called down, “the pulley’s jammed!”

The family from the house came rushing out into the storm, concerned about Rob.

“Are you OK?” the mother asked, her hair already soaked.

“Yeah, yeah, I’m fine,” Rob tried to sound as dignified as someone could in his situation.

“Do you need some oil?” the father called up to the rest of the team who were trying to release the pulley.

“I think there’s some in the van,” Jess climbed down, keys in hand.

“I’ll get it,” one of the children, a boy of about 10 or 11 piped up, running over to the van which Jess opened for him. A minute later he was back with a large can of oil.

“Thanks kid,” Jess handed the oil up to Seb.

“Best step back,” Tyler said as he descended. He and Jess stood either side of the wheelchair, holding two of the chains that secured Robs’ wheelchair each. Seb oiled the pulley system, making a mess due to the low visibility in the rain. Tyler and Jess braced themselves to suddenly take the weight of the wheelchair. They felt the pulley give, but were able to gently lower Rob to the ground without a severe impact.

Rob uttered a quiet thanks, embarrassed that the family had seen the whole affair.

“Right, folks,” Seb said as he hopped down from the scaffolding, “We’ll be back next week to add the final touches, and then we’ll be done.”

“Good to hear,” the mother said politely, “let’s hope this rain stops.”

***

The following Monday was dry but over-cast as Rob rolled into work. Leant against the fences surrounding the house was a large garage door, complete with tracks that would need attaching to the ceiling. As he inspected them, Jess came out of the house carrying the inevitable cup of tea.

“Morning Rob, how you feeling?” she asked cheerfully. Rob had always marvelled at her ability to cope with mornings.

“Okay, thanks, bit bruised,” he replied.

“Naturally,” she said.

An hour later the team were busy fitting the tracks for the garage door. They were very fiddly and Seb had already cut his finger once, the plaster barely sticking to the wound. With much stretching and swearing the tracks were eventually in place. Rob went to get the garage door, which he dragged along behind him making a loud, grating sound. The door was a lot easier to get into place than the tracks had been, and within the hour it was ready to be tested.

Rob turned the key in the lock to check it worked, then took hold of the handle and heaved the door upwards. It swung outwards, moving along the tracks. As the door approached a 45° angle, the mechanism that would pull the door the rest of the way activated. Caught by surprise at the strength and speed of this mechanism, Rob didn’t let go in time, and ended up hanging mid-air holding on to the door which was now parallel to the floor.

“Err…guys?” Rob said, his arms already beginning to ache, “I’d say the auto-help mechanism works.”

In response he heard barely muffled laughter behind him, until Jess flung her head back and let out a huge roar of laughter. This set off Seb and Tyler, and even Rob himself began to chuckle as he clung on in desperation. His arms were burning with lactic acid now, and he could feel his fingers slipping slowly.

“Guys, seriously, this is funny but I need a hand here,” Rob said.

Still laughing, Tyler and Seb grabbed hold of either side of the wheelchair, while Jess placed her hands on his back to stop him over-turning.

“3… 2… 1… okay, let go Rob,” Seb instructed. Slowly Rob uncurled his fingers, until his entire weight was balanced precariously on his colleagues. Between them they managed to set the wheelchair on the ground gently, before bursting with laughter once more. Rob couldn’t help but join them as once again the concerned family came hurrying out of the house.

“Minor height issue,” Rob said in response to their puzzled expressions.

“We’re done, just need to clear up the tools,” Seb said as he struggled to control his laughter.

“Cool, well, you’ll have the payment within the week,” the father extended his hand for a hand-shake.

Slowly the tools were packed away and the yard swept. Finally, with everything loaded into their respective vans, Rob rolled down his window.

“Alright folks, you know our number should you have any problems,” he called to the family. They stood on the steps and waved as the team drove off, until they turned a corner and were no longer visible.

“Let’s call it a day, folks,” Rob said into his hands-free mobile set that he mainly used to talk to the team while driving, “Early start tomorrow. That Victorian villa won’t renovate itself…”

The D-Word.

With each generation language evolves, & one of the driving factors behind this change is the words we use to describe each other. While the n-word was once a common term for people of colour, most white people today will never let the word pass their lips. When I was at school, we were taught not to use the term faggot due to it’s homophobic connotations. Finally, it seems that the focus has shifted onto how we talk about disability.

Disabled people frequently refer to themselves as disabled. I mean, you are currently reading Diary of a Disabled Person (for which I thank you). We are comfortable with the word disabled as it hasn’t been used as an insult very often, & it neatly describes the vast range of conditions & characteristics that can render someone disabled. However, most “ableds” seem to disagree. They think that referring to ourselves as disabled is demeaning and belittles us, when in actuality, denying us the right to determine how we are described for ourselves is far more belittling.

So, if we’re not supposed to call ourselves disabled, what do we say? Differently abled is a common suggestion, although my personal favourite is access inclusion seekers. Both of them are long-winded & can hardly be said to roll off the tongue, & the former implies that no matter what resources are made available to me, I simply cannot function on their level. The latter is just an excuse to be inaccessible given that, if everywhere were accessible & inclusive, we would have nothing to seek.

It should also be noted that I’ve already purchased the domain name Diary of a Disabled Person, and I had the word disability permanently etched onto my skin (along with some other words).

More specifically to those of us who have wheels, it is still common to hear wheelchair-bound being used to describe us. Bound has lots of problematic connotations, such as being limited by our wheelchairs, or perpetuating the stereotype that all of us are paralysed from the waist down & cannot walk or stand at all. The term wheelchair-user is significantly preferred by those of us who use them, but we are shouted down as we couldn’t possibly know for ourselves what we want.

If the reluctance to use the word disabled wasn’t bad enough, there are words still in use that generations of disabled people have said are unacceptable. Retard. Spaz. Cripple. More recently, idiot, a term that I still find slips out far more often than I’d like. These are the words with offensive connotations that we want people to stop using, yet this is ignored and the term we want is denied to us. Is there anything more patronising than out desires being over-ridden in favour of someone who knows nothing about our realities?

If people want to support the disabled, they need to start by listening to us. They need to start respecting our wants and needs. They need to stop condemning things which shouldn’t be condemned, & start shouting down those who park on pavements & block access routes, those who treat us as if we were a particularly unintelligent toddler, or those who make us invisible. They need to start with the man in the mirror (sorry, couldn’t resist).