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

Organised Time.

Having established contact with many people who are struggling with chronic illnesses like my own, I have been asked more times than I can count how I managed to study for a degree, and now to write and work, while living with an illness. Admittedly, this is more of a struggle than I like to let on, and to say I have stubbornness issues would be to put it mildly. However, there is one strategy I have found invaluable in the management of my disease, and instead of being a fancy, marketable, secret trick, it’s actually quite boring. I manage my time very carefully.

On days when I have more academic or written work to get through than normal, I cannot manage any other tasks such as housework, or going out to socialise. On these days I make sure to avoid any additional tasks where I can, focusing my energy on completing the work, leaving me time to pace myself with regular rest periods throughout the day. On days when I have an average workload, I may do something such as go out to a coffee shop, or spend a little longer preparing an evening meal, but again the work becomes the main focus of the day. On days with a light or minimal workload, I do what housework I can, and when I’m not doing housework I have time for social and recreational activities, usually involving cake somewhere along the line.

Inevitably, schedules change at the last minute, and so this system has some flexibility to it. I swap round when I am going to do which activities, or what night I’m going to cook each meal, giving me more or less time as needed depending on the day. However, on the whole this little trick keeps my daily energy expenditure approximately equal, reducing the chances of having a complete energy burnout. Although this system is perhaps a little dull, it works well for me and my lifestyle, and allows me to make the most of my time and energy.

Obviously this doesn’t always work. On some days, perhaps because my body thoroughly dislikes me, even the most careful time management fails and I end up flat on my back in bed feeling like I’ve been run over by my own wheelchair while suffering from a bad cold. On these days, I can do nothing more than maintain essential bodily functions, and these are the hardest days. As someone who gets bored very easily, the days when I can do nothing are the most frustrating, as my mind will insist on remaining active while the rest of me just wants to lie still. These occasions are not as commonplace as they used to be, though.

My system won’t work for everyone; I’m a naturally organised person who likes to plan ahead. I simply utilised the skill that I already had to benefit my adopted lifestyle when I fell ill. There are other little life hacks that other people use to manage their own illnesses, often based on skills they are already well-practised in. They can be tailored to our individual lifestyles, and used to help us whatever situation we may find ourselves in. There is no one solve-all trick.

Asking for advice from others who have experience at handling chronic illness for a long time is useful, and certainly things that help one person may become useful to another. However, it is essential that we remember the individuality of our cases; the same things won’t work for everyone because everyone’s story is slightly different. Simply embrace the skills you already know, and use them to your advantage.

Deja vu; Return of the Leibster Award.

Once again, in just a matter of months, I am extremely flattered have been nominated for the Leibster award! This time I was nominated by Alex, author of The Life Quadriplegic (https://quadlifeblog.com/), and to him I say a very earnest thank you.

The Leibster award was created in 2011 in Germany, and is given to bloggers by other bloggers online. This award focuses on small blogs, recognising their potential to grow, and acknowledging those with the kindest, welcoming, most-valued musings.

To accept the award after being nominated, the blogger is requested to accept the award on their blog, and thank the blogger who nominated them with a link to their blog included. On this occasion, I have been asked to answer 11 questions asked by the person who nominated me, nominate some more people, and give those nominees 11 questions to answer.

11 Answers to Alex’s Questions.

Q: If you could visit any time in the past (or future) when would it be and why? A: I would love to visit Ancient Egypt, sometime after the building of the pyramids when civilisation was well established, but before Cleopatra’s reign. From what I know of that period, women were often seen as the equals of men, and were able to own land and money. Plus, cats.

Q: What is the one thing you most hope to achieve by blogging? A: I want to challenge societal perceptions of disability by reaching as wide an audience as possible, and educating them about the lives of the disabled, and how to treat disabled people.

Q: Who is your hero – the person you most respect and look up to? And why? A: It’s a cliché answer for a disabled person, but I’d have to say Stephen Hawking. Not only did he challenge people’s perceptions of disability and helped to normalise disabled people, but he also managed to make any invaluable contributions to scientific research.

Q: Where do you hope to be in your life 5 years from now? A: I never like to plan ahead too much, as personal experience has shown me all too well that mind-blowing, life-changing events can turn your entire world upside-down in a matter of hours. However, I certainly wouldn’t be disappointed if I had established myself as a writer with experience behind me, and a potential career ahead.

Q:  If you could give any advice to your 10-year-old self what would it be? A: Stop trying to please the cool kids. The more you try to fit in, the more they’ll ridicule you.

Q: What is your favourite quote, and why? A: “I will never be voiceless, my weapon of choice” – from the chorus of Dangerous by Shinedown. It reminds me that being vocal about something that isn’t right is the only way to make others see that it is wrong, and helps them change it.

Q: What is your favourite thing to do in your spare time? A: I’m a big fan of video games. Recently I’ve played Doom (2016), Horizon Zero Dawn, and Assassin’s Creed: Origins, all of which I have thoroughly enjoyed.

Q: Name one thing you would change about the world, and why? A: I would want everyone to have equal access to education and healthcare, regardless of location, age, gender identity, sexuality, race, religion, wealth, disability, or any other means of discrimination. That still leaves people to make the choice as to how they want to live, but gives everyone the chance to get educated and live a healthy lifestyle if that’s what they wanted.

Q: Where is your favourite place that you have travelled to? What do you like about it? A: I’ve been all over the Lake District in the north of England, and I’ve loved every part of it. It’s a diverse collection of mountains, lakes, beaches, and towns, and there is always something new to discover every time I visit.

Q: If you could turn any activity into an Olympic sport, what would you have a good chance at winning a medal for? A: Giving animals hugs. I think I would have a serious chance of winning a medal for hugging the most animals within a 10 minute time limit.

Q: When people come to you for help, what do they usually want help with? A: Most people know I’m a nutritionist so I get asked for diet advice a lot, which I don’t mind at all. I enjoy helping people understand what they’re doing right already, and what they could do to improve their diet too.

My Nominations.

Since I haven’t discovered many new blogs that I fit the criteria for the Leibster award since accepting my previous nomination, I only have two to add.

KimiBlack: https://kimiblack.wordpress.com/ 

Thinking out Loud: http://www.thinkingoutloud-sassystyle.com/

11 Questions for my Nominees.

  1. Cats or dogs?
  2. Where did you grow up?
  3. What is your favourite time of year?
  4. What is your favourite genre of music?
  5. What is your favourite film that was adapted from a book?
  6. What was your favourite childhood toy?
  7. Tea or coffee?
  8. What is your worst habit?
  9. What is the kindest thing a stranger has ever done for you?
  10. Who are your role models?
  11. What is your biggest ambition?

Thank you all for your continued support, which has enabled me to grow Diary of a Disabled Person into a triple-award-winning blog!

#MeToo.

TRIGGER WARNING: This post discusses some details of my own experiences with sexual assault. If you feel this will upset or trigger you, you are advised to read this at your own discretion. 

 

There were two major events in the Christmas and New Year Period of 2010 – 2011 that would have a great impact on my future, one of which I have always been open and honest about, that being contracting viral meningitis. There is, however, one other matter that only those close to me are aware of; I am a victim of sexual harassment.

I was a teenager with puberty beginning to truly take hold, and having never had a boyfriend and being mercifully mocked for this, I was relieved when a boy finally asked me out. We did all the normal teenage relationship clichéd things like going to the park, watching movies at the cinema, and going over to each other’s houses for tea. The first time I visited his home his parents were both out at work, and we had the full run of the house to ourselves. I had barely set foot indoors when he asked if I wanted some alcohol, which I politely turned down as I had heard one too many scare stories involving alcohol. He kept asking for the next few hours until his parents came home from work, but I remained resolute, and am glad that I did. I returned home that evening relatively happy.

The Christmas holidays arrived and on one occasion I met him in the park opposite my home. We wandered slowly back to my house and up to my room, with my mum doing housework downstairs, and found that mum had put several games on my bed to keep us entertained. I put the radio on and we listened to music together. We played a few rounds of connect 4. Then he said he was bored.

It started innocently enough, but then he kept trying to force his hand between my legs despite me very firmly telling him not to. He pulled me into the centre of the room, and told me I had to stand still for a whole minute and let him do whatever he wanted to me. I was increasingly uncomfortable but reluctantly complied, and he slipped his hand down my pants. I wriggled away and told him to stop, heading towards the bedroom door, but he blocked my path. Without warning, he pulled my jumper off, and the t-shirt that was under it, leaving me standing in my bra desperately trying to reach my clothes, while he held them away from me and groped me. Then he whispered down my ear that he was going to take my virginity before my fifteenth birthday.

I pushed him suddenly, certainly not enough to hurt him, but in surprise he dropped my clothes which I grabbed and pulled on quickly. He tried to push me back against the wall but being small for my age, I easily ducked under his arm, yanked open my bedroom door, and rushed downstairs. I tried to act as if everything was normal as he followed me down the stairs, telling mum that he’d had a message from his parents asking him to come home. He left in a civilised manner, acting the part of a saint in front of my mother, before setting off for his own home. I locked the door behind him as he left.

Although I was upset at the turn of events, I honestly believed that this was normal behaviour, and that I was simply being a wimp compared to my peers. It wasn’t until I spoke to my mum about it later in the afternoon that I realised something was really wrong. She was horrified, recommended that I break up with him immediately, and perhaps even to contact the police. I only followed the former piece of advice, deciding not to go to the police as it would be my word against his with no real evidence that anything had happened, so the case would simply be ignored as teenage whimsy. I could even have ended up in trouble myself for wasting police time.

Just a few days later my priorities had a very sudden change as I contracted viral meningitis.

A combination of both the harassment and the meningitis left me with minimal confidence and almost no self-esteem. I couldn’t even attempt a relationship until I was at university, and the confidence to actually have sex took even longer to arrive. It didn’t help that within six months of the first incident I had encountered two more, albeit less severe, incidents with two different boys; one kept forcing his arm around my waist and pulling me to him, and the other repeatedly smacked my ass forcefully whenever I bent over to pick something up. I managed to brush both of the guys in question away, and kept my distance.

I hated myself for being so scared; scared that it would happen again, scared that my reluctance to speak to the police would put others in danger, scared that he would tell everyone and I would be called a whore or a pussy, scared that I was facing a severe illness the likes of which I had never seen coming.

Looking back it’s incredible to think that misogyny was so deeply ingrained into our culture that I thought the way I was treated was normal and acceptable, and that I was the one at fault for having a negative reaction. In recent months the prevalence of the #MeToo campaign on social media highlights just how commonplace this issue remains to this day. I only hope that with all the brave people stepping forward to recount their own experiences, and by that I include all gender identities, the severity and range of the issue will finally be realised, and that progress can be made to help stop these traumatic and deeply uncomfortable events from taking place.

#MeToo.

With Great Literature Comes Great Writing.

Every writer has their inspiration, and aside from the whole disability thing I have going on, my main muse as a writer is other writers.

Books have been a part of my life for as long as I can remember; I even had waterproof bath-tub books as a toddler. Before school, I had the entire bottom shelf of my parents’ bookcase filled with my own books, including ones that had been bought, and others that had been passed down through the family. Apparently I used to run to the bookshelf, grab as many books as I could possibly carry, and then plonk myself on my mum’s lap to read for the afternoon. On more than one occasion our beloved cat came to join these reading sessions.

I could actually read before I went to school; not because anybody pressured me to, but because I wanted to. I wrote my name in the sand pit when my parents were viewing potential nurseries for me to attend, which mum hastily erased to avoid any allegations of putting too much pressure on me. She even had to sign a consent form saying that I was allowed to read the books in the nursery, which were meant to be read to us at story-time, after they found me in the corner under a pile books quite happily reading them to myself.

Once I got to school, I got a small bookcase in my bedroom, which was placed at the end of the bed to make it easy to reach. I got into the habit of reading before going to sleep, something I still do sometimes, usually with the cat curled up on my feet.

The books changed as I grew older, but my love for them did not. I soon had favourite authors, first Michael Morpurgo and Jacqueline Wilson, then Charlie Higson, and as an adult Charles Dickens and Jeffrey Archer became firm favourites.

As I aged, I started to find an unexpected joy in writing my own stories, and probably levelled an entire rainforest in filled notepads. I tried to combine the detailed character development of Charles Dickens with the exhilarating action sequences of Jeffrey Archer, and the friendly, easy-to-read style of Michael Morpurgo.

As for the more humorously autobiographical style of Diary of a Disabled Person, I took inspiration from the likes of Gervais Phinn (a school inspector from the Yorkshire dales), James Herriot (the infamous Yorkshire vet), and Jennifer Worth (Call the Midwife). All of these writers presented their work as short, funny, but insightful anecdotes about one aspect of their lives; something which I strive to emulate in my own work.

In all of this, it is of course impossible for me to ignore the influence of my English teachers at school, particularly during my GCSE years. I was universally encouraged to keep writing, and to develop a unique style of my own. They pushed me to be the best that I could be, and was rewarded by receiving the English award for my year group at the end of my exams.

Trophy

(Coincidentally, this trophy is now being used as a weight to stop Tribble the hamster escaping from the top hatch of her cage.)

I’ll be the first one to admit that I don’t believe in concepts like fate and destiny, but I can’t help feeling just a little that perhaps I was born to write.

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.