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!

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:

A teal circle on a white background, with a white snowflake in the centre. The Fearless Snowflake Award is written in deep blue text accross it.

If nominated, to accept the award there will be a few rules:

  1. Thank whoever nominated you, & link back to their blog.
  2. Link back to this blog post, & name Diary of a Disabled Person as the creator.
  3. Display the logo.
  4. Nominate 1 – 3 individuals, & make sure to let them know!
  5. Write a couple of paragraphs describing why each of your nominees deserves The Fearless Snowflake Award.
  6. 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.

Womb of Woes: Part 2.

My second appointment was with a different, younger doctor. Once again I reeled off a list of my symptoms, fully expecting them to be ignored. Therefore, it was something of a surprise when he actually listened to me. When I explained that the inability to have sex, which can be attributed to an entirely separate condition called bilateral dyspareunia, was not what I considered to be a problem, he listened. The focus was shifted onto my other symptoms, & a discussion about diagnosis & treatment was quickly underway, which came to a drastic conclusion. For three months they would use hormones to medically induce the menopause at age 22. If my symptoms stopped, they would undertake a diagnostic laparoscopy, quite literally sticking a camera into my guts to identify the problem.

It took a few weeks to start the treatment as my ordinary doctors were adamant that I was making a fuss over nothing & didn’t need anything quite so invasive (read: expensive). However, I basically annoyed them into submission, & the following three months were the best I had felt since my periods began. The symptoms were eliminated overnight. It was bliss. Even with frequent hot flushes, I was far happier.

All good things must come to an end, & those three heavenly months were soon up. I returned the hospital & saw yet another doctor, this time the head of the department. He was openly disbelieving that anything was wrong, despite the hormones showing such drastic improvements, & tried to dissuade me from undergoing surgery. However, after almost 11 years of fighting to be heard I refused to back down, & my surgery was set to take place at the end of September.

As the surgery approached I became increasingly nervous. You’d have thought that my nerves stemmed from the fear that it would go wrong, or concern for what they would find, but I was actually most afraid of them finding nothing. The leaflets given me all stated, in nicer terms, that if they didn’t find anything via surgery that there was nothing wrong with me, & that I would be discharged. I knew that there was something wrong with me, & had suspected for years that it was endometriosis, but now a definitive answer approached I began to doubt what I knew.

Eventually the day of the surgery arrived. As I was in the ward preparing for the operation, the anaesthetist came to speak to me. With the very briefest of greetings out of the way he immediately asked why I used a wheelchair. I answered, & was immediately asked how I was diagnosed with M.E. I failed to see how this related to the procedure but answered anyway. I was then asked if I did any exercise, & when I answered in the negative I was grilled as to why. He refused to accept that exercising more wouldn’t cure me, & looked down his nose at me in disdain. He added that as a chronic pain patient I could expect to experience more pain than normal upon waking up, but that they would treat that as they saw fit. Clearly, I was just another hypochondriac making a fuss about nothing. Fortunately the head surgeon, who visited me a few minutes later, was much kinder & more sympathetic.

It was approaching 2 pm when I was asked to walk to the operating theatre. They were surprised when I couldn’t just manage the “tiny” stretch of corridor which was at least 150 metres, without any walking aids. However, one of the nurses took the initiative & pushed me there in my wheelchair, saving me from further embarrassment.

The pre-op room was chilly, & as I stood in the thin gown in front of five men & a woman, I suddenly felt very vulnerable. I lay down & was given oxygen via a mask clamped far too tightly onto my face, making it difficult to breath, & a trainee doctor put the cannula in my left hand. He was so nervous about hurting me that he didn’t push the needle in deep enough & it fell back out, so then they had to try again on my right hand. He was mortified but I assured him it was fine; no practice model will ever be able to replace the real thing. As the ceiling tiles started to spin & merge above me, the nurse squeezed my hand.