International Day of Disabled People.

My blog is called Diary of a Disabled Person, so I could hardly ignore the International Day of Disabled People, could I? I actually marked the occasion yesterday by attending an event hosted by Leeds City Museum, celebrating the empowerment of disabled women. I am only marginally offended at not being asked to speak.

One of the first people to speak to me when I entered the room was none other than the Lord Mayor himself, accompanied by his wife. I was blown away to see such an important figure at such a low-key event, but it was a very encouraging sign. After the mayor returned to his other duties I was helped to a cup of coffee by a very friendly member of staff, who also pulled out a seat to leave room for my wheelchair. That was when the string quartet in the corner began playing Christmas songs. I had great difficulty in stopping my pinky finger from being held aloft as I sipped my drink.

 

The Lord Mayor opened proceedings with a self-deprecating speech about how he felt that he, an able-bodied man, wasn’t the most appropriate opener for an event about disabled women. This set the tone for what was to come perfectly.

First up was British Para-athlete Kare Adenegan, Young Sports Personality of the Year and holder of the world record for the fastest 100 m wheelchair sprint, having usurped Hannah Cockroft’s record earlier in the year. She talked about how she was inspired by Hannah Cockroft’s performance at the 2012 London Paralympics, but that her school weren’t equipped for wheelchair sports, not knowing how to cope with her needs. Eventually she found a coach who did have those resources and skills, who encouraged and trained her. That coach must have done something right as in her first season as a junior para-athlete she was ranked within the top 10 in the world. In 2015 she competed in her first senior championships, achieving 2 bronze medals. In 2016 she went to Rio, where she won silver and bronze medals, just as she had done in the world championships that same year. Finally in August 2018, mere weeks after breaking Hannah Cockroft’s world record, she landed her first senior gold medal at the European championships in Berlin. There didn’t appear to be any hard feelings between Kare and Hannah, as footage shows them holding hands afterwards.

If these achievements weren’t enough to make us all feel inadequate on a Monday morning, she’s also doing her A-levels, and plans to go to University while maintaining her sport career.

As her segment drew to a close, she said one thing which I found incredibly relatable; “Disability has allowed me to have so many opportunities that I wouldn’t have without it”. This is a sentiment I have expressed several times before, and I agree whole-heartedly.

Next was Hayley Mills-Styles, a thread artist who uses and teaches needlework as a form of therapy and recovery. Her art focusses in particular on mental health, with one piece containing 52 small items representing each week of a year living with depression. She received many emails and messages from people who had seen her art exhibits thanking her for her efforts, as they reflected the feelings of others so accurately too. If nothing else, it seemed that people were comforted in knowing that they weren’t alone in their experiences. Hayley has also produced studies of how she ate when depressed, performing intricate cross-stitches of various food wrappers.

One of her projects stood out from the others; the Positive Patchwork project, produced by a group with various eating disorders at a local hospital. Although Hayley herself only contributed a small piece to the patchwork, she taught the patients new skills that they could take forwards as a form of therapy, enhancing their chances of full recovery. While the end product was impressive, she specified that it was the making of the patchwork that was the most important, as this was the therapeutic part.

Hayley was followed by Susan Hanley, a Leeds resident with a similar needlework business called Leep1. Susan is heavily involved in campaigning for disability rights, raising awareness of ableism and tackling hate crime, and regularly corresponds with local political figures. In 2010 she was voted Yorkshire Woman of the Year and is also a graduate of the Tomorrow’s Leaders Programme, a programme that helps disabled people gain skills in activism and leadership, skills she has used as a member of the People’s Parliament. Perhaps my favourite of her efforts though was arranging disability-friendly club nights at various nightclubs around the city, allowing disabled people to go on a night out without worrying about accessibility. It seems that in the midst of all her hard work, fun is a vital element of her life.

Finally came Sue; unfortunately I didn’t catch her last name. At one time Sue had normal vision, but then a viral infection of the optic nerve of her left eye induced inflammation, resulting in the steady loss of eye-sight in her left eye. Then, one morning, she woke up and could only see a solid wall of yellow. It was the last colour she ever saw.

The same virus that had blinded her left eye had now invaded her right eye, and soon her sight was lost. This would be tragic for anyone, but for a talented and passionate artist this could be seen as career-ending. But not for Sue.

Sue realised that she could feel the indentations left on paper by a pencil, and taught herself to draw with her right hand by using her left hand as a guide. Using this new skill she went to college, and then to the Bradford School of Art, but became frustrated as she could never see or fully appreciate the finished piece, only segments of it. Thus she turned to ceramics and 3D sculpture, something which relied on structure, shape, and texture, all of which could be experienced without vision. Thus she graduated with her degree and has continued to produce art; art which often prominently features the colour yellow, a colour indicative of both happiness and disease. Even for someone like me who tends to take things at face-value, the significance of that colour to Sue is clear.

Afterwards I stayed for a while, chatted with those around me and handed out leaflets for my blog. Rounding off the day perfectly was the view I got as I left the museum, before hurrying home to get this written and recorded.

 

 

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…

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.

Hen do!

Yesterday I had my hen do with my bridesmaid and her partner, & we visited the Kitty Cafe in Leeds.

Once again Sooty climbed onto my wheelchair, but this time I didn’t manage to get a photograph. However, I did get photo’s of:

Left: a selfie taken beforehand.

Right: a selfie taken with my bridesmaid while in the Kitty Cafe.

Left: a tortoiseshell called Cutie who almost fell of the cat tree while receiving a fuss.

Right: a 12 week old kitten called Panda, who was very playful after his nap, despite it being only his second day integrating with the customers.

Left: Johnnie the Maine Coon stole all our hearts with his excellent selfie-taking abilities, even if he did obscure my bridesmaid’s partner behind his big, fluffy ears while giving the camera some serious side-eye.

Top right: Johnnie takes a nap.

Bottom right: my bridesmaid’s partner, my bridesmaid, and me fussing Johnnie.

After spending many hours in the company of the cats, we went shopping for dresses and shoes:

Left: my bridesmaid finds the perfect dress!

Right: you can never have too much glitter. These bad boys will make me look extra special on the big day.