Wheelchair – Diary of a Disabled Person.

Able to Remember.

There are a plethora of reasons some people use as a means to discriminate against others, such as gender, sexuality, religion, race, and of course, disability. Over the past few years it was realised that if each minority facing a particular type discrimination banded together, forming a much larger group tackling all kinds of discrimination, they would have more power and influence due to sheer numbers. As such it is now very common to see people on social media listing all the types of discrimination that they oppose, but almost invariably there is one type of discrimination absent; ableism.

I do not for one second think that ableism is omitted intentionally, simply that it is forgotten or overlooked. Many people assume that the law protects the disabled against discrimination, but the law is all but meaningless when no one bothers to implement it. Others believe that ableism is a relic of the past, or don’t see why the misuse of special facilities or the obstruction of access routes is, in fact, ableism. Others simply forget that ableism exists at all.

With ableism so easily forgotten it is no surprise that issues such as equal access to transport, particularly on trains and aeroplanes, are still such a significant problem in 2018, nor is it surprising that a very large proportion of public spaces and buildings lack wheelchair access completely. Of course, when most courts lack proper wheelchair access including into the witness box, it’s hardly as if suing someone for discrimination is feasible. Therefore the problems go on unchecked and forgotten.

I am convinced that the first stage in the fight against ableism is simply to raise awareness. Over the past few years I have met lots of new people through university and work, and nearly all of them have said that being around me and observing my daily struggles has opened their eyes to the prevalence of ableism in day-to-day life. Many of these same people have told that me that their habits would change; they would be more reluctant to use disabled facilities unless they really had to, and that they would see cars parked on pavements and get angry without me even being there.

Anyone on Twitter may have seen the #JustAskDontGrab campaign led by fellow blogger Dr Amy Kavanagh, raising awareness of how to help disabled people without invading their personal space or inadvertently causing harm. The campaign predominantly focuses on anecdotes and personal experiences to highlight the issue, and uses the Twitter slogan for the benefit of computer algorithms. Seeing the impact Amy has made started me thinking; what if I could do the same to ensure that ableism is included in the fight against discrimination?

The trickiest part for me was coming up with a social media friendly signature, particularly as I didn’t want something that sounded aggressive or accusatory as I firmly support the fight against all types of discrimination too. Indeed when I finally had my eureka moment on my evening commute, I was so engrossed in thought that I almost collided with a lamp post. Thus #AbleToRemember was born. Now all I needed was a launch date, and I could think of no better than Remembrance Sunday itself. While the soldiers who died in the various wars are honoured by this session, those who became disabled in the war are often overlooked, demonstrating my point perfectly.

Whenever I spot ableism being omitted from a list of all other types of discrimination, I will be sharing it alongside #AbleToRemember, and I want others to do the same. I’m not pointing the finger or being antagonistic; I just want to ableism to become as unpalatable as any other type of discrimination.

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Attack of the Brain Fog.

Let’s be honest, we’ve all had plenty of cringe-inducing moments that keep us awake at night when you most need the sleep. Much as I would like to say otherwise I am no different in this respect. However where I differ from the norm is that I can blame these horrendous instances on my disability, or more specifically the so-called “brain fog” that plagues people with various chronic illnesses.

As a member of a small team in the workplace I grew accustomed to the little quirks and idiosyncrasies that would make us the perfect subject for a sitcom, were it not for the fact that this idea has been flogged one too many times. Organising a table tennis tournament for one lunch break has been one of my least serious assignments, but being asked to arrange a “cheese day” takes the biscuit (because nothing goes better with cheese than a nice selection of savoury biscuits). For cheese day we are all required to fetch different cheeses to work, and during the team meeting we’ll all enjoy samples of them all, which for an office is an undeniably weird thing to see displayed on the calendar.

Imagine my embarrassment then, when I realise that I had not sent the email invitation to my colleague, but instead had sent it to someone else of the same name in my address book. Fortunately he had an excellent sense of humour about it and is now considering implementing a cheese day in his own office. So if cheese day goes viral, you know who to blame; parents who give their children common names. Like Emma (thanks mum and dad).

I am particularly afflicted with brain fog first thing in a morning, which makes taking my morning medication rather interesting. The most common problem arises with a tablet I take both in the morning and at night in different doses. If I get them the wrong way around, taking the larger dose in the morning rather than the evening, I will spend the rest of the day in a drowsy stupor. This having occurred on a work morning means that technically I have been to work while high and got away with it, a claim that some would use the term “badass” to describe.

Perhaps more worrying was the occasion when I tried to inhale my nasal spray through my mouth, which was a somewhat interesting experience.

While living in halls of residence at university the fire alarm being set off at unthinkable hours by drunk people trying to use toasters was a very regular occurrence. When the fire alarm exploded into life at 2 am in my first week away from my parents I wondered why my dad hadn’t switched the burglar alarm off, which would occasionally go off at night when a spider crawled across the sensor (and never when someone was trying to break in). This is despite the fact that the fire alarm sounded completely different, was much louder, and included a red flashing light on the ceiling for those who couldn’t hear the alarm. Needless to say I was one of the last to arrive at the convening point as we were evacuated.

There is also the story of how this photo came to exist:

Discussing brain fog with a few online friends an accidental misreading lead to brain fog being substituted with brain frog in all of our messages. Given that for some strange reason I have a plushie toy frog (I still have the inventively named Croaky) it didn’t take long before dad took this photo for me. Selfies were harder back then.

By the way, if this becomes a meme the extra publicity is much appreciated.

The Virtual Cure.

Like most introverted geeks I’m a big fan of video games, and spend so much time playing them that I’m considering replacing my wheelchair control panel with a game controller. While I’m fond of some role-playing games my favourites tend to focus on either driving skills or combat, perhaps because I’m a weird kind of adrenaline junky who doesn’t like rollercoasters but still wants thrills.

There was a time when I wasn’t as comfortable playing video games as I am now, partly because of the stigma against female gamers that was prominent until relatively recently. It is only in the past year or so that I have come to describe myself as an avid, if casual, gamer. However in that time I have developed a deep love of video games that I refuse to be ashamed of, either for being a woman or being disabled. Nor do I take my gaming habits too seriously; they are what I do when I want a break and maybe a little stress relief, and are particularly fun when paired with a glass of wine (as is the case with a great many things).

A good video game is as immersive as an Agatha Christie novel and triggers genuine emotions as the story unfolds. Admittedly the emotions from Doom tend to be more of the “DIE YOU —— ——-“ type, but Horizon: Zero Dawn is a little more nuanced in between beating up giant robots with a spear. A game that can invest you in the setting, characters, and stories so beautifully feels real as you play. It doesn’t feel like I’m pressing buttons to move a digital image; it feels like I’m there reacting to the situation as it all happens. This is undeniably exhilarating for anyone, but for me it means I can experience the thrills of vigorous activity while only getting a cramp in my thumb. If a game is good enough it feels as if I can run and jump and do crazy somersaults that I couldn’t even manage pre-disability, let alone now. Besides, everyone deserves a little fun now and then.

At this point I probably sound like some over-invested nerd and perhaps to some extent I am, but I’m not exaggerating when I say that for a few all-too-short hours I am virtually cured. If for the rest of my life this is my only taste of having a fully-functional and not-painful body then I can live with that. I’m not about to start a gaming channel on YouTube, partly because I would only embarrass myself with my rather comical ability to fall off a cliff at the worst possible time, every single time.

Everybody has their favourite recreational pass-time and I am no different, disabled or otherwise. Sometimes we have a tendency to overlook the importance of recreation and how it can benefit us in unexpected ways. Now if you’ll excuse me, the PlayStation calls…

Time for a Change.

Accessible public toilets are the bane of my existence and the same sentiment is felt among others with disabilities too. Considering that it is a basic human right to have access to a toilet, the difficulty many disabled people have in accessing a disabled toilet is abysmal.

In some places the disabled toilet, if they even have one, is little more than an enlarged cubicle with unsteady grab rails and a broken emergency cord. Sometimes these cubicles are nothing short of filthy, and sometimes they’re being used as storage cupboards. Sometimes they double up as baby-changing facilities creating a problem for both parents and the disabled, and on more than one occasion I have left a cubicle to be berated by an angry parent with a screaming baby for daring to use the toilet. Often enough the baby-changing facilities are not packed away properly after they have been used making it nigh-on impossible for a wheelchair user to enter the stall, and quite often soiled nappies will simply be left on the side instead of disposed of.

In most places there is also usually just one disabled toilet and should someone decide to use the disabled cubicle because it is nearer, or because they want to take a dump in peace (I’m serious, that happens a lot), that delays the person with a genuine disability from accessing the facilities they need. Sometimes people have invisible disabilities meaning that they can’t walk as far as the other toilets or they may have medical waste bags hidden beneath their clothes, so tackling people about misusing these facilities becomes a mine-field.

To combat the situation pro-actively, some establishments have taken to locking the disabled toilet and only giving the key to those who ask for it. However, as I’m sure you can imagine, trying to attract the attention of a member of staff in a busy venue is difficult and rather embarrassing. In the UK there is a scheme with a special key to unlock disabled toilets, providing they have the specific lock available. As I understand it having this lock fitted can be very expensive, so only the big businesses tend to have them.

However, if I have a tough time accessing a toilet in public, then for those who need full changing facilities it must be virtually impossible. I can count on one hand the number of places I know that have full changing facilities, and all of them are large shopping centres stocking exactly the same stock as every shopping centre in the country. The competition for a normal disabled toilet is definitely a problem, making full changing facilities little more than a myth. This forces many people to change on the floor of the stall, which as aforementioned can be cramped and dirty, making it down-right dangerous.

I admit that I can understand the concerns some venues express when talking about full changing facilities; not only do they take up a large space and need high maintenance, but they are very expensive, time-consuming, and disruptive to fit in the first place. They are also still subject to all of the issues disabled people who don’t need full changing facilities face. However, when you consider that access to a toilet is a human right, these arguments fade into futility. Western civilisation has worked so hard to provide the lesser developed countries with essential resources like proper sanitation and yet a whole portion of the population right here face a situation equally as grim.

If you don’t need to use a disabled toilet, unless perhaps all the other toilets nearby are in use, then don’t use it. If you need to use the cubicle to change a baby’s nappy, be considerate of other users including other parents. If you have an invisible disability, don’t be afraid or ashamed to stick up for yourself if you have to. And if, like me, you don’t need access to full changing facilities, try to use a disabled toilet without them if there is one available.

More Than Ramps or Lifts.

Living in the heart of a city means that everything I could desire is practically on my door step, or perhaps more appropriately, my door ramp. Therefore it should hardly be surprising that I like to take advantage of this fact and spend a great deal of my time in the various bars, pubs, cafes, restaurants, shops, and cinemas in the local area, and as such I have encountered every standard of accessibility from “I don’t think my insurance will cover that” to “world domination is nigh”. It is from these experiences that I have learned a peculiar fact, one that by most accounts would seem counter-intuitive; accessibility is about more than having ramps and lifts.

I have discovered that it is not enough for a building to have ramps, lifts, and disabled toilets; they have to be usable too. I have been in many fully accessible buildings to find ramps and corridors needlessly obstructed, lifts shut down, accessible doors locked while the inaccessible main entrance remains open, or even disabled toilets being used as storage cupboards. Sometimes facilities have to be blocked off if they are unsafe but the fact that routes are blocked is rarely communicated to the buildings users, and I have spent a great deal of my time backtracking down corridors when a simple sign at the entrance would have sufficed.

The people in charge of these buildings pride themselves on their accessible facilities, as they should, but in their pride they fail to implement them. Many a manager has failed to see why I am so adamant that blocking something accessible renders it inaccessible, or why having to wait outside in the Yorkshire rain getting soaked to the skin while my able-bodied counterpart goes inside to get someone’s attention is an issue (God forbid I ever go out with other disabled people, or worse, on my own); the general attitude is that I am making a fuss about nothing and this often means that the same mistake is made over and over again. I believe that in this attitude lies the problem.

When I attended one of my beloved wrestling shows at a new venue, an older building in an industrial complex, it was undergoing building work at the time. There was a central courtyard and on the right was a building containing the bar and the toilets which had two steps up to the door. The manager of this building spoke to me, informing me of his plans to have a concrete ramp put in along with all the other work that was going on, and also to ensure that the disabled toilet had running water supplied to it as soon as he could. On the left was the room containing the wrestling ring and the door was too narrow to pass through without leaving behind some nasty scratches on the wall, and also had a very small step down which my wheelchair may or may not have been able to manage, mostly depending on the level of sobriety of the driver. Thinking quickly the manager opened the double doors around the corner which was serving as the wrestler’s entrance, and guided us down a wide, level corridor into the room. On the way out he made sure that the passage was clear for me and my fellow compatriots to exit the event safely.

This building did not have the same resources available to render it accessible, it being an old, re-purposed building with a cheap rent, exacerbated by the building works. Despite this, the buildings’ staff went out of their way to make sure that I could get in to see the show with no major compromises, and also to reassure me that the standard of accessibility would increase. While they lacked the resources, their attitude meant that the problems were resolved to everyone’s satisfaction.

It struck me as I was going home after the wrestling show that accessibility is far more than just having the right car parking spaces, toilets, changing rooms, hoists, ramps, lifts, hearing loops, and other facilities. Accessibility is using those facilities appropriately, not misusing them, and making sure that they are available to those that need them when they are needed. Accessibility is also in the welcoming attitude of the staff who don’t make me feel like an inconvenience on wheels. Accessibility is just a visual representation of equality.

Mission Impossible 4: Looking for a Job.

It is widely accepted that job-hunting is a stressful, disheartening, and sometimes even degrading process for just about anyone. It is also known that certain groups such as ethnic or religious minorities, women, or LGBTQ+ people may find the job-hunting process even more complicated, and the same is applicable to disability.

At the start of my job-hunt I immediately ruled out any jobs that I couldn’t physically do. For example, being a personal trainer would not be an advisable career path for me. I often struggle to reach things in shops so stocking shelves in shops was out of the question. I would be a trip hazard in an industrial kitchen so working as a chef or waitress was not a viable option. This left me with office jobs. Administration. Paperwork. Pen-pushing, as some like to call it.

I then had to consider the commute; trains are just too unreliable as a wheelchair user to get to and from work, as are taxis. Buses were the only viable option, and even then rush hour traffic would make the journey long and gruelling. So I now had additional limits of suitable locations too.

I signed up to a few employment websites, and sent my CV off to as many people as I could like an over-excited puppy. A large chunk of these replied to tell me that I couldn’t work in their office because I was in a wheelchair; their office was inaccessible. One office wrote to tell me that they were equipped to take manual wheelchairs only, so if I was prepared to subject myself to agonising pain on a daily basis they would be happy to consider my application.

All these restrictions, of course, came on top of the usual expectation to have thirty years of work experience by age twenty, and to have five PhD’s to boot. This left me with an incredibly limited number of jobs that I could apply for in the hopes of actually getting a job.

The majority of the jobs that I applied for rejected me on the basis that I had little work experience, as I couldn’t physically manage to work on top of my studies. I had written for a university magazine, been a secretary of a society, and had started this blog, but most places did not consider these to be proper work experience. Only one invited me to an interview. Clearly the stars aligned on this occasion because a couple of days later I received a phone call (in the middle of the supermarket, no less) telling me I had the job. While the contract was not exactly lucrative and the wage certainly did not come to much, I was just happy to have a job.

There was a long period between finding out that I actually had the job and starting work, as there was a lot of paperwork to complete, so in the meantime I took to going out to cafes, coffee shops, or the library on a daily basis to write. I would write things for my blog or I would write articles for Cracked, the latter of which I received a little money for. As someone who gets bored quite easily and is then an absolute nightmare to be around, the writing aspect of my life quite literally saved me from going completely out of my mind.

Little did I know that after only seven months in my job I would be let go. It was suggested that I continue working for other administrative roles in the NHS, but given that most of these were in an inaccessible office and the remaining shifts were so few and far between as to amount to nothing, it was far more viable to pack it in altogether. At least this way I would have the relevant paperwork to hand, hopefully meaning that when I did eventually land a new job, half of the paperwork would already be complete.

Even though I only have a little work experience to date, I was at least offered multiple job interviews throughout this second period of job applications. However, as I got negative result after negative result, I became increasingly disheartened. Then, one Monday afternoon while sat tapping away at my keyboard in the local geek hidey-hole, the phone rang. I had got a job, but not just any job. I would be joining one of the top medical research facilities in the country as a data management assistant, which was nothing short of my dream job. Now all I have to do is not mess this up.

Mission Impossible 3: Find a Home.

As the end of my time at university approached Jarred and I began the search for our very first home together. Limited by budget and location as well as wheelchair access we were prepared for a difficult and stressful experience, but even our strong cynicism could never have prepared us for what lay ahead.

The first hurdle came in the form of the letting agents, or rather the lack of accessible letting agents. I was entirely dependent on Jarred to go and speak to the letting agents face-to-face, and because of this the letting agents would always contact Jarred before me despite the fact that I would be the one paying the deposit and administrative fees. I couldn’t tell if this was because I was a woman, disabled, or simply because I couldn’t get into the office, but it was frustrating none-the-less.

Over the Easter break in 2017 a flat within our budget and desired location became available for viewing. The day before we were due to visit the flat Jarred found the building while doing some shopping in the city centre, so we wouldn’t be late for our appointment. To his dismay he saw that the main entrance to the building had a large step in the door, despite reassurances from the letting agent that the building could accommodate a wheelchair. Fortunately the receptionist saw him standing outside with a bemused look on his face and came to his aid. Jarred explained his predicament and the receptionist kindly showed him the accessible route into the building; down a steep ramp into the garage beneath the building, where a lift was situated next to the stairwell.

The next day we went together to view the flats on offer. We were on time and the receptionist let us in through the garage, and we met the letting agent in reception. We took the lift to the fourth floor and travelled along the narrow corridor to the furthest door. The flat was a small bedsit with the kitchen immediately on the left as the door opened, and the bathroom on the right. The lounge was at the opposite end of the kitchen, with the bedroom next to it, and all the rooms were connected in a loop. It was tiny and although it could fit the wheelchair in, it was a tight fit.

Not convinced, we decided to look at the other accessible flat on offer which was facing the bedsit. The door opened onto a short corridor that could comfortably accommodate my wheelchair, even with a shoe rack in it. On my right was the bathroom, which I could move around in freely in my wheelchair, and the bedroom was also accessible. Finally we went into the lounge/kitchen/dining area which was spacious and light. The electric meter and bin store were down a step but I could manage these on walking sticks if Jarred hadn’t got to them first. It was just within our budget, in the perfect location, and could accommodate my wheelchair without too many problems so we immediately put the deposit down on the flat.

After this came the paperwork, which was the most complex stage of the process, particularly because the letting agent said they needed me to sign the papers in person, insisting that I go to the office to do so. They refused to come out to the flat as a meeting point, despite this only being around the corner from their office, and eventually they compromised by letting us sign online versions of the documents. Then Jarred went to collect the keys.

Jarred was given two sets of keys for the flat, including one for me which included access to the garage. Unfortunately while the garage key worked, the key that allowed access to the lift from the garage was an old key that didn’t work. Jarred’s keys did not work on this door either, and it took a lot of arguing to convince the letting agent that I couldn’t simply rely on Jarred to go through the main door (which worked) to run downstairs and let me in from inside the building. They seemed to have no concept of my desire for independence, or the fact that I would be coming and going under my own steam more often than with company. Fortunately I had had the foresight to ensure that there was a week’s overlap from our old apartments to our new one, so I simply stayed in my old apartment for a few days until the issue was resolved.

I think this whole debacle emphasises how difficult it can be for disabled people to be independent, whether that be due to inaccessible buildings or the general attitude that those with disabilities are incapable of independence. Obviously I say this as a wheelchair user, but I’m certain that those with other disabilities are subjected to a similar attitude themselves.