Wheelchair – Diary of a Disabled Person.

The Fearless Snowflake Award.

As a blogger I’ve been lucky enough to be the recipient of multiple awards, & I think it’s high time that I gave something back to the community. More than anything else I wanted to create something slightly different, something that recognised the content & quality of a blog, but that also recognised someone’s dedication to their chosen topic.

There are certain topics that, on the international stage of the internet, will attract scathing criticism as well as support & praise. Particularly, political matters & social justice can leave creators open to insults such as “Social Justice Warrior”, or “Snowflake”. Now I, for one, have never had a problem with being called either. Who on Earth thought being described as a warrior for justice would be an insult must be a very…special…individual. Similarly, snowflakes are uniquely beautiful on their own, but together can transform the world (&, as someone pointed out to me on Twitter, can bring an entire city to a halt). Why either term has become an insult is beyond me, but here we are nevertheless.

There is a small trend of certain words, traditionally used as insults, being taken up by victims as a way of fighting back against oppression. Punk was once used an insult instead of being one of the greatest musical genres on the planet. The LGBTQIA+ community is more than happy to use the word “queer”, & some disabled people have described themselves as “cripples”. Perhaps most famously, people of colour are using the N-word. It makes a mockery of those dealing out the insults, & leaves them scrabbling to find more.

I think it’s time to take back snowflake, & instead of it being used as a derogatory term to describe someone with a conscience & empathy, it should be used to celebrate individuals who advocate for equality both on their blog, & in real life. “The Snowflake Award” sounded rather sarcastic, more akin to a Golden Raspberry rather than an Oscar, so this is what I came up with:

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

Thank whoever nominated you, & link back to their blog.
Link back to this blog post, & name Diary of a Disabled Person as the creator.
Display the logo.
Nominate 1 – 3 individuals, & make sure to let them know!
Write a couple of paragraphs describing why each of your nominees deserves The Fearless Snowflake Award.
Get in touch with me so that can pass on my personal congratulations.

To get the ball rolling, I’m going to nominate 3 people for The Fearless Snowflake Award.

The first is Crutches & Spice author, Imani Barbarin. Imani runs an excellent website full of interesting content, & is also extremely active on social media. A quick explore of CrutchesandSpice.com will make it obvious why she is eligible for this award; she doesn’t just write about equality for disabled people, but takes action too. She is constantly giving talks & presentations, & has absolutely no qualms about being a loud & clear advocate for social equality. Her efforts are admirable & deserve recognition.

Next up is Gem Turner, author of Gemturner.com. Gem has a sense of humour on a parallel with most comedians, & again is active on Twitter. She writes well about her passion for social equality, & again has experience as a public speaker to back her up. She will also speak up for herself in the moment, speaks the truth without hiding behind fancy language, & demonstrates that disabled people have more to them than their conditions.

Finally, we come to someone I consider to be a friend, & who I had in mind for this award from the very beginning. Her name is Dr Amy Kavanaugh & she is the author of Cane Adventures, the creator of #JustAskDontGrab, & has appeared on television on multiple occasions advocating for the rights of visually impaired & queer women. She frequently shares her experience of day-to-day life in London, often using public transport (including the tube) at peak times & recording her experience to demonstrate her message. She shares both the good & the bad, & works incredibly hard to spread her message.

To all three of these women I pass my congratulations, & I look forward to seeing what you think of this award.

She Sells Sanctuary.

Opposition can come from the unlikeliest of places, as I discovered online rather recently. Seemingly out of nowhere someone was telling me at length about how medical research is ableist. They weren’t referring to the general ableism experienced in every industry, but genuinely believed that medical researchers were striving to eradicate disability completely within the next few years. Given that my studies directly related to medical research, & that, well…I work in medical research, this was news to me. However, despite their mostly irrelevant if impressive education & career, they persisted in explaining to me why I, a disability activist, was contributing to ableism.

Needless to say, I was a tad miffed (read: bloody furious).

There were also several fundamental flaws in their argument, & if being married to a philosophy graduate has taught me anything, it’s how to pick apart someone’s argument & use it against them (domestic disputes in our house are fun).

First & foremost, the depiction of medical research on the television makes it seem like cracking the human genome is the key to all medical matters, & therefore once we crack that code, we can click our fingers & snap everyone back into good health. That theory was put to bed over a decade ago, when the infamous human genome project came to a close, & a new field of study opened up; epigenetics.

If your school biology classes were anything like mine, & you were actually paying attention, you were probably taught that there were two categories of things that could influence your biology. These were genetics, & environmental factors.

What if I told you that there is a third influence, which arises when genetics & the environment collide (sometimes quite literally)? Molecules that enter our bodies interact with genes, making them more or less pronounced, activating & deactivating them, & sometimes resulting in a mutation. Suddenly that little dietary balance diagram doesn’t seem so hard.

The truth is, even if medical research could decode the human genome in it’s entirety, it wouldn’t actually solve much. It’s simply not within our grasp, now or any time soon, to eradicate disability. Therefore, this notion that medical research could wipe out an entire demographic is purely fictitious.

But, is medical research trying to do that anyway?

In short, no. We’re too busy dicking around in the office for that.

There is also a troubling implication of the theory that medical research aims to get rid of disability; what about disabled people who want things to improve? Is it ableist of me to not want to be in constant pain? To want to have literally one organ system in my entire body that does its job without periodically trying to kill me? It’s very easy to say that we don’t need to find a cure for disability when the condition you have doesn’t leave you feeling constantly unwell, or at an unsurpassable disadvantage. It’s entirely a different matter when people are living & dying in misery because of it.

Finally, when all is said & done, there is one thing that remains to be said.

In order to find a cure, a disability must first exist. Therefore, medical research is dependent on the existence of illness & disability to stay in business in the first place, you illogical buffoons.

Liberty Denied.

When disabled people ask you not to use the phrase “wheelchair-bound”, it’s not political correctness gone mad; it’s political correctness asking you not to contribute to the harmful stereotypes that still plague disabled people’s lives despite proving them wrong time & time again.

The term bound has a lot of implications. It implies that no wheelchair-user, the phrase we would like you to use please, can stand or walk at all. This then contributes to the accusations of faking a disability for benefits, because as we all know that is by far the most effective way of paying the bills. It also contributes to the notion that sudden, inexplicable miracles are a lot more common than you would reasonably believe.

Bound is a word that also implies a lack of freedom, that someone is imprisoned by a wheelchair, which is not true. This in turn causes a lot of physical & mental harm to individuals who become disabled.

When it was recommended that I would need a wheelchair eight years ago, I was adamant that I would only use it for very long trips. I stubbornly refused to use it at after school events & on shopping trips, for fear that I would become disabled. The truth was that I was already disabled. A wheelchair doesn’t disable you; dysfunctional body parts do, & you just might end up using a wheelchair should such a malfunction occur.

My stubbornness left me in horrendous pain & with unbearable fatigue. Then, thanks to Graded Exercise Therapy, my health plummeted & I was left with no choice but to use the wheelchair every time I left the house.

As I expected my life was transformed, but to my surprise it was changed for the better. Suddenly I had my life back. I had an education & friends & as the years passed, I would make my way to university, employment, & marriage. None of it would have been possible without my wheelchair.

There is a stigma that becoming more dependent on mobility aids is “giving in” to disability. This is not true, unless of course you count “giving in” as learning to face an inherently ableist society where your basic human rights are constantly overlooked or denied completely. This stigma makes people believe that mobility aids are a worst-case scenario, that using them is to show weakness, & that their lives will become worse if they use them.

Many of us seem to have that awkward relative who, despite being increasingly aware of their age (to put it politely), refuses to accept help or mobility aids. How many bones have been broken because of this? How many people have been trapped in their own homes because of this? How many people lose their friends because of this? The fact of the matter is that not using a mobility aid is far more likely to imprison & harm someone than using one is.

When writing this I must admit I did have one particular person in mind, although from discussions on social media I know that this is a very common problem. I don’t know if that person will read this, & if they do I may well end up in trouble for suggesting such heinous things, as it is a difficult topic to discuss. By using more inclusive terminology that better reflects the experience of using a wheelchair or other mobility aid, perhaps we can learn to have this difficult discussion, & improve the lives of millions of people across the globe.

Womb of Woes: Part 3.

The clock had skipped forward almost two hours when I came to in a bed, oxygen mask on, with a radio playing quietly in the corner. For the first few minutes I could barely keep my eyes open, but eventually the fog lifted. When it did I wished it hadn’t, because I think that was when I discovered what being impaled felt like.

After a bit I was returned to the ward, & my oxygen mask was switched for a tube which was a lot more comfortable. I could barely manage sips of water, let alone the hot drink & food I was offered. By now I could feel multiple wounds which told me that they had found something; the surgeon had explained I would only have one incision for the camera unless they found something that required surgical intervention.

I think it was about 6 pm when one of the other surgeons came to my bed. Without bothering to close my curtains she loudly & bluntly exclaimed that I had endometriosis, & that the lining of my uterus had wrapped itself around my ovaries & had had to be cauterised. Treatment would only be offered when I returned to the clinic several months later, & I was good to go despite being unable to eat, drink, or use the bathroom properly. I would also not be getting any pain relief.

Fortunately, the head nurse on my ward seemed to have experience at handling M.E. after a general anaesthetic, & basically refused to let me go home until the morning. That evening, after my husband had gone home after a long day for us both, I sat in bed chatting to the other women staying overnight, & managed to eat & drink a little. After something of a concerted effort, I even managed to use the bathroom.

In the morning I was given breakfast & sent on my way, with documents explaining why I would be taking 2 weeks off work. We took a taxi home & almost immediately I returned to bed. For the next three days I could only manage to stay awake for a couple of hours at a time, & didn’t leave the bedroom except to use the bathroom. The most exciting thing I did was take a shower: I removed my dressings in the shower to discover that I would never be able to wear a crop top again with confidence; thanks to my previous surgery my midriff is covered in scars, & my belly button is warped.

By the weekend I was able to stay awake all day, & even made it into the lounge where I played video games & watched TV. It was over a week until I had the strength to get dressed & leave the house, & even then it was for less than an hour. By this point I was desperate to keep my brain active to avoid becoming even more depressed, as I was now able to fully process the emotional impact of my situation.

For 11 years I had been disbelieved & left in pain. For almost a decade of that it had been exacerbating the M.E, working in conjunction with it to obliterate my health. After 11 years I finally had an answer that shouldn’t have been anywhere near as difficult to get, & even though I now had that answer, I had been sent home with no pain relief & no treatment. Even now, with a confirmed medical diagnosis that cannot be disputed, I am left to struggle on my own.

We are supposed to be grateful for the NHS, because access to health care is considered a privilege & not a human right, & in comparison to most Americans we’re lucky. While this is true I think I can be excused in finding it difficult to be grateful for a system that has once again left me to suffer for years, so concerned on cutting costs that the wellbeing of patients is disregarded in favour of excuses. If I could afford private health care I wouldn’t even hesitate. I fail to understand why not having healthcare is considered the baseline & having healthcare is the privilege, when healthcare should be a right & failing to provide that should be a violation of that right. Quite simply I wouldn’t wish my experience on anyone, & everyone should have the right to not constantly be in pain.

Asthmatics Beware: the Eco-Brigade is after us now.

Oh, I’m sorry, I’ll just go die of an asthma attack then.
First you want to stop #disabled people from drinking, now you want us to stop breathing.
“Cleaner” inhalers don’t work. We will die.
Stop trying to find excuses to vilify disabled people & kill us.

2.5% of asthmatics have brittle asthma that doesn’t respond to treatment.
2.5% of asthmatics is hundreds of thousands, if not millions, of people.
1 of those millions is my mother. Another of those millions is my tattoo artist’s little girl.
They have switched treatment countless times. Each time it ends in a trip in an ambulance, even going to resuss. There’s a personal nebuliser at home to use daily, alongside extra steroids.
There is 1 inhaler that works. Can you not kill my mother, please? Can you not kill a little girl, please? Thanks.

https://www.bbc.co.uk/news/health-50215011

Back to the Doctor.

I went back to the doctor today, to get help for my endometriosis.

It did not go well…

Womb of Woes: Part 2.

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

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

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

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

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

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

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