The Corona Diaries.

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

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

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

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

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

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

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

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

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

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.

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.

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.