I Am Your Father: by Boris.

Another guest writer has been invited to contribute to the blog. You may have guessed how I am related to Mini from the title, but I will leave it for you to discuss my chosen pen name with her. She has asked me to try and write about the experiences of a parent of a disabled child.

Mini started out with eye problems. All unremarkable really, apart from the odd incident running into 800-year-old refectory tables and bending spectacle frames at the after-school football club.

The bolt from the blue happened when she was at secondary school; I remember being at work when I got a phone call.

“She is not well, has a severe headache, and can’t stand bright light. The people on the NHS help line think it may be Meningitis”.

At the time my workplace was forty minutes’ drive from home, along one of the most congested routes in the North of England. The recommendation was to get some Ibuprofen for her, so her Mum had to leave her alone to get the medicine. One fraught work day later I was back at home looking after the pair of them.

It did settle down and Mini seemed to be on the road to recovery. During the following summer we had a family holiday in the Lake District, and although feeling tired she did manage some walks. We have pictures of her at Aira Force, a waterfall near Ullswater.

Image description: stood next to my dad at the foot of Aira Force in the Lake District. I'm wearing pink anorak and have bangs. Dad is wearing a blue coat and has hair.

Then came the Graded Exercise Therapy. We should replace “that’s when the wheels came off” with “that’s when the wheels were attached”. Suddenly our daughter needed more help. Simple things like an opticians appointment meant a pushing a wheelchair up the steepest shopping street in the town. To manage life we had to be highly organised; every task we had taken for granted now meant a military style operation in planning.

There were also endless wrangles with officials. One was trying to get school transport arranged; we were given the opportunity to put a case to the panel, only to be told that they had already decided we couldn’t have help and there was no chance of appeal. Another was with the special care team at the school. Others Mini has already written about in her blog.

We got there though. It has been a bit of a rollercoaster ride (especially in a wheelchair to the opticians). Mini is now on the far side of education, and is planning her future with Jarred. Both her family and Jarred’s family are behind her, although we won’t have to push now it is powered wheelchair.

Participants Needed!

Sarah Hilton is a student at the University of Derby studying spa management, and for her dissertation she is studying barriers that make visiting a spa difficult for the disabled. Here’s all the information you need in her own words:

“I am looking for participants for my dissertation on the experiences of wheelchair users when they visit a spa, trying to identify the various barriers encountered – information, social, environmental – for my spa management degree at the University of Derby. I have 13 questions which cover the entire journey through the spa from booking to departure, and none of them are personal or go into great detail.

I decided to choose this particular dissertation subject as I have a friend who has M.E and uses a wheelchair daily. After accompanying her around London, in and out of restaurants etc and witnessing the difficulties she faces, I decided to apply this to my degree and investigate what barriers wheelchair users face in spas, to try and make a difference. The findings will be presented to the World Summit for Accessible Tourism (Destinations for All 2018) in Brussels in October, so it is a great opportunity to get your experiences and voice heard on a larger scale.”

For more information on how to get involved (via Skype or a messenger app as preferred), please contact Sarah on s.hilton3@unimail.derby.ac.uk

Disability Trumps Ableism.

In the middle of July Donald Trump graced the UK with a presidential visit and the British public reacted the only way they could; politely asking him to f**k off. A crowd of literal thousands marched across London in an organised protest, complete with the now infamous “baby blimp” floating above the crowd, and protests were arranged up and down the country for those who couldn’t make it to London. Leeds was no different, and on the Friday evening of his visit I took to the streets with a few hundred like-minded individuals.

We were not protesting Trump himself, who was democratically elected (admittedly under dubious circumstances) and as president of the United States has the right to visit the UK. We were protesting everything he stood for; racism, Islamophobia, homophobia, transphobia, sexism, ableism, and his irrational legislation surrounding access to abortion, the right to discriminate, the separation of immigrating families, and gun violence. As such there were representatives of just about every field who are violated by these problems, together forming an immense crowd that quite literally brought the city centre to a halt.

The protest began in a square outside a shopping mall where everyone gathered, took photos of the best signs, and shared their reasons for being there. When asked what I “stood for” I replied that I didn’t stand for much and after a moment’s hesitation the crowd understood my little joke. I then went on to remind the crowd of how, during his election campaign, Trump had mocked a disabled journalist for being disabled, something which I still feel has been too easily forgotten.

About an hour after gathering in the square we set off on our march (or in this case, roll) around the city centre, escorted by the police to control traffic and prevent any violence. A samba band played as we marched, all of us chanting and holding our signs proudly. People watched us from roof-top terraces and bus windows, and the cameras were inescapable. The atmosphere was not one of anger or disrespect, even from the commuters who had to wait for us to pass by, but one of peaceful solidarity. There was not a hint of violence anywhere. In fact, the only person seemingly opposed to us was a lone, white man perched precariously on a flower pot, holding a sign which called us sheep for following the crowd and declared how we must repent to God for our sins. Even at this provocation he got nothing more than a few small insults.

Normally I have difficulty moving in crowds as people tend to step over the front of my wheelchair or simply stop dead ahead of me so that I have to go around them, which means waiting for a gap in the crowd. Yet during the entire march I had not one person impede my path, or indeed treat me any differently than the other protesters. I felt almost as safe and respected as I do at my beloved wrestling shows.

At the end of the march I pulled away from the crowd to go home, clutching my hand-made sign as it began to disintegrate. What exactly did that sign say? “Disability doesn’t mean I can’t protest discrimination”.

Trump Protest

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 on 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 still 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!

Image description: about to head out to the local Trump protest. I'm sat in my wheelchair wearing black and white chequered converse & black skinny jeans. I'm holding my sign on my knee which reads "Disability doesn't mean I can't fight discrimination".

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.

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!