We Want To Live.

We want to live in bold white text in a red heart, over a black and white image of hospital beds.

The media has done an excellent job of suppressing this, but I will not be party to that.
Some sick & disabled people are being asked to sign Do Not Resuscitate forms, as ventilators will be prioritised for people who aren’t already sick.
This is eugenics disguised as a way of helping the NHS. So, instead of punishing the people who have stripped the NHS of it’s resources and staff, disabled people are being asked to sacrifice themselves for the greater good, because our lives are so pitiful as to be worthless.
Our lives are worth living, & we deserve equal access to healthcare.
If you agree with this idea on any level, whether you’re a healthcare professional who thinks it’s just helping the NHS out in desperate times, or someone who thinks it’s a worthy sacrifice, please unfollow me. Unfriend me. Don’t comment trying to defend the inexcusable. I don’t care. I will not have people who prescribe to eugenics on my social media.
https://www.bbc.com/news/uk-wales-52117814

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: 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.

Diary of a Disabled Feminist: Passion for Fashion.

Sunday 8th March 2020 is International Women’s Day, & as I am one of the people being celebrated on this excellent day, I decided it would be the perfect opportunity to launch Diary of a Disabled Feminist, a three-part mini-series on disability in women’s issues & feminism. The first part will focus on fashion, the second on diet & weight, & the final piece will be on feminism itself.

Of course, none of the issues I will discuss are limited to only women, with non-binary people & men often being affected by them too. However, as I will be talking mostly about personal experiences, the problems will be discussed in relation to my gender; female.

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It’s no secret that I take great pride in my sense of style. I like my clothes, shoes, & make-up, although I tend to find hairstyling to be a chore, primarily because there is just so much of it. For all the praise I receive for my outfits, I also seem to draw some ire, some in regards to my gender, & others in regards to my disability.

The way women dress is often weaponised against them, & from a young age strict dress codes are imposed upon us. The implications of teachers feeling uncomfortable at the sight of a school-girls bra strap should certainly make you uncomfortable, & for some strange reason showing a shoulder is the ultimate display of sexuality, apparently. The attire of celebrities & prominent women is constantly scrutinised in the media & this fixation filters down to normal members of the public.

Wearing comfortable, practical clothing to run errands can lead a woman to be stereotyped as lazy, & complete strangers may feel entitled to say as much. However, making an effort to select nice clothes & put on make-up often leaves women vulnerable to unwanted attention from strangers, & should something as horrid as a sexual assault happen, her attire may be used to defend the perpetrator. Some of us are even deemed “fortunate” enough to draw the unwanted attention without making much effort at all. We can’t win.

How you dress as a disabled person will also get you judged by strangers. Some people have tried to use the fact that I sometimes make an effort to apply make-up & style my hair as “proof” that I’m not as sick as I say I am, or more appropriately as sick as my body tells me I am. Perhaps the most baffling instances come from those who comment on how I shouldn’t be able to walk in stiletto’s & funky high heels; the fact that I don’t actually walk in them usually eludes them until I point it out. When dressed nicely, I’ve even had men say that I should be grateful for their creepy advances because it can’t happen often to disabled people. I was too tired to punch them, sadly.

Even going out to buy clothes presents additional issues for disabled women, primarily stemming for accessibility issues & a lack of accessible resources, but also in regards to other shoppers too. A few weeks ago I went bra shopping, & while I wanted to pick up something comfortable & practical, I also wanted something pretty. This can be challenging enough for anyone over a C-cup, but the looks of surprise I received while browsing the racks of pretty bras were beyond irritating; why on Earth would a disabled person want a pretty bra? Aside from the fact that it’s an excellent bribe for my husband when I want something, any woman wants to feel good about themselves sometimes, & a nice bra can do just that.

It would seem that being judged for my outfit choices is inescapable. If I wasn’t disabled, I would still have to contend with sexism. If I wasn’t a woman, I would still face ableism. Combined, the two form an onslaught. Disabled or not, woman or not, I have the right to wear what I am comfortable in without judgement.

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.

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.

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.