Author: diaryofadisabledperson

My multi-award-winning blog discusses what life is like as a disabled bisexual woman. I have a 1st class honours degree in nutrition from the University of Leeds where I now work in medical research, an achievement which was undeniably difficult to reach. Outside of work I have a passion for wrestling, rock music, and the MCU. You can find me on Twitter, Facebook, and Instagram simply by searching diaryofadisabledperson.

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.

DiceRoller.

I’m just gonna say it: I’m a big nerd on wheels. I love Star Wars, Star Trek, Marvel, DC, video games, board games, & table-top role-playing games, & I obstinately refuse to grow up.

I started table-top gaming about 18 months ago, & I play different versions of the same character in every game I play; a medic with ranged combat skills. Given my education & work experience, I can pad out the medical parts with real medical jargon, which my friends seem to enjoy as it adds to the immersion of the experience.

I’d actually tried the latest-but-one edition of Pathfinder some time before getting into gaming properly, but found the immense ruleset overwhelming & it put me off. Finally, I managed to regain the confidence to go for something a little simpler; Warhammer 40k Wrath & Glory. It was in this campaign that I created my favourite character to date; Aethena, battle-sister hospitalier (female medic with a rifle), who used a powered wheelchair as part of her armour, with a canid (dog) companion. I loved it.

Once I was accustomed to some of the universal concepts of table-top gaming such as turn-based combat, & the fact that instead of being competitive it was cooperative, eliminating some of the more toxic elements associated with nerd culture, I was willing to explore the medium further. The next game I tried was an obscure system called FATE that worked on similar principles to Warhammer 40k W&G, but had no pre-set world, instead allowing you to create one & apply the game rules to it.

As that campaign drew to a close, I picked up the classic Dungeons & Dragons for the first time, meeting weekly at one of my favourite venues in the city after work. I chose to play a Druid almost entirely for the connections to the animal world, called Omra, & began to get really invested in the more complex ruleset (although this still doesn’t come close to Pathfinder).

Alongside this, I returned to Warhammer, this time in Warhammer Fantasy Role Play. Given the older, medieval-style setting, it would have been unrealistic to have a female medic, therefore my character simply pretended to be a man by doing cliché “manly” things to get through medical school. This is a character I will be returning to in future when I play Warhammer Age of Sigmar, as at the inevitable destruction of the world (spoiler alert), I was conveniently chosen as one of the souls worth saving & putting into another body in the future.

Currently, I am playing my favourite of all the games I have tried; Call of Cthulhu. It’s a careful balance between mysterious exploration & pure chaos, & I love it.

Each of the campaigns I have played has had it’s classic moments, from me using my healing skill to torture someone for information (who said I was the good guy?), to booting a sheep out of a window while yelling This Is Yorkshire (which only gets weirder with context). Still, I have avoided the most embarrassing of all the memorable moments, which was when our poor wizard bled from his eyes & ears, then proceeding to…defecate…in his trousers. We like to bring this up approximately fourteen times per session.

You might be wondering why I’m talking about this on a blog about disability, aside from playing a character who used a wheelchair in Warhammer 40k. Simply put, role-playing is as accessible an experience as you want it to be. You choose the venue. You choose the rule-set. You choose how to display character information. It’s highly adaptable, meaning just about any disability imaginable can be adapted to.

We have this notion that role-playing games are predominantly overrun with white guys who are so nice they can never understand why every woman they ever meet doesn’t want to sleep with them. I’d be lying if I said there wasn’t any toxicity in table-top gaming, but there are also more than enough people willing to include all races, genders, sexualities, & disabilities to make it worth it.

Through my role-playing games I have developed strong friendships. There is something about exploring an imaginary map together, fighting enemies alongside each other, & healing others when they’re down that brings people together. It’s not an experience to everyone’s tastes & that’s understandable, but if you’ve been thinking about trying it out, there’s sure to be a role-playing group somewhere in the local area. Just, don’t start with Pathfinder.

Ableism In Four Words.

Social media is often portrayed as a toxic environment full of lies & fake news, & frankly, it’s a reputation well-earned. However, it also has the power to reach millions of people across the globe, & when you have a message that needs to be heard, it is a useful tool.

A lot of my social media content focuses on ableism, contains a colourful array of language that would make a marine jealous, & for some strange reason over 10,000 people think it’s worth following. However, compared to the juggernauts of Twitter I cause only the most miniscule of ripples.

That was until an unassuming Monday morning at the start of February, when I was trundling along into the office & had an idea. As I was waiting for my computer to switch on, I crafted a handful of tweets all using the hashtag #AbleismInFourWords.

Very soon tweets using my hashtag began to appear on my feed.

By the end of the working day, quite unbelievably, #AbleismInFourWords was somehow trending in fifth place for the entire UK, just behind Brexit which had only happened a few days prior, & coronavirus as two cases were confirmed in Britain.

As with anything of that magnitude on social media, it also attracted a fair share of trolling. Personal favourites included those using #AbleismInFourWords to patronisingly explain why talking to us as in a slow, condescending tone while gesticulating wildly was not ableist at all, which if anything only served to prove my point. There were several accusations of being an easily-offended snowflake from people who found my hashtag offensive. Usually I have very little time & patience for trolls, often blocking & reporting them before they can continue, but this time I decided to be the bigger person. So I posted this:

It seems that #AbleismInFourWords has had quite an impact on the disabled community, as I received many messages & tags commending me for what was really nothing more than a spur-of-the-moment idea. It was quick, catchy, & could be applied to an array of scenarios both funny & serious; there was really nothing more to it.

Social media, for all its numerous short-comings and faults, is not always the evil we make it out to be. Sometimes, a tiny spark of inspiration is all that’s needed to create a positive trend that reaches out to many, many people, spreading humour & inspiring people across the globe.

Pulling a Healthie.

If we’re all being totally honest, we’ve probably tried to pull at least one sickie (pretending to be ill to avoid school/work) at some point. I know I have (sorry mum). It’s said that sick leave costs companies billions every year, almost as much as a CEO’s monthly bonus, & that people pulling sickies probably contributes quite a lot to that. However, in the modern age of oh-look-there-goes-the-economy-again, a new & opposite problem has arisen. People are going to work when they are sick, potentially spreading infection to their colleagues & reducing productivity.

This little quirk of the modern age, where super lazy millennials drag themselves into their three underpaid jobs to be able to pay the rent on their rabbit-hutch apartment, has been named Presenteeism.

Obviously, you’re probably not going to be working at peak performance by coming into work when you have the flu, & even worse, you could spread your illness to colleagues. There’s nothing quite as dreadful as watching a cold work its way around the team like a snotty game of Russian Roulette, knowing that eventually it will be your turn to wake up feeling like a frog vomited in your nose (not that I know what a frog vomiting in your nose feels like). For the sake of any colleagues who may be more at risk from infections, it is definitely inadvisable to crawl into the office. If it came to it, remotely working from home is now an option for most offices anyway.

However, during a recent discussion about presenteeism, I distinctly felt some ableist undertones creeping through. The person speaking made no distinction between coming into the office with a temporary illness & coming in with a chronic illness. I had to sit at the back of the room listening to a speech about how sick people couldn’t do the same quality of work as healthy people, & had to bite my lip. By her definition every day I came into work was a day of presenteeism, & I was costing the company substantially for it, even if that wasn’t what she explicitly meant.

While not everyone with a disability or chronic illness can work, those of us that can should not be held back by the presumption that we’re all the same. The notion that we’re less efficient & more costly makes it nigh-on impossible for disabled people to find work. However, with the help of a government scheme, staff support, & my own experience of chronic illness, I have managed to adapt to the role of Data Management Assistant. After some teething issues I am now performing at & above the required level, which is closely monitored, & am easily keeping up with my colleagues. I may be sick but I can do my job, & do it well.

Fortunately, I am lucky enough to work somewhere that when I gently reported the ableist interpretation of presenteeism, I was listened to & instead of being told to stop whining (a genuine response I have encountered more than once), & my feedback seems to have been taken seriously. In future the distinction between temporary & chronic illnesses should hopefully be made when discussing presenteeism, & that I count as a success.

You probably shouldn’t be pulling sickies, however tempting.

You definitely shouldn’t be pulling healthies, if you’ve got the flu.

That said, if you have a chronic, non-infectious illness that can be worked with, the notion of presenteeism shouldn’t disadvantage individuals searching for work, which unfortunately is the current situation.

Perhaps, instead of blaming employees for spreading illness to others, we should be blaming the era of austerity that allows CEO’s to be paid 133 times that of their employees. But what would I know? I’m just a lazy millennial.

Know It All.

Every so often I encounter a doctor who was simply born for their role; knowledgeable, competent, & with an excellent bedside manner. Admittedly I see that many doctors that at some point it was bound to happen. Anyway, during a recent appointment with such a doctor, he sighed, looked at me, & said;

“I get the feeling you’ve been told there’s nothing we can do for you for most of your life, but again, there really isn’t anything to be done.”

I almost cried.

Not because there was nothing to be done about a particular symptom that, if I’m being honest, doesn’t reduce my quality of life by any significant margin. I almost cried because it was one of the first times a doctor hadn’t tried to soften the blow by pretending to offer some woefully ineffectual “treatment”, but had recognised that, unlike Tom Cruise, I could handle the truth.

I happen to live with multiple conditions that are nigh-on impossible to treat beyond symptom management, & even then the symptoms can only be lessened rather than eliminated altogether. As such, I’ve become very accustomed to hearing doctors desperately clutching at straws to make it seem like they could cure me, when the simple truth was that they couldn’t. I don’t know whether this behaviour stems from a certain arrogance that some doctors have, or whether it is something that is taught during medical school, but it is a rarity to hear a doctor admit that they don’t know.

The truth of the matter is that doctors simply couldn’t hold all of the information about all of the diseases in the world in their heads, even within specialised fields. Sometimes, they’re going to need to look something up, do some further background research, or consult with another professional, just like in any job. Unfortunately, many doctors refuse to admit when they need help, & so they will spin a good yarn instead.

Not knowing something in the vastly complex & ever-expanding field of medicine is not a failure. Admitting it is also not a failure. Giving a patient false hope, or just wasting their time, is. I would much rather not waste my limited energy chasing after an ineffective therapy, than to be told an inconvenient truth.

Of course, being told nothing can be done is still pretty disheartening. It would be nice if one day someone could tell me that something can be done & was also speaking the truth as they said it. I guess what I’m really saying is that I value honesty over pretending that everything is alright, even where my own health is concerned. Being a know-it-all doctor isn’t reassuring, & many chronic illness sufferers can see straight through the façade after a few months.

All of this being said, there is still something to be said for breaking the truth gently, particularly for those new to the delights of chronic illness. Breaking bad news to patients & their loved ones is an unenviable task. It probably wouldn’t be particularly useful to simply say;

“You’re sick as hell & I can’t fix it. Thank you, next.”

For example, the radiologist said “oh dear” as he did an ultrasound to find my gall bladder impersonating a maraca. This wasn’t particularly reassuring, but fortunately having studied gall bladder disease shortly beforehand, I already knew exactly what I was looking at.

However, the doctor who came to visit me on the ward afterwards perched on the end of the bed & explained to me what gall stones were, what the gall bladder’s function was, & how to kill it. It was something of a revision session for me, so I didn’t tell them that I knew what a laparoscopic cholecystectomy was until after having it explained, much to their amusement. However, the bad news that I would need emergency surgery (my gall bladder was extremely inflamed & potentially could have burst, which I think would look something like the chest-burster from Alien) was broken to me in a perfectly calm & composed manner.

In this situation the doctors knew what to do, which probably made it easier to break the bad news to me.  However, I do wish that when discussing incurable chronic illnesses, doctors wouldn’t dodge around the truth so much, but would tell it as it is in a straight-forward manner. Or maybe I’m just too Yorkshire for my own good.

A Game of Risk.

Very early on in my degree I was introduced to the concept of risk-benefit balance. For example, is using preservatives to reduce food waste worth the potential risk to health? Given that food spoilage & poisoning causes substantially more damage than the rigorously tested preservatives used on food, which have been shown countless times to have minimal, if any, impact on health, it is definitely worth the risk. Quite simply, if the benefit outweighs the risk substantially, it’s probably worth doing. If the risk equals or outweighs the benefit, it won’t be done. Of course, quite how you quantify risks & benefits is somewhat subjective, but there are standardised methods of getting an estimate.

This concept doesn’t just apply to food, but has applications in almost every field, including medicine. My work in clinical trials revolves almost entirely around this concept; we introduce new medicines & therapies to patients, monitor the risks, compare that with their efficacy, & this research is used to direct the future of healthcare. There is also an element of health economics, & the inception-style study of studies & their impact on healthcare, but it always comes down to the risks & benefits.

In people with reduced mobility, using the contraceptive pill could potentially result in deep vein thrombosis, where cholesterol hardened into a sort of scab dislodges from its original place, & becomes wedged in one of the larger blood vessels deep below the skin. It can cause all sorts of issues such as a cerebrovascular events (strokes), myocardial infarctions (heart attacks), or most commonly, pulmonary thrombosis (where the clot obstructs the passage of blood through the lungs, meaning oxygen cannot enter the bloodstream & carbon dioxide is not expelled). Cardiovascular disease is the leading cause of death in many western populations if not globally, so obviously it is something to take very seriously. That’s not even to mention the potential links to breast cancer, something which runs in my family.

I was using the contraceptive pill long before I started having sex; in fact, even once I was having sex it’s primary use was not as a contraceptive. I used it to try & control the irregularity, heaviness, & extreme pain menstruation has caused me since starting a decade ago. Nosebleeds, sickness, acne outbreaks, bloating, intestinal pains, constipation, & headaches plagued me with each period, as did ovulatory pains mid-cycle. At first I was told it was normal. Then it was because of puberty. Then it was because of my other chronic illnesses. Then it was because of painful spasming of the vaginal muscles. Then they finally decided they would quite literally stick a camera in my guts to see what was really wrong. At the time of writing I still don’t know how that goes, or what the outcome is. Hopefully I survive.

My point is, the contraceptive pill helped me manage all of those symptoms, until one day a doctor panicked about the risk of deep vein thrombosis & took it away. The alternatives offered I had previously tried & found to be ineffective, or I simply couldn’t manage such as the coil which is painful in healthy women, let alone this rolling bag of chronic illnesses. Eventually, I was left without an alternative, & I returned straight back to the misery I had been protected from since my early teens. On top of my other illnesses, I could barely stand upright without blacking out.

I fully appreciate the risks deep vein thrombosis present, but I am already sick & in pain. I cannot fathom why the chance that something bad might happen in the future outweighs the benefits I will definitely receive from accessing treatment now. You could argue that a heart attack is far more likely to kill me than what we suspect is endometriosis, but there are also things within my control that I can do to reduce the risk & damage inflicted by a heart attack, unlike whatever this is. I literally have a degree in nutrition & diet is a major contributor; I am trained to handle this exact situation.

The contraceptive pill is just one example of this ridiculous situation, where current symptoms are denied treatment in favour of trying to prevent a future possibility. I have no qualms about doctors informing me of the risks & wanting to avoid them if possible, but no risk can outweigh the benefit of certainty. Certainty that my current symptoms will be manageable. Certainty that I will be able to stand up without passing out. Certainty that I don’t have to spend my days curled up on the bathroom floor, with only a hot water bottle & paracetamol to combat the pains, which feel like someone has put a vice around my guts & is slowly tightening it. Certainty that my quality of life right now will give me a future, whatever that future looks like.

I am not ignoring the risks; I accept the risks. I understand. But surely it should be up to the discretion of the subject that, once all the information has been provided in an accessible way, I get to make up my own mind about how I live? I was happier living with the Sword of Damocles’ dangling over my head than I am feeling like it’s already stabbed me, & if they’re my only options, then I’ve made my choice.

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!