Wheels of Steer.

Being out & about in a wheelchair is not without its challenges. I believe that pavement parkers have a special place reserved for them in hell (which they probably won’t use anyway), & I’ve had more fights over blocked access routes & misused facilities than I could possibly count, even if I took off my shoes & socks. However, for what it’s worth, I actually enjoy riding around in my wheelchair.

First off, it’s significantly less painful than trying to walk everywhere, even when cobbles are involved. This means that I don’t always feel like I’ve stuck my leg in a wood-chipper, not that I’ve ever actually done that, & I can also go much further & faster than if I didn’t have a wheelchair.

I may also be the only person in existence who actually enjoys their commute. Admittedly I don’t have to use public transport or try to find car parking, which seems to be what most of my colleagues find hardest, & work is only 20 minutes away from home. However, perhaps the biggest reason for enjoying my commute is my love of music. I’m more than content to ride along with my headphones on, low enough that I can still hear what is going on around me so I don’t get mangled by a car, but loud enough to block out people. I’m in my own little bubble of existence, & with that I am content.

In fact, here’s an actual image of me going to work:

Dizzy the orange cement mixer from Bob the Builder, with headphones on.
For context: this is Dizzy the cement mixer from a British children’s TV show called Bob the Builder. It was my favourite show, & Dizzy was my favourite character.

People see the wheelchair & immediately pity me, thinking I must me miserable that I have to use a one. What they don’t realise is that without a wheelchair, I would be stuck at home, bored & still in pain, imprisoned by my illness. The wheelchair is my liberation from that. Of course, it would be even better if people weren’t ableist a-holes, but I guess you can’t win them all.

The look of pity is not restricted to when I am alone, either, & I often encounter it when I’m out with friends or family. Better yet, when both my mum & I decide to use our wheelchairs simultaneously (not the same wheelchair, I might add) we get to form the greatest force for generating pity in the universe; a wheelchair convoy.

These pitiful expressions used to annoy me, & in truth they still do, albeit to a lesser extent. However, on some level they also amuse me, especially on my commute. There they are dressed in uncomfortable clothes, marching into the office with a look of gloom on their face, pitying me, the woman riding to work in jeans, listening to music without even a touch of the Monday blues. I know that I stand out (pun intended) from the commuter crowd, but I believe that this has less to do with the wheelchair, & more to do with the fact that journeying around just isn’t a burden for me.

That is except, of course, for when I encounter pavement parkers. They can just piss off.

DiceRoller.

I’m just gonna say it: I’m a big nerd on wheels. I love Star Wars, Star Trek, Marvel, DC, video games, board games, & table-top role-playing games, & I obstinately refuse to grow up.

I started table-top gaming about 18 months ago, & I play different versions of the same character in every game I play; a medic with ranged combat skills. Given my education & work experience, I can pad out the medical parts with real medical jargon, which my friends seem to enjoy as it adds to the immersion of the experience.

I’d actually tried the latest-but-one edition of Pathfinder some time before getting into gaming properly, but found the immense ruleset overwhelming & it put me off. Finally, I managed to regain the confidence to go for something a little simpler; Warhammer 40k Wrath & Glory. It was in this campaign that I created my favourite character to date; Aethena, battle-sister hospitalier (female medic with a rifle), who used a powered wheelchair as part of her armour, with a canid (dog) companion. I loved it.

Once I was accustomed to some of the universal concepts of table-top gaming such as turn-based combat, & the fact that instead of being competitive it was cooperative, eliminating some of the more toxic elements associated with nerd culture, I was willing to explore the medium further. The next game I tried was an obscure system called FATE that worked on similar principles to Warhammer 40k W&G, but had no pre-set world, instead allowing you to create one & apply the game rules to it.

As that campaign drew to a close, I picked up the classic Dungeons & Dragons for the first time, meeting weekly at one of my favourite venues in the city after work. I chose to play a Druid almost entirely for the connections to the animal world, called Omra, & began to get really invested in the more complex ruleset (although this still doesn’t come close to Pathfinder).

Alongside this, I returned to Warhammer, this time in Warhammer Fantasy Role Play. Given the older, medieval-style setting, it would have been unrealistic to have a female medic, therefore my character simply pretended to be a man by doing cliché “manly” things to get through medical school. This is a character I will be returning to in future when I play Warhammer Age of Sigmar, as at the inevitable destruction of the world (spoiler alert), I was conveniently chosen as one of the souls worth saving & putting into another body in the future.

Currently, I am playing my favourite of all the games I have tried; Call of Cthulhu. It’s a careful balance between mysterious exploration & pure chaos, & I love it.

Each of the campaigns I have played has had it’s classic moments, from me using my healing skill to torture someone for information (who said I was the good guy?), to booting a sheep out of a window while yelling This Is Yorkshire (which only gets weirder with context). Still, I have avoided the most embarrassing of all the memorable moments, which was when our poor wizard bled from his eyes & ears, then proceeding to…defecate…in his trousers. We like to bring this up approximately fourteen times per session.

You might be wondering why I’m talking about this on a blog about disability, aside from playing a character who used a wheelchair in Warhammer 40k. Simply put, role-playing is as accessible an experience as you want it to be. You choose the venue. You choose the rule-set. You choose how to display character information. It’s highly adaptable, meaning just about any disability imaginable can be adapted to.

We have this notion that role-playing games are predominantly overrun with white guys who are so nice they can never understand why every woman they ever meet doesn’t want to sleep with them. I’d be lying if I said there wasn’t any toxicity in table-top gaming, but there are also more than enough people willing to include all races, genders, sexualities, & disabilities to make it worth it.

Through my role-playing games I have developed strong friendships. There is something about exploring an imaginary map together, fighting enemies alongside each other, & healing others when they’re down that brings people together. It’s not an experience to everyone’s tastes & that’s understandable, but if you’ve been thinking about trying it out, there’s sure to be a role-playing group somewhere in the local area. Just, don’t start with Pathfinder.

Trundlebirds Are Go (A Thunderbirds Parody); by Boris (my dad).

Recently I was trying to coerce my dad (Mini’s grandpa) into the use of a rollator. In October he had a fall, lost his balance, and broke his collar bone when he landed heavily on his left side. My mum was asking about walking aids, as one of their neighbours has a mobility scooter. I pointed out that, with them having just moved to a new house without a garage, means of storage would be limited. I also had to remind them that they need to be able to get any equipment into their car, something which I have much painful experience of thanks to ferrying my delightful daughter to and from university.

This started me thinking, something which Mini can confirm as a sign of imminent danger. Transporting a disabled person around takes a lot of planning. Suddenly I saw in my mind’s eye an episode of Thunderbirds. Picture, if you will, plenty of specialist equipment, needing a military level of planning for the task at hand, complete with a secret Island base to store and prepare the equipment.

Welcome then to White Rose Rescue (Edit: the White Rose is the symbol of Yorkshire, stemming (get it, stemming!) from the War of the Roses, where Lancashire (red roses) and Yorkshire (white roses) poked each other with swords for a bit. The hostilities continue to this day), otherwise known as Trundlebirds. This is run by the T’Racy family (Yorkshire joke), and has equipment suitable for everyday situations. All this equipment is stored in a secret bunker (well, ok, garage). Our garage even has a remote-controlled power door. However, none of the trees next to the driveway move, and are more likely to damage the equipment than be damaged should you collide with them.

The available equipment is as follows:

Trundlebird 1 (mobility scooter). This is a rapid access ship designed for local missions. It has suspension so that the operator has a comfortable ride, and also has useful features such as a shopping basket and brakes. Many a successful mission to the local supermarket have been carried out successfully, to date.

Trundlebird 2 (car). This is the main equipment transporter. Equipment appropriate to the mission can be loaded and used where-ever, accommodating Trundlebirds 1, 3, 4, or 5. It allows multiple occupants to travel together with certain combinations of equipment, even if they ride on the roof.

Trundlebird 3 and Trundlebird 4 (rollator and manual wheelchair respectively). These are individual piece of equipment for non-local missions and can be loaded into Trundlebird 2, but are rarely both taken on a mission at the same time due to the fact that it is somewhat difficult to use both pieces of equipment simultaneously.

Trundlebird 5 (Blue Badge, allowing legitimate access to disabled parking spaces in the UK). This is the satellite that controls the deployment of missions, albeit without the orbiting part. This is most useful for missions using Trundlebird 2. Although the Blue Badge is technically not a machine, it is most important when trying to get a disabled parking space as near as possible to the mission location. This allows rapid (or relatively, at least, these things are complicated) deployment to the scene of the action.

Trundlebird 2 has recently been upgraded, but unfortunately not to a Porsche. The previous version allowed the transportation of Trundlebird 6 (the eponymous powered wheelchair used by Mini), and it even had a special loading ramp. The whole set up failed spectacularly as you could not get everyone, Trundlebird 6, and the ramp into Trundlebird 2 at the same time. This has been alleviated as we now rarely have to transport Trundlebird 6, because she wanted to be “independent” and “get married” or something.

I have opted to be the head of the organisation because I am the driving force; I do most of the driving. I suppose I could be the chauffer, making me Parker. However, I only have a Ford rather than a Rolls Royce, and I can’t distinguish pink cars from grey ones because I am colour deficient (which has led to some interesting situations itself, including me being convinced that a grey rabbit was actually green. (Edit: this really happened)).

At least for myself and Mini’s Mum (Minimum?), we have the option of using Trundlebird 2 and all the different equipment. Planning involves selecting the correct item for the mission, and then starting out immediately. Mini can set out on a local mission, but missions further afield need planning. These are dependent on such things as bus time tables, accessible vehicles, and being able to convince the train companies that you really do want to travel tomorrow and unfortunately didn’t buy the levitation upgrade.

Well, I’d better get on with planning the next mission as we need to pick up some prescriptions for Minimum from the local pharmacy. Trundlebird 1 will be best. I’ll just go and open the bunker…

F.A.B. Mini

Image description: a photograph taken & edited by my dad looking into my parents garage. Mum is sat on her blue scooter next to dad's white car, with Trundlebirds written in yellow over the top of the image.

Attack of the Brain Fog.

Let’s be honest, we’ve all had plenty of cringe-inducing moments that keep us awake at night when you most need the sleep. Much as I would like to say otherwise I am no different in this respect. However where I differ from the norm is that I can blame these horrendous instances on my disability, or more specifically the so-called “brain fog” that plagues people with various chronic illnesses.

As a member of a small team in the workplace I grew accustomed to the little quirks and idiosyncrasies that would make us the perfect subject for a sitcom, were it not for the fact that this idea has been flogged one too many times. Organising a table tennis tournament for one lunch break has been one of my least serious assignments, but being asked to arrange a “cheese day” takes the biscuit (because nothing goes better with cheese than a nice selection of savoury biscuits). For cheese day we are all required to fetch different cheeses to work, and during the team meeting we’ll all enjoy samples of them all, which for an office is an undeniably weird thing to see displayed on the calendar.

Imagine my embarrassment then, when I realise that I had not sent the email invitation to my colleague, but instead had sent it to someone else of the same name in my address book. Fortunately he had an excellent sense of humour about it and is now considering implementing a cheese day in his own office. So if cheese day goes viral, you know who to blame; parents who give their children common names. Like Emma (thanks mum and dad).

I am particularly afflicted with brain fog first thing in a morning, which makes taking my morning medication rather interesting. The most common problem arises with a tablet I take both in the morning and at night in different doses. If I get them the wrong way around, taking the larger dose in the morning rather than the evening, I will spend the rest of the day in a drowsy stupor. This having occurred on a work morning means that technically I have been to work while high and got away with it, a claim that some would use the term “badass” to describe.

Perhaps more worrying was the occasion when I tried to inhale my nasal spray through my mouth, which was a somewhat interesting experience.

While living in halls of residence at university the fire alarm being set off at unthinkable hours by drunk people trying to use toasters was a very regular occurrence. When the fire alarm exploded into life at 2 am in my first week away from my parents I wondered why my dad hadn’t switched the burglar alarm off, which would occasionally go off at night when a spider crawled across the sensor (and never when someone was trying to break in). This is despite the fact that the fire alarm sounded completely different, was much louder, and included a red flashing light on the ceiling for those who couldn’t hear the alarm. Needless to say I was one of the last to arrive at the convening point as we were evacuated.

There is also the story of how this photo came to exist:

Image description: a photograph taken by my dad when I was a teenager, in my bedroom. I'm wearing a black and white striped t-shirt, & Croaky the frog is balanced on my head.

Discussing brain fog with a few online friends an accidental misreading lead to brain fog being substituted with brain frog in all of our messages. Given that for some strange reason I have a plushie toy frog (I still have the inventively named Croaky) it didn’t take long before dad took this photo for me. Selfies were harder back then.

By the way, if this becomes a meme the extra publicity is much appreciated.

Nutritional Nutters.

Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all of the time and would cure themselves with their knowledge should they fall ill.

Approximately a year ago I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time the response I invariably received upon revealing my deficiency to someone was, “but I thought you were a nutritionist”.  The truth was that a tablet I was taking limited the absorption of iron in the intestine and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it on Wikipedia, and I was just making up excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.

The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.

There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences instead. Likewise I use nutrition to help me manage the symptoms of my condition, not to cure it. By my albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.