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.

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.