Category: Uncategorized

The Corona Diaries.

You’d have to have been sleeping under a rock to escape the news as a viral pandemic spread across the globe; actually, that may have been a useful preventative strategy. In January, coronavirus featured in every other headline and closeted racists thought themselves justified in expressing their real opinions. In February, it was the major headline on a daily basis. In March, it hit the UK, and it hit us hard.

Supermarkets were stripped bare as people thoughtlessly hoarded materials without considering the needs of others. More and more offices started encouraging people to work from home in an attempt to halt the spread. The accommodations consistently denied to disabled people as being too difficult to carry out were suddenly implemented without second thought. An already desperate NHS was stretched beyond its limited means. The death toll kept climbing. Finally, our esteemed leaders decided to listen to the concerns raised months prior by educated and experienced scientists, and took the matter somewhat more seriously. Schools closed. Bars and cafes shut. All non-essential workers were advised to work from home or not at all, although the definition of non-essential was liberal and left people without pay.

Fear and uncertainty reigned supreme, with some saying that the media was making a fuss over nothing, while those of us who were vulnerable to the pandemic watched the noose around our necks tightening beyond our control. We were told we were dispensable, an acceptable loss.

I had only been working from home for a single day when my temperature soared. It felt like a sunburn covering every inch of my skin, only it was coming from inside. Thinking about it I had been more fatigued than normal, and more nauseous and dizzier too, which I’d simply put down to the Myalgic Encephalomyelitis reacting to stress. I had a cough but I wouldn’t have called it persistent. I didn’t give it much thought until the following morning, when I was apparently radiating heat detectable from some distance, and could barely stay awake. I actually don’t remember all that much; I wasn’t sleeping so much as passing out and coming around only to pass out again. I stayed lay down in bed for safety’s sake.

I couldn’t actually access a test, or any medical help at all which reminded me of the viral meningitis I contracted almost a decade ago, so we’ll never know for certain if I had coronavirus. In fact, given that letters have been sent out requesting some disabled people sign a Do Not Resuscitate upon admission to hospital, I wonder if I was actually safer on my own without someone else making the call over whether this poor, pitiful disabled person deserves to live. However, even without the diagnostic test the development of those symptoms at that time leads me to believe that I did, in fact, have coronavirus.

The next few days were miserable. I constantly felt as if I was cold despite the fever, and the fatigue was so overwhelming that I didn’t see another room for several days. My mental health plummeted. When I was finally able to get out of bed, I found my knees buckling beneath my weight, and I frequently lost balance. Reluctantly I began using my walking frame around our three-room apartment, thinking it was a temporary adjustment. It wasn’t.

My M.E started with viral meningitis, and it is well-documented that other similar viral infections are what triggered M.E in many patients. It stands to reason that coronavirus will do the same to some unlucky souls, and for those of us who already have it, it could only make things worse.

Despite now being back at work, I have had to accept that coronavirus has had a significant impact on my already pretty shabby health. I’m having to make adjustments to the way I work, and once lockdown lifts this will apply to the social aspects of my life too. I’m fortunate in that I already had the resources I need, and I have the support of my husband, parents, and friends. Even my work has been exceptionally accommodating. I would not be coping anywhere nearly as well I am without all that.

Coronavirus has left a path of death and destruction in its wake, and given that the lack of testing means we cannot know the true extent of the spread of COVID_19, we will never be able to track just how much damage it does to survivors. I am but one of thousands, potentially millions, put in danger by poor leadership, poor reaction times and responses, and putting the finances of individuals at risk thus forcing them to work. Even when the initial threat has all blown over, many people’s lives will simply never be the same again.

Diary of a Disabled Feminist.

This is the final instalment in the Diary of a Disabled Feminist mini-series. You can find the previous two instalments here and here.

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Feminism is a controversial business. From dealing with people who think male privilege & toxic masculinity is a myth, to Trans Exclusionary Radical Feminists (TERFs) trying to force out trans women from feminist groups, it is a minefield of insults & derogatory comments. To some, an empowered woman is a threat, even if they don’t want to admit that. Thus, sexism still pervades every nook & cranny of our society, infiltrating daily occurrences.

Women often find themselves ignored or patronised when dealing with business typically deemed “men’s” work, such as buying a car, or having work done on the home. I once had a workman think I didn’t know how to switch a plug on, which I had intentionally left off so as not to waste power on a broken heater. However, once my husband explained the issue in exactly the same way as I did, the heater was definitely broken & needed replacing. The irony here is that I’m the one who’s good at fixing things. I still can’t make up my mind as to whether this was because I’m disabled or a woman. Similarly, while Jarred is certainly an avid gamer, of the two of us I definitely play the most. However, conversations in gaming will often revert to Jarred by default.

The purpose of feminist groups is to support & empower women, yet it is in these groups that I have experienced some of the worst discrimination. My bisexuality appears to make some people uncomfortable, as if I couldn’t control my actions if I were attracted to someone. Others seem to think that my sexuality is purely a fashion statement. However, by far the biggest obstacle I have faced is steps. I have attempted to attend so many groups only to find I couldn’t get through the door, & to hear that they’re “sorry” but somehow couldn’t find an accessible space in central Leeds. As such I don’t typically find myself in feminist circles, but simply describe myself as feminist & occasionally tweet on the topic.

I tend to talk about equality rather than feminism, & this can often lead to some ridicule, the most popular joke being that equality & feminism are the same, & so it’s like asking for H₂0 instead of water. However, I would contend that equality & feminism are two different things; equality doesn’t just include gender equality, but also tackles racism, ableism, homophobia, transphobia, & general xenophobia. The issues faced by one group should not over-power the others & given that power truly lies in numbers, if these marginalised groups could set aside their differences to try & work together, true social change could be achieved. Therefore, while I identify as feminist, my efforts cannot lie within the bounds of just feminism.

I am disabled. I am queer. I am a woman. I have no hidden agenda; I proclaim it loud & clear. I am a feminist who wants equality.

Diary of a Disabled Feminist: Mini-Series.

Sunday 8th March is International Women’s Day, & to celebrate I will be starting a three-part mini-series all about disability in feminism. You can look forward to a discussion of how fashion has been weaponized against women & the disabled, a brutally honest discussion of body image, & a discourse on the relationship between disability & feminism itself.

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Less than 2 weeks to go!

Becoming Karen.

In case you were wondering who “Karen” is, she’s the internet phenomenon that represents the heated clash between the Baby Boomers & Millennials. Karen is the stereotype of a white woman who has three uncontrollable children & as many ex-husbands, drives the ugliest 7-seater car imaginable, wears knock-off designer shades, has a lopsided pixie-cut, & always demands to speak to the manager. Whenever someone complains about something completely ridiculous, let’s say how other people identify their own gender, they’re a Karen. Being at the tail end of the Millennial generation, it’s a pretty funny meme that isn’t usually meant maliciously. OK, Boomer?

The only problem with this meme is that disabled people often end up complaining about illegal parking & blocked access routes, only to be brushed off as inconsequential by someone who fails to recognise that we have places to be & things to do, & we are labelled a Karen.

In the space of a week I’ve had to deal with multiple instances of pavement parking where I’ve been told to calm down, be patient, or just scrape past without scratching their precious paintwork. I’ve had to argue with the pharmacy to provide a prescription that they were denying me access to because they decided it would be fun (I guess?), & then I’ve had to complain to shop staff about using the disabled toilet as a storage cabinet.

When you have to complain to people in public that frequently, you start to wonder if you really are becoming a Karen, & certainly my depression making me doubt myself doesn’t help. You start to wonder if you really are over-reacting by wanting to cross a road safely without spending extra time in a torrential downpour.

Fortunately, as someone who did a small stint in customer service, & being married to someone who worked in retail for many years, I have plenty to compare myself to. Nevertheless, it certainly drains your confidence & energy to be rebuffed so often, & after being so vocal people just stop listening.

What started out as a light-joke has been flogged to within an inch of it’s life, & completely unintentionally has become yet another barrier disabled people have to contend with. It’s got to the point where no one can publicly complain about something without being labelled a Karen & rebuked, & with inaccessibility issues often being labelled as whimsical & unimportant, disabled people are more often than not labelled as Karens.

The real problem is, of course, that inaccessibility simply isn’t taken seriously. When, a decade after the implementation of the Equality Act, blatant inaccessibility is still commonplace, you start to wonder if anyone will ever take it seriously. We’re always told to make do, go somewhere else & be grateful for how things have improved, yet without people vocally & publicly complaining to begin with, things would not have improved. My usual retort is to explain that by their logic, we should stop all further research into cancer as things have improved so much, but my smart mouth doesn’t solve the problem at hand; until accessibility is taken as seriously as it should always have been, every time a disabled person complains about their issues, we will be labelled as Karens.

Third Time’s The Charm.

As of January 15th 2020, Diary of a Disabled Person is officially 3 years old! The terrible two’s are finally over, & like a rarely-seen aunt I simply cannot believe how much time has passed.

Celebrating 3 Years of Diary of a Disabled Person in white text, above a line drawing of cake, balloons, & party poppers, on a peach glittering background.

The past year of blogging has, as always, seen some changes to the way I work & the content I produce. I’ve won awards, expanded my following, taken on new projects, & even started making videos!

A year ago I had 200 WordPress followers, & my website had been viewed a few thousand short of 80,000 times. A year has seen me gain over 130 new followers, & the 100,000 views mark is so much closer! Considering that I spend no money on advertising, & rely almost entirely on social media & word-of-mouth, I’d say that’s pretty substantial growth.

Last January I accepted my first award of the year, the Flawesome award, & over the course of the year I have a accrued a few more, bringing me to a grand total of eight awards. The support of other bloggers has been confidence-boosting, to the point where I launched my own award to recognise the excellence of other bloggers & content-producers out there; The Fearless Snowflake award. I hope that with this award, I can return some of the gratitude & support I have received back to a community I am proud to be a part of.

I also released my third series of short stories over the summer, which seemed to be well-received. My workload means there won’t be any more series for a while, but I hope to return to the format for specials such as the Christmas edition a few weeks ago!

I’m not only present on the internet as a blogger, & can be found on social media too! My Facebook page & linked group (@diaryofadisabledperson) has seen some growth, in particular receiving support as I connected with more people on my personal profile, including from several professional wrestlers. My Instagram (also @diaryofadisabledperson) has seen some growth too, although I limit my time on this platform due to some of the more toxic elements I have seen there (including creepy messages that I can only presume have never actually worked at wooing anyone).

As always, the majority of my social media activity has been swearing about ableism on Twitter (@WheelsofSteer). At the time of writing my following has more than doubled in the past year, & I’m hoping to reach the 10k mark in the next few months. I’ve had quite a few people take to social media to lambaste me for taking such an interest in the statistics, & I would hope I never let my drive to increase my following lead me to do anything morally ambiguous, or “shady” as the kids call it these days. However, as someone who has always been mathematically-minded, I cannot help taking an interest & perhaps a little pride in watching those numbers climb.

Perhaps my largest development of the past year in relation to my blog started out as live-streaming on Twitter, & due to a mix of technical & accessibility difficulties, evolved into setting up a YouTube channel & producing the fortnightly show Weekend on Wheels for approximately 6 months. Making videos is definitely the most challenging aspect of my blogging work; I have a very basic qualification in IT & in performing arts, & up until a few months ago had never presented or edited a video. I built a camera stand out of Lego, used my phone to film myself, & downloaded some free video-editing software. After much searching on YouTube for instructions on how to use the software, ironically using videos that had been produced on said software, I began to learn the ropes. 6 months in I have decided to bring my edited show to an end, but will continue to release vlogs instead, & I have a humble following on YouTube to show for my efforts. I’m no PewDiePie, but then again I’m also not prone to racist outbursts, so perhaps that is a good thing.

Cliché as it sounds, I would be nothing without you – my readers, followers, commenters, & occasional trolls. Social activism can often feel like I’m screaming into a void, & compared to other “influencers” I’m not even worth a footnote, but I still feel like I’m making progress. I set up this blog to educate people about disability, & it would appear that I am doing just that. Constantly comparing yourself to others on social media has well-documented adverse mental health effects, & so I try not to let it dishearten me.

Over the next year I hope to keep producing high-quality content, both on here & YouTube. I’d also like to keep growing my following, to reach more & more people with my message of equality, & perhaps even to start on the book manuscript I’ve been promising for quite some time…

Here’s to another year of the little blog that could!

An Unlikely Water-Skier: Yet Another Short Story.

Guest Post by Eric Tress, Public Relations Officer at Cerebral Palsy FAQ.

Stephanie sat brooding after yet another tantrum. Her mum was on the couch, the TV on silent, looking sad and in despair.

“I’m sorry, mum,” said Stephanie,” I don’t know why I get so angry.”

“Well, Steph,” her mom replied. “I know you can’t always help it, but there must be something we can do. A tantrum every other day is more than I can take. Are you sure nothing is bothering you? You are not usually this…difficult…”

Stephanie sat, thinking. She, too, could not fathom why she was so angry, but if she could pinpoint a start to the drama, it must be when she saw the neighbour’s kids at the beach water-skiing. Why couldn’t she do that? It looked like so much fun.

Since then, Stephanie had been dreaming and thinking about water-skiing. She read a lot of materials on Cerebral Palsy and learned that disability was not always a hindrance to participating in sports. She discovered some fantastic people with cerebral palsy doing amazing things. For one, there was Linda Mastandrea who not only excelled in sports such as basketball while in school, but also managed to win Olympic medals for racing in a wheelchair, and then went on to become a top-notch lawyer!

After that research, Stephanie felt like she was missing out. It seems like she could be doing much more even with Cerebral Palsy and knew she could even water-ski if she was given the chance. However, when she started thinking of the logistics, she got confused and frustrated, and probably that was where the tantrums and anger were coming from. Stephanie shared all of this with her mum.

“Wow, Steph, That sounds really fun! I love this thinking outside the box and challenging yourself, but don’t you think water-skiing is a bit too…radical? I mean, what about the risks?”  While Steph had her misgivings, when she heard her mum say that water-skiing was too risky, she made up her mind to do it at least once. At the very least, even if she failed at it, she would feel much better for trying.

“No, mum! It’s not too risky. I want to learn how to water-ski!”

“Water-skiing it is then…” said her mum while still looking sceptical. Stephanie grinned.

***

Stephanie was excited about her new challenge. She could see her mum and other members of the family were sceptical, but Steph was on a mission. Steph started by researching people with Cerebral Palsy doing various sports.

Amongst all her other research, when Steph read about Effie Corriveau and her water-skiing story, she was on cloud nine! Now she knew it was possible. Here was a woman just like her, with Cerebral Palsy, doing what she wanted. If Effie Corriveau could do it, so could she.

Through Effie’s story, Steph was also relieved to learn that there were programs and equipment to help people with disability water-ski. What a discovery; Steph was over the moon.

Steph shared the story of the Woman with Cerebral Palsy that could ski anyway with her family on social media & at the dinner table, and everyone seemed impressed. Steph could see the tide turning in her favour, and she hadn’t even gone out on the water yet!

***

Steph couldn’t wait to start water-skiing classes, and was up as early as possible on the day she would sign-up for classes. She could have spent the whole night thinking about it instead of sleeping, but she wanted to be strong and fresh to make a good impression of a capable student, so she made sure she had a good night’s rest.

Once they had had breakfast, and she got all the well-wishes from her extended family, Steph and her mum set off.

When they arrived at the water-ski centre, Steph’s excitement reached a new peak. She already felt that this was something she loved and wanted to learn. They found where the other amateurs were having their lessons, and when the ski instructor saw them, he came bounding over like an over-sized puppy.

“Hi,  I’m Todd, the water-ski instructor. Would you like to sign up for a class?” he said, looking at Steph’s mother. He was met with a steely stare from both ladies.

Todd looked bewildered as Steph’s mother answered.

“Hi! My name is Elsie, and this is Stephanie, my daughter. She wants to sign up for water-skiing lessons.”

Todd was dumbstruck. Steph and her mom could practically see the cogs turning in his mind as he wondered how to go about it. Just then, an older man walked towards them, and Todd excused himself to go talk to him.

“That must be the boss, Steph! Let’s see what he says,” Stephanie’s mum said to her daughter, who was trying not to be disheartened. After a few minutes, the older man, with a kind expression on his face came right up to Stephanie and greeted her personally.

“Hello young lady, I’m Mr. Carver. I hear you want to water-ski…”

Steph interrupted with an enthusiastic “Yes!”

“Well then, let’s get you signed up,”

He greeted Steph’s mom and ushered them into an office.

***

When they returned home, everyone in the family was amazed to hear that Steph had actually signed up for water-ski lessons. They were also interested to hear about the many programs available for disabled people to learn waterskiing and other sports in the area.

Steph had also learned that people with Cerebral Palsy had been participating in water-skiing competitions in world tournaments since 1999, and that gave her additional confidence in her decision. She found out there were many qualified ski instructors like Mr. Carver that would train disabled people, and she was just glad that he was available to teach her.

The next weekend, Stephanie turned up for her skiing lessons with her adaptive water-skiing equipment, which admittedly hadn’t come cheap. It was like a weird game of Tetris just to get everything in or on the car. Unloading was somewhat easier, as opening the car doors seemed to do most of the work. A short while & several inexplicable rubber ducks later, Steph was ready.

It was hard to believe that Steph had lived next to the beach all her life and never thought of signing up at the beach water sports centre. She remembered all the time she sat at the boardwalk and watched people water-ski, ride jet skis, and kiteboard.

“Why didn’t I feel the pull to water-ski then?” Steph wondered. The only answer she could come up with was that everything has its time.

***

The water sports centre had an indoor pool where Steph first practiced to water-ski. At first, it was tough for her to learn how to balance on the water, and she couldn’t believe she would ever be good at it, feeling disheartened.

It didn’t help that Mr. Carver insisted she trains with able-bodied kids who all appeared to have some experience, but then she would get some extra coaching afterwards.

“Teamwork is good for you, Steph. It’s going to help you learn faster,” Mr Carver said. Who was she to doubt? Besides, her fellow learners were encouraging & even giving advice once they had overcome their initial shock.

While she came back home with lots of bruises, Stephanie’s was high, & this feeling returned after each training session. She did it every weekend, but Steph wished she could do it every day. However, she knew she must pace herself to avoid getting sick, thus losing out on all the fun.

***

After weeks of learning the basics in the indoor pool, it was time to go into the ocean. Steph would never forget the unbelievable feeling when they rolled her down into the ocean water in her beach accessible wheelchair.

The waves were a bit intimidating, but once she got used to them, she felt like spending forever in the water. With the help of Mr. Carver and Todd, she got used floating in the water and feeling the waves wash over her without fear.

After a week, Todd and Mr. Carver strapped Steph into her sit – wakeboard and hooked it onto a speed boat. They then took her for test rides at slow speeds with two other employees of the water sports centre supporting her on either side of her board.

She thought they were treating her like a fragile egg and didn’t like it. But Mr. Carver said it was standard procedure when teaching disabled people to water-ski.

“It’s just until you get used to the waves and learn to balance Steph. You have to understand that ocean water is different than the pool, okay?”

“OK then, Mr. Carver, ” Steph said. She was prepared to follow the rules just to be allowed to water-ski in the ocean. Already she could feel the other learners treat her with a little bit more respect for venturing into the waves, and she liked it!

***

It took a couple of weeks to get her balance on the ocean water, but Steph finally started water-skiing without support. With each passing day, the speed & difficulty were increased marginally, and it was terrific. To feel the wind on her face and her body glide effortlessly over the water while on her sit -wakeboard was a dream come true.

Learning how to ski with able-bodied kids was great. They really supported her, but Steph could see they didn’t really think she could do any of the fun tricks they could. She wanted to prove them wrong. So, every time she had one-on-one sessions with Mr. Carver, Steph concentrated on learning how to do one awesome trick. She wanted to master the 360 degree turn, and was working hard to achieve it.

The use of her adaptive equipment made skiing safe and easy to learn for Stephanie. Usually, she used a sit-ski, outriggers for stability on the water, and arm slings to support her arms, but for the trick, she was learning to do, Mr. Carver had her use the sit-wakeboard.

Apart from the thrill water-skiing gave her, Steph could feel her body growing stronger. She also started doing some extra physical exercise at home with her mom to get fitter.

With time, Steph felt she was more in control of her skis. She had learned the rules, top of which was to relax, maintain her balance, and of course, to enjoy herself.

***

After a class one day, Mr Carver took her aside after class and gave her a brochure. It showed that there was a small tournament in the area for water-skiers, and they were accepting amateur disabled water-skiers to sign up. This seemed quite a specific category to Steph, but maybe there were more people like her than she had imagined. Some of her fellow learners were going to participate, and Mr Carver thought she would be interested too. Of course, Stephanie said yes. What was there to lose? Other than the competition, of course. Most important of all, what better place was there to show off her new trick?

When she got home, Stephanie excitedly told her mom about the competition.

“Are you sure, Steph? If you can’t do it, it could be very demoralizing”. Her mom said, only half listening as she tried to balance several loads of laundry while avoiding the rogue disability aids that littered their home.

“I don’t mind mom, I just want to give it a shot,” said Steph.

“Okay, honey, let’s do it!” mom said.

Steph was over the moon again, but a little anxious too. Could she actually do it?

***

After Mr. Carver put her name in for the competition, and they met all the requirements to enter, it left Steph with only three weeks to prepare. They were a pretty emotional three weeks. First, she was afraid, then she was petrified, but then the excitement would kick in again.

The day of the competition came, and everyone at home was on tenterhooks. She could see some doubt in the family’s eyes, but she felt supported none-the-less. Even her pals at the water-ski centre came to cheer her on if they weren’t already competing.

Watching the other able-bodied skiers at the competition do their amazing tricks, Stephanie wondered if she could do it. But when she saw other people with disabilities showing off their tricks, she was confident she could at least meet the basic standard.

Then she heard her name over the loudspeaker, mispronounced as ever.

“Up next, Stephanie Kowalski!”

Everyone was wishing her well as she made her way to the start of the course, but she could barely hear them over the sound of her heart was pounding in her ears.

Then she was out on the water, feeling the drag of the wind in her hair and the water under her wakeboard, and like a drunk at Christmas mass, she suddenly remembered why she was there. She loved this, she knew a great trick, and she was here to show it to her family and friends.

Off Stephanie went on her wakeboard, moving out to the middle of the water, preparing and then turning all the way round, executing her 360 just like Mr. Carver taught her. She could only hear the rush of the wind in her ear and not the applause she expected the crowd were making, as she concentrated on landing the move, but she felt fantastic! When she glided to a stop, she was surprised to hear silence.

“What happened?” she wondered, ” Did I mess up?”

Then after a silent moment, the crowd erupted (not literally), & there was thunderous applause. When Steph looked at her mum, scouring the crowd until she saw her face, she saw that her mum appeared to be crying and jumping up and down. So were her other family members.

“Steph, that was amazing!” Her mother screamed.

Steph looked at her pals from the ski centre, and they were applauding too.

Over the noise of the crowd she could hear the announcer say;

“Fantastic trick there from beginner, yes beginner, Stephanie Kowalski (with butchered pronunciation again), ladies and gentlemen! What a performance! Congratulations Stephanie!”

Right there, Steph knew that she wanted to do this for the rest of her life. Who knew what other tricks she could do? Her adventures were just beginning!