diaryofadisabledperson

The Rejects: 6 Things People With Chronic Fatigue Syndrome Want You to Know (But Are Too Exhausted to Tell You).

At one time the UK parliament took a break from arguing about how we could slip discreetly from the EU like an introvert leaving a party at 9 pm, and instead argued about a disease called Chronic Fatigue Syndrome (CFS). This illness is also known as Myalgic Encephalomyelitis, a slightly more imaginative if unpronounceable name. This being the 21^st century, where everyone’s opinion can be shouted in cap locks across the internet regardless of experience or expertise, social media was flooded with posts discussing the illness. Of course, not many people remembered to ask the sufferers of CFS, because that’s too obvious or mainstream or something.

At 14 years old a virus decided that my brain was the perfect vacation spot, and through a series of unfortunate events that even Lemony Snicket would have trouble imagining, I developed Chronic Fatigue Syndrome. It’s time for someone with experience to have their say, albeit with naps between each paragraph.

CFS is Real.

I have lost count of the times I have faced accusations of faking my own illness to play truant from school or work, to gain access to prescription drugs, to get disability payments from the government, or simply for attention. I have also lost count of the number of times I have been told that the disease is fake, or purely imagined by all those said to have the disease, despite an ever-growing body of evidence suggesting otherwise. Why listen to scientists, though? It’s not like they’re experts or anything.

Social services even became involved when an anonymous accusation was alleged against my parents suggesting that they were making me use a wheelchair unnecessarily to obtain extra benefits. Fortunately, social services neither had the time nor the resources to look into such a petty and under-evidenced claim, but the experience was perturbing all-the-same. This had a large, soul-destroying impact on a teenager in the midst of puberty. My poor parents.

It’s More Than Just Needing a Nap.

CFS, aside from being the most unimaginative name ever, does give the impression that sufferers of the condition get a bit tired and need to follow the sleeping schedule of a cat. Yes, I get really, really tired, really, really easily. As in, sat-up-and-opened-my-laptop easily. However, there is also the joint and muscle pain, headaches, dizziness, nausea, sickness, muscle weakness, cramps (holding a pen is a fun way to induce hellish cramps, which won’t have any effect on my writing career at all), irregular appetite, sleep disturbance (ironic), itchy skin and eyes, muscle tics, passing out, short term memory loss, and poor concentration to contend with. What was I saying?

To summarise, it is a debilitating condition forcing many sufferers like myself to use walking sticks and wheelchairs, and in some rare cases can even prove fatal.

So, to encompass the nature of CFS in a name, (and what, after all, is in a name), it would have to be called Chronic Fatigue, Pain, Dizziness, Nausea, No Sleep, Brain Fog Syndrome, which is a lot less catchy, and a lot more tiring to write.

Yes, I Do Need Those Pills.

If you have managed to stomach any recent news reports, you might have encountered news of an “opioid epidemic” sweeping America. One of the main talking points is whether people with chronic pain such as fibromyalgia, arthritis, and CFS should have access to these drugs. While I personally have had very limited experience using opioids (but the few times I have, man I felt good), I have at least been able to access alternatives that might not be affordable were they not on the NHS. It should also be noted that some of prescriptions I use are to manage the side effects of other prescriptions, in what I like to call “pres-ception”. It once got so bad that the shelf in the medicine cabinet collapsed, I kid you not. One of my favourite jokes is to claim that I am a human maraca because of the number of pills I take on a daily basis. What that actually turned out to be was gall stones, but that’s another story for another day.

Here’s the thing; on occasion I am unable to take these medicines as most of them require ingesting with food to prevent stomach ulcers. If I can’t eat, or throw up everything I eat, I can’t get the medicines down me. When I haven’t been able to take my medication, I notice it pretty quickly. On these days sitting upright, even propped up by pillows, is exhausting. Even going to the bathroom is practically impossible, which has led to one or two awkward scenarios.

No, I Don’t Just Need to Exercise More.

Here’s the thing; I was prescribed “exercise more but with medical jargon” by my physiotherapist. Being the naïve teenager I was, thinking that the medical professionals would know how to treat my illness, I followed her instructions to the letter. It worked so well that I went from being able to walk around outside with only the need to take occasional breaks, to having to use a wheelchair when I want to travel more than a few metres.

Nor am I alone in this, as multiple studies have found that these exercise programmes tend to make things worse, not better.

It Varies From Person to Person.

CFS would be a lot easier to study and treat if it didn’t vary like the British summertime climate. Some people just need to take breaks or naps every so often, and some people can’t sit upright unsupported. I’m somewhere in the middle, using a powered wheelchair but able to work, and I can hobble around the flat leaning on walls, furniture, and my husband.

I am often compared to others who have had CFS, and people will even try to shame me by saying that “X” was far more active than me when they had CFS, or that “Z” had it far worse and I don’t know how lucky I am. The reality of the matter is that the wide variability of the disease means that knowing one person with the illness does not give you enough experience to make judgement calls on others.

We Hate the Fakers as Much as You Do.

The debate as to the existence of CFS can be largely attributed to the fact that, as yet, there is no medical test available that can distinguish who has and hasn’t got the illness. There are no biomarkers that can provide distinct answers. This means that people are able to fake it, knowing full well that their lie can’t be undermined by pesky scientists. It raises questions as to how to tell the fakers and real patients apart.

The fakers (I like to replace the A with UC) give the rest of us a bad reputation, and have made the lives of those of us suffering from the condition significantly harder than they already are. So, if you think the fakers piss you off, imagine being in our shoes (or wheels).

Big City Nights: Part 2.

Tuesday:

Tuesday morning was bright but cold as we headed towards the Thames. The London traffic was in full force & I could have sworn that we were moving faster than most of the cars. We crossed the river getting an excellent view of the Shard & St Paul’s as we did so, before heading down into a underpass. We re-emerged close to the foot of the London Eye.

The ticket hall was chaos. It didn’t help that the wheelchair access was down the side & made you go against the flow of traffic. Fortunately, we had pre-booked so only had to collect our tickets for later that afternoon before heading outside again.

A few doors down was a Sea Life centre, & with plenty of time to kill we decided to pay it a visit. With a couple of school trips taking place it was crowded at points, but we still managed to negotiate our way around without too many problems. My love of biology once again shone through as we meandered past tanks & through tunnels, with one rather large tiger shark seeming to take particular interest in the strange contraption I was riding.

A large tiger shark.

A mixture of jellyfish.

A couple of hours later we resurfaced & headed to a nearby fish & chip shop, the irony of which was not lost on us. On the door we were asked to perform a surprise miracle, as apparently the wheelchair posed some kind of health & safety threat, but fortunately the manager spotted what was happening & dealt with it, giving the member of staff some of the most evil side-eye I had ever seen.

After a short stroll along the South Bank, including excellent views of the Houses of Parliament, it was time to get on the London Eye.

The Palace of Westminster as seen from the South Bank of the River Thames.

We arrived 15 minutes early as requested & waited for the member of staff who would be escorting us to arrive. No one showed up. When we asked a passing member of staff he seemed to have a panic about the wheelchair & needing a ramp, which we had all arranged beforehand, & suddenly disappeared off. Finally, someone arrived & we were escorted to the wheel.

I am proud to say that I am one of the few people the London Eye has actually stopped moving for, allowing staff to lay down the ramp so I could safely board. I parked myself at the end of the carriage as it filled with the small group who had booked VIP tickets like us, & discovered that the mystery panic-and-disappear man was the waiter who would be serving us champagne.

The wheel moved off & the lovely couple next to us took some photos of us, while I returned the favour for them.

My husband & I high above the London Skyline on the wheel, drinking champagne.

Lacking the champagne.

All too soon we were back on solid ground making our way back to the hotel, where we rested before heading back out for a meal.

Wednesday:

We woke up to the sound of rain pattering against the windows. After breakfast we returned to the tube station, this time hopping on the Circle Line to Hammersmith, not a line we had used before. It was by far the most accessible tube line I had seen, with the platform being level with the carriage at almost every station.

We emerged from Hammersmith & made our way towards Shepherd’s Bush market, grateful that the rain had thinned to a drizzle, stopping at an authentic Thai buffet on the way. The market itself was ridiculously accessible, with kerb drops left clear & ramps provided, & I wasn’t the only wheelchair user there.

After perusing the market we headed to a local cinema to see Fighting With My Family; we had been to a wrestling earlier in the week so it seemed fitting. While the film focussed on the little emo girl from Norwich, I particularly enjoyed the cameos from Dave Mastiff, Big Show, & Shaemus.

The cinema tickets for Fighting with my Family.

Before returning to the hotel we had one last place we wanted to visit, The Loading Bar (Server) which can be found near the market. This video game themed pub was not only accessible & welcoming, but just so happens to be the place where some of our favourite YouTubers go to film their livestreams. To be sat in the place we had seen on our TV screen so often was rather strange, but we soon settled into a game of Exploding Kittens (yes, that is a real game) over some cocktails. I can recommend the Assassin’s Mead.

The Assassin's Mead, accompanied by 2 chocalte coins.

It was raining as we returned to the tube station but the ride was just long enough to have dried before we headed back out into the rain again. We were grateful for the warmth of the hotel when we returned.

Thursday:

Upon waking up the next morning we were happy to discover no evidence of rain, & the promise of a bright day ahead. I took my time getting ready, pinning my hair into a nice style, & applying subtle but stylish make-up. We ventured out shortly before lunchtime, making our way through St George’s Gardens (the graveyard) & Russell Square, past the British Museum, & into Treadwell’s Occult bookshop.

Not only was the shop one of the only accessible one’s on the street but I was grateful not to find myself at the centre of an impromptu healing ritual, with the salesman letting us peruse the shelves at our leisure. Jarred said that if anything “spoke to me” or “leapt off the shelf at me” we should consider buying it, at which point I informed him that this being an occult shop, if anything did speak to me or leap off the shelf, I would make a hasty exit. Eventually we did have to make a somewhat hasty exit, as the incense was triggering my asthma.

We meandered through the West End, stopping to look in any shops that caught our eye, & made our way to the crowded Trafalgar square. Opposite the square was St Martin’s, the fully accessible crypt of which turned out to be a café.

The Cafe in the Crypt: a large vault with a stone floor, & massive pillars & arches supporting the church above.

Nelson perched atop his column in Trafalgar square.

After lunch and a quick peruse of some of the art in the National Gallery, where I proved to be an uncultured swine, we headed back into the West End. Around the corner we came to our destination; Her Majesty’s Theatre.

Upon showing our tickets for Phantom of the Opera to the member of staff outside, we were ushered into the stalls via a side entrance. As we went to our seats the disabled toilet was pointed out to us, & because the aisle was a ramp instead of steps, I could go all the way to my seat before getting into a theatre seat. My wheelchair was stored safely to one side as the rest of the audience filed in. It wasn’t long before the show began.

Inside Her Majesty's Theatre, before the show began.

The show was truly a spectacle to behold, akin to nothing I had seen before. By the time it ended a chandelier had been dropped above the audience, & we had been close enough to feel the heat of the pyrotechnics. Still buzzing from the excitement, we went for a meal, returning to a pub from earlier in the week & returning to our common people lifestyle.

Friday:

The week had flown by & now it was time to pack. We checked out of our hotel & hopped back on the tube for one last trip, heading back to Victoria train station. We browsed a couple of the shops & ate lunch there before heading to the coach station, & soon it was London we were leaving behind.

I spent the journey looking through the photographs, wishing I could do it all again. However, it was still good to see the Leeds skyline ahead of us & to know we were nearly home.

The Rejects: 6 Things in Food Way More Dangerous Than Additives.

Back in the wildly free and untroubled days of 2007, newspaper headlines would have had you believe that food additives were going to be the cause of the apocalypse. While the subject has dropped in and out of news cycles ever since, the stigma about additives has never really gone away. As someone with a degree in nutrition, and my course leader being a toxicology expert, this has come to be one of my pet peeves (alongside student loans), particularly as there are some things lurking in our diets that pose a much bigger threat.

Unfriendly Microbes.

At one time or another, we have all experienced the unpleasant side effects of ingesting microbes not meant to be ingested. Salmonella and certain species of E.Coli can cause a short period of evacuating the contents of the digestive system (isn’t it just amazing how much the digestive system can hold?), but for the majority of us no further effects are felt. There are, however, rarer microbes that can cause more problems; those problems being suspiciously grim reaper shaped.

Take the wonderfully named Listeria Monocytogenes, most famous for being the reason pregnant women are told to avoid soft cheese. This little gem can cause Listeriosis, which has a staggering mortality rate of 24%, and can cause miscarriages and neonatal death, as well as more cheerful things like meningitis.

Before the internet loses its mind and starts lobbying against soft cheeses, it should be said that cases are rare. Still, speaking from personal experience, meningitis is probably best avoided.

Botox.

Then there are the things that microbes leave behind.

Clostridium Botulinum produces the deadliest toxin in the entire universe, to our knowledge. Admittedly, getting people to sign up for space exploration programmes to find an even deadlier toxin is proving difficult, but that’s beside the point.

Botulinum toxin blocks nerve function, causing paralysis and eventually death by not-being-able-to-move-the-diaphragm asphyxiation. It also happens to be what people inject into their faces to maintain that youthful plastic look we all desire, so at least the insides of your intestines will look nice when you absorb it.

Again, cases are rare, but also probably best avoided given the 5 – 10% mortality rate.

Party Pooper; Not a Fungi.

I’m sure you’ll be delighted to know that microbes aren’t the only thing found in foods that are way more dangerous than additives.

Much like Clostridium Botulinum some fungi are able to produce toxins, albeit less deadly ones. Included in this group are the Ergot alkaloids from Claviceps species, which just so happens to have LSD as one of their many chemical derivatives. The most significant toxin of these, however, is from the Aspergillus species which can produce a family of toxins called aflatoxins.

To cut a long story short, the prolonged consumption of aflatoxins causes liver cancer. You’re unlikely to immediately drop dead after consuming this toxin, which must be a comforting thought if you’ve made it this far through the article, but that may simply be because it’s biding its time and choosing a more convenient moment to murder you. Think positive.

Cyanide.

Hard-core Agatha Christie fans (a series of words I never expected to write) will know what cyanide, the world’s most famous poison, smells like; almonds. That would be because almonds are full of the stuff.

Obviously you may be wondering why everyone who has ever consumed an almond hasn’t dropped dead; we roast them (the heat kind, not the insult kind). The heat triggers a chemical reaction which gets rid of the cyanide, and we can safely eat them without becoming the next unfortunate subject of an Agatha Christie book.

Just to help you sleep at night, cyanide can also be found in cherry stones and apple pips. While swallowing apple pips doesn’t result in internal apple tree growth, consume too many of them (an insane amount), and you could become a victim of cyanide poisoning yourself. Safe to say an apple a day isn’t guaranteed to keep the doctor away.

Essential Nutrient Vitamin A.

To the people who say you can never have too much of a good thing, I present to you; science – taking the fun out of everything forever.

Vitamin A is an essential nutrient needed for survival, and plays important roles in the immune system and eyesight among other things. Unfortunately vitamin A dissolves in fat, which means that if you get too much of it, you don’t flush it down the toilet if you catch my meaning. Instead, it gets stored with the rest of the fat, where it accumulates. The liver works itself senseless trying to process the extra vitamin A, but eventually the point of no return will be reached, and death becomes imminent.

So now you know; even something that is essential for survival can go ahead and kill you anyway, and there’s no justice in this bleak universe.

All-natural Fruit Sugar.

The food industry likes to use the words “natural” and “organic” a lot because people think that means “healthy”. What it actually means is “I’m going to charge you more for this”.

We all know that fruit is good for us. It’s rich in fibre and nutrients, particularly vitamin C, and its low in calories. Unfortunately even fruit has turned against us with an all-natural sugar it produces; fructose.

The problem stems from the fact that humans were never meant to have year-round access to fruit, which only comes in season once a year without our intervention. Therefore the body simply never produced a mechanism to process fructose, and so the liver uncontrollably turns fructose into fats at a tremendous rate, this fat then being linked to a plethora of conditions like obesity and diabetes. For a few weeks of the year the liver could manage this with ease, but not on a constant basis.

The main cause of fructose damage is actually not fruit itself, but high-fructose corn syrup, so continuing to eat fruit regularly remains a good thing. This simply goes to prove that a typically healthy, organic, all-natural food still contains dangers far in excess of additives.

Also water and fortification with vitamins and minerals count as additives. So unless water is bad for us now…

Big City Nights: Part 1.

Saturday:

The sound of my alarm is usually an undesirable one, but today was different. Today the alarm indicated that I needed to get out of bed not to go to work, but to go to London. The long-awaited honeymoon had finally arrived.

Having packed the night before Jarred & I had plenty of time to eat breakfast, get dressed, & pack the last few essentials. I got in my new self-propelled wheelchair, took a bag on my lap, & Jarred hoisted the rucksack onto his back before pushing me to the coach station. The coach arrived on time & I was allowed to get on first, sitting at the front of the vehicle while my wheelchair was folded up & placed in the luggage hold. This was far less stressful than using the trains, mainly because the assistance we had discussed with the company in advance was actually provided, not that booking the assistance in advance was even essential. I settled back into my comfortable seat as we pulled out of the coach station, and within a few minutes Leeds was behind us as we headed for London.

Four and a half hours later we pulled into Victoria coach station in central London; the longer journey was worth it for the greatly reduced stress. Once we had retrieved our luggage & the wheelchair, we made our way across to Victoria train station where we had our lunch on a balcony overlooking the trains.

The view from the balcony over the trains in Victoria train station. There are a couple of stationary trains visible.

After lunch we made our way down into the tube station, & somehow managed to navigate the impatient crowds to our platform. We went to the raised area and didn’t have to wait long before the rush of air that indicated an arriving train blew my ponytail into my mouth. The tube screeched to a stop & the door slid open, revealing the “level access” to be more akin to a step than a ramp. This was why I was in the manual wheelchair & not the powered.

Jarred gently bumped me up the step & looked around for the priority space but couldn’t see it, mainly because it was behind three people stood in it staring at me. We managed to negotiate our way into the space, miraculously without taking out anyone’s ankles.

Soon we were resurfacing in St Pancras, and went straight to our hotel, the same one that we had used 18 months before. We checked in & had to ask for a second key, just in case I did decide to propel myself independently in the local area.

My wheels sunk into the thick carpet making it virtually impossible for me to propel myself up the ramp to the lifts. Three floors up the door to our room was on a tight corner, & the platform lift was not in line with the door meaning I had to do another 2 sharp turns to get through. Our room was down a ramp on the right, only the ramp was a very narrow zig-zag. The tight corners were problematic enough, without having to negotiate a slope as well. Finally, we made it into our room, unpacked, & collapsed onto the bed, the day’s travel having caught up with us.

A black on white photograph of myself sat on the bed in the hotel room, leaning back on the pillows, scribbling some notes into my notebook in preparation for writing this blog post. I'm wearing jeans, a t-shirt, & a denim shirt.

We turned on the TV & channel-surfed, a novelty to us in the age of Netflix, a finally settled on Despicable Me 2, arguably the superior film to the original. Afterwards I had a bath, and once again as I lay back to wash my hair a tube passed underneath the hotel, causing a flurry of bubbles to rush past my ears.

Sunday:

On the Sunday we had a slow morning before getting back on the tube. We made our way from St Pancras to Canary Wharf, where there is an entire shopping mall hidden underground. I immediately found the food court thanks to my inane ability to find anything food related, and after lunch we browsed some of the shops.

Later in the afternoon we got back on the tube & headed to South London to New Cross. This was a station that at least declared its lack of access, and so we were well prepared for me to hop off the train.

We turned left and headed up the main road, finding our destination with surprising ease; the New Cross Inn, grunge music venue and where we would be seeing one of our beloved wrestling shows.

We were early, having left plenty of time in case we lost our way, and located a nearby bookshop. After purchasing what felt like half of their stock we headed back to the New Cross Inn, bought a couple of pints & a teddy bear (as you do), & settled down to watch the show. Much to our delight several of the faithful Leeds fans had also decided to visit New Cross Inn, & in the midst of all the Londoners was a loud chorus of Yorkshire greetings.

A photograph of the teddy bought at the show; it's a lion wearing a t-shirt for The Lion Kings, one of the tag-teams performing that night. I called him Sebastian Durreiss Warrior after the members of the tag team.

The show was, as always, a blast. The wrestling was top notch & both the organisers and the venue staff could not have been more welcoming or supportive. Perhaps the highlight of the show came when one of the TIDAL regulars and holder of one of their titles saw me in the crowd as she made her entrance, & gave me a big hug. She seemed genuinely happy that I was there.

Little Miss Roxxy, the wrestler who greeted me with a hug, holding up her championship after winning her match.

Chuck Mambo, another wrestler, super-kicking his opponent in the face in the middle of the ring.

Eventually the show ended & we made our way back to the tube station, making multiple stops to change lines & avoid inaccessible stations where possible. One of these changes just so happened to be at London Bridge, with an entrance at the bottom of the Shard.

A photo taken from the base of the Shard, looking up the building into the night sky. Some of the lights are still on in the building.

Once back in the hotel room Jarred quickly went to one of the local shops, arriving back with warm pasties which we ate while watching TV, the very peak of honeymoon romance.

Monday:

On Monday we decided to revisit the British Museum. Once dressed we ventured out, deciding to take a short cut through the delightful-sounding St George’s garden. It was a graveyard.

Having made our way through the garden/graveyard we stopped in Russell Square to have a coffee, before going to the back of the British Museum.

Once inside the museum we headed straight for the Ancient Greek exhibits; I can neither deny nor confirm the allegation that this period had peaked my interest due to it being the setting of the latest Assassin’s Creed game. We even went on a quick tour lead by someone who had clearly studied the period academically, starting at this jar. I half expected the Disney muses to appear & start singing as they do in Hercules.

Inside the hall at the centre of the British Museum, looking up at the entrance to one of the galleries which is styled to look like an Ancient Greek temple.

An Ancient Greek mausoleum.

An orange jar with black paintings depicting the events that lead up to the start of a war (the Trojan war, I think).

After we had seen all there was to see of the Parthenon, we made our way to a smaller & lesser-known museum run by the university, the Museum of Zoology.

I spent a long time slowly moving around the room gazing at the thousands of specimens on display. Despite being on holiday my love of all things biology (& gross) shone through. There were skeletons, taxidermy, fossils, microbiological slides, & perhaps the most interesting to me was an entire nervous system of a small mammal preserved in a jar. Overseeing the whole room was a family of skeletons.

Inside the Museum of Zoology, looking up at the balcony with the skeletons. There are 5 in total including a human, an orangutan, a gorilla, a gibbon, & I believe a chimpanzee.

Although small it was an accessible & welcoming place, not least because the receptionist immediately picked up that as I was the scientist, wheelchair or not.

Towards late afternoon we made our way to a nearby pub where we had agreed to meet up with Jarred’s Best Man & my new brother-in-law. Over a meal and some drinks, we caught up on everything that had happened over the past few months before returning to the hotel.

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.

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.

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.

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.

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.

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.

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 Legitimate TED-Talk.

Disclaimer: I wrote this a couple of months ago before I had even been offered the opportunity to deliver a TEDx talk, & it was scheduled for release at the time of writing. Therefore the timing of the post is purely coincidental!

Anyone under the age of 35 has probably been lectured about how technology is sucking out our souls through our eye sockets and we’re only one grammatical error away from Skynet doing its thing. Some of us will even have received the lecture via social media, the irony of the matter being lost entirely on the person posting their expressive art about technology’s role in the destruction of humanity online. Technology gives us cancer, and big corporations use it to brainwash us into buying their products, and we’re losing the ability to socialise properly, and it’s making us paranoid etc.

Technology is not all bad. How many lives have been saved because instead of having to find the nearest phone box, someone could call an ambulance at the scene? How much more data can scientific studies collect and analyse for even better results? How many people have received earlier diagnoses of progressive diseases that would have just killed them before? How much progress would have been made in the fight against ableism if disabled people didn’t have technology to help them voice their concerns?

Chances are that even the most disabled among us can still use technology. New apps and programs become available all the time that read out loud to the visually impaired, or translate between English and sign language for the deaf, or give someone who is unable to speak a voice. Social media has allowed people with the same disabilities from across the globe to connect to each other, so even the most isolated patients can find others like them and support each other.

Cameras are very useful for providing physical evidence of discrimination such as blocked access routes, and also the abuse we can receive when asking people not to block access. Once posted online the rest of the world can finally see for themselves the difficulties disabled people face in their day-to-day lives. Sometimes it can even result in legal action.

Perhaps most significantly of all it can be extremely difficult to organise a demonstration against ableism due to poor access to transport, and the fact that all of the affordable hotels in the area will only have one accessible room apiece, which will be quickly booked up. Technology has instead allowed us to break the taboo around disability and discuss it properly, highlighting and resolving issues, and raising awareness of the fact that we are also humans.

Nor can disabled people easily sue for discrimination due to the difficulties in finding employment due to access and transport issues, and also because many courts lack wheelchair access, even going so far as a have steps up to the witness box. Technology has allowed us to shame ableist actions to the point where public outcry has forced government leaders to tackle the issue.

Technology does have its drawbacks, but the truth of the matter is that technology has helped to improve more lives than it’s ruined. There was a point in history when reading and writing was considered unnecessary technology, but now those abilities are almost sacred to us. How much of technophobia is actually due to a genuine fear of technology, and how much of it is simply a fear of change?

TEDx: Disability in Education & Employment.

Disability presents a lot of challenges in day-to-day life. Something as simple as shopping can become Mission Impossible, so what happens when it comes to the more complicated stuff like school & work?

In the past 5 years I have finished high school, graduated from university, & had 2 jobs. There were problems I faced purely in relation to the disability in each of these situations, with the transitions between them being equally difficult. While I’ll be discussing my personal experiences of education & employment with a disability, I have been told that many others have encountered similar situations.

My high school was a gritty reboot of Waterloo Road. It was underfunded, overcrowded, & we had our own policeman assigned to the school. The standard of education was actually excellent, but pretty much everything else was falling apart at the seams just weeks after opening.

From the day I first fell ill at age 14 I encountered problems. The attendance team hounded me like I was a criminal, I was pushed back into P.E & dance far too hard far too soon, & I was initially denied the right to use my wheelchair at school. Once I had the right to use my wheelchair I was denied access to the support I needed, namely someone to push the wheelchair which I couldn’t physically do myself. It took up until I started my A-levels for me to get the help I required, and even then assistants would frequently fail to turn up, leaving me stranded.

While in the final year of my A-levels we were applying for university. At the time “UCAS points” were all the rage; if your grades fell a little below the requirements for the course of your choice, many universities would accept these points & allow you to enroll. UCAS points could be obtained by doing things like the Duke of Edinburgh badges, & raising money to go abroad over the summer to do charity work in developing countries. If you didn’t take up UCAS point opportunities you wouldn’t be penalized by the school so much as shunned, your efforts deemed unworthy, even if you couldn’t obtain UCAS points because not one scheme was willing to adapt for a wheelchair user.

I went the traditional route & focused on my education, except here I was penalized for not constantly retaking exams to get marginally higher marks. I had decided to put all of my efforts into studying for fewer exams, as studying for too many while chronically ill would have been disastrous. I got the grades I needed to go to university, which I hadn’t been when doing the constant re-sits demanded of me, but even when going to collect my final exam results I was reprimanded for being “too lazy” to take re-sits & get even higher marks.

It’s safe to say I was relieved to leave school & head to the University of Leeds School of Food Science & Nutrition.

University went much smoother than school. By this point I had been able to save up just enough money for a second-hand powered wheelchair so had gained independence. I was not penalized for taking fewer extra-curricular activities & focusing on my degree instead, and was supported by my lecturers & tutors. I had accessibility issues just like anywhere else, but these I could cope with.

There was the option to take a year out of my degree to study abroad or go on a work placement. I couldn’t afford international study even if I’d wanted to, but I did invest a great amount of time looking at potential work places. Many placements were based in factories & professional kitchens; not the most wheelchair friendly of spaces. Placements in dietetics were impossible to find as they all required you to have tailed a dietitian previously, something which is almost completely prohibited for patient safety. Many placements wanted extensive work experience in their candidates, but working on top of studying was simply not feasible for someone with a chronic illness. The remaining placements were all unpaid, & I simply couldn’t afford to live somewhere unpaid for an entire year. Yet another opportunity was closed off to me.

I went straight through my degree, during the final year of which I applied for graduate jobs, often facing the same problems as those for placements. I went to careers fairs. I went to the career’s advisor hubs & job-hunters based at the university. I booked one-to-one sessions with an advisor. Not once in any of these meetings could someone provide me with information about the accessibility of the jobs on offer, or even where I could find this information aside from blatantly asking with each application. Despite the many laws & policies meant to prevent prejudice, many potential employers seemed to suddenly lose interest upon discovering that I used a wheelchair, failing to reply to further messages, or simply terminating my application on the grounds that they couldn’t get me in the building.

I looked into progressing into dietetics as a post-graduate, but was bluntly informed that I wouldn’t pass the health checks needed to take the course. I couldn’t figure out how on earth using a wheelchair inhibited my ability to help people with their diets, of course assuming that the NHS would be the most accessible employer out there. After all, if you can wheel a bed through a hospital, you can get a wheelchair through, right?

My first job was in the NHS. The pay was barely above minimum wage, the hours were so pitiful that my annual earnings actually were below minimum wage, and it amounted to little more than pen-pushing, but it was a start. I proudly went to collect my ID badge from the HR department, rolled up the ramp & through the automatic door, & straight into a set of stairs. I looked around; there was no lift or other accessible entrance, & HR was 2 floors up. So I called them. At first, they simply refused to come down, but once a delivery driver had noticed my plight & marched up the stairs on my behalf, they were more obliging.

I started my job & almost immediately found that my credentials didn’t work when logging into my laptop. I called IT & they told me to come to them. I explained that given that they were 3 floors up without a lift, I couldn’t. After days of arguing they finally came out to us. This would happen every time I encountered an issue with my work laptop, but eventually the arguing lasted minutes instead of days. That was until one of my superiors decided I was making a fuss about nothing, told IT not to “pander” to me, & booked me an accessible taxi out to them before I’d even arrived in the office. It took the entire working day for me to get there & back as IT refused to come down to me, & upon my return I couldn’t even get into the office as my colleagues had blocked the door. I quit a week later; and that’s not even mentioning the fact that they failed to tell me about the Access to Work scheme, & once I had gone through the process they refused to follow the advice provided anyway.

I didn’t apply for any other NHS jobs, knowing I’d only encounter the same issues wherever I was. Instead, I predominantly applied for jobs at a place I knew was accommodating; the university. Less than 2 months later I was being trained for my new position at the Clinical Trials & Research Unit in the medical school. I didn’t go through Access to Work again, but the in-house occupational therapist recommended a specialist mouse, keyboard, keyboard-tray, desk, & chair to help me work, all of which I received soon after starting. I had issues with lift access & instead of being reprimanded, I was granted access to another lift that only a few of us, mainly disabled staff & students, could use. Office cubicles were even rearranged so that I could have a wall socket to charge my wheelchair.

Many accessibility issues relate to attitude over the facilities provided. This is true of educators, employers, health care providers, customer service workers, & people on the street. If you think this is untrue, just remember the current political attitude:

If a disabled person is not in education or employment, they’re a lazy scrounger living off the system, but if they do happen to work or be in education, they’re faking their disability.