Disability – Diary of a Disabled Person.

The Sunshine Blogger Award.

The Sunshine Blogger Award recognises positivity and creativity in a blogger’s work, and much like the Leibster Award and Lovely Blog Award, is awarded to one writer by another. In this instance I was nominated by the blog My Fitness Journey with Fibro, which can be found here:

https://myfitnessjourneywithfibro.wordpress.com/

In order to accept the nomination you must first quickly explain what the Sunshine Blogger Award is and display the logo, answer 11 questions as asked by the person doing the nominating, nominate some more blogs deserving of the award, and ask these nominees a further 11 questions.

sunshine-blogger

Questions from My Fitness Journey with Fibro:

What is your ultimate dream in life? From a very young age the idea of being an author has appealed to me; I would love to become the author of a published book, and in particular I would love to have physical books published as well as eBook copies being made. Something about the idea of seeing my name of the spine of a book fills me with excitement, not least because I believe it to be an achievable dream.

How do you stay as positive as possible? Staying positive can be a nightmare, particularly during flare-ups of either the M.E or the depression. However, I have a few things that I rely upon to help maintain a positive attitude. First and foremost I find that writing helps me to think clearly about a situation and to process my emotions, but I frequently also use music as a coping mechanism for dealing with low moods. I also have personal favourite video games that I return to time and time again, as these provide an immersive and reliable distraction. Sometimes, even with all these in place, I still feel depressed. It’s important to recognise that being negative is a healthy response in many situations and shouldn’t ignored or overlooked for the sake of pure optimism.

If you could have one superpower what would it be? I would like to be invisible, mainly because I’m a nosy person who would want to know what people are saying about me behind my back!

What brings you the most joy daily? My fiancé, Jarred. I wake up in a morning and he brings me breakfast in bed before heading out to work, he comes from work and helps me sort out the evening meal. We talk about how our days have been, things we’ve seen on social media, and watch some TV together. We make each other laugh, even when we’re absolutely shattered. I don’t know how I would cope without his support.

What would you like to achieve with your blog? I am currently working on converting my blog into a book, and if possible I would love to have the book printed as well as published online. It’s a great way of reaching out to people and educating them about disability, teaching people not to pre-judge.

What have been your greatest moments of this year? Jarred’s graduation from university was the event of the summer, but I think getting married on 27^th December this year will probably take the top spot!

What would your top 3 travel destinations be if you could go anywhere and why? I would like to visit Holland; everyone who has spent significant amounts of time in Holland always sing it’s praises, particularly around how polite everyone is. Plus, because bicycles are so commonplace in Amsterdam, I imagine the accessibility is decent. I would also like to visit Japan, particularly Tokyo, as their culture is so vastly different from our own that a visit would make for an interesting learning experience. I would also like to explore rural Italy for the sole purpose of consuming good food.

What is one song that you really connect deeply with? There are so many out there that I resonate with, but I think Green Day’s Still Breathing from their 2016 studio album Revolution Radio has to be the one I relate to most.

If you wrote an autobiography, what would it be called? Diary of a Disabled Person: The Lengthy Edition.

What would the picture on the front of your autobiography be? My personal favourite of all the photos ever taken of me; drinking hot mead at the German Christmas market that takes place in Leeds every year.

Christmas Market

Do you know how truly wonderful you are? This question has me stuck. If I say no I sound ungrateful, but if I say yes I sound arrogant. Being a blogger has massively helped increase my self-esteem, as I couldn’t ignore all the likes, comments, messages, and positive feedback I get from regular and new fans alike. I think I can confidently say that I know I have skills and qualities that make me unique, but I doubt I’ll ever be able to fully comprehend being described as “truly wonderful”.

My Nominees:

Seeing M.E In Reality: https://seeingmeinreality.com/

The Disability Diaries: https://disabilitydiaries.com/

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

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

Wheelescapades: https://wheelescapades.com/

Being Aunt Debbie: https://beingauntdebbie.com/

Questions for My Nominees:

What drove you to start your blog?
What drives you to keep writing and maintain your blog?
What insignificant thing annoys you the most?
What is your favourite sport (to watch or play)?
What is your favourite meal?
Where did you live as a child?
What was/is your favourite school subject?
What is your favourite Disney film?
Who is your favourite Disney character?
What has been the highlight of the past month for you?
What are you most looking forward to in the next month?

Astounding as this may seem, this marks the fourth award I have picked up since the start of the year, and I am delighted to say that I will be accepting a fifth award in a couple of weeks!

Redundant.

So I just got made redundant. Technically I’m still employed by the local NHS trust, but all the shifts are either nursing or in inaccessible offices, so I’m going to have to look for another job.

I feel like a total moo-moo saying this, but if you can donate anything at all it would be very much appreciated. I will be spending my newly gained free time writing content and job-hunting.

Thank you for your continued support.

4 Awards; Oh Wait, Never Mind – Make That 5!!!

It appears to be some kind of blogger award season, because in the past week I received to nominations for different awards, but two separate bloggers.

The first nomination came from My Fitness Journey with Fibro (https://myfitnessjourneywithfibro.wordpress.com/), and is the Sunshine Blogger Award. This recognises positivity and creativity in a blog, and I will accept it this weekend.

The second nomination came from Being Aunt Debbie (https://beingauntdebbie.com/), and is the Blogger Recognition Award. This award highlights high-quality, well-written blogs from across the internet, and I will accept this one in a couple of weeks. I want to keep my content varied; I wouldn’t want you getting bored of acceptance speeches!

I offer a big thank you to both of the above; keep an eye out for the upcoming posts!

Leeds Pride 2018.

After the disappearance of Tribble on Saturday I didn’t particularly feel like celebrating, but I managed to persuade myself that watching the Pride parade go past would be worth it. Indeed it was, and I was glad I went. Below are the many photo’s and videos taken over the hour-long procession!

First of all, here is a video of the West Yorkshire police marching band:

Here are some of the best costumes from the parade; a Harley Quinn bear, a furry, a a blue Mohawk wig, a gay storm-trooper, a pink T-rex, and a carnival dancer on stilts with rainbow butterfly wings.

The spectrum of colours was visible throughout the parade in many forms; on balloons, flags, umbrellas, confetti, hats, and garlands.

It was really great to see so many children involved with the celebration, helping to normalise LGBTQ+ people, which should reduce discrimination in the future.

The fire brigade and police were also involved in the parade, including one fireman leaning out of the window of a real firetruck, with a bubble-gun.

As a bisexual it was great to see bisexuals have their own segment of the parade.

Here are some of the best signs from the parade, including “Asexuals pirates aren’t interested in your booty”, and “Ey up, we’re not in Kansas anymore”.

As a spectator I made sure to wear appropriate clothing; black sequin-covered leggings, a t-shirt with “This is what awesome looks like” written on it, and red, glittery cat ears.

My favourite part of the parade, though, had to be all the very good doggo’s supporting LGBTQ+ rights!

To close, enjoy another video of some dancers that came towards the end of the parade:

I’m already excited for next year!

Disability Doesn’t Mean I Can’t.

On a recent visit to the GP I discovered that the lift into the surgery now needs someone to close the door behind me once I’m in the lift. This was a rather unfortunate discovery as I was visiting the doctor alone, as I usually do. After waiting in the lobby area for a few minutes anxiously watching the clock ticking ever closer towards my appointment, a receptionist appeared at the top of the stairs and came to my rescue. While I did say thank you for the help I received, I also challenged her about this turn of events. Her response was that I should have someone with me next time or leave enough time for someone to pass by; the idea that I might want to be independent like every other adult using that surgery was incomprehensible.

This is not an isolated case by any measure; many places have small, rickety platform lifts that require a specific key held by only one member of staff that you can’t contact because you’re at the bottom of the steps while they’re in an office upstairs. Similarly whenever the accessible entrance to work is either broken or locked I have to wait for the receptionist behind the desk to finish gossiping with her colleague, search for a key they never have to hand, and fold back the revolving door allowing me to enter my own workplace. This process then has to be repeated on the way out; I cannot enter and leave the building at my leisure as literally every other person can. Given that the revolving door is always unlocked with a steady stream of people entering and exiting the building, I asked that it be left folded back when the accessible entrance wasn’t in use. Apparently, this was a security risk despite the fact that this would save everyone a lot of time and effort. I was also told that being the only wheelchair user in the building essentially made folding back the door an inconvenience.

It seems like wherever I go the idea that I want to be independent is shocking and impossible. While I always appreciate people asking me if I need help, I often encounter people who just barge in to start helping without asking first. On one occasion this even lead to a scalding hot coffee getting poured directly into my lap which was incredibly painful and somehow it was my fault for trying to be independent. In other cases I have been asked if I need help and when I have politely declined, the “help” has been provided anyway. What I want or need doesn’t matter; if someone judges that I need help they’re opinion overrides my own. In addition I have received torrents of verbal abuse for trying to be independent, being called arrogant, ungrateful, and much more besides.

This isn’t a new problem. For the past few millennia women have had to fight relentlessly to be permitted to do things independently of men, and now disabled people face exactly the same problem. Sometimes I don’t know if my desire to be independent is shocking because I am a woman, use a wheelchair, or a combination of the two.

Independence is not something that should only be encouraged in able-bodied men. The desire to be independent is not a sin; it should be encouraged. Allow me to fail. Allow me to get hurt. Allow me to get up (figuratively at least) and do it all over again until I get it right. Look at the top of this page. Look at my arm. “Disability doesn’t mean I can’t”.

Tribble has gone AWOL.

This morning Jarred went through to the living room to discover that Tribble had learnt how to undo her wheel, and had escaped overnight. I had heard a small clatter as we were going to bed but thought it had come from outside; obviously I was wrong.

We spent a long time searching the entire flat for her, but to no avail. The only place she could have gone was down the side of the washing machine and through the vents behind it, which we have no way of reaching.

As intelligent as Tribble is, without shelter and clean water in this heat, with multiple predators around, four stories off the ground we have very little hope that she has survived the night. If she has, we cannot imagine how she would get back to us. We are both utterly devastated and just hope that whatever has happened, she hasn’t suffered. Most of all, I wish I had been given the chance to say goodbye.

Hold paws

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.

Aira Force.gif

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.