In early January 2018 I started my first job. After 5 months of HR dragging their feet with the paperwork I was relieved to finally start work, even if my hours were limited. When I arrived my new employer had even more concern for exasperation with HR as my computer login didn’t work, and the fact that the IT department were inaccessible complicated matters. We asked about incorporating access but were told the cost was too great, which due to all the budget cuts is believable. I finally managed to get onto the computer only to find that one of the programs essential for my role hadn’t been set up properly, so once again IT had to come to the rescue. After this I spent the first few days going through my compulsory training, but there was no job-specific training, so I simply learned from following what my colleagues did. It seemed to work well. These were all just teething issues that settled down as time passed.
In mid-January Diary of a Disabled Person became 1 year old, and a week later I accepted my first ever award for my efforts, The Leibster award. I was gaining confidence in my work and felt ready to expand my horizons.
By mid-February I was developing my new website; I had paid for a web domain and used a template I liked to create what you now see before you, added better menu and search functions, added my social media, and added a donate button. I also decided, after much deliberation, to set up a Twitter account. I was a little reluctant to do so as I had heard so many things about online trolls and generally toxic behaviour towards each other, but I also knew that it would enable me to reach out to a wider audience. However, once I had set up a profile online I realised that my concerns were mostly unfounded, and I was introduced to many new people and opportunities. I began writing accessibility reviews and giving interviews for podcasts and magazines, and I quickly gained a substantial number of loyal followers.
Before I knew it Easter was fast approaching. I had been given more hours at work and was feeling more positive about the role. I also received a work phone, which was a relief as up until that point I had been using my personal phone as my work one, using up the minutes on my contract and meaning that I constantly had to fend off work calls on my days off. I had many understandably frustrated customers when I had to tell them I wasn’t at work that day so couldn’t help, as I didn’t have access to the necessary resources.
Knowing that my hours were increasing allowed me to pull what was, in retrospect, quite a mean April Fool’s prank. Having waxed lyrical about the extra strain put upon me by my increased hours I informed my readers that I would no longer have the energy to write, and that Diary of a Disabled Person was coming to an end. I let them believe this for 4 whole hours before breaking the news that this was a prank. I thought the prank wasn’t particularly convincing but clearly I’m a better liar than I had anticipated, and I still feel a little guilty about the whole scenario. I aimed to ease the upset a week later when I accepted my nomination for a second award, which thankfully seemed to go down well.
Shortly after Easter came the Leeds Digital Festival 2018, something which my office were heavily involved in. I had helped arrange several seminars and workshops all over the city, some of which I got to attend in person, and that was the precise moment when my wheelchair decided to break down. My wheelchair had to be taken to a workshop for testing and repairs, and I was informed that I was lucky to receive a replacement wheelchair for the month I spent without my own, a luxury that was apparently not awarded to most people who were left to levitate if they wanted to leave the house. I was more thankful for the fact that I didn’t have to pay for any of the repairs, which included a brand new set of batteries. I was particularly thankful as the landlord wanted the annual rent up front, on a tighter deadline than the year before, which we could afford but didn’t leave much in my account.
In June things began to deteriorate at work. I would come home in tears almost every night, usually frustrated that I appeared to be making an excessive number of mistakes. Eventually it got so bad they insisted they write instructions down for me, but fortunately it was this that highlighted I had been following instructions without making too many errors, and that the majority of the time the mistakes were in the instructions themselves. However, mutual trust and respect had been shaken enough to create a tensely uncomfortable environment.
It was also in June when I got my first tattoo, a simple piece of calligraphy down my right arm reading “Disability Doesn’t Mean I Can’t”. I was pleasantly surprised to find that the pain wasn’t unbearable, and I had no issues at all with the healing process thanks to some good advice from my boss. Given that they are the only accessible tattoo parlour nearby, even going so far as to bring a tattoo station downstairs for me, I was relieved to get good service; it means I can go back!
In July Jarred graduated from university; I watched from the front row next to my future brother-in-law, and we celebrated by eating together later in our favourite restaurant. Then Jarred, who had been looking for work since finishing his studies a few weeks before, managed to land a job as a care assistant. We both settled into the new routine quite quickly, and things seemed to be going well.
Right at the start of August life dealt me two of the hardest knocks I’ve ever taken a matter of days apart. Firstly, our beloved hamster Tribble managed to escape in the night and hasn’t been seen since. While a hamster may seem a trivial pet to grieve over I was distraught, having lost a loving companion, and I was still struggling not to suddenly burst into tears at random intervals when I lost my job.
They told me their funding had run out and were letting me go, but they were taking on new staff at the time so I’m not sure how much that influenced their decision. I think a disagreement with one of my colleagues, who had told IT that I would go over to see them despite the fact that I had already arranged for them to come to me, had more to do with it.
They tried to ease the blow of losing my job by saying I could transfer to other admin roles within the district, the only problem being that the only ones with regular or substantial hours were based in the inaccessible building. Tired and fed-up, I quit on the spot.
Once again I began job-hunting. The days were drawn-out and seemingly endless, weekends and weekdays merged into one, and I became increasingly depressed. Even accepting more awards taking me to a sum total of 5 did little to cheer me up.
There were a few issues surrounding inaccessible offices, but eventually I found that this time around I had much more luck obtaining interviews due to the work experience I had, so this wasn’t as much of a problem this time round. Less than a month after losing my job I was offered a new one, this time a salaried, full-time role in medical research which my knowledge and skills were much more suited to. I obtained references from my past employer, had my hen do at the local cat café, and bought my wedding dress.
On October 1st I started my new job, helping to chase-up erroneous or missing data, ensuring that anomalies were explained wherever possible, and producing a mistake-free dataset for the statisticians to work on. I was also involved in some trial management skills, booking meetings and promoting studies to boost recruitment, and fell in love with the varied role. The training was substantial which helped to boost my confidence in my ability to do the job. I was never bored and, because it is based at a university, there were absolutely no qualms about accessibility. My colleagues and superiors are lovely and even offered to guide me through the Access to Work scheme, although fortunately for them I had completed the scheme previously anyway.
The winter months grew colder and the wedding fast approached. I saw a few friends and family as the wedding approached, although most of the visits were fleeting as people were saving money for the actual wedding. Clothes were bought, cakes chosen, and invitations sent out. For obvious reasons I am actually writing this before the wedding takes place on 27th December, so I cannot tell you how it went. It is strange to think that I write this as Jarred’s fiancé, but will publish this as his wife. Still, I cannot wait to end 2018 and welcome in 2019 on such a high.
Happy new year…
Thank you for the many wonderful messages you have sent me & my husband over the past few days; they are all appreciated, even if we can’t respond to them all.
Obviously there will be a blog post at some point, although it’s difficult to say when as I will be receiving photos & videos from family & friends first.
I will share what I can on social media, but in the meantime rest assured that when you do get to see what it was like, you will get so much detail it will have been like you were there!
Mary sat in the waiting room scrolling through social media, trying to avoid the news as it was nearly always miserable. An old man was coughing loudly in the corner, and on the other side of the room a mother comforted a snivelling child. The receptionist could be heard tapping away at her computer, interrupted only by the phone ringing.
There was a beeping noise and Mary’s name appeared on the large screen mounted on the wall above reception. She clicked off her brakes and manoeuvred her way towards the doctor’s office, knocking on the door in the vain hope that they would open it, but simply hearing a woman’s voice brusquely say “come in” from the other side instead. Mary pushed the door open with her feet while propelling her wheelchair into the room, and positioned herself opposite the doctor.
“What can I do for you today?” the doctor sounded bored.
“Well, it’s just these new pills you’ve put me on,” Mary began, “they’re very effective but they also have side effects.”
“And what would those side effects be?” the doctor pressed.
“Very vivid hallucinations,” Mary tried to sound as self-assured as she could while at the same feeling highly embarrassed.
“How strange, that’s never happened before,” the doctor said as she scanned the prescription on her computer for the list of side effects.
“Yeah, it was…weird,” Mary offered.
“So what did you hallucinate?” the doctor looked back at Mary.
“Well…err…and I promise you it all seemed very real at the time…err…I…um…I met an angel.”
“What?” the doctor said, flummoxed.
“I met an angel,” Mary repeated self-consciously, “and the angel told me that I would soon become pregnant with the child of…oh, this is ridiculous,…of God.”
The doctor barely contained her amusement, a small snicker escaping before she continued.
“Ridiculous indeed, to have children you’d need to be able to have sex,” the doctor quipped.
“Really?” Mary raised an eyebrow, “how did you pass medical school if you don’t think disabled people can have sex?”
The doctor opened her mouth but Mary interrupted, “Don’t even ask how, OK? I lie down. Sheesh.”
The doctor closed her mouth again looking thoughtful.
“There is one way we could settle this matter if it would put your mind at ease,” the doctor recovered her professional demeanour, “You could take a pregnancy test. I have some in my desk, and the disabled toilet is just around the corner.”
“Fine,” Mary took the pregnancy test from the doctor and left the room, returning 5 minutes later.
“May I have another please, I think I did this one wrong?” Mary looked somewhat sheepish.
“Sure,” the doctor handed her another and spent the next 5 minutes filing paperwork while she waited.
Mary returned looking even more sheepish than before, carrying both pregnancy tests on her lap.
“Well?” the doctor inquired.
There was a short pause before Mary replied, “I’m pregnant.”
Lounging back on the sofa Mary rested her mug of tea on her swollen belly, trying not to fall asleep. When she heard Joe’s keys turning in the lock she slowly sat herself upright, and waited for the rustling of hats, scarves, and coats being removed before the door into the lounge opened.
“Evening,” Mary said, noticing Joe looked somewhat distressed, “Are you alright?”
“Have you seen the news?” he said.
“You know I never watch the news,” Mary replied.
Joe sighed, “A huge hurricane has been spotted crossing the Atlantic and it’s heading straight for us. It’s due to hit in 24 hours; they’re evacuating the city tonight.”
“Is this what you call a joke?”
“No, Mary, I’m serious. We need to pack our bags and go. Now.”
“But the baby-“
“I know the baby’s due any day now but we’ve got no choice. It’s not safe,” Joe swiftly left the room, and Mary could hearing him dragging the suitcases out of the wardrobe. Awkwardly she shifted from the sofa to the wheelchair, the seatbelt of which had long since given up hope of keeping her safe, and rolled through to the bedroom. Someone would need to direct the packing or they’d end up with enough underpants to sink a ship but no nappies for the baby.
The train station was the busiest it had ever been, with all the ticket barriers left open as people streamed in droves towards the trains. As they approached the platform of the nearest train an official walked over to them.
“Have you booked a ramp?” he asked Joe.
“No,” Mary responded coldly.
“You need to book a ramp 24 hours in advance if you want to board the train,” the official continued speaking to Joe.
“Oh I’m sorry,” a tired, grumpy, and very pregnant Mary said, “I’ll just call the Met Office and ask them to delay the hurricane so we can give you a warning in advance that I can’t levitate. This is an emergency evacuation, surely your ableist policies don’t apply now.” Joe placed his hand on Mary’s shoulder and gave it a squeeze. She fixed him with a glare colder than Medusa’s own.
“I’m sorry, but we need the notice so that we can ensure that a member of staff with the right insurance is available,” the official wouldn’t budge.
“We’ll find another option,” Joe looked down at Mary before turning and directing her out of the station.
“Now what?” Mary said once outside, the wind already picking up.
Across the road a bus pulled up.
“Bus then, I guess,” Mary started to move towards it.
As she approached the driver opened the doors, and shouted to her, “No room for a wheelchair, love, we’ve got a pram.”
“Then tell the mother to move, it’s a wheelchair space, not a pram space,” Mary stuck her foot in the doorway to prevent the automatic doors from closing.
“Not my job,” the bus driver muttered, even though it legally was.
“I’ll move,” the mother shouted down the bus, clearly more aware of the law than the driver was.
After much fussing with luggage and prams and the uncooperative bus driver, Mary could finally settle in the wheelchair space as they made their way out of the city.
“Where we headed?” she asked Joe.
“Heathrow airport,” a stranger interjected.
“They gonna try and fly in this?” Mary replied incredulously.
“Nah, but they can shelter enough of us in the airport itself, there’s hotels and all that. It’s still gonna get battered by this storm, but the worst of it is meant to be up in Scotland so we’ll cope.”
“Thanks,” Mary said, turning to Joe, “Can you ring round the hotels and make sure they have an accessible room ready for us? I really ought to get a hotel room in this state.”
“Sure,” Joe nodded, looking at the empty bars on his phone, “but there’s no signal. I’ll go to the top deck.” With that Joe shuffled away through the crowd in the vain hope of getting a signal. Mary was suddenly overcome by a wave of exhaustion, and within minutes was fast asleep.
Several hours had passed when Mary woke up suddenly, feeling a small but intense cramp across her abdomen and back. It disappeared almost as soon as it had arrived and Mary thought nothing of it until, as she was drifting back to sleep, it returned.
“Joe,” Mary hissed, “Joseph.” She shook him gently, as having given up on obtaining a phone signal, he had settled on the seat beside her and fallen asleep.
“Hmmm what?” a very drowsy Joe opened his eyes.
“I think I’m in labour,” Mary whispered.
“I’m giving birth,” Mary hissed.
“Oh, OK,” there was a pause as Joe came to his senses, then, “What? Now? You’re in labour right now?”
“Yes I’m in labour right now,” Mary returned sharply, much louder than she intended.
“We’re only a couple of hours from Heathrow, love,” the bus driver shouted back, “it’d be sooner but this damn traffic is holding us up.”
“I’ll try and hold it then,” she quipped back.
The next two hours were the longest of Mary’s life. The light of dawn illuminated a grey and gloomy sky hanging above a seemingly endless convoy of cars, trucks, and buses. Each pain became a little more intense and were already becoming more frequent. Mary tried not to wake the other passengers up, but wasn’t succeeding. Eventually Heathrow could be seen in the distance, and another half an hour later the bus arrived at its destination.
The driver ensured that Mary was the first off the bus, followed closely by Joe who carried all their luggage while his wife clutched her belly. They pushed through the crowd, quite literally treading on toes and disrupting queues, but no one seemed to mind thanks to the magic of a wheelchair.
“Which hotel did you book?” Mary asked.
“Signals down, I couldn’t get a hold of any of them,” he replied.
“Wonderful,” Mary said.
“Look, I’m sure they’ll be understanding of our situation,” Joe answered, heading towards the nearest one. They pushed past the queue at the reception desk, Joe interrupting another customer mid-speech.
“My wife needs an accessible room and she needs one now, she’s in labour,” the words fell out in a rush.
“All our accessible rooms are already full sir, but we do have some other rooms available,” the receptionist replied calmly.
“Will it fit a wheelchair?” he asked.
“No, I said all our accessible rooms are already full, sir-“
“Then you’re no help to us,” Joe hastily turned on his heel and headed to the next hotel, followed by Mary.
He repeated the process only to get the same response, and went from hotel to hotel to hotel, all of them informing him that accessible rooms were apparently rarer than an endangered species. Even seeing Mary’s increasing distress as labour progressed didn’t help. Utterly exhausted, afraid, and in pain, Mary broke down in tears in the midst of the airport.
“I don’t want to have my baby with everyone looking at me,” she stuttered between tears. Joe also began to cry, frustrated by the unwillingness to help others in need displayed by everyone they had come across.
“I know, I know, but I don’t know how to fix this,” he replied.
A woman wearing an air hostess uniform approached them, her heels audibly clicking on the tiles despite the noise in the airport.
“There is somewhere private you can go,” she said, “if you need it.”
“Yes, yes, please, anything,” Mary wiped the tears mingled with sweat from her face.
“This way, and I will fetch a doctor once you’re settled,” the air hostess guided them through what seemed like miles of crowded airport, stopping every few minutes as a contraction took hold of Mary. Finally, the air hostess opened the door of the room she had in mind. It was a disabled toilet, although in fairness there was an adult-sized changing table attached to one wall, which the air hostess was already pulling down.
“I know it’s not ideal, but it’s better than nothing,” she said.
“What’s your name?” Joe asked, receiving a steely glare from Mary.
“Star,” she replied, before dashing off to find a doctor.
Slowly and carefully, Joe helped Mary climb on the table, putting a bag beneath her head as a pillow. A few minutes later there was a tap on the door and a doctor appeared, followed by a nurse, both in bloodied scrubs having clearly been put to work at least once already. Mary couldn’t have cared less, simply being relieved to have a private place to give birth, albeit a humble bathroom. Another contraction detonated through her body, causing Mary to grit her teeth in an effort not to scream.
Two hours later an exhausted and sweat-covered Mary was handed her little boy, who’s first cry could be heard from outside of the room. Mary’s head flopped back onto her pillow as she held her little boy, tears of relief now adorning her cheeks as Joe kissed her forehead gently. Time passed at an unknown pace until a knock was heard on the door. Mary cast Joe a puzzled glance as he crossed the room. He answered to find three boys stood outside, one holding a pile of clean, fluffy towels, one holding some bottles of water, and the other holding a tiny baby-gro.
“We thought these might help,” the boy holding the towels offered, “these are spares in the staff laundry room.”
“And these were from the pharmacy,” the boy with the water added.
“And this was my first baby-gro which my mum kept as a memento, but she said you can have it now,” the third added.
“Wow, boys, this is wonderful. Your mothers must be very proud of you,” Joe accepted each of the gifts and added them to the pile of luggage in the corner of the room, except for the baby-gro. Instead he gently lifted the baby from Mary’s arms where the nurse had left him after his first bath. He stirred slightly in his sleep as Joe gently unravelled the many towels from the baby, before dressing him even more carefully in the baby-gro, which fit perfectly.
“Can we see the baby?” One of the boys said expectantly, as they were waiting by the door.
“Of course,” Joe said.
Mary watched, smiling, as Joe carefully set the baby down in her wheelchair before going back to open the door properly. The boys stumbled in excitedly and rushed to the side of the wheelchair, where they spoke only in loud whispers.
“What’s his name?” one of the boys asked.
From the changing table where she still lay, tired but content to watch the world go by, Mary replied.
“Joshua,” she said.
I hope you enjoyed this year’s Christmas special which was inspired by some ideas put forward by fans of Diary of a Disabled Person. I certainly enjoyed writing it.
I hope you all have a wonderful Christmas, and I will be back next week with the New Year special.
Until then, Merry Christmas!
Recently I was trying to coerce my dad (Mini’s grandpa) into the use of a rollator. In October he had a fall, lost his balance, and broke his collar bone when he landed heavily on his left side. My mum was asking about walking aids, as one of their neighbours has a mobility scooter. I pointed out that, with them having just moved to a new house without a garage, means of storage would be limited. I also had to remind them that they need to be able to get any equipment into their car, something which I have much painful experience of thanks to ferrying my delightful daughter to and from university.
This started me thinking, something which Mini can confirm as a sign of imminent danger. Transporting a disabled person around takes a lot of planning. Suddenly I saw in my mind’s eye an episode of Thunderbirds. Picture, if you will, plenty of specialist equipment, needing a military level of planning for the task at hand, complete with a secret Island base to store and prepare the equipment.
Welcome then to White Rose Rescue (Edit: the White Rose is the symbol of Yorkshire, stemming (get it, stemming!) from the War of the Roses, where Lancashire (red roses) and Yorkshire (white roses) poked each other with swords for a bit. The hostilities continue to this day), otherwise known as Trundlebirds. This is run by the T’Racy family (Yorkshire joke), and has equipment suitable for everyday situations. All this equipment is stored in a secret bunker (well, ok, garage). Our garage even has a remote-controlled power door. However, none of the trees next to the driveway move, and are more likely to damage the equipment than be damaged should you collide with them.
The available equipment is as follows:
Trundlebird 1 (mobility scooter). This is a rapid access ship designed for local missions. It has suspension so that the operator has a comfortable ride, and also has useful features such as a shopping basket and brakes. Many a successful mission to the local supermarket have been carried out successfully, to date.
Trundlebird 2 (car). This is the main equipment transporter. Equipment appropriate to the mission can be loaded and used where-ever, accommodating Trundlebirds 1, 3, 4, or 5. It allows multiple occupants to travel together with certain combinations of equipment, even if they ride on the roof.
Trundlebird 3 and Trundlebird 4 (rollator and manual wheelchair respectively). These are individual piece of equipment for non-local missions and can be loaded into Trundlebird 2, but are rarely both taken on a mission at the same time due to the fact that it is somewhat difficult to use both pieces of equipment simultaneously.
Trundlebird 5 (Blue Badge, allowing legitimate access to disabled parking spaces in the UK). This is the satellite that controls the deployment of missions, albeit without the orbiting part. This is most useful for missions using Trundlebird 2. Although the Blue Badge is technically not a machine, it is most important when trying to get a disabled parking space as near as possible to the mission location. This allows rapid (or relatively, at least, these things are complicated) deployment to the scene of the action.
Trundlebird 2 has recently been upgraded, but unfortunately not to a Porsche. The previous version allowed the transportation of Trundlebird 6 (the eponymous powered wheelchair used by Mini), and it even had a special loading ramp. The whole set up failed spectacularly as you could not get everyone, Trundlebird 6, and the ramp into Trundlebird 2 at the same time. This has been alleviated as we now rarely have to transport Trundlebird 6, because she wanted to be “independent” and “get married” or something.
I have opted to be the head of the organisation because I am the driving force; I do most of the driving. I suppose I could be the chauffer, making me Parker. However, I only have a Ford rather than a Rolls Royce, and I can’t distinguish pink cars from grey ones because I am colour deficient (which has led to some interesting situations itself, including me being convinced that a grey rabbit was actually green. (Edit: this really happened)).
At least for myself and Mini’s Mum (Minimum?), we have the option of using Trundlebird 2 and all the different equipment. Planning involves selecting the correct item for the mission, and then starting out immediately. Mini can set out on a local mission, but missions further afield need planning. These are dependent on such things as bus time tables, accessible vehicles, and being able to convince the train companies that you really do want to travel tomorrow and unfortunately didn’t buy the levitation upgrade.
Well, I’d better get on with planning the next mission as we need to pick up some prescriptions for Minimum from the local pharmacy. Trundlebird 1 will be best. I’ll just go and open the bunker…
Given that the title of this blog is Diary of a Disabled Person you could be easily forgiven for thinking that discussing my life prior to disability is somewhat irrelevant. However having had many conversations with able-bodied people who accidentally discriminated against the disabled and pleaded ignorance, I have been able to reflect on my own actions before disability was a factor in my life.
The saying that “you never imagine that something like this could happen to you before it does happen” is clichéd, but it is also true. Before a virus decided my brain tissue looked like a tasty meal, disability was something other people had to deal with. Of course had you asked me, I would have thought myself to be highly inclusive and non-discriminatory, a result of my ignorance. I realise that in my time at school I have probably obstructed a corridor, left someone disabled to struggle with a door, and stepped across the front of a wheelchair without a second thought. I probably spoke to someone in a patronising tone or ignored them altogether in favour of speaking to whoever they were with. I certainly never stopped to consider that I could enter buildings that wheelchair users couldn’t, by virtue of the fact that I could climb up steps. Had I been old enough to drive chances are I would have parked over a lowered kerb. My parents brought me up not to misuse disabled facilities like toilets and changing rooms, but other than that, I probably caused many disabled people a headache or two.
All of these little annoyances that now occur in my daily life I have probably put someone else through and while I hate to make excuses, I would say that most were a result of ignorance. No one in the family was disabled at the time, none of my friends were disabled, and I wasn’t disabled; I had no experience to learn from. This is why I try to have a little patience with others when they simply didn’t know or realise that what they were doing would cause me extra trouble, particularly if they are genuinely apologetic and help me resolve the issue when it is brought to their attention. I will
sometimes try to reassure them that I used to do similar things out of ignorance myself.
There are however, a group of “ignorant” people that I find difficult to deal with. There are those who take exception to me having a problem with blocked access routes, and neither apologise nor help me resolve the issue, often giving me a mouthful of abuse for daring to burst their precious little bubble in the process. Many car drivers will move forwards to clear a kerb drop only to roll back over it once I have passed, leaving it blocked for any other wheelchair users. Others tell me they’ll only be there a minute and to be patient, despite the fact that this attitude can make me late to wherever I am headed.
Then, there are the worst of them all; the people who park in disabled bays, and use their changing rooms and toilets who don’t need to, usually because they want to take their pram/trolley/shopping bags into a larger room with them, and not when all the other facilities were already in use. These people are invariably the rudest and most inconsiderate, and certainly cannot plead ignorance when there are signs everywhere highlighting that disabled people should have priority access to those facilities. I knew better than that as a child, and I know I would never have been that inconsiderate
as an able-bodied adult.
I believe genuine ignorance to be a forgivable reason for accidental ableism. However when people choose to carry on impeding the disabled by continuing to do things they know are ableist, neither apologising nor helping me to rectify the issue or simply disobeying the signs displayed clearly around the facility, I cannot accept ignorance as an excuse. It is these people who are truly ableist and shouldn’t get to hide behind half-hearted excuses to avoid responsibility.
My blog is called Diary of a Disabled Person, so I could hardly ignore the International Day of Disabled People, could I? I actually marked the occasion yesterday by attending an event hosted by Leeds City Museum, celebrating the empowerment of disabled women. I am only marginally offended at not being asked to speak.
One of the first people to speak to me when I entered the room was none other than the Lord Mayor himself, accompanied by his wife. I was blown away to see such an important figure at such a low-key event, but it was a very encouraging sign. After the mayor returned to his other duties I was helped to a cup of coffee by a very friendly member of staff, who also pulled out a seat to leave room for my wheelchair. That was when the string quartet in the corner began playing Christmas songs. I had great difficulty in stopping my pinky finger from being held aloft as I sipped my drink.
The Lord Mayor opened proceedings with a self-deprecating speech about how he felt that he, an able-bodied man, wasn’t the most appropriate opener for an event about disabled women. This set the tone for what was to come perfectly.
First up was British Para-athlete Kare Adenegan, Young Sports Personality of the Year and holder of the world record for the fastest 100 m wheelchair sprint, having usurped Hannah Cockroft’s record earlier in the year. She talked about how she was inspired by Hannah Cockroft’s performance at the 2012 London Paralympics, but that her school weren’t equipped for wheelchair sports, not knowing how to cope with her needs. Eventually she found a coach who did have those resources and skills, who encouraged and trained her. That coach must have done something right as in her first season as a junior para-athlete she was ranked within the top 10 in the world. In 2015 she competed in her first senior championships, achieving 2 bronze medals. In 2016 she went to Rio, where she won silver and bronze medals, just as she had done in the world championships that same year. Finally in August 2018, mere weeks after breaking Hannah Cockroft’s world record, she landed her first senior gold medal at the European championships in Berlin. There didn’t appear to be any hard feelings between Kare and Hannah, as footage shows them holding hands afterwards.
If these achievements weren’t enough to make us all feel inadequate on a Monday morning, she’s also doing her A-levels, and plans to go to University while maintaining her sport career.
As her segment drew to a close, she said one thing which I found incredibly relatable; “Disability has allowed me to have so many opportunities that I wouldn’t have without it”. This is a sentiment I have expressed several times before, and I agree whole-heartedly.
Next was Hayley Mills-Styles, a thread artist who uses and teaches needlework as a form of therapy and recovery. Her art focusses in particular on mental health, with one piece containing 52 small items representing each week of a year living with depression. She received many emails and messages from people who had seen her art exhibits thanking her for her efforts, as they reflected the feelings of others so accurately too. If nothing else, it seemed that people were comforted in knowing that they weren’t alone in their experiences. Hayley has also produced studies of how she ate when depressed, performing intricate cross-stitches of various food wrappers.
One of her projects stood out from the others; the Positive Patchwork project, produced by a group with various eating disorders at a local hospital. Although Hayley herself only contributed a small piece to the patchwork, she taught the patients new skills that they could take forwards as a form of therapy, enhancing their chances of full recovery. While the end product was impressive, she specified that it was the making of the patchwork that was the most important, as this was the therapeutic part.
Hayley was followed by Susan Hanley, a Leeds resident with a similar needlework business called Leep1. Susan is heavily involved in campaigning for disability rights, raising awareness of ableism and tackling hate crime, and regularly corresponds with local political figures. In 2010 she was voted Yorkshire Woman of the Year and is also a graduate of the Tomorrow’s Leaders Programme, a programme that helps disabled people gain skills in activism and leadership, skills she has used as a member of the People’s Parliament. Perhaps my favourite of her efforts though was arranging disability-friendly club nights at various nightclubs around the city, allowing disabled people to go on a night out without worrying about accessibility. It seems that in the midst of all her hard work, fun is a vital element of her life.
Finally came Sue; unfortunately I didn’t catch her last name. At one time Sue had normal vision, but then a viral infection of the optic nerve of her left eye induced inflammation, resulting in the steady loss of eye-sight in her left eye. Then, one morning, she woke up and could only see a solid wall of yellow. It was the last colour she ever saw.
The same virus that had blinded her left eye had now invaded her right eye, and soon her sight was lost. This would be tragic for anyone, but for a talented and passionate artist this could be seen as career-ending. But not for Sue.
Sue realised that she could feel the indentations left on paper by a pencil, and taught herself to draw with her right hand by using her left hand as a guide. Using this new skill she went to college, and then to the Bradford School of Art, but became frustrated as she could never see or fully appreciate the finished piece, only segments of it. Thus she turned to ceramics and 3D sculpture, something which relied on structure, shape, and texture, all of which could be experienced without vision. Thus she graduated with her degree and has continued to produce art; art which often prominently features the colour yellow, a colour indicative of both happiness and disease. Even for someone like me who tends to take things at face-value, the significance of that colour to Sue is clear.
Afterwards I stayed for a while, chatted with those around me and handed out leaflets for my blog. Rounding off the day perfectly was the view I got as I left the museum, before hurrying home to get this written and recorded.