Employment – Diary of a Disabled Person.

Equal Pay For Disability.

Bold, white capital letters reading Equal Pay For Disability on a purple square. A black & white I.age of several empty wheelchairs surrounds the box in the background.

A Tory candidate has stated that disabled people should be paid less than our able-bodied counterparts, because our work is about happiness.
Because we don’t have bills to pay.
Because someone else will look after us.
Because we don’t pay more for transport, accessible accommodation, equipment, or medication.
Because able-bodied employers are giving us opportunities we should be grateful to receive.
My work saves lives.
It could save the NHS that they destroyed.
It takes skill, hard work, & dedication.
But because I use a wheelchair I should be paid less for it.
This story has already fallen off of the news websites. It’s already being covered up & forgotten. We cannot let that happen so close to a general election.
So if you support disability rights, even if you’re not in the UK, tell people about this. Tell them the truth.
That a vote for the Tories is a vote for blatant illegal ableism.
https://www.bbc.com/news/election-2019-50684582

The Corridor.

When you start a new job there’s a lot to think about; being in the right place at the right time, sorting out the paperwork, & introducing yourself to the total strangers you’ll spend 35 hours a week with. If you are disabled then there’s even more to think about. Unsurprisingly one of the things that concerns disabled employees most is accessibility.

I’m lucky to have an employer who took great care to ensure that I had all of the tools I would need to do my job. In fact, the only part I cannot do independently has nothing to do with my disability, & has everything to do with the fact that even when balanced precariously on a stool, I’m too short to reach the top shelf of the 2 metre tall cabinets.

In fact, the biggest obstacle to overcome didn’t occur in the office at all, but in getting to & from my work.

The building I work in is huge. It has 8 floors, not counting the secret underground laboratory where we’re teaching rabbits to wear flat caps & talk with a Yorkshire accent. Despite spending many hours in there as a student, & now working there, I get lost looking for anything beyond the rooms we commonly use, & the café which is nowhere near the rooms we use, but I just so happen to know where it is anyway. Oh, & then there’s the great big hospital we’re attached to.

There are 3 reasonably-sized lifts available to everyone who uses the building. Most people were more than accommodating when it came to lift access, but it only took a few arrogant tossers for me to spend 5 minutes waiting for the lift to come back around only to find it full again. I left enough time to account for this, but even then, I could be late into the office.

I raised this as an issue & much to my surprise, instead of being called a whinger I was granted access to a fourth lift that only people with a key could get to. You had to have the key to enter the corridor, & then had to use it again to operate the lift. It basically guaranteed me a spot in the lift whenever I wanted.

The problems arose because the cleaning staff, who were based along this new route, were not accustomed to wheelchair users. The corridor was frequently blocked. I asked politely to keep a route clear but was told it couldn’t be helped, so I told them that they would move it or there would be trouble. Naturally there was trouble, when I shared this photograph with the building manager:

The lift blocked by crates, boxes, trolleys, & all manner of cleaning equipment.

In all fairness to the team, it’s not happened since. Although, as it transpired, I had won the battle but not the war.

Next came the cleaner who, with good intentions, asked if I needed help getting through the double doors. I politely declined but was ignored, & the door was wrenched from my grasp resulting in a minor shoulder injury. Some might say I should just accept the help, but I despise the notion that I am not human enough to know my own capabilities or that my words are just hot air.

Even after this, my biggest obstacle was yet to come.

It was a Friday night & I was leaving the office. I entered the lift alone, my key dangling around my neck on a lanyard, which I used to select Floor 4 (which is one of the ground floor entrances alongside the other on floor 7. As I said, it’s a weird building and it’s also on a steep hill). The lift stopped at floor 5 and a porter pushed a large trolley into the lift.

“Where are you going?” he asked as if he couldn’t see the number 4 glowing.

“Floor 4,” I returned.

“No, you’re not,” he smirked.

“Um…yes, I am,” I responded sharply.

“There’s no way out there.”

“Yes, there is.”

“But you need a key.”

“You mean like the one dangling around my neck that you need to be able to operate the lift we’re in?”

Apparently, he was only being nice. He only asked a question because he had assumed that I didn’t know where I was going in the building on the route I used twice daily, 5 days a week. This fails to address why, once I’d told him where I was going (as if that was any of his business in the first place), he persisted to ignore my responses and undermine me with blunt statements.

Encountering this attitude once was bad enough, but it happened a second time, & a third time, & then a fourth. Before long I’d lost count. Despite the plethora of evidence which included my key, my staff badge, & buttons already pressed in the lift, I was frequently told that I didn’t know what I was doing & I shouldn’t be there.

My employers are doing all they can to stop this. All staff undergo extensive Equality & Inclusion training, & there are working groups & committees in place, several of which I am a member of. Signs have gone up by the lift alerting people that wheelchair users can use this route, asking others to be considerate. None of it has worked.

I do not blame this on my employer, nor is it a reflection of their attitude. It is instead a reflection of the general attitude towards disability displayed by the populace. It is the culmination of the stereotype that we are helpless individuals worthy only of pity. It stems from the hatred we face for relying on government funding that allows us to access the equipment we need to be able to work. Even if it is subconscious, in just one short corridor, I have encountered more ableism than I ever will in my actual job.

There is, however, one small thing that they have not accounted for; tyre tracks on their shoes will be the least of their worries if they get in my way.

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.

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.

The Working Days.

After an unsuccessful stint in the NHS which ended in redundancy a mere seven months after it began, I was lucky enough to find a new role in the medical research team at the university where my adventures began, and was only out of work for a little over a month. I promised many moons ago that I would write about being employed when I got there, at the time not realising that my upcoming work in the NHS wouldn’t make for good reading. Once there I decided to wait for something better to come along, and in a rare instance of good luck, something did.

The alarm rings at 6 am and I groggily emerge from the covers to eat the breakfast provided to me by Jarred, while he rushes to get dressed and catch the bus out to his own job. Often I will read for a short while before going to take my medicines and get dressed. I force my unruly curls into something resembling a neat bun and apply minimal make-up, before checking emails and social media. At 8.30 am I start my commute.

The university is near enough for me to commute as a pedestrian, ploughing through the crowds at bus stops and silently praying that one day they will realise I’m as a regular a commuter as they are, and figure out that keeping the pavement clear might be helpful. The route is probably only a mile long but the crowds make the journey feel longer, and I usually arrive at the office a few minutes before 9 am (depending on how many people took the stairs that morning). While I wait for my computer to wake up I get a hot drink from the nearby kitchen, and then I get to work.

My actual role in medical research is somewhat difficult to describe as it’s more classified than James Bond’s butthole, and disclosing too much could lead to me facing criminal justice (let alone getting fired). However, as always I am utterly committed to fan service, so here we go.

Every medical research trial has a team of people behind it who take the study design as instructed by the clever people in lab coats and actually make it happen. This team deals with practical and ethical concerns around recruiting participants, consent, and data collection, as well as liaising with sponsors and government bodies to keep everyone informed with the latest developments.

Within this team is a group who handles data collection and storage. Data is sent to us, entered into a secured database, and is then checked for errors, discrepancies, and missing information. This is the point where I come in, making sure that all of these little problems are resolved. This data can then be used by the statistics team to address the research hypothesis, and the more complete and accurate the data is, the better this analysis will be. My background in nutrition and understanding of statistics has certainly leant itself well to this role.

In between this data cleaning work are the usual meetings and goings on of any busy office, and I’m lucky enough to get an hour long lunchbreak in the midst of it all. By 5 pm the fatigue is starting to rise exponentially, so I log out, pack everything back into my desk, say goodnight to any colleagues still in the office, and head home. The pavements are equally a crowded but with no pressure to be somewhere for a particular time, this isn’t a problem.

I arrive home at approximately 5.30 pm, get a warm drink, and check social media, before going for a bath. After that I rest, often picking up a book to read until Jarred gets home at 9 pm. We get tea together, usually the defrosted half of something I made at the weekend, catch up on our favourite You Tube channels, and then go to bed. I don’t seem to have any trouble falling asleep, and morning quickly comes round again.

Finding a job – what happened next? – My Family Our Needs

Here’s a little mid-week treat for you all; what’s it like to be disabled in employment?

This ties in perfectly with next week’s blog post, which will have more of a focus on what my day-to-day working life is like.

My Family, Our Needs: My Article is Available Now!

Recently I wrote an article about job-hunting as a disabled person for the website My Family, Our Needs. It was published today and you can check it out here:

https://www.myfamilyourneeds.co.uk/emmas-job-hunting-journey/

To those of you who have already found my blog via this article, welcome! Please do like and subscribe to get brand new content every Sunday (and sometimes even in between, because I’m nice like that).