Tag: Disability

Diary of a Disabled Person Needs YOU.

It’s that time of year again; the run-up to Christmas and New Year is picking up the pace. As such, it’s time for me to plan and write Christmas and New Year Specials, and while I’ve already got a plan for the New Year Special, I’m struggling to differentiate this year’s Christmas edition from last years. That is where YOU come in.

I want to know what Christmas-themed topics you want to read about. All suggestions are welcome provided they relate to the festive season and in some way relate to disability. Short story ideas are equally welcome. It doesn’t matter how vague or tenuous the suggestion is; all ideas will be considered! If your idea serves as the inspiration for the Christmas post, I will give you a shout-out both on here and on social media if you would like that.

Let me know what you think in the comments section, or alternatively you can send me an email via the contact tab on the main menu.  Monetary bribes are 100% accepted on the donate tab, also on the main menu.

I’m genuinely interested to see what you all come up with!

Accessible Ethics.

It takes a special kind of idiocy to deny that being accessible is right, but WHY is it right? I could never explain this eloquently so I’ve roped in a little assistance from my fiance, who just so happens to have a philosophy degree.
PS: These should be useful for shutting people up who hinder accessibility and then defend their actions.

Accessible Ethics.jpg

Andre the Advocate.

André René Roussimoff was more commonly known as André the Giant for a reason; standing at around 7 feet tall and weighing over 500 lbs as a result of his gigantism, he truly was gigantic. He is perhaps most famous for his role in the film The Princess Bride but was also a highly successful wrestler for the company we now call WWE. Due to his fame and successful career it is often forgotten altogether that gigantism is actually a disability.

The most obvious disadvantage of gigantism is the fact that the world is suited to smaller humans. Doorways, ceilings, beds, mirrors, and showerheads will all have posed problems due to his height, and utensils such as cutlery, glasses, and various buttons on pieces of technology will have been too small and delicate for his over-sized hands. Finding clothes that fitted must have been virtually impossible short of having everything tailor-made. For André, these were just the general inconveniences of everyday life.

André didn’t just have to contend with a world built for people smaller than him; his gigantism resulted from the excessive production of a growth hormone during childhood and later resulted in the development of acromegaly, continued growth despite the closure of his growth plates, which contributed towards his death from congestive heart failure. As you can imagine this excessive growth left him in almost constant pain and even required surgery to mend worn-down joints, and he took to heavy alcohol consumption to alleviate the symptoms.

While many people would undoubtedly have stayed behind closed doors in such a situation, hiding from the prying eyes and incessant curiosity of everybody else, André turned his gigantism to his advantage. He used his size to become one of the most beloved wrestlers in history, infamous for his ability to flatten his opponents in the ring, and also to land the roles of gigantic men in films. He managed to get paid for people gawping at him, something which they would have done regardless.

Not for one minute do I think André set out to become an advocate for disabled rights. Indeed, he is remembered primarily for his acting and wrestling careers, as he should be. However it is impossible to deny that in entering civilisation and paving his way to success, he proved that disability is not something to be frightened or ashamed of. He proved that people with disabilities are human beings with human rights. It’s quite possible that he inadvertently triggered some enormous changes concerning the perception of disability, particularly in the workplace. So while I think of him as a wrestler and actor, I also think of him as André the Advocate.

Andre

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.

Losing my Religion.

I was brought up in a Christian household, attending church most Sunday’s and participating in various Bible study groups as I grew up. My faith was an integral part of my identity, but beyond this I don’t think I ever gave much serious thought to my beliefs until I was given cause to doubt them, that cause being viral meningitis.

Contracting meningitis was sudden and unexpected, leaving my future shrouded in uncertainty as I struggled to deal with the new set of circumstances I found myself in. When my friends from church found out about my plight I was flooded with well-intentioned pieces of advice and encouragement, by far the most common being that God had done this for a purpose. What I couldn’t figure out was what exactly this purpose was.

I considered myself to be a good person; I went to church and prayed and read the Bible, I didn’t commit crimes, and on the whole I obeyed my parents and teachers. If I wasn’t being punished, what was I supposed to learn from this experience? The only thing I seemed to be learning was that people are unreliable and reluctant to shoulder anyone else’s burdens, and that didn’t seem to me to be a very Godly lesson. My faith was undeniably shaken but not completely destroyed.

As time passed and I felt better I tried to reconnect with God in the hope of having my questions answered. It soon became clear that all was not well; so began the process of being diagnosed with chronic fatigue syndrome and during that time I would pray every evening before bed, unloading my burdens onto someone else, giving me the relief and peace of mind I needed to sleep.

After about a year of chronic fatigue syndrome people at church started praying for my healing. At first this seemed like a nice gesture but I soon became disenchanted with the idea as my faith and even my willingness to get well were repeatedly called into question. The prayers no longer seemed to be offered out of concern for me; I felt as though my healing were the prize in a competition, the winner being whoever prayed for me last before my sudden and glorious recovery. Eventually I simply stopped going to church, just keeping in touch with those who were my genuine friends.

It was around this time that I realised my evening prayers were little more than a comfort blanket, a ruse if you will, that would keep me calm and allow me to sleep. With this gone I turned to scripture, but where once I had seen encouragement and enlightenment I now saw intolerance and exclusion. The harder I fought to keep my faith, the further it slipped from my grasp.

The final nail in the coffin for my beliefs was coming to terms with my sexuality, something I had vehemently denied myself all my life up to that point. Once I realised that my identity was being jeopardised by something that had already caused me so much pain, I let go altogether.

In all honesty I expected to be relieved; I was free of something that had held me back and diminished my self-worth ever since I had been given reason to turn against it. What actually happened was I felt that a huge part of my identity had been pulled away.

Even worse was the immense guilt I felt; a short while before when my faith was still relatively strong I had become someone’s godmother, and the thought of breaking my promise to the parents and the child was utterly soul destroying. Now I realise that I made a promise to help raise the child and teach him what I knew of Christianity, and whatever my beliefs that is something I still can and will do. If one day he asks me about my personal faith I will have to be honest and I only hope that he will not think of me as a liar. Perhaps I will even show him this little piece of writing to help explain my choices.

Up to this point I have never breathed a word of this to my godson’s family, nor even to my own family. However I can’t help but feel that being honest about my faith is the right thing to do, and I know that I can explain myself far more eloquently in written form than in a spoken conversation.