Finding a job – what happened next? – My Family Our Needs

Here’s a little mid-week treat for you all; what’s it like to be disabled in employment?

This ties in perfectly with next week’s blog post, which will have more of a focus on what my day-to-day working life is like.

The Flawesome Award.

A few days ago I was kindly nominated by The Invisible Vision Project for the Flawesome Award, an award created by Sophia Ismaa, to be awarded to bloggers by bloggers who have overcome their personal flaws, and used them for good in their writing. I was incredibly flattered by the nomination, not least because this now makes me a 6-time award-winning blogger after only 2 years of Diary of a Disabled Person.

In order to accept the reward, you are required to acknowledge the award’s creator, Sophia Ismaa, and also the blog who nominated you, in my case the Invisible Vision Project. You must then list three flaws and demonstrate how you turned them into strengths, before nominating another 10 bloggers for the award.

It took many hours of intense thinking to come up with three personal flaws, as they are so few and far between. Nevertheless, I persisted for the sake of my art, and managed to come up with the following:

I’m reluctant to compromise.

There is an old idiom that says “You can tell a Yorkshireman, but you can’t tell him much”. Now I’m no man but I’m very Yorkshire, and while I tend to dislike stereotypes, this is one which cannot be denied. As my parents and now my husband will tell you; I’m really fricking stubborn.

This little quirk has caused much trouble in the past, predominantly when trying to forge friendships with peers and colleagues, and also when it comes to knowing when to relent and be grateful for what I had already achieved.

However, there are also plenty of occasions when compromise isn’t an option. Accessibility is one such example. There is no halfway-house with accessibility; either something is accessible or it is not. This extends beyond simply having ramps, lifts, toilets, & hearing loops etc., but actually having them available for use, not blocked, not impeded, and not hidden behind a staircase that someone else must climb to get the assistance you need. Something as simple as blocking an access route or forgetting to put out the ramp is all that is needed to render something inaccessible. I’ve tried being nice with the people who do this, but my protests fall on deaf ears. It’s only when I put my wheels down and refuse to compromise that I am listened to, and I know that this is the same for many other disabled people.

I don’t take things as seriously as I should.

If something goes wrong my instinct is to laugh about it. This is fine when, say, a pigeon flies into the window and you spill your drink, but not so much when something goes really wrong. It frustrates those around me no end when I simply don’t recognise certain situations are wholly inappropriate for a joke. It can make topics such as moving house or changing jobs an absolute nightmare for anyone working with me, as instead of getting the paperwork done, I’m sat in the corner mocking the situation.

Fortunately, I have been able to put my ability to laugh at anything and everything to good use. I have only coped with my long-term health issues because I have been able to laugh at them, including when I needed emergency surgery to remove my gall bladder (although laughing really did hurt then). Similarly, I have used it to educate others about life with disability, and to normalise and humanise disability to make it easier for others to cope with. There’s nothing like making a corny pun about the wheelchair to set a stranger at ease, meaning they can focus on the conversation we’re having, instead of panicking about what they should say to me.

I don’t like to let my feelings show in public.

The general public’s reaction to seeing a wheelchair user out and about is to ignore me so hard that I know they’ve noticed me, and that they’re simply pretending I don’t exist to avoid an awkward interaction. Sometimes people will physically push past you while still pretending they hadn’t noticed me, despite the fact that deciding to push past is a decision made based upon the fact that they’ve seen me. On other occasions I get comments from strangers, most commonly about how fast “it” goes, and whether I’ve got a licence to drive it. From time to time, I simply get blank stares.

Perhaps though, if I showed my displeasure at such occurrences, the public would take note. Perhaps they’d realise that their words and actions are upsetting, and try to make changes to their behaviour around disabled people. Perhaps they would take notice of all that disabled people report on social media, and to the news.

This characteristic, though, serves to protect me. If I stopped to challenge everyone who made my life more difficult than it already is, I would never get anywhere or do anything. I would also be exposing myself to torrents of verbal abuse, and even on occasions threats of physical violence. Keeping a stony face, helped out by headphones that can block out the comments, has allowed me to go about my daily business and live my life.

***

Once again, I’d like to thank The Invisible Vision Project for their kind nomination, and without further ado, here are my nominations:

Seeing ME In Reality.

The Disability Diaries.

Wheelescapades.

The Life Quadraplegic.

A Backpack, A Chair, and A Beard.

My Fitness Journey with Fibro.

KimiBlack.

Thinking Out Loud.

Being Aunt Debbie.

Cane Adventures.

My congratulations to you all.

Nomination: The Flawesome Award.

I’m incredibly proud to announce that Diary of a Disabled Person has been nominated for a sixth award; the Flawesome Award!

I hope to accept the award on Sunday, provided I have time to write the acceptance post by then.

Until then, many thanks to The Invisible Vision Project for their kind nomination.

Image description: Award Number 6: The Flawesome Award! With many thanks to the Invisible Vision Project for their kind nomination written in blue text in a white box, with a blue shimmering border.

Take the Shot.

If there had been a vaccination for the strain of meningitis I contracted in 2011, chances are I would never have developed chronic fatigue syndrome. Luckily for you, I fell ill and then decided to whinge about it, calling it entertainment.

Vaccinations are a contentious topic in the court of public opinion all thanks to a scientist who wanted some extra pocket money. The scientific community are very familiar with publication bias; papers that show no correlation or have a null hypothesis are far less likely to be published. After all, medical journals are still a commercial enterprise and need to make money, and no one wants to buy a book where nothing happens. So the scientist forged some data to give the false conclusion that the MMR vaccine resulted in autism, and the world reacted with its usual level-headed reasoning abilities. Even if this were the case, measles, mumps, or rubella have deadly consequences, whereas autism is at least manageable with the right support despite its difficulty.

However, there is a debate surrounding vaccinations that is much closer to home for me, and that is the association between CFS and vaccinations. Vaccinations make people who already have CFS feel horrendous, which I can confirm from personal experience. I get a flu jab every year, and for the next 48 hours or so I will feel like Jupiter’s gravity is emanating from my chest and I also have an elephant sat on me. However, developing the actual flu would be significantly worse, leaving me incapacitated for several weeks at best, or at worst, dead. Therefore I consider the flu jab worth it.

The real question is whether CFS can be triggered following a vaccination. Having scoured the internet the vast majority of scientific evidence that I can access suggests that there is no correlation between the two, and given that CFS is often triggered by a severe viral infection, vaccinations may even offer some protection against CFS. However, there are also abundant case reports of people developing CFS out of the blue, and it has been noted that in these cases, a vaccination has usually been given a short time before.

Given that we know so little about CFS, it’s causes, and it’s biochemistry, there is no definitive way for researchers to establish a connection between vaccinations and CFS. For all we know there could be undiscovered associations with air pollution, food poisoning, or physical injuries. Vaccinations are constantly in the media and the forefront of our minds, making them the first conclusion that is all too easy to jump to. I remain extremely sceptical, however, as having studied the biochemistry of vaccinations as part of my degree, I simply cannot align inoculations and diseases like CFS.

It is also worth mentioning at this point that CFS, while a brutal disease that can even prove fatal, places far less immediate danger on the patient than meningitis, measles, mumps, rubella, poliomyelitis, and even influenza. Sometimes in life we have to balance the risks, and take the lesser of two evils. Take the shot.

Diary of a Disabled Person: 2 Years On!

In a couple of days this blog will have been a part of my life for two whole years. Two. Fricking. Years. For some reason I have been unable to fathom, people keep coming back for more, and who am I to deny my readers what they want? Except for being, you know, the author.

A year ago I did a recap of all that had happened in Diary of a Disabled Person’s initial year (https://diaryofadisabledperson.blog/2018/01/14/diary-of-a-disabled-person-one-year-on/), ending with a whopping 68,000 views, 80 followers, and 400 Facebook page followers. Now it’s time to reflect on what’s happened since then.

My total view count is nearing 80,000 views, which admittedly means that my blog has been viewed far less this year. This is partly due to my issues with Cracked.com and the fact that I haven’t published anything with them for a long time, but I fear changes to net neutrality may also have had something to do with this. However, while my view count is lower my WordPress following has shot up, reaching 200 just a few days ago. Similarly, the fan base I have accrued is incredibly loyal, never failing to show their support for me. This is reflected in particular in the 5 awards my blog has won in the past year.

I also took time to purchase a web domain and give my website a makeover, using a template to keep it professional-looking, while improving menus, accessibility, and friendliness for phone and tablet use. I created an audio page and went through the entire backlog of posts, making a recording of myself reading them aloud for those who prefer to listen rather than read.

A burst of inspiration also led me to start writing short stories which featured disabled protagonists in farcical scenarios, predominantly to entertain and make people laugh, but also to raise awareness of the issues disabled people can face on a day-to-day basis. These turned out to be incredibly popular, and over the course of the year I published 13 of them.

On social media my Facebook (@diaryofadisabledperson) page has seen some growth, and I set up an associated group as a place to share polls and news articles relevant to disability. I also set up an Instagram (@diaryofadisabledperson) account, which mostly consists of pictures from local wrestling shows and various selfies.

However, by far my biggest success on social media has been setting up a Twitter account (@WheelsofSteer). I am shamelessly explicit with my language, and frequently share anecdotes of both good and bad things happening to me that make people laugh and think. I’ve even taken to adapting famous song lyrics to make them about disability instead. Clearly my sarcastic comments resonate with the Twitter community as I am fast approaching 4,000 followers.

Looking forwards there is still plenty of room for Diary of a Disabled Person to grow. I am working on turning my blog into a book, a complex and time-consuming process but one that will be extremely rewarding. I can also confirm that a further 6 short stories have been written and these will be released soon. I am also thinking of starting some vlogging on the side, something which many of you have requested, as I have found some video editing software that would allow me to do this.

Let’s hope that I have as much positive news to share with you again in a year’s time, when I look back on the third year of Diary of a Disabled Person.

Image description: poster for series 3 of my short stories reading "Diary of a Disabled Person. Coming soon... Short Stories: Series 3. A Zombie Apocalypse, a pirate ship, a wrestling ring, & more..."

Happy Wife = Happy Life.

2018 was a great year for weddings; the royal family alone used tax-payers money to pay for two extravagant weddings, and several wrestlers used their own, hard-earned money to pay for theirs. The biggest wedding of the year however, didn’t happen until 27th December and was well worth the wait.

Jarred proposed to me at the most romantic time imaginable; the interval of a wrestling show (https://diaryofadisabledperson.blog/2017/06/08/special-edition-the-perfect-surprise/). I said yes (duh), and we began searching for venues.

At first, we looked at a local gastropub we had visited once or twice, but even after several emails we never heard back from them. The second venue we reached out to was the Royal Armouries, and they responded within 24 hours. We visited the venue, were shown the rooms for the ceremony and reception, and decided on the spot that it was what we wanted. We booked it for 27th December 2018, relaxed due the extensive period we had to organise everything.

Those 18 months seemed to fly past at record speed. We had to book a registrar from the council, buy all the clothes and accessories we would need (dresses, shoes, hair pieces, rings, matching jackets for the wedding party etc.), order a bouquet, choose a cake, choose our music, send out invites, choose a suitable menu, choose our preferred décor, and create a seating plan for the reception. Fortunately, the coordinators were experienced and provided a great service, making the ordeal a lot less stressful than it could have been.

The night before the wedding my bridesmaid and her partner, Wiki and Nathan, crashed on a double air-bed in the living room, which once inflated had to be crawled across to get from one side of the room to the other. Jarred spent the night in a hotel so that his best man could help him avoid a wedding-stential crisis in the morning. My friends cooked and we played video games before having a relatively early night.

In the morning we didn’t have to wait long for the stylist, my bridesmaids’ sister, to arrive. Wiki was the first to get the makeover treatment, and then it was my turn. My thick, frizzy curls are a stylist’s worst nightmare, and it took over an hour just to pin up my hair. We sent Nathan out to McDonalds for fries, which I ate as my makeup was applied, being told when I could and couldn’t start chewing again. Wiki’s sister than helped us into our dresses and shoes, and after several hours of preparation, we were finally ready. Nathan had taken all of ten minutes to get ready.

I plucked my bouquet from the vase and we made our way downstairs to wait for our taxi, which for the first time in my entire life, was early. We arrived at the armouries half an hour before the ceremony was due to begin, so I mingled with family, friends, and soon-to-be-family in the foyer before being led to the waiting area behind the ceremony hall. There I waited with Batman and Robin, who had honoured me with their presence, my dad, and my bridesmaid.

Image description: me & my bridesmaid sat with my two page boys, who were dressed as Batman & Robin.

A few minutes later the doors opened, and I made my way slowly down the aisle to Welcome to the Black Parade, because I’ve never really grown out of my emo phase. Jarred stood at the head of the aisle trying not to look nervous, next to my decorated walking frame so that I could sit down after the 15 m marathon I had just completed.

Image description: my royal blue rollator covered in silver & maroon ribbons.

The ceremony opened with a reading by Jarred’s brother, and then after no one had expressed their objections, it was time for the vows. Jarred’s teenage brother provided the rings, and as the ring was slipped onto my finger, I noticed that Jarred was trembling. I wasn’t sure if it was out of fear or excitement, and that is still the case.

Next, I made the same vows to Jarred, thankfully minus the “in sickness and in health” part which in my case seems a bit redundant. As I slipped the ring onto his finger, I had to bite my lip to stop myself from laughing, having just noticed the Darth Vader plaster he was sporting on his finger after cutting his hand on a broken wine glass a few days before.

With that the ceremony closed, and it was time to sign the marriage certificate. This turned into an opportunity for photographs with the bridesmaid and best man, the entire wedding party, and with our parents. It was at this point I realised that I technically have two mothers-in-law, as Jarred’s parents had divorced and his father remarried some time later. Fortunately, both mothers-in-law are nice.

The next hour was filled with the drinks reception, which included taking a few photographs by the large Christmas tree and also the war elephant in one of the museum’s many galleries, as well as mingling with our guests. This was my first meeting with many guests from Jarred’s family as they live so far away from us, and the time quickly passed as I got to know them.

We entered the reception room a little before 6 pm, and I got a good look at the little gothic cupcakes before undertaking my first ever livestream. The livestream was short and sweet, but I put my phone in my bag afterwards as a flood of notifications poured in.

Once I’d ended the livestream, we had the speeches, where my father recounted a rather embarrassing incident involving a hedgehog sanctuary, and asking a member of staff what to do with a dead hedgehog (I had found one the week before on the way to school). Compared to other anecdotes from my childhood this was fairly tame, so I don’t mind to much, even if I am now being spammed with hedgehog emojis from my friends.

The best man’s speech was just as good, noting a theme of violence in our choice of proposal and wedding venues, and stating the statistic that the person most likely to murder you was your wife/husband. Jarred’s speech also discussed wrestling having messaged the wrestling company at who’s show he had proposed, to which they had responded “Didn’t get an invite though, did we?”. They are still adamant that we should have wed in a wrestling ring, as we all know how famously smoothly those marriages go.

The meal followed the speeches, and having dined on carrot and ginger soup, roasted pepper risotto, and strawberry cheesecake I was almost too full to move. Unfortunately, I had to move for a little tradition we call the “first dance”, and we wobbled unsteadily around the floor to The Only Exception by Paramore.

Shortly after the first dance we handed out the cupcakes, and the DJ began to play an excellent set list of rock tracks, from classics like Bon Jovi and Guns ‘n’ Roses, to mid-00’s punk like My Chemical Romance and Green Day.

As the evening progressed, I mingled with guests, spending a great deal of time discussing wrestling with one of Jarred’s cousins in particular. Slowly guests began to drift off until eventually only me, Wiki, Nathan, and Jarred remained. Jarred called a taxi and by midnight we were home.

It took Jarred 40 minutes to unpin my hair, removing a seemingly endless supply of bobby pins and bobbles while I tried not to laugh. Make-up removal required several wads of cotton wool, particularly as the very impressive long-lasting lipstick lived up to its name. It was almost 1 am by the time I crashed into bed, falling asleep almost immediately. Other typical wedding night activities would simply have to wait.

Now we just have the rest of our lives to go…