And Blessed Yuletide, and Happy Hanukkah!
Tag: Disability
Jingle Wheels: Another Christmas Story.
It was Christmas eve, & Santa’s workshop was a flurry of activity. The last of the presents were being wrapped in shiny paper with glittering ribbons, & loaded onto the sleigh like a festive game of Tetris. In the corner the reindeer were being fed & groomed, & Rudolph was standing still patiently as an elf helped him into his high-vis vest, which was only marginally brighter than his nose. On the back of the vest were emblazoned the words;
Service Reindeer. Do Not Pet.
In the bedroom Mrs Claus was helping her husband into his boots.
“Have you got everything?” she asked him as she stood up.
“Yes dear,” her husband replied.
“Snow tires?”
“Yes dear.”
“Ramp?”
“Yes dear.”
“Wheelchair bag?”
“Yes dear.”
“Wheelchair charger?”
“Yes dear.”
“Plastic straws? You won’t be able to drink all that milk with those horrible paper ones, they just dissolve.”
“Yes dear.”
“And don’t forget you have an appearance at the children’s hospital.”
“Yes dear.”
“Does this pinafore make me look funny?”
“Ye – no dear,” Santa quickly corrected himself before landing himself in hot water.
Mrs Claus bent over & kissed her husband on the forehead, smoothed down his infamous red hat, & opened the door. Santa wheeled forwards into the chaos of the workshop, & Rudolph trotted to his side instantly. Together they crossed the floor towards the sleigh, Rudolph ensuring the path was clear of obstacles & elves. They came to a halt as the final present was loaded onto the sleigh.
Rudolph didn’t need prompting; he trotted forwards & nudged a button on the back of the sleigh. With an electric whine the back of the sleigh slowly folded outwards into a ramp. Santa drove forwards in his powered chair, which was decorated with shimmering lights, tinsel, & sleigh-bells, & locked the restraints onto the tethering points on his chassis. Rudolph nudged the button again, & the ramp folded upright into the back of the sleigh, making the sign requesting at least 2 metres be left clear behind the sleigh visible.
Rudolph trotted to the front of the pack of reindeer to act as their navigator, but wasn’t harnessed to the sleigh like the rest as he would be accompanying Santa on the ground. The elves rushed to open to workshop door, & a gust of cold, arctic air ruffled Santa’s beard.
In a loud, clear voice Santa called to the rest of the reindeer;
“Now Roller, Now Whirler, Now Wheeler & Turner!
On Sitter, On Glider, On Access & Sloper!”
Mrs Claus & the elves watched as the sleigh moved forwards, accelerating & rising into the air as dusk fell over Lapland.
***
After a matter of minutes they reached their first stop, Toronto in Canada. They came to a rest on the top level of a multi-story car park in the North of the city; roofs were no longer an option as Santa had a tendency to tip his wheelchair to the side if he wasn’t careful. Rudolph deployed the ramp & joined Santa as they crossed to the lift by the staircase. To their dismay, a sign that looked as if it had been up for months said “Out of Order.” Both reindeer & man rolled their eyes simultaneously & returned to the sleigh, where to their dismay they saw a van parked inches from the back of the sleigh.
“Excuse me, sir?” Santa called to the driver who had his window half rolled down, with a cigarette dangling from his hand.
“Yeah?” the driver said lazily.
“The sign on the back of my sleigh says not to park so close!”
“I’ll only be here a minute,” the driver shrugged.
“But you could have parked anywhere else!”
“I’ll be here longer if you argue,” the driver made the effort to look down briefly at Santa.
“I really don’t have a minute to spare,” Santa said.
“Oh what? Like you’re the real Santa? In a wheelchair?” the driver had a mocking tone.
“Fine,” Santa sighed. Rudolph gave the driver a contemptuous snort before trotting to the front of the sleigh & guiding the rest of the reindeer forwards. The ramp was deployed & Santa seated on his sled as the van driver watched with something approaching interest. They left & headed to another car park, where fortunately the lift was still working.
Santa’s wheelchair bag was bulging with gifts & Rudolph carried the temporary ramp as they traversed the city, going from house to house. It was hard to be stealthy when everywhere you went, you were accompanied by an electronic whine, but Santa managed to avoid any awkward interactions with confused children, unlike the year before. Several hours of hard work later, & now with an empty bag, Santa returned to the sleigh.
Off they went, up into the night sky, as Santa mused that Einstein’s theory of relativity did somewhat take the magic out of his ability to fly around the world in a single night, even if the rest of humanity hadn’t cracked the time travel part yet.
***
Next Santa flew all across America, making stops at Philadelphia, New York City, Dallas, Washington DC, San Antonio, San Francisco, Miami, Phoenix, Los Angeles & more, before skipping Las Vegas as no one there had managed to avoid his Naughty List.
Then came the South America’s. Rio de Janeiro was one of Santa’s favourite spots, even if the steep hills did cause him some difficulty.
After touring the entirety of the vast continent, Santa hopped across the Atlantic Ocean to Africa, & steadily made his way up to Europe, stopping in Cairo for a short rest along the way.
Europe was always a quicker continent to do, as many of the nations had the custom of opening their Christmas presents earlier in the month. One of his longest stops was actually one of the smallest nations, the somewhat ironically named United Kingdom.
Santa started on the south coast. Portsmouth was surprisingly accessible despite being a location of historical significance, mainly because it was all flat as a pancake. After traversing the island & then Southsea, Santa began to travel north.
Finding somewhere to park the sleigh in London was always a problem, especially as Santa didn’t have a blue badge meaning disabled parking spaces were off-limits to him, not that that seemed to stop other drivers. Still, the Oxford Street displays were always quite the spectacle.
Next came Birmingham. The Aston Interchange, colloquially known as Spaghetti Junction, always confused the reindeer so Santa avoided passing too close to it. Then they were on to Nottingham, then Leicester, & eventually they crossed the border into the north of the country; Sheffield. It was here he would be making an appearance at the children’s hospital.
Santa was greeted at the doors to the children’s unit by a tired-looking nurse.
“Ah, Santa, you’re here! The children are ever so excited!” she said, trying to muster up enthusiasm, before spotting Rudolph.
“Oh, animals aren’t allowed on the ward,” she added.
“He’s a service animal, ma’am,” Santa replied matter-of-factly.
“It’s a hygiene risk, you understand,” the nurse responded.
Before Santa could reply the doors of the ward opened, & out came a woman carrying a rabbit & two guinea-pigs in “Pets as Therapy” vests.
“Err…” Santa, who had been about to reply that he would make an exception given the nature of the medical conditions the children faced, gave the nurse a questioning look.
“OK, fine, but no messes,” she said, holding open the doors.
“He’s a trained service animal, he knows the rules,” Santa reassured her, rolling through the doors. He reached up for the anti-microbial hand gel, only to find the dispenser was so far up the wall as to be out of his reach. Fortunately, Rudolph was able to press the button for him, & the cold gel slopped down into Santa’s palm.
There were gasps of joy & excitement as Santa entered the ward. He handed a gift to each child, stopping by each bed to wish them a Merry Christmas individually.
At the very end of the ward were the individual rooms, for children so ill they couldn’t share a space with the rest. Rudolph helped Santa don the necessary gowns for hygiene before he entered a room where a little girl was propped up in pillows on the bed. To one side of the bed was a powered wheelchair, which was half obscured by the myriad of tubes she was hooked up to.
As he entered the room the girl’s eyes lit up. Santa gently placed a present on the bed, making sure it was within her reach, & wished her a Merry Christmas.
“You’re like me!” the girl exclaimed, nodding to her wheelchair by the bedside.
“Yes,” Santa replied, “I am.”
“I don’t see many people like me,” the girl said.
“I suppose we’re not very common,” returned Santa.
“They said people like me can’t do anything,” the girl added, “but you’re Santa. You go all over the world!”
“Well, having my own personal sleigh is a little easier than trying to get a wheelchair on an aeroplane,” Santa said jovially.
“When I grow up, I want to be like you,” she said.
“I hope you get to be like me too,” Santa was trying not to blush.
A few minutes later, as he was leaving the ward, the nurse who had greeted him piped up;
“She’s not going to get to grow up, you know.”
“I know,” Santa replied, “but she’s still a child. She’s going to dream.”
As he made his way back to the sleigh, he had to wipe away several tears.
***
Santa travelled all over the north of the UK, making stops in Bradford, Huddersfield, Leeds, York, Hull, Ripon, Bolton, Manchester, Liverpool, Carlisle, Newcastle, & then heading up into Scotland. Once complete he flew back across Europe, heading into Asia via Turkey. Santa progressed further east across Asia, trying not to get disheartened at the war-torn middle East, but finding it hard not to be affected by the inhumanity. Even his reindeer were visibly distressed, although like him they cheered up a little as they made it to China, where the staff at KFC were already preparing for the Christmas day rush.
Eventually Santa was headed to Australia. He changed into lighter-weight clothes to cope with the Summer heat, took the snow-chains off his wheels, & charged up his wheelchair on the way. They landed in Canberra, & after working their way around the city headed on to Sydney. They settled on the top of another multi-story car park, & Rudolph trotted around to lower the ramp. About half-way down there was a disconcerting juddering before it stopped dead, still a couple of inches from the floor.
“Drat,” Santa muttered. Rudolph seemed to agree, & pressed the button a few more times to no avail. Santa pulled his phone from his pocket & called his head engineer, an elf who as it happened, had just gone to bed at home in Lapland.
“Hello,” a groggy voice greeted Santa.
“I thought you said you’d fixed my ramp,” Santa said.
“Oh, err…I though I had,” the engineer said.
“Then why has it got stuck again?” Santa asked.
“Quite hard to tell when you’re half-way across the globe,” the elf replied sarcastically.
Santa didn’t grace the comment with a reply.
“Have you tried kicking it?” the elf asked.
“Really?” Santa asked in an equally sarcastic tone.
“Have you tried getting Rudolph to kick it?” the elf corrected himself.
“Not yet,” Santa replied before turning to his companion, “Give it a good whack for me, chuck.”
Rudolph tapped it gently with his hoof. Nothing happened.
“You might need to give it a bit more welly than that,” Santa said.
Rudolph reared up on his hind legs, & with as much force as he could muster slammed both of his front legs down on the ramp. It juddered back into life.
“Well, that seemed to do the trick,” Santa said down the phone, “but you might need to un-dent it when I get back. Have a good night.”
“Alright, I’ll have a look when you get back, night,” the elf replied tiredly before hanging up.
By the time Santa had made it around Sydney & then the rest of the vast continent, he was beginning to get tired, but he knew he still had to traverse New Zealand before the long ride home. Admittedly he could travel even faster now that the majority of the presents had been delivered, but the mountainous landscape & remote towns that were scattered across both islands made matters complicated, which took a surprisingly long time in comparison to the bigger cities.
Finally, the last present was delivered, & Santa made it back to the sleigh for the final journey home. As the sun began to rise, casting a soft golden light across the land, Santa noticed that something was missing.
“Rudolph,” Santa called, “Where is my ramp?” Rudolph went wide-eyed & seemed to blush under his thick fur.
“You left it at the last house, didn’t you?” Santa asked.
“Well, we can’t go back for it now. The children will see me. I guess you’ll just have to get me one as my Christmas present.”
Rudolph looked down & pawed at the ground.
“Come on, let’s go home, we’re all tired,” Santa said.
***
When Santa landed, the workshop door was already open in preparation for their arrival, & the chief engineer held a spanner in his hand as he leant casually against the wall. Upon deployment the ramp got stuck again, but this was rectified with a quick stomp from the engineer.
“You can leave fixing that for another day,” Santa told the engineer, “it is Christmas, after all.”
The engineer thanked Santa before heading off to spend the day with his own family in Lapland city centre.
Mrs Claus came out to greet a tired Santa, who almost immediately went to bed, as was by now Christmas tradition. The reindeers were brushed & fed, going to their own beds shortly afterwards. Rather ironically, the quietest household on Christmas morning was, as always, the Claus household.
***
At around the time that Santa was going to bed, a family in Alexandra, New Zealand opened their front door to see a metal ramp laid out on their doorstep. The woman who opened the door let out a cry of surprise.
“I can’t see a label on it so I don’t know who it’s from,” the woman turned to her wife, “but we won’t ever need to lift Amelia’s wheelchair down the step again!”
An electric whirring grew louder down the corridor, & a little girl appeared in morning light.
“Merry Christmas, Amy,” the woman said, stepping to one side to show her daughter the best Christmas gift they could have received.
How To Train Your Wheelchair: Part 2.
We entered the restaurant by wandering down a narrow alleyway, the ceiling of which was completely covered in fairy-lights. We settled in with some cocktails as we waited for our evening meal, soaking up the warmth & atmosphere of the place. Eventually we were able to face the cold again, & on our way back to the hotel we stopped at a stack of shipping containers that had been gentrified into a bar with street food.
We were surprised to find that this stack of shipping containers was accessible, including the top floor, albeit via a somewhat rickety lift. We enjoyed some red wine with an old floor tom-tom (drum) for a table, & listened to the live music. As the live session ended, so did our wine, & we decided to make our way back to the hotel. We would have been there much sooner had the lift not got stuck. The poor staff were almost as mortified as I was as they got out the manual crank, reset the system, & were able to get it working again.
Eventually we were safely back in the hotel in time to catch Live at The Apollo.
After a comfortable night’s sleep I woke up at around the same time, & the morning routine was repeated. We made our way back to the Shambles, which marks the start of the York Cat Trail. Since the 19th century cat sculptures have appeared on buildings all around the city centre, which have been turned into a spot-them-all trail. We wove our way between buildings, past shops, over cobbles, & onto bridges, managing to find the majority of the sculptures. Having been outside for quite some time we were very cold, so stopped at a nearby coffee shop before heading to the Christmas Market.
The Christmas Market was fairly busy even mid-week, but that didn’t stop us exploring the many stalls that lined the street. Once again we were outside for quite some time, & by lunchtime we were ready for some warmth again, so headed to a traditional Tudor pub that I could actually get into. What followed was one of the nicest meals I have ever had.
Full to the brim with delicious food, we decided to spend the afternoon exploring local museums. The Dig, an archaeological museum, was lacking in content but not school-children, so we didn’t stay there long before heading to the York Army Museum.
The lift required a member of staff to operate, but to my relief they were prompt, friendly, & capable. We were down into the museum within seconds, & wandered slowly around the exhibits. I’m currently playing a Role-Playing Game set in World War 1, & Jarred being something of a history nerd was able to identify which of the rifles on display had been assigned to my character. I was a little unsettled to see real Nazi artefacts from the second world war on display, but then a letter in another cabinet caught my eye. This letter was written by none other then Florence Nightingale, who almost single-handedly revolutionised modern medicine, & in her later years is suspected to have suffered from the same illness that ails me. Safe to say she’s something of a hero to me. She also had the handwriting of a medic – completely illegible, although fortunately there was a typed version next to it.
The final display case focused on modern warfare (not the video games), including stealth gear which you could try on. Obviously, I had to try it on, albeit with Jarred’s assistance. I present to you a gliding hedge;
When we had made our way around the museum, Jarred had to go upstairs & let the receptionist know that we were ready to leave, but again I was fortunate in that he was prompt in his response. Once we were outside in the cold again, we decided to make our way back to the hotel room. We played another round of The Viking Game, then headed back out to the stack of shipping containers.
It took me a while to choose what I wanted from all the street food on offer, but eventually I settled on some properly-done fried chicken with barbecue sauce. We didn’t venture upstairs this time as I was still wary of the lift.
After our meal we headed towards the nearest accessible pub, which unsurprisingly turned out to be a Wetherspoon’s. A couple of pints of Strongbow Dark Fruits (what? I like it!) & a Christmas dessert later, we were ready to head back to the hotel again where we watched another episode of Live at The Apollo before turning in for the night.
The next morning was the day to go home, & we begrudgingly packed our bags (including Kontroller Kitty), & checked out. We were allowed to store our bags in a safe-room however, as we wanted to get brunch before heading home. We returned to the restaurant from the first night of our little holiday, having enjoyed it very much at the time. All too soon it was time to collect our bags & head to the bus stop. By late afternoon we were back home, Kontroller Kitty had returned to her usual position on the shelf by the PlayStation, & everything was unpacked. We were tired but relaxed, knowing that we both still had a few days before returning to work. We had conserved a little energy though, as the following day we planned to put up the Christmas decorations!
How to Train Your Wheelchair: Part 1.
After a small but much-needed lie-in on a cold Monday morning, it was time to make a move. By which I mean, of course, that my husband provided breakfast in bed. Then it was time to pack. For a short-while the flat looked like it had been ransacked by a troop of toddlers, but soon enough the bags were packed & it was time to go. I went to sit in the warmth of the reception while Jarred locked up. He seemed to take a while to do so, but I guessed he was just being thorough, checking everything was packed & that all the heaters & lamps were switched off.
We made our way through town towards the bus station, stopping for lunch along the way. The bus turned up perfectly on time & soon we were underway. Having only stopped at two stops along the entire journey, we were in York city centre within the hour. We made our way to the hotel, entering as the clock struck 3 pm, our earliest checking-in time. Without a fuss the staff checked us in, & we made our way up in the lift to our room.
I parked my new wheelchair in the perfectly-sized spot between the desk & a set of drawers, & began to unpack. Suddenly, behind me, I heard a high-pitched voice.
“Are we nearly there yet?”
I turned around & immediately doubled-over with laughter, which continued so long my husband began to think he might have actually killed me. There on the bed sat a cat-shaped Halloween basket we had picked up the year before, which we couldn’t bear to put away for a whole year so assigned it the role of storing our PlayStation controllers, nick-named Kontroller Kitty. Due to our rather ridiculous sense of humour, Kontroller Kitty has a voice & personality, & now it appears she sneaks into our luggage to come on holiday with us. At least I now understood why Jarred had taken so long locking up.
I assigned Kontroller Kitty the temporary role of medicine dispensing kitty, & placed her on top of the chest of drawers by my wheelchair. It didn’t take particularly long to unpack to rest of our luggage, neither of us being the type to pack the kitchen sink (just Halloween decorations in November).
It was late afternoon, & as the sun began to set we decided to go for a wander along the banks of the River Ouse, which was almost full-to-bursting at this time of year. It was cold enough for a thin layer of ice to have formed in places, & the few geese that remained looked thoroughly fed up.
Looking west over the River Ouse, with the trees silhouetted against the sunset.
We ambled along until it had gone dark & then turned around & wandered back into the city, where we found a cosy little restaurant not far from our hotel. After a delightful meal we made our way back to the hotel, played a round of Set A Watch (a cooperative board game that I highly recommend if you enjoy role-playing games), before desperately searching for something entertaining on terrestrial TV. Not having a TV license & only really using Netflix & the WWE Network means we are used to watching what we want, when we want it, without adverts. We settled on an old episode of Live at The Apollo which I had seen before, but was entertaining none-the-less.
When that finished we went to bed, & were pleasantly surprised to discover that our bed was actually a double, & not two singles pushed together, as is the case in most accessible hotel rooms. God forbid disabled people have relationships and all that.
It was 8 am when I woke up, & as usual Jarred was awake before me. After coffee & some breakfast biscuits, we both showered (not together, you dirty-minded swine), got dressed, & went out into the city. On our way into town we found a Medieval Guild Hall, which looked as if it belonged in a Dungeons & Dragons game. Even more surprisingly, despite being built in 1357, both floors of the hall were fully accessible (take that, listed excuses). I don’t think I learned much from the exhibits as I was so taken aback to even get through the door, but it was an enjoyable experience none-the-less.
We made our way through the city centre towards York Minster, which it being graduation day was excessively busy. We browsed a few shops & found the street food market to one side of the Shambles. I sunk my teeth into a savoury Danish crepe & non-alcoholic mulled wine, while Jarred went for some African lamb sausages on top of a pile of brightly coloured vegetables & hummus.
After lunch we browsed a few more shops before heading to our pre-booked slot at the Jorvic centre. The smell hit as soon as we entered the building, but wasn’t entirely as unpleasant as some would have you believe, & we made our way downstairs into the waiting hall. This had a glass floor, underneath which was a scaled-down replica of the dig-site which uncovered Viking settlements in the area several decades ago.
We were told to wait for the technical team by the very friendly greeter, but predictably by the time they showed up the one wheelchair-accessible cart had already gone past. We were told to wait another 10 – 15 minutes, & this time when someone showed up on time, they told us we needed to go to another entrance for wheelchair loading which the cart had already gone past. We made our way to the other entrance, where the technical team consoled us by telling us that the wait was so long because only 1 in 20 carts was accessible. Quite how I stopped myself from saying that the wait had far more to do with people not turning up & not keeping us informed, I don’t know.
Once we were on the ride the experience was much more enjoyable. The animatronics were perhaps a little shaky, but the set-piece itself was extremely detailed. One of the people was even disabled, an inclusion that took me by surprise. They had a variety of animals too including rats, cats, dogs, chickens, & birds of prey among the exhibits. For someone who knows next to nothing about history, it was actually really informative.
After the ride we explored the gallery, where I’m only marginally ashamed to report that I was drawn to the real human skeletons. One of the skeletons had a misaligned hip & other malformations, & had been the inspiration for the disabled animatronic on the ride. Nothing will ever quite top accurately diagnosing a skeleton with rickets long before getting close enough to read the sign, as I did a few years back, though.
In the gift shop we picked up a copy of The Viking Game, a game that is something like a combination of chess & draughts, being played by some of the animatronics on the ride. We went home, played a few rounds of our newly bought game, & then headed back out into the cold for our evening meal.
Equal Pay For Disability.
A Tory candidate has stated that disabled people should be paid less than our able-bodied counterparts, because our work is about happiness.
Because we don’t have bills to pay.
Because someone else will look after us.
Because we don’t pay more for transport, accessible accommodation, equipment, or medication.
Because able-bodied employers are giving us opportunities we should be grateful to receive.
My work saves lives.
It could save the NHS that they destroyed.
It takes skill, hard work, & dedication.
But because I use a wheelchair I should be paid less for it.
This story has already fallen off of the news websites. It’s already being covered up & forgotten. We cannot let that happen so close to a general election.
So if you support disability rights, even if you’re not in the UK, tell people about this. Tell them the truth.
That a vote for the Tories is a vote for blatant illegal ableism.
https://www.bbc.com/news/election-2019-50684582
The Fearless Snowflake Award.
As a blogger I’ve been lucky enough to be the recipient of multiple awards, & I think it’s high time that I gave something back to the community. More than anything else I wanted to create something slightly different, something that recognised the content & quality of a blog, but that also recognised someone’s dedication to their chosen topic.
There are certain topics that, on the international stage of the internet, will attract scathing criticism as well as support & praise. Particularly, political matters & social justice can leave creators open to insults such as “Social Justice Warrior”, or “Snowflake”. Now I, for one, have never had a problem with being called either. Who on Earth thought being described as a warrior for justice would be an insult must be a very…special…individual. Similarly, snowflakes are uniquely beautiful on their own, but together can transform the world (&, as someone pointed out to me on Twitter, can bring an entire city to a halt). Why either term has become an insult is beyond me, but here we are nevertheless.
There is a small trend of certain words, traditionally used as insults, being taken up by victims as a way of fighting back against oppression. Punk was once used an insult instead of being one of the greatest musical genres on the planet. The LGBTQIA+ community is more than happy to use the word “queer”, & some disabled people have described themselves as “cripples”. Perhaps most famously, people of colour are using the N-word. It makes a mockery of those dealing out the insults, & leaves them scrabbling to find more.
I think it’s time to take back snowflake, & instead of it being used as a derogatory term to describe someone with a conscience & empathy, it should be used to celebrate individuals who advocate for equality both on their blog, & in real life. “The Snowflake Award” sounded rather sarcastic, more akin to a Golden Raspberry rather than an Oscar, so this is what I came up with:
If nominated, to accept the award there will be a few rules:
- Thank whoever nominated you, & link back to their blog.
- Link back to this blog post, & name Diary of a Disabled Person as the creator.
- Display the logo.
- Nominate 1 – 3 individuals, & make sure to let them know!
- Write a couple of paragraphs describing why each of your nominees deserves The Fearless Snowflake Award.
- Get in touch with me so that can pass on my personal congratulations.
To get the ball rolling, I’m going to nominate 3 people for The Fearless Snowflake Award.
The first is Crutches & Spice author, Imani Barbarin. Imani runs an excellent website full of interesting content, & is also extremely active on social media. A quick explore of CrutchesandSpice.com will make it obvious why she is eligible for this award; she doesn’t just write about equality for disabled people, but takes action too. She is constantly giving talks & presentations, & has absolutely no qualms about being a loud & clear advocate for social equality. Her efforts are admirable & deserve recognition.
Next up is Gem Turner, author of Gemturner.com. Gem has a sense of humour on a parallel with most comedians, & again is active on Twitter. She writes well about her passion for social equality, & again has experience as a public speaker to back her up. She will also speak up for herself in the moment, speaks the truth without hiding behind fancy language, & demonstrates that disabled people have more to them than their conditions.
Finally, we come to someone I consider to be a friend, & who I had in mind for this award from the very beginning. Her name is Dr Amy Kavanaugh & she is the author of Cane Adventures, the creator of #JustAskDontGrab, & has appeared on television on multiple occasions advocating for the rights of visually impaired & queer women. She frequently shares her experience of day-to-day life in London, often using public transport (including the tube) at peak times & recording her experience to demonstrate her message. She shares both the good & the bad, & works incredibly hard to spread her message.
To all three of these women I pass my congratulations, & I look forward to seeing what you think of this award.
I Am Not a Drug Addict.
Despite the world’s insistence on kale enemas being the cure-all for everything from colds to cancer, some illnesses require carefully manufactured pharmaceuticals for a cure, & even then sometimes there is no cure & we can only treat the symptoms. There is a plethora of such illnesses, & as of writing I live with at least 3 of them; asthma, depression, & chronic fatigue syndrome/myalgic encephalomyelitis. Depending on the outcome of my impending surgery, I could be adding another to the list – endometriosis (note: I now live with 4, because having just 3 was boring).
All of these illnesses are chronic. For the most part their causes are unknown, making it impossible to cure them. Instead, all we can do is treat the symptoms for as long as they persist, & the word chronic should give you an indication that the symptoms last longer than a couple of weeks. Yet, as fellow sufferers of such conditions will all tell you, we are constantly being reminded by our doctors that the pain killers & symptom managers we rely upon to function are only meant to be used for 6 months, or at most a year.
You don’t need to be a doctor to know that chronic illnesses don’t have the good manners to abruptly stop without warning after 6 months of using a prescribed medicine. However, at this point we start to be pressured by medical professionals to stop using medicines, without alternatives being offered. We are faced with a choice; subject ourselves to debilitating symptoms, or insist on keeping our prescription & be labelled as dependent on drugs. As far as most doctors are concerned, this is no different to being a drug addict, living from one high to the next, consumed by the need to remain intoxicated. Very few of them seem to fathom that our dependency stems from the desire not to be in excruciating pain.
My prescriptions keep me alive; they mean I can breathe. On top of that, they dull the pain enough to allow me to move. They meant I got an education, a full-time job, a husband. They mean I can write blog posts & make videos, join protests & watch wrestling, socialise & play games. Even with them I remain in constant pain.
Back in early 2019, shortly before we were scheduled to leave the EU for the first time, my main prescription disappeared. No one would supply it. I argued with the doctors & pharmacy daily, watching the number of pills left dwindle day by day for an entire month. Eventually, just before I ran out, the supply returned, but for an entire month I had lived in constant fear. If they ran out, how would I work? If I couldn’t work, how would I pay the rent? If I couldn’t pay the rent, where would we live? Even scarier than the financial aspect was the knowledge that I would be in unbearable pain.
In the current unstable political climate of the UK, & who knows what madness will have taken place by the time this post is published, that fear has returned as the supply of my medicine falls into question. It made me realise just how dependent on these prescriptions I had become.
Dependent though I may be, addict I am not. Addiction is an entirely separate physiological & psychological dependency on drugs, often obtained illegally or for recreation in the first place, which still needs to be treated with far more compassion & understanding than it is given now. The stigmas & stereotypes that haunt addiction also haunt me, & that is what I despise. Chronic illnesses & drug addictions are two separate conditions, in need of different treatment options. To lump us all into one category & regard us all as lazy strays draining “the system” of money damages us all.
When all of this is said & done, there is one fact left to face. If we’re being honest, the pressure to get chronic illness patients to stop using prescriptions is to save money for the NHS, not for our own good as they like to tell us. What good is not being addicted to drugs if we’re in unrelenting misery instead, which ironically is something that drives people to use illicit drugs. While the NHS certainly does need more funding, jeopardising the health of patients goes against everything it was set up to do.
So, when you see scare-mongering on the news about people becoming dependent on prescriptions, just remember that there is an entire side of the debate supressed into silence. We are not drug addicts. We are just sick.
