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.

The Rejects: 6 Things No One Tells You About Working in Medical Research.

Typing the words “medical research” into Google conjures up endless images of young Caucasian adults in lab coats & blue gloves injecting strange, blue fluids into conical flasks and/or various rodents. There are so many things wrong with these search results, not least the lack of representation of literally any other ethnicity making valuable contributions to modern medicine, and also the failure to include any kind of disability. All the “researchers” are sickeningly gorgeous too, and as anyone who wears one knows, lab coats are not flattering.

Social representation issues aside, I’m here to dispel the notion that being in a wheelchair depletes my intelligence so much that I couldn’t possibly work in medical research, and also to let you in on what my industry is really like.

  1. I Work in an Office.

Not everyone working in medical research spends their time doing magic tricks in a laboratory, in the name of science. In fact, a large proportion of us work in an office so ordinary that you would have to look hard to discover what industry I work in. Eventually you would notice the disembodied fake limbs covered in disgusting wounds lying around under desks, which are used to train medical practitioners in trial procedures before testing it on limbs attached to actual live people. That’s if the security team didn’t escort you out first, asking why exactly you were snooping around our offices in the first place.

  1. You Don’t Need a Background in Medicine.

While I personally have a background in biochemistry, many of my colleagues & superiors do not. We have an entire team dedicated to finances, business management, & resourcing. We have our own IT department who build, maintain, & constantly fix our bespoke databases when one of us manages to break the entire thing. We have trial coordination teams who do all the paperwork, including everything dedicated to ethical approval, & organizing the meetings of the committees in charge of each trial. Then there’s the team I’m a part of, the data team, which processes all of the study data that is collected before it goes to the statistics team for analysis. In fact, the statistics team is the only one where a specific qualification is required.

Don’t let a background in business management & IT, & work experience in administration put you off applying for a job in medical research; you might be just what we need. Besides, if everything was left to the scientists, there would be genetically-modified Hulk-mice running rampant within the week.

  1. Budgets are Tight.

Charities & government bodies are constantly granting enormous sums of money to universities to fund studies & medical research. With these grants often reaching millions of pounds (or dollars), it sounds like medical research is insanely profitable, with everyone employed there earning 6 figures.

While in comparison to my last job in the NHS my employers are practically rolling in money, the budgets are by no means luxurious. The truth of the matter is that medical research is expensive. There’s the cost of the equipment, drugs, & office materials to consider, the insurance in case something goes supervillain-esque wrong, & then employees do have the ungrateful desire to be paid at the end of each month. Nor do our wages reach the 6 figures apiece you might imagine. Many of us don’t earn enough to pay income tax, or even to start paying back our student loans (I’m in the UK, just in case the free, national healthcare bit didn’t give that away). While I am lucky to earn enough for my needs, and have good holidays, sick pay, & a pension, I could hardly spend frivolously at my slightest whim.

  1. Ethics is Everything.

There is a subtle trend in pop-culture that may have escaped your notice; scientists are almost always the bad guys. Or, even if the scientist isn’t the bad guy, it’s their recklessness that results in them becoming a mutated super-human.

Now, admittedly some scientists have done some pretty horrendous things to their subjects, often against their will while they’re in a vulnerable situation. However, modern times make it a lot harder for scientists to do whatever they want to whoever they want, consequences be damned.

Every idea, form, advertisement, & procedure relating to the trial must pass ethical approval. Once the study is started it is subject to constant safety & ethical assessments, & should it not meet standards changes are made or the study is stopped altogether. Changing a single character on our database requires ethical approval. Every doubt is addressed, every problem fixed. The bureaucracy can at times be irritating, but it is absolutely essential.

  1. There’s a Reason Why We Don’t Pay You.

One of the biggest obstacles to recruiting participants is them finding the time to participate. We often have potential subjects turn us down because they can’t afford to take the time off work, but tell us that if we were to pay them for their participation, they would change their mind. Contrary to popular opinion, however, there is a reason we don’t often pay subjects.

The same ethical bodies that stop scientists from turning subjects into gross mutants are the same that often won’t approve paying subjects; it counts as bribery, & bribery is completely unethical. Once you start offering money it would be easy to offer even more money to subjects if they underwent more & more dubious procedures.

There is also, believe it or not, a scientific reason: bias. Offering to pay recruits encourages people in need of money to participate over people who already have enough money. This means that the study population is more likely to come from low income backgrounds, and issues such as level of education, access to healthcare, & the number of hours worked per week start to effect results. The fact that particular social groups or even genetic groups are predisposed to low-income scenarios only exacerbates this.

  1. We Love Animals.

I don’t work on any studies that involve animal testing, & couldn’t even tell you if or where animal experimentation took place at my university. That is the case for most people in medical research, many of whom will go their whole careers without experimenting on a single rodent. In fact, the vast majority of us simply couldn’t bring ourselves to do it, even if we reluctantly support the practice.

Even among the scientific community, animal testing is avoided at all costs. Similarly, to the human trials I work on, animal testing of any kind is subject to rigorous ethical approval, and if any potentially harmful process can be avoided, it will be.

Perhaps most ridiculously of all is the fact that animal testing isn’t that scientifically robust. Injecting a mouse with a drug gives us an idea of what it might do to humans, but physiological differences make that very uncertain, especially when considering dosage. Studies on humans are considered far more robust than those on animals where human medicine is concerned, & carry more weight in the medical community.

The reason we don’t stop animal testing altogether is quite simple; recruitment. Many people have never participated in a trial of any kind, based on the presumption that behind every study is an evil maniac trying to destroy humanity. Without large enough samples, we need more evidence from different places when assessing if a new treatment actually works & is safe. That evidence usually comes from animals.

At the end of the day, medical research has a reputation for overt wealth & bad intentions. In reality, the people I work with are some of the hardest working, most compassionate, & diverse adults you will ever meet. We just happen to have prosthetic limbs with fake wounds under our desks.

A New Beginning!

In case you don’t follow me on social media, I wanted to catch you up with the very latest in Diary of a Disabled Person news.

As many of you know I was recently made redundant and have since been looking for work. Yesterday, while sat in a local cafe, I received a phone call telling me I had a job. However, this wasn’t just any job. This was a job I really wanted, that I could be proud of, and that I knew was very much a long shot when I applied for it.

I will soon be joining the Clinical Trials Research Unit at the University of Leeds as a Data Management Assistant, contributing to medical research by overseeing data submission, checking for errors, finding anomalies, and questioning anything I feel to be out of place. Some people would consider this job to be their worst nightmare but for me it is the opposite. To be able to help move medical research forward has been an ambition of mine since taking my A-levels, and I honestly thought that I would have to choose between that and a writing career. As it transpires, I can now do both while remaining financially secure.

Disability doesn’t mean I can’t work in medical research.