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.

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.

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.

  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 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.

Don’t Miss Me Too Much!

Just a quick reminder that I won’t be posting tomorrow due to the small matter that is my honeymoon. However, if you don’t already, you’re definitely going to want to follow me on Instagram (@diaryofadisabledperson) because my feed will be straight fire all week!

Diary of a Disabled Person: LIVE!

I have been asked to give a Ted-talk at the Disability Labour Association on Thursday 14th March, at Leeds Civic Hall.

So, if you want to hear the dulcet Yorkshire tones behind the blog with your own ears, be there from 6.45 – 8.00 pm.

If you’re really nice, I might even take a selfie with you (cake bribes optional).

Image description: Facebook event for the talk reading "DLA: Disability Labour Association. 14th March 2019, 18:45 - 20:30, West Room, Leeds Civic Hall."

Honeymoon.

Next week I’ll be heading to London for my honeymoon, so for the first time in Diary of a Disabled Person history, I’ll be taking a week off from blogging.

Diary of a Disabled Person will return on Sunday 10th March with brand new content!

In the meantime, you can keep up with everything I get up to on Facebook & Instagram (@diaryofadisabledperson), & Twitter (@WheelsofSteer).

Don’t miss me too much!