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 Final Student Day.

On the 17th July 2017 I woke to sunlight streaming between the slats of the Venetian blinds, and was about to turn over and go back to sleep when the alarm started. I wondered why I had put an alarm on for a Monday morning when I wasn’t working, and it took me longer than I would care to admit to realise that it was graduation day. Mornings were never a strong point.

Jarred and me made it onto the university campus by 10 am, and immediately went into the union to collect tickets for myself, my parents, and an additional one I had got for Jarred as he was my “carer” for the day.

Then we wandered through to the back of the union to collect my graduation robe and hood. A porter was directing people to the correct rooms depending on whether they were taking or returning robes, or  were going to watch the graduation ceremony live via a live-stream. Without asking first, the porter directed me towards the room for watching graduation ceremonies. Surely someone in a wheelchair couldn’t possibly have obtained a degree?!?

“I’ve just been awarded a first class degree with honours,” I said in a matter-of-fact tone, “and am here to graduate.”

The look of surprise on his face was akin to the expression people wear when I tell them that my disability originated from meningitis; somewhere between Taylor Swift and brain-dead.

“Oh…” he eventually stammered, “then you need to go into this room please.” He ushered me into the robing room.

Putting on the robe was something of a calamity. Long, flowing material has a tendency to become entwined around the motors and wheels of my wheelchair, and I had to be careful not to get it tangled in the seat belt (most wheelchairs have them, I’m not just a really bad driver). As I came out of the robing room the porter looked so sheepish that I was surprised not to see a yellow anti-sheep-theft tag dangling from his ear.

After greeting a few of my friends and course mates, Jarred and I went to meet my parents. Another period of awkward small talk in the midst of a crowd ensued, and then we were being shown into the Great Hall.

The front of the stage in the Great Hall was weighed down with ivy more plastic-looking than Nicki Minaj’s rear end, and the flowers weren’t much more organic either. I was given a seat on the front row, allowing me quick access for the lift onto the stage when it was needed.

Once everyone was in the hall and seated in the correct places, the next half an hour was spent clapping almost incessantly. I felt akin to a seal trying to earn an extra fish off its trainer. When I wasn’t clapping, I was high-fiving my course mates as they went past upon returning to their seats. Soon, my hands were red and tingling, and given the warmth of the day whilst smothered in black robes, they were sweaty too.

My surname means that I am always towards the end of any such procession, so it was quite some time before another porter was helping me into the lift, ready to ascend to the stage. For the most part the clapping hid the droning noise as the lift hauled me up onto stage, but one awkward silence between clapping while a name was read out was broken by the noise of the lift. Fortunately it had solid sides, so I don’t think anyone noticed my face-palm.

The porter opened the lift door at the top and my name was called. I drove across, positioned myself for the obligatory photo, collected my certificate, and returned to what I presume was the loudest lift in the entire world.

Image description: accepting my degree certificate. My green hood is draped over the back of my wheelchair chair.

After the ceremony came the free lunch, which was the reason why so many family members had attended, and photos of the whole year group were taken. Then I was driving around, finding as many of my friends and lecturers as I could, posing for photographs, giving well-wishes, and saying goodbye to those I wouldn’t see again.

Once I had done all I needed to I returned the robe to the sheep-porter (still looking sheepish), and meandered back home through the city centre. In the blink of an eye it was over, I had a degree, a huge student loan to pay off, was no longer a student, and was now expected to act like a proper adult. For all the happiness of achieving what I had, there was also a little sadness that it had come to an end.

Mike and me.jpg

Mum’s left foot is doing the disabled equivalent of a photobomb…

The Student Days.

It’s only after I’ve been writing this blog for several months that I’ve come to realise that I’ve never actually discussed what I do on a day-to-day basis. Admittedly the “day in the life of” trope is somewhat clichéd and overused and since my daily habits have changed drastically over the past few months, it’s a little difficult to give an accurate representation of what I would deem an ordinary day right now. Therefore, I’ve decided to write what an ordinary day entailed as a disabled university student, and in the future when my routine has settled down, I may be able to tell you what life as a disabled employee is like.

The alarm clicked into life at 7 am, and the sounds of Planet Rock slowly pulled me back to the land of the living. A few minutes later I would feel the bed springs move underneath me as Jarred hauled himself out of bed, while I remained immersed among the sheets. The kettle was switched on and I gradually sat myself upright while Jarred prepared breakfast, which he insisted on bringing me while I was in bed (although I didn’t exactly resist). While we ate breakfast, Jarred read the news as if he were in a 1950’s sitcom with a futuristic twist; the news was on his phone.

20 minutes, 1 cup of coffee, and a bowl of cereal later, I finally forced myself to leave the warmth of the bed and wandered over to the medicine cupboard. I’ve got into the habit of swallowing all the pills I have in a morning in one gulp to save time and very occasionally one would get stuck on my tongue, leaving a bad taste even after I’d brushed my teeth. After a quick wash I got dressed, usually jeans and a sweater or t-shirt, brushed my hair, applied a little make-up if I could be bothered, and pulled on my trainers.

At this point I often sat down at my computer and caught up with all the emails and messages that had accumulated overnight, and then I would nip across to the union to pick up something for lunch.

Lectures often started at 9 am, perhaps 10 am if I was lucky, and the rest of the morning was spent moving between different lecture theatres, writing down my notes as quickly as I could, often compromising on legibility in the process. If I didn’t have lectures in the afternoon, I was meeting with team mates for group projects, meeting with my supervisor for my dissertation, or working in the laboratory. The time often passed quickly while I was kept occupied, and I relished the experience.

By late afternoon I was usually pretty tired so I would go home, ditch my books and bags on my bed, and head back to the canteen for something hot to eat, reuniting with Jarred in the process. After eating whatever was on offer that night and catching up on how each other’s days had gone, Jarred and me would return to my apartment, where I would write my lecture notes up neatly. Longer tasks like researching and writing assignments, or things for group work, I would complete at the weekend when I wasn’t as tired.

I had usually finished my work by 8 pm in the evening, when I would have a warm shower, most of which was spent washing my ridiculously thick and frizzy hair, before pulling on the comfiest pyjamas possible and crashing in front of my favourite YouTube channels alongside Jarred. If we were feeling particularly silly,we would play Snakes and Ladders with all 6 counters that came with the board, adding an element of strategy by having to think about which piece to move to avoid the snakes and put ourselves in a favourable position for the ladders. By 10 pm I was often yawning every thirty seconds, and so I would have my evening medication (which was too numerous to take in one gulp) and clean my teeth, before crawling back under the sheets. It always takes me quite a while to go to sleep, and my student days were no different as I stared at the digital clock face blinking the seconds away before I had to do it all over again.

Such a routine might sound a little dull, tedious even, and I cannot honestly claim to have enjoyed every single minute of it. However, it is undeniable that every single one of those minutes was worth it because the rewards were simply too great to be overshadowed by anything.

Wheelchairs in Academia.

Emma Steer (Diary of a Disabled Person) and Aidan Bizony (The Disability Diaries).

From September 2014 to June 2017, I studied Nutrition at the University of Leeds. One extremely common misconception is that nutrition it is a relatively simple subject to study, with very little hard science to get to grips with. The reality is that over my three year course, I spent many hours in the lectures studying biochemistry and human physiology in great detail, and I used knowledge from physics, chemistry, biology, and mathematics on a daily basis. In addition to the lectures, I also spent a great deal of my time in various laboratories working on food processing procedures, food analysis, and studying the effects of nutrients on cell cultures.

Much like any other academic subject, the lectures were central to helping me understand my course. At first, some of my peers seemed to think that I had been given a place on the course out of pity, but soon learned otherwise when I consistently answered questions correctly and received high marks for my work. This train of thought is entirely forgivable though, given some peoples’ attitudes to political correctness.

I was provided with an assistant to help me get around the university campus, holding open doors and lifts, moving tables and chairs to accommodate my wheelchair, and fetching and returning books to and from the library. In addition I was offered support with note-taking, especially as my lectures were intense and fast-paced, requiring a rapid rate of note-taking that produced handwriting something akin to that of a doctors’. However, given that my main technique of learning involves repeatedly writing out notes, I decided to write my own notes in order to help me learn and simply learned to cope with the ache in my wrist at the end of the day.

Unsurprisingly it was in the laboratories where I needed the most support. People had to help fetch equipment and reagents, and return them to their rightful places or the cleaning station at the end of the experiments. I was allowed to perch on a rather uncomfortable wooden stool, on the condition that I could still move quickly enough if an accident occurred. Many of these experiments took several hours to complete, and by the end I was usually so tired that I could barely sit upright, despite having all the help the university could possibly provide me with. However I only ever left the laboratory early if it was necessary, earning the respect of my tutors and peers alike.

By the end of the course I had made many friends and learned many skills. I had transformed from a miserable hub of self-consciousness to a confident and relatively independent scholar with a passion for science and health care. University helped me develop into what I am today, as it does for any other student, regardless of subject or disability.

 

In February 2016, I started an Undergraduate Degree at the University of Cape Town in English and History.  Initially, I wanted to do Law but decided to embark on my passion for Literature instead – something I’m extremely glad I did now that I think about it. While a lot of my old high school buddies spend their types in laboratories or in Finance Lectures, I chose to spend my time debating word-choice in centuries-old novels. I’m happy with what I do. It, too, is one of the few avenues in my life that can be entirely disentangled from disability. Don’t get me wrong, disability is a part of who I am, but I don’t want to be dominated by it all the time.

As much as my field allows me to separate me from my physical limitations, sometimes the campus itself and the ideologies of those around me find a way, as John Keats put it, “toll me back to my sole self.” Granted, a physical disability is bound to bring with it some challenges that mean the experience is different, but I don’t see how the real-world complications should be allowed to creep into my academic life. To think, though, that 150+ year old university built on a mountain must suddenly redesign itself for a relatively small portion of the population who have certain physical difficulties is naïve – particularly when you consider all the other problems South Africa must address.

Regardless of the various difficulties I have in navigating the campus, there are several groups who strive to make the academic experience as separate as possible from the disability limitations students face. For instance, since the campus bus system is not wheelchair accessible the UCT Disability Service arrange alternative, accessible transport so that I do not have to be beholden to friends and/or family to get me to my classes and my classes are taught in wheelchair-accessible venues.

Close to the end of my Second Year and rapidly about to be thrown headfirst into my third and final year, I continue to realise that despite the various access problems and some people’s warped understanding of what it means to be disabled, my disability has not solely been a limitation to me or my fledgling university career. In fact, considering my life-long disability has had a dramatic impact on who I am as a person, the friendships I developed at university (which I hope will remain long after we graduate) have been directly influenced by the fact that I’m in a wheelchair.

Insofar as my disability shaped my interaction with university, I think university has equally influenced my perspective on my disability. Given the largely protected nature of high school, the fact that I am exposed to a wider variety of opinions towards my disability and still can thrive illustrates that while disability forms part of your life, disability doesn’t define you.