Wheels of Steer.

Being out & about in a wheelchair is not without its challenges. I believe that pavement parkers have a special place reserved for them in hell (which they probably won’t use anyway), & I’ve had more fights over blocked access routes & misused facilities than I could possibly count, even if I took off my shoes & socks. However, for what it’s worth, I actually enjoy riding around in my wheelchair.

First off, it’s significantly less painful than trying to walk everywhere, even when cobbles are involved. This means that I don’t always feel like I’ve stuck my leg in a wood-chipper, not that I’ve ever actually done that, & I can also go much further & faster than if I didn’t have a wheelchair.

I may also be the only person in existence who actually enjoys their commute. Admittedly I don’t have to use public transport or try to find car parking, which seems to be what most of my colleagues find hardest, & work is only 20 minutes away from home. However, perhaps the biggest reason for enjoying my commute is my love of music. I’m more than content to ride along with my headphones on, low enough that I can still hear what is going on around me so I don’t get mangled by a car, but loud enough to block out people. I’m in my own little bubble of existence, & with that I am content.

In fact, here’s an actual image of me going to work:

Dizzy the orange cement mixer from Bob the Builder, with headphones on.
For context: this is Dizzy the cement mixer from a British children’s TV show called Bob the Builder. It was my favourite show, & Dizzy was my favourite character.

People see the wheelchair & immediately pity me, thinking I must me miserable that I have to use a one. What they don’t realise is that without a wheelchair, I would be stuck at home, bored & still in pain, imprisoned by my illness. The wheelchair is my liberation from that. Of course, it would be even better if people weren’t ableist a-holes, but I guess you can’t win them all.

The look of pity is not restricted to when I am alone, either, & I often encounter it when I’m out with friends or family. Better yet, when both my mum & I decide to use our wheelchairs simultaneously (not the same wheelchair, I might add) we get to form the greatest force for generating pity in the universe; a wheelchair convoy.

These pitiful expressions used to annoy me, & in truth they still do, albeit to a lesser extent. However, on some level they also amuse me, especially on my commute. There they are dressed in uncomfortable clothes, marching into the office with a look of gloom on their face, pitying me, the woman riding to work in jeans, listening to music without even a touch of the Monday blues. I know that I stand out (pun intended) from the commuter crowd, but I believe that this has less to do with the wheelchair, & more to do with the fact that journeying around just isn’t a burden for me.

That is except, of course, for when I encounter pavement parkers. They can just piss off.

Diary of a Disabled Feminist: Embracing the Flab.

Welcome back to Diary of a Disabled Feminist; this is the second part of three in the mini-series. You can find last week’s post here.

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Despite the recent efforts to include “plus-size” women in modelling, women are still bombarded with unrealistic beauty standards. The “prettiest” models are still the thin ones, & Photoshop is used to turn every roll into a simple crease, whatever size the model is. As an expert on the human body, this frustrates me beyond belief.

I am a nutritionist. My mum is a nutritionist. I grew up knowing about body image & the media, & even with that knowledge it was still hard not to fall foul of wanting a flat stomach. I was extremely active & ate approximately 1,800 kcal daily, so I was actually fairly skinny but not unhealthy with it. Then the meningitis happened, I burned far less energy every day but consumed the same, & unsurprisingly I…expanded. Today my stomach is certainly not flat, but now also bares six scars courtesy of two abdominal surgeries.

On the whole I have a relatively healthy diet; it would be hypocritical of me not to. According to the media, this means I should have the perfect figure, but that’s not how science works. I have a healthy Body Mass Index (and yes, I am more than aware of the limitations of this measurement given I have a degree in it), but I still have rolls. I still bloat when my period approaches, & my breasts aren’t perfectly symmetrical. My thighs still do the sploot when I sit down, & they’re cellulite central. I even have stretch marks as some of the changes from puberty were that sudden that my skin literally stretched. Also, when I don’t have the energy to shave which is quite often, my leg hair gets impressively long.

While there are definite health benefits to having a BMI within a particular range, those who fall outside of that range still deserve to feel confident in their own skin. Frequently I see comments on social media stating that plus-size celebrities are promoting obesity & an unhealthy lifestyle. Of course, I have only ever seen these comments in relation to women in the limelight like Lizzo (#queen), & never about male celebrities like Jack Black or John Goodman, suggesting that double-standards are distinctly at play here. These people also seem to forget that the stick thin “heroin-chic” models of the 90’s were hardly presenting a healthy lifestyle.

Being disabled has taught me the hard way that whatever you do, your body will find a way to do its own thing, including both function & form. I could waste energy fighting that, or I could learn to work with it. I don’t love everything about how my body looks, but I find that it’s important to highlight what I like as much as what I dislike. I have pretty eyes (that don’t work). I have curvy legs (that don’t work). I have decent boobs (which, as of yet, I’ve not had the chance to test if they work). If I could simultaneously be deemed too thin & too fat during school (yes, this happened) then someone will always feel entitled to critique your appearance. Often, these people are only taking shots at your appearance because your personality can’t be insulted.

Keep the Change.

Despite our adaptability, humans are obstinate creatures who distinctly dislike change. Even when change is good, we’re often resistant to it at first, finding increasingly trivial reasons to avoid making the necessary effort to go through with it. Whether it be moving house, changing jobs, or something as simple as rearranging the kitchen cupboard, we often find reasons to procrastinate. Much as we dislike it though, change, much likes taxes, is inevitable.

Just like everyone else, there have been a lot of changes to my life over the years, & perhaps the most significant & impactful one of all was becoming disabled. Disability affects your entire existence; suddenly I had a new set of problems to contend with, mostly revolving around accessibility wherever I went.

At first, I resented the change. I had enough to worry about without contending with access in education, work, medical services, & social activities. Naturally I didn’t want to be in pain all of the time, disbelieved by everyone around me, & ostracised by those I called my friends. Even after a few years, I still resented my disability & wanted nothing more than to go back to being able-bodied.

However, when I started university, my perspective began to change. Had I not been disabled, I would have chosen to live in a much cheaper residence without catering, probably a small distance from campus, & I certainly wouldn’t have stayed there for more than a year. However, because I didn’t have the energy to both cook for myself & study, & because of accessibility concerns both for accommodation & transport, I remained in a catered hall of residence for my entire degree. Had I not stayed in this hall I would not have met one of my closest friends in the first year, nor would I have met my now husband a year later.

Accessibility concerns also mean that we reside in the city centre, which although it increases the rent has a significant impact on the resources available to me without the need to contend with public transport. I probably wouldn’t have applied for city-centre jobs either, making the chances of me obtaining my current role at the university highly unlikely, & although it has its rough moments, I adore that job.

It’s taken the better part of a decade, but I’ve finally begun to accept the change that I initially believed had destroyed my life. This doesn’t mean I’ve given up on getting better, or that I don’t want to get well, it just means that if this so happens to be my experience for the rest of my life, I won’t resent that. All in all, this attitude shift has had a significant impact on my mental health, which was the aspect of chronic illness I found the most difficult to deal with.

Life is chaotic, & fixating on long-term plans is, in my experience, a bad idea (note: having some sort of plan is not a bad idea, just don’t be inflexible with said plan). There will always be a curveball that changes circumstances in ways you never imagined, & not always in a negative way. The way I see it, you can either accept the chaos & just go where it takes you, or you can spend your entire life resisting it. There’s probably something to be said for trying to find order in the midst of life’s chaos, & maybe we need a balance between the two, but for my own purposes I try not to let any apprehension I might feel about change get in my way.

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.

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.

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.