Tag: Disabled

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

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.

Womb of Woes: Part 1.

As it transpires, my metamorphosis into a loudmouthed social justice warrior began years prior to the meningitis, with little more blood than a small cut (although to me it felt more akin to the elevator scene in The Shining): my first period.

I was 12, & it was a few days before going on holiday with my parents, when I went to the bathroom & discovered blood in my under-crackers. Despite knowing full well what periods were, curtesy of an ever-important sex education, I totally freaked out…because the bleeding had stopped. My long-suffering mother consoled a crying pre-teen, still sat on the toilet, & explained to me that what I had just experienced was called spotting, & was actually fairly normal. It wasn’t until we were in a remote village in North Yorkshire that my period started properly, but fortunately my mum had packed sanitary towels & spare underwear just in case. That was the first & only period I have ever had that could be described as normal.

According to my sex education, periods were supposed to last 3 – 7 days, occurring in regular 28 – 30 day cycles. I could expect to feel some moderate cramping pains & headaches during menstruation, but over-the-counter painkillers & a hot water bottle should make them manageable. I would feel frail & sensitive, & I might get acne.

My periods lasted nearer 10 days, & could be anywhere between 2 weeks & 2 months apart. The bleeding was heavy enough to overflow a large night-time sanitary towel in a couple of hours. I cannot count the number of times I woke up quite literally in a pool of my own blood, it having overflown my towel & bled through my clothes & the bedding. The pain felt like my uterus was trying to eject itself out from between my legs, & didn’t limit itself to during menstruation either. I would get mid-cycle pain which seemed to coincide with ovulation, pre-period, during-period, & after-period pain. It was easier to count the days when I wasn’t in pain than when I was, & with each cycle it got worse & worse & worse.

Eventually, & by eventually I mean after 4 years, I told my doctor. Apparently, what I was experiencing was just puberty, & by the time I was an adult it would have settled down. He did, however, have the decency to prescribe some additional painkillers which I turned out to be allergic to. I went back & no alternative was offered, but I was offered the contraceptive pill as a means of controlling my cycles, which should improve my symptoms as a knock-on effect.

Even on the pill my uterus stubbornly refused to follow the rules. I must have used just about every single iteration of the pill in existence trying to find one that worked, at one point experiencing 2 three-week-long periods in close succession, leaving me with iron deficiency anaemia as a university student. My problems were, however, still an effect of puberty despite being 20 years old, according to the doctor.

After almost 8 years of this, I was beginning to get frustrated. There was a family history of endometriosis, a disease that appears to have some genetic links, & my development & symptoms matched those typical of endometriosis almost exactly. I had mentioned this to multiple doctors but this was always either ignored or was brushed off as the silly anxieties of a young adult.

However, I did have one new symptom that caught the doctor’s attention; now that I was in a long-term relationship, I was trying to have sex & couldn’t, because it felt like I was ripped apart & burnt at the same time. To me this wasn’t much of an issue – there’s more than one way to skin a cat, if you catch my meaning. However, this was the symptom that medics latched onto. The doctor tried to do a physical examination & couldn’t; it was agony. She told me that I absolutely didn’t have endometriosis, but that my inability to have sex, which didn’t particularly bother me, was enough to warrant a referral to gynaecology. A few months later I attended the gynaecology clinic at the hospital.

I went through my list of symptoms with the consultant, who again disregarded all of the ones causing me trouble in favour of the one that wasn’t. She tried to perform a physical examination &, much like my local doctor, couldn’t. However, for the first time ever my symptom wasn’t attributed to puberty; it was all in my head instead. She prescribed something that can loosely be described as a treatment plan, which unsurprisingly didn’t work, & requested I return to clinic in six months. This being the NHS, it was almost a year before I went back.