A Tale of Two Cities.

For my entire, although admittedly not very long life I’ve only ever lived in two cities, both within sight of each other in West Yorkshire, the best county in the UK.

I spent my school days in Bradford, a city built in the basin between many steep and sprawling hills, which has a mildly unfair reputation for being a city full of low-life criminals. Aside from the several decidedly high-life criminals living there, most of the citizens are decent people trying to make a (mostly) honest living. It has a rich industrial history, and some of the best food in the UK. As someone who spent 18 years there, I can say from experience that it is a multicultural hub of people from all backgrounds, just like many cities around the world.

Unfortunately for the disabled, perhaps as a combined result of steep hills and historical architecture, the track record for accessibility is not brilliant. While the modern buildings have to make provisions for access by law, many of the older buildings are protected by historians who are more concerned with historical preservation than equal rights, making it incredibly difficult to install disabled access. Similarly, a lack of funding often means that smaller shops and businesses simply can’t make the necessary changes to allow wheelchair access. However, even if every building in the city centre was accessible, some of the hills are so steep, the pavements so narrow, and the car parks so expensive that it is virtually impossible to traverse the city centre with any kind of disability. Geography simply wasn’t our side when Bradford was built.

Although I had a great childhood in Bradford, I never felt like I belonged there. This was not entirely due to the disability, as even before suffering meningitis I didn’t quite fit in. My interest in higher education may have been a large factor here, as those running businesses in Bradford quite rightly feel that being clever doesn’t always help day-to-day life. It may also be that my drive to progress and move forward, while many in Bradford are perfectly content to stay in one place doing what they know, set me apart from others. Whatever the case, when I finally came to leave school, I was ready to move cities.

I have lived in Leeds since starting university in 2014. Although hills are still a common occurrence here, they are nowhere near as steep as those in Bradford and the city centre is actually quite flat. Most of the buildings are modern, and have automatically incorporated disabled access, and even the historic buildings often have some form of provision for disabilities. It also helps that when the pavements are disrupted due to building work, ramps are put down for wheelchair users in place of the blocked kerb drops, and they aren’t stolen within a week. Living in the city centre means that everything is nearby, so it is rare that I need to rely on public transport, which is readily available for me when I do need it.

From day one of university, I fell in love with Leeds. While not quite as culturally diverse as Bradford, it still houses many cultures, and that means the food is pretty good. Leeds is the type of city where you will never get bored; you can guarantee that there will something going on somewhere, whether it be a concert, show, or special event hosted by the council. The council make a particular effort to maintain disabled access at these events, so I’m never excluded. I always enjoy just wandering around the shops, particularly near Christmas when the lights and decorations are on full display. Although it can be cold, I’m never far from warmth and a hot drink.

Obviously university quenched my thirst for higher education, but I was impressed by how forward-thinking Leeds was as a city. Admittedly this shouldn’t surprise anyone, as the city has three universities and many more colleges, so a lot of innovative minds congregate here. Many people say that London never stops but that it is always bustling with activity, and I would say the same of Leeds. It is in this fast-paced, liberal, and ever-changing environment that I truly fit.

We still get low-life criminals though…

Trump UK Protest.

The turnout for last night’s protest in Leeds was amazing. People were protesting for so many reasons; ableism, sexism, racism, homophobia, Islamophobia, transphobia, gun control, abortion rights, and the way ICE are separating families. It felt really good to be a part of this movement towards a more peaceful, liberal society!

Trump Protest.jpg

Diary of a Disabled Person: Collector’s Edition.

Ever since starting this blog in January 2017 I’ve been asked about writing a book countless times. I have decided that now is the time to announce that I am giving serious thought to doing just that, and using my blog as a template for a book.

This won’t be happening any time soon; I will need to edit and reorder blog posts to suit the book format, and I will also be adding some exclusive content which will take some time to put together. I am then going to need an editor or two to proof-read and validate my work – I have a couple of people in mind and they will hear from me shortly.

I also need to register as self-employed and look at how, once written and edited, I should go about publishing the book. Chances are I will opt to self-publish, and while I would love to have the book printed, e-books may be my only viable option financially.

I can only ask that you are patient with me as this is a monumental undertaking, but I think the hard work will pay off. Any financial support that can be offered to help bring this project into existence would be very much appreciated.

In the meantime, please keep reading my blog!

The Leibster Award Strikes Back!

I am extremely excited to announce that I have once again been nominated to receive the Leibster Award, taking me up to a total of three awards received in a matter of months.

I am planning to accept the award a week from Sunday (1st July).

A big thanks to Alex Squire at The Life Quadraplegic for nominating me. https://quadlifeblog.com/

School, Sickness, and Stupidity: Part 2.

Outside of school, I had progressed to using a manual wheelchair, and I requested permission to use my wheelchair in school. After three months of arguing that they couldn’t accommodate another wheelchair on top of the few wheelchair users already at the school, they relented; I could use my wheelchair on the school premises, but was refused assistance to push the wheelchair, or access to the disabled toilets. They claimed this was because the paperwork that would allow them to assign me a care assistant wasn’t in place, despite having initially claimed that this paperwork was not essential to receive support. I had to rely on my peers to push me around school, and I became a job that needed doing, losing friends.

As my final GCSE exams approached, I requested special conditions to accommodate my illness, such as a scribe, and extra time to compensate for the pain I endured when writing quickly. The first set of exams had been and gone before the school even dealt with the paperwork, and eventually it was decided that I could have extra time, but not a scribe. I was also refused a room apart from all the other students, and this meant that I had to sit in the main hall while the others exams were collected, being called names and having things thrown at me because of my “special treatment”. The incessant chatter of all the students who had finished their exam was so loud I couldn’t concentrate, rendering the extra time almost entirely pointless. By the time I completed my exams, I couldn’t get out of the school fast enough.

It was during that summer break that I attempted suicide.

I relinquished all responsibility for my education, leaving my mum to pick up the pieces. She searched for other schools or colleges where I could sit my A-levels, but either their courses were already full, or they weren’t accessible. Left with no choice but to return to the same school, mum decided to speak to the head of the post-GCSE team.

How mum managed it, I don’t know, but when I returned in September I had a carer to push me around school, access to disabled toilets, and was permitted the use of a separate, quiet room for exams. What I do know is that mum had to attend many meetings, and sit through many heated discussions. She presented medical evidence from the doctor and the physiotherapist, she showed them how it was physically impossible for me to push myself in the wheelchair, and she spoke with the most senior members of staff at the school to force their hand. I was denied access to hydrotherapy, one of the only medical techniques that genuinely helped me, which was offered to every other disabled student at the school. I was still denied a scribe for exams, but I was too relieved that I wouldn’t have to sit my future exams in a room full of hatred to complain.

We were denied access to transport to get to and from school, and since dad was working and mum was sick, we had to rely on local friends to push the wheelchair. I was told that no one at the school was insured to push a wheelchair off the premises and they refused to help us, while still demanding my attendance. One of the teaching assistants noticed my plight, and told the administration team not to be so stupid; eventually she took to pushing my wheelchair off the premises, insured or otherwise.

Inside the school, some of the carers were excellent. Some were not. I was regularly late for class because carers failed to turn up on time, if at all. Approximately once a week I would be left in the disabled toilet while my carer wandered off to have a break, and I had to sit there until someone noticed me waiting. When I spoke to the head of the care team about this, I was reminded that there was no official paperwork saying I needed support, and therefore all support could be withdrawn quite easily. My silence on the matter henceforth was for fear of what support might be relinquished otherwise.

Since I was studying the sciences, practical work and experiments were inevitable. The school argued that they were not insured to provide support in these cases, and that meant that I was expected to walk around a laboratory doing my own experiments. Fortunately, these were not a frequent enough occurrence to cause me major issues, and soon enough my teachers began to provide what support they could while simultaneously keeping an eye on the class.

It was also expected that students stay behind out of school hours for extra study, and those who didn’t were penalised. However, care support did not exist outside of official school hours, meaning I was expected to attend extra-curricular activities alone, including on one occasion an assessed chemistry experiment. This resulted in further exhaustion and pain, but I could say little to those managing the special needs department out of fear.

Finally, I managed to gather the funds to buy a second-hand powered wheelchair, giving me the freedom to travel to and from school myself. I still needed a little help getting around the building, but I was not as heavily dependent on this as before. Given my past experiences, I did not ask the school permission to use my powered chair, but simply turned up in it. They couldn’t turn me away without the attendance team tearing them to shreds.

By the time my school days drew to a close, I was so sick of the place that I would have given anything to leave. On results day, I was so relieved to know that I would be progressing to university that I almost cried. I went and said good bye to the students and members of staff who had helped me, and ignored those who hadn’t.

It is perhaps no surprise why leaving school was one of the best things ever to happen to me.

The Worst Days.

As diabolically insane as this sounds, it’s sometimes all too easy to forget just how bad my Chronic Fatigue Syndrome can get. I get so caught up in the managing of day-to-day events like work and chores that I forget the reason why I manage these tasks so carefully, and then a relapse arrives.

I know it’s going to be a tough day when I wake up and can’t open my eyes. It usually takes several minutes and a monumental effort to finally prise my eyelids apart, and it’s rare that I can keep my eyes open for longer than a second or two. When Jarred switches the light on it feels like I’m looking directly at the sun, and usually aggravates the dull throbbing in my head. Even when lying down, my muscles feel fatigued and my joints ache, so much so that sitting up isn’t an option, and nausea ensures my constant discomfort.

Jarred will fetch me a cup of water and my medication from the kitchen, as often I cannot face eating anything for breakfast. Then, he will go about his daily business and allow me to sink back into sheets and fall asleep.

The sleep I get on these days is not restful, but is broken regularly by short spells of wakefulness before I drift off again. I will dream vividly as I lose track of time, and while the dreams I have when I feel this way are not nightmares, they’re not exactly pleasant either. Eventually, after approximately five of these dreaming sessions, I will wake up properly. I feel more alert and aware of the things going on around me, and my eyes stay open of their own accord. At this point I know I will not sleep for another few hours.

Jarred nips in and out of the bedroom between his daily activities to check on me, so I don’t normally have long to wait before he finds me awake. If I think I can stomach it, he will make me a small sandwich or a bowl of soup, propping up our pillows on the bedhead and lifting my shoulders, so that all I have to do is shuffle slowly until I’m leant against the pillows.

After eating, if I manage to eat at all, comes the hardest part of the day. My mind will be constantly active at this point, often focussing on tasks that I had planned to attend to that day, but my body simply can’t keep up. I grow bored and restless, but can do nothing about it. If I’m lucky I might be able to read a book for a little while, but even the smallest volumes make my arms hurt as I read. Often Jarred has brought through a simple board game likes snakes and ladders, which at least takes my mind off of my condition for a short while. Sometimes I will lean on Jarred, and he will practically carry me into the lounge where I can sit on the sofa and binge watch something on Netflix, but moving me from room to room is difficult for both of us.

As the evening closes in, Jarred will offer me another small something to eat, and will then sit on the bed with a basin of tepid water, washing my hands and face for me. By this point it is all I can do not to fall onto the pillows as Jarred lays them flat on the mattress, pulling the duvet over me as I lack the necessary strength to do this. It doesn’t take me long to fall asleep, but I will be plagued by spells of waking and vivid dreams for most of the night.

These spells can last for several days, or even for a week or two in particularly bad cases. They are undeniably strenuous for me, but also apply pressure to those around me. Similarly, the backlog of tasks not done often makes the recovery harder, as once I am able to turn my attention to them, I have so many to do that it is overwhelming. Fortunately, these spells are not common; as far as CFS goes, I’m one of the lucky ones.