November Round-up #1: Medical

13228058_849461041825680_672486022_n (2)November’s been a bit of a weird month, but overall, a productive and positive one. After missing out on really celebrating Samhain on 31st October due to an appointment in London that was then subsequently cancelled (when I was already in London, and with no prior notice…), the month didn’t get off to the best of starts.

Traveling when disabled is never fun and never, ever easy. Let alone when going to London of all places, and not for leisure. It’s one thing to toddle to London for a convention (like Nine Worlds in August… which I realise I never actually posted about properly by writing up part two of the review—oops!) and another thing entirely to trek down for one day. For starters, staying in a hotel for one appointment that’s going to take maybe an hour tops feels a little like extortion, so, it was a there-and-back kind of trip. That would have been fine, had the appointment not been cancelled! Imagine turning up and them, NOPE, sorry, your appointment was cancelled and we didn’t even call, so sorry that you just came all the way here on a train and two taxis only to be told a clinician had called in sick. Yeah, it wasn’t pretty.

That whole thing messed me up pretty badly. It triggered a pain flare and I caught a cold, for starters. Moreover, it really upset me and drained all the spoons I would have needed to pace my month better. So it left me really struggling before the month even started. Fun.

The rescheduled appointment came through a week or so later, for the 1st December. I almost just rearranged it because, honestly, I just don’t have the spoons for this shit! But, I knew it would just be another source of anxiety, so I went ahead and accepted the appointment. Hopefully I can plan my energy better this time now I know that a day in London like that is utterly crushing. It’s also upsetting, you know? London is one of my favourite places and it’s now completely inaccessible for me. I can’t easily go to any of the places I want, having a wheelchair in London is so stressful and now I can’t just hop on the Tube, navigation is a nightmare. I’m usually pretty good at handling all the ways my life has been changed by my chronic illness/disability, but London’s still a sore topic that’s generally left ignored. I can’t fix it, can’t make London magically more accessible to me, and I’m not going to stop loving it any time soon, so really it’s best if we just don’t talk any more.

In other medical news, after being told I needed an intensive course of B12, followed by a course of folic acid (in that order, else nerve damage was a real risk), I needed to schedule in five intramuscular injections with the nurse. I don’t go to my surgery; I’m lucky enough that Dr S comes to see me (in his lunch break) and I can avoid the awkwardness and distress of having to go and be at the surgery. But not this time. Dr S couldn’t do these for me and after a bad experience with the district nurse’s attitude, it was easier for me to just suck it up and go. It wasn’t easy, but at least they’re done, and 3/5 times it was the Nice Nurse instead of the Kinda Bitchy Nurse. Unfortunately, the Nice Nurse hurt when she did the injections.

I wasn’t expecting anything to suddenly change or even improve through the B12 injections—and I wasn’t wrong. No increase in energy, no reduction in pain, no nothing. Sure, my body needs that stuff so that’s a positive, but that’s all that came of it. What I’d like to know more is why my B12 levels were so low in the first place and what we’re doing about tracking it. Buuuut, since it’s one of those things where I expect to have to insist to the Dr that the injections made no difference, it’s not something I’m looking forward to.

Honestly, I’m just really, really tired of trying to approach doctors from a million different angles to get them to listen. And after the rheumatologist said one thing in a letter, another in person and a third, different thing on the phone, it’s hard to know what’s going on or where to start.

The run-up to the holidays is always a mixture of “yay!” and “oh dear sweet gods I’m already exhausted”, but I think that this year I’ll have more of an idea how to pace myself and I know how to prioritise myself and self-care better than I did last year. Aka, last year was the last time I’ll bother celebrating Christmas for the benefit of others, and will just stick to Yule and cut down on any additional stress between then and New Year. It’s frustrating, really, that you only learn how to pace properly, by royally screwing up with pacing to begin with. Because why would this stuff make itself easy, huh?

I’m going to try get into the habit of doing both a monthly round up and a separate monthly round up, hoping that it’ll help me get my thoughts organised about medical stuff and track progress, since I’m pretty terrible at tracking time and sometimes, before I now it, I’ve been meaning to arrange an appointment with the doctor for three months when I think it’s only been a week. Mostly this is because it’s just so damn draining trying to communicate with doctors—especially after the colossal waste of time the rheumatologist proved to be, who then simply left me hanging without even a referral elsewhere or a letter back to Dr S that did any good.

The nicer, fluffier and altogether less irritating update for November will follow soon. (Probably.)

Nine Worlds Geekfest 2016: Part 1

This is part one of my Nine Worlds Geekfest write up, since my experience of any con or event will be be a two-fold thing: accessibility, and general enjoyment. Naturally, these two can heavily coincide, but since Nine Worlds was pretty amazing, with nothing of the former impacting the latter, I’m going to dedicate one whole post to the accessibility of it, since it deserves the notice. Seriously: the accessibility team and the work they did was out of this world. Big, enthusiastic “thumbs up” to the accessibility peeps. They nailed it.

14256347_926923737412743_526412203_nSo I’ve never been to a geek convention like Nine Worlds before. Sure, I’ve vaguely attended anime cons but honestly, they’re not even comparable. (The UK doesn’t really do great anime cons.)

I would have attended this year even if I’d not been aware of the communication system they have in place. But it certainly helped put my anxious mind at ease, knowing that I would, in theory, be able to go around with my big red badge of NOPE and remain off the radar for any well-meaning conversational types looking for a chat or even just a casual passing word.

If I’d only had the anxiety by itself to deal with then I’d have done far more than I did. As it happens, chronic illness doesn’t just go away because you’re trying to have a good time and step out of your comfort zone for once, so there were times I missed stuff because I wasn’t well enough.

Even before arriving at Nine Worlds, it felt different. I don’t have a lot of experience with things like this, but I could just tell that it was open and accessible and that I’d feel safe there being “different” (in my case, disabled, not NT and also queer). Even if you just take into account the fact that I’m horribly introvert and have massive social anxiety to deal with, Nine Worlds presents such a safe space,  by means of their communication system. Not only is the system of coloured badge overlays very simple, but it is also advertised: people can’t miss the fact that this exists. Yes, there was a single time where someone talked to me and I wasn’t happy about it, but, on the whole, the badge system is amazing and it made me feel safe.

It’s also worth adding that you can have pronouns added to a badge, to help with any awkward/upsetting situations that might arise. I had a standard badge without pronouns, but I assume that pronouns are simply written on the blank badge the same way names are (meaning you can have a different name on your badge to any other details you might have needed to give).

Nine Worlds works as hard as it can to be an accessible con, for both visible and invisible disabilities, as well as anything from deafness to sensory overload issues. It really shouldn’t be the case that I’m (in a good way!) singling out a convention or event to say “yes, they care about accessibility and safety”, but the Nine Worlds team really does give a damn. With closed sessions for both PoC and queer peeps, you really get the impression that they know what’s up with the world and with the geek community. They get that there’s work to be done, and they’re willing to do it. Hell, that in itself is enough to make me want to go again, even without the fact that it was also a really, really great convention.

As I said, I’ve not been to one before, so I can’t judge others (outside of the horror stories I see on social media), but there’s something that seems just so inclusive about Nine Worlds. From the accessible seating set aside at various intervals in panel rooms (that’s right – these spaces aren’t just at the front of the room, but spread out amidst the regular seating, too., just as the spaces reserved for wheelchairs are) to a quiet room and the teeny reminder on their accessible seating signs that not all disabilities are visible, Nine Worlds are seriously on point with getting this stuff right.

There was one lift that could have been too small for some wheelchairs, so they advertised this and set up special arrangements to help those whose chairs were too big get around. It’s difficult to think of just what else they could have done!

It’s hard to stress just how much of a difference that red badge made to me. Whilst it didn’t entirely solve my social anxiety issues (which are fairly complex and multi-layered, and I’ll likely cover them in another post soon), it helped immeasurably. Part of my anxiety is related to being seen and so obviously there’s nothing that anything short of a cloak of invisibility could do to help with that–but! That didn’t mean that the knowledge that nobody would talk to me didn’t help. No chance of chit-chat in the lifts; freedom to browse the Expo with nobody trying to hawk anything or start a conversation; no worry about people I know thinking “hey! That’s Leo!” and coming to say hello if I wasn’t ready. All these fears were immediately eliminated.

I can imagine for other people who struggle with social anxiety or peopling, that the idea of being able to wear a badge that keeps you “off limits” is just ridiculously reassuring. Imagine being able to toddle from your hotel room, down into the lift, wearing your big red badge of NOPE, knowing that you might be ferried down through hotel with nary a word spoken to your person, both as you make your way to the panel you’re attending, as well as during, after and for the rest of the convention, if you so wish. Anyone with a red badge is perfectly welcome to initiate conversations with anyone they feel comfortable, but there is absolutely no obligation and neither will there be the fear of being rude if you’re not able to talk or socialise. The badge does all that for you. It’s genius, really.

I’d say it’s worth expecting someone to accidentally speak to you whilst wearing the badge, but it’s difficult to say whether it will happen or not, since the circumstances were so very specific with me, and, though I’m still trying to decide if the person in question recognised me from social media or not, it wasn’t a conversation as much as a passing remark. It wasn’t great, but it didn’t do any harm overall (likely because the person may have realised and shuffled off after the fact, or, because it was intended as a passing remark in any case). Anyone who wants to put their faith in this badge system, can indeed do so. It worked and it felt safe. There’s not a lot more you can ask for, really.

 

 

New Wheelchair and Attempting #Blaugust

2016-06-19 20.09.11What better than a little incentive to start a) blogging more regularly and b) training myself out of thinking that each blog post I write needs to be five million words long and eligible for the Man Booker Prize?

Mostly I’ll just be blogging/reviewing as per usual, but I’m trying to get into the habit of more frequent posting about me and my life in general, relating to books, writing and disability. (Of course it remains to be seen if I’ll actually manage it,  but there we have it!)

But let’s start off with good news: I got my new wheelchair! After the very generous donations given through my GoFundMe whatsit, I got the pennies to buy myself a brand new wheelchair that is lighter, stronger (and therefore smoother and less wobbly) and comes with all-terrain mountain bike style wheels that promise to make parks and hills and all manner of previously-awkward terrain accessible again. I’ve only had the chance to use it a few times so far, but it’s so very different and immeasurably more comfortable than my old one. It’s light and feels less restrictive to sit in, which is definitely a bonus. It feels like there’s more me and less wheelchair, which is something I didn’t even know could be a thing.

I’m excited to take it with me to Nine Worlds Geek Fest next week (oh, gods, I’m not even close to being ready) and feel that if I am up to adventuring around London a little, I won’t need to worry about the terrain and bumpiness of unfamiliar and/or uneven streets.

I am incredibly grateful to anyone who donated, beyond words, in fact, since it’s always the worry that you’re asking for too much, isn’t it? Well, here I am with my new wheels and they’ve already started to make a noted difference to how my pain is managed when I’m sitting in it outside. I have high hopes for long durations spent in the ‘chair at Nine Worlds, where I’ll be in it far, far more than I usually am.

So, thank you again to anyone who donated or shared the GoFundMe link–you have my eternal gratitude and the promise that, should I ever actually regain my throne as the long-lost prince of the faerie kingdoms, I’ll send my house-cleaning legions of brownies your way.

And as for Blaugust? I’ve been meaning to blog more, so this seems a pretty good incentive to kick that frequency up a notch. The goal is to post more specifically about life in Leoland and navigating chronic illness and disability whilst also being an anxious creative who really, really sucks at one thing all spoonies need: rest!

Wheelchair Fund

wc01017_excel_allterrain_outdoor_selfpropelled_wheelchair (2)

This is the Excel All-Terrain Outdoor SP wheelchair

So I started a GoFundMe for a new wheelchair. I was nervous about doing so for a few reasons, not least of all: what if nobody cares? why should anyone give me money? I feel bad asking for things! Shouldn’t I just be grateful I have a wheelchair at all?

But then I went ahead and made the campaign anyway. Yes, I’m worried that I’m just one tiny person on the Internet, and not very well-known, even (especially?) within the chronic illness and disabled communities, so it would feel like shouting into the wind. Yes, I worried that I’ll be sitting here, afraid that I’ll be sitting here feeling fairly invisible and that those feelings of inadequacy will lead me down the familiar paths of yes, but shouldn’t I be grateful for my current wheelchair? and Isn’t it just vain or selfish to want a better wheelchair so I can do more things?

Well, in fact, no–to both.

Of course I am absurdly grateful for the wheelchair I have. It gave me a measure of my former capacity to live as I want back. But that’s all it gave me: a measureAdditionally, the wheelchair is old and rickety when sitting in it. It’s not comfortable, can exacerbate pain and is extremely limiting in where it can be wheeled/pushed. So yes, whilst it means that with this chair I can go out when before, I could only go out and stay in the car, it also means that I’m still unable to do even the most simple of things.

The current wheelchair I have is horribly unreliable on any terrain that isn’t a flat, even surface. And really, when was the last time you went into your local town or village (or any town or village!) and found a place where the pavement was flat, on each and every street? My town is relatively well-kept and even so, there are so many areas that I hate visiting because I know that I’ll be jostled and jolted and generally would rather avoid due to the wheelchair being ill-equipped.

Needless to say, many of the places I would love to visit are completely off the table for me. I don’t want to be unable to travel afield of home just because my wheelchair is inadequate. I feel trapped enough dealing with my social anxiety and the realities of disability and chronic illness, without also being limited by where I can go. I’ve been feeling very caged for a long time, with places like parks and new places (where I don’t know what the terrain is like, and therefore can’t anticipate how my wheelchair will handle it) completely inaccessible for me. It’s crushing to want to try to break out of my shell, finally, and to want to be at least a little adventurous, only to find that even now I feel that mentally I can, physically I still can’t.

It’s not fair that I can’t do even the simplest of things without the risk of exacerbated pain and even injury, just because my wheelchair is unsuitable. When I was given it through my doctor (which I’m still very grateful for, of course!), I was told it would potentially lessen my social anxieties by being a wheelchair that spoke of “an injury, such as a broken leg” instead of a disability.

Whilst I completely understood what my Dr was going for (and at the time, it was very relevant!), the reality is that I am disabledI’m not someone with an injury who needs the wheelchair for a brief period of time whilst an injury heals.

I am disabled and I need my wheelchair whenever I leave the house. And it’s starting to become more and more stressful because of how uncomfortable and unsuitable the wheelchair actually is. All I want is to be able to live as normally as possible, in relation to what that means for me. I want to be able to travel and explore cities and towns as much as I want to be able to go off road into parks and the countryside where I live.

Really, I just want as few limitations as possible. That’s all. I’m going to London in a few weeks to attend Nine Worlds Geekfest (which is my first convention since becoming disabled) and I’m nervous, because I don’t see my wheelchair holding up well in London, meaning I won’t be able to go to many of the places I’d like. The convention will likely be amazing, but I’ll still be very limited to just the hotel, which is kind of disheartening.

So if you feel you can help at all, please do! You’ll have my genuine and eternal gratitude for any help you can give–whether that’s money to help towards the chair itself, or simply sharing this post and/or RTing what I post on Twitter.

A new wheelchair will help change everything for me. Thanks for reading!

[Product review] Leschi Fox Warming Pillow

Item: Leschi Fox Warming Pillow
Colour: Midnight
Purchased: Amazon.co.uk (also available from leschi.de (please note that this site is in German!)
Price: £24.99
Rating: 4/5

2016-03-06 11.34.43The funniest thing about purchasing a microwaveable warming pillow (though it can be heated in the oven… but this just doesn’t seem a great idea to me!) is that, prior to ordering Noah the City Fox, we didn’t have a microwave. We’ve just never needed one for cooking, so never bothered. But, I can’t deny how useful one will be for heat therapy, and I’m sicksicksick of using bad-for-the-environment Deep Heat patches, etc. So I went on a heat therapy buying spree!

Noah the Fox came first.

I have a lot of issues with pain in my neck and shoulders, so it seemed only logical to get this baby first. I have a couple of other things on the way, but they weren’t on Prime so have yet to arrive. Grr.

I love this pillow! The box is cute and fun and I love when companies try to be friendly and maybe even a little twee about products such as this. It’s nice. The box is obviously recycled cardboard, which makes me happy, and literally nothing in th2016-03-06 11.39.10e package will get chucked in the bin instead of recycled. Furthermore, there is no additional packaging bar the box and a teeny slip of instructions. The box is the perfect size for Noah to curl up in. No wastage whatsoever.

The box is attractive with a pleasing design and the little fox inside is adorable. 2016-03-06 11.35.31I got mine in black because, well, me. The filling is 100% organic wheat, but with no lavender like you’d find in some similar products. I was a little disappointed by this, and that’s the single reason why this got a 4/5 instead of a full 5. When heated, the wheat can smell a little… bakey, I guess. And if you happen to heat Noah up too often, there can be a very wheaty scent lingering in the room for a bit. It’s not really an issue, just something to note if you’re incredibly sensitive to smells and don’t particularly like wheat.2016-03-06 11.35.52

The pillow is light, but sturdy and a very good size for its intended place – draped around your neck and shoulders. One of the best things is that Noah is not too bulky and you can comfortably wear him around your neck for as long you might need. And when he goes cold, just pop in back in the microwave for 2 mins and he’ll be ready to snuggle again. Granted, the heat retention period isn’t super long, but then I don’t have much experience with microwave heatable therapy, so maybe the advised time of 45 mins isn’t so bad?

2016-03-06 11.36.27Our foxy is made of a soft fleecy fabric and feels soft and pleasant. He’s also adorable.

The best thing about the Leschi fox is that he’s so, so light and not big or bulky and therefore slightly unwearable if you’re trying to just get on with your day in spite of the pain. Noah the Fox is good for that.

My only improvement would be to add lavender inside along with the wheat, as this would be a vast and pleasant improvement. Maybe one day I’ll do a little surgery on the poor thing and add some myself.

2016-03-06 11.37.29Overall, I would definitely recommend these for any spoonie who could benefit from heat therapy for their shoulders and neck.

I thought the price was good, too, compared to how much others cost and this one has the benefit of actually being tailored to shape.

International Wheelchair Day: All hail the wheelchair!

It’s apparently International Wheelchair Day—one of those supposed “holidays” that most people only ever realise are a thing when they see someone tweet something about it. People like me. It just so happens that I can get behind this day. Wheelchairs make my life more liveable. If I didn’t have a wheelchair? Well.

Grocery shopping? Nope. Restaurants for meals out? Nah. Trips to the cinema? Forget it. Going anywhere whatsoever without the risk of either keeling over, bumping into someone or being in so much pain I’d sooner just drop to my knees and talk to the ground, hoping to get some form of missive through to the Underworld and strike a deal with my soul for immediate teleportation hope? You must be joking.

I’m not paralysed; I can walk. Well.

Strictly speaking, that depends on just what you consider “walking” and how you grade “performance”. Can I walk to the loo? Yes, yes I can. Can I walk to the ensuite bathroom for a shower? Yes, yes I can (though do note that here I use a shower seat, because I can’t stand in the shower for long at all; some days not at all). Can I walk from the regular parking bays at a supermarket to the door of the shop? Not on your life. Could I trek from the car park, cross the road and through the gauntlet of people and decorative seating standing between me and the doors of Cineworld when a movie takes my fancy? Hahahahah. (That’s a “no”, by the way.)

There were some days that I thought I could probably walk, whether with crutches or otherwise, and I found out the hard way that this wasn’t the case. I thought that I didn’t need—maybe even deserve—a wheelchair, because my legs work. But it soon became apparent that without a mobility aid like a wheelchair, I wasn’t going to have much quality of life outside the house. I couldn’t walk far, couldn’t park in the disabled bays as technically back then I wasn’t considered disabled (I now am, after having realised that the term is broad and does, very much so, apply to me) and didn’t have a Blue Badge. I couldn’t do most things, couldn’t go places, and couldn’t rely on using the crutches for long at all because of the immense pain they caused in my arms and shoulders.

So, I got a wheelchair. I’m grateful that my doctor arranged this for me through a charity and I’ve enjoyed the added freedom since. It’s a self-propelled wheelchair, but I very rarely push myself along. If we’re indoors I will, but otherwise my brother pushes me. The motion of propelling is exhausting and can cause pain in my aforementioned arms and shoulders. The wheelchair isn’t ideal and sitting in it can trigger knee pain, but it’s better than struggling along, close to tears and stumbling all over the place from pain and fatigue.

There’s something slightly terrifying about being out and about and hurting so much you want to cry, but knowing you have to keep walking because otherwise—what? What are you going to do if you stop walking when you’re nowhere near the car or a bus or anything bar a vast ocean of concrete and cobbles? It’s panic-inducing and horrible. That’s sort of when you know you might need a wheelchair.

I’ve never looked back. It changed everything.

I don’t use my wheelchair in the house, but honestly, this is due more to the layout of my house than need. There are times, during my really bad flares, where I would gladly use the chair indoors, but it’s not really possible without a lot of extra fuss and change and frankly, when I can just use the walls and furniture to help, I’d rather do that.

But being in a wheelchair is hard. If I didn’t go out with my brother, I would find the world a very difficult place to navigate, even with the well-meaning help of strangers here and there. I can’t communicate with people I don’t know, due to crippling social anxiety, so without my brother, the help I’d need from random people would make it impossible for me to go out and do things, even with the wheelchair. In many ways, this is why I’ve never considered a powerchair. Yes, I could do with one, in theory, because of my arms and shoulders—but when I don’t go out alone, it seems a little pointless.

So yes, navigating the outside world is very, very hard, even with a wheelchair. Especially with a wheelchair. Steps! Steps, everywhere! That teeny little not-even-worth-mentioning-step-that’s-really-just-an-inch-or-two? That’s a step. Taken at the wrong angle (e.g. without warning that it’s there) a step like that will jolt me and cause pain. This is to say nothing of badly-paved streets that jolt and jerk the chair even with my brother being as careful as possible. And we’ve not even started on no access to the actual pavement itself from the road—even in disabled bays themselves. On a particular stretch we’re require to push me along most of the length of the road (which happens to be a main hub for busses and a through-road into the centre) before we get to the bit where we can roll the chair up to the pavement. It’s silly.

I’ve had people expect me to get out of the wheelchair, too. People who can’t possibly know that I’m not actually paralysed. Can you imagine? “Oh, can you just get out of the chair because we can’t be bothered to obey the law and make our premises accessible just for a few people like you?” Mhmm.

“Oh, can you possibly stop being such an ass, maybe?”

Mainly, I get glared at for the unspeakable crime of being young and sitting in a wheelchair. Naturally, since there is no visible injury or missing limb, I must just be lazy. Ah! The lazy millennials! I’ve found the worst offenders are upper-middle-aged people. Of course, not everyone is horrible. But honestly? The nice people are, in my personal experiences, in the minority. It’s sad, but it’s true. Most people are crap around wheelchairs and disabled people. They walk in front of the chair at a moment’s notice and then glare down at you in the chair and not the one pushing the chair, if you happen to clip their calves. Well, if you looked where you were going and stopped thinking the world belonged to you, you might have noticed the ruddy great wheelchair at the side of you.

But! I’m certainly not going to let people being asses make me feel uncomfortable for using a wheelchair. It has made things possible. I’m going to a masquerade ball in May, something I wouldn’t be able to do if I had to stand the whole night, or even sit awkwardly in a corner the whole time. I’ll be able to wheel about. And yes, of course it’s depressing that whatever costume I wear will feel as though it’s being ruined by the chair. Some people are 100% comfortable with their chairs, but I’m not one of them. Not physically. I’m self-conscious and suffer from a hefty amount of self-loathing, so having to be seated in a wheelchair in my period finery and mask won’t be ideal. It’s upsetting, but it’s nothing compared with the upset of not being able to go at all.

Maybe if wheelchairs were something you saw more often. But you don’t. Disabled representation? Ha! What’s that, then? Because I sure as hell don’t know. Never mind if that disability happens to be related to an illness rather than physical injury or trauma. I want to feel comfortable in my wheelchair, the same way people feel comfortable in their cars or on their bikes… but that’s not about to happen any time soon.

Still, I wouldn’t trade the wheelchair for the world. It’s heavy and battered and needs replacing—but it’s mine and it improves my quality of life considerably when I’m out and about in the world.

I’ll admit, I’m nervous about things such as the ball and a convention I’m attending this summer. I’m not used to being That Guy in the Wheelchair in a social setting. I don’t know if it makes a difference to how people see you. I wouldn’t know. All I do know is that people in general look at me funny when I transfer from my wheelchair to a seat in a restaurant and my brother folds the chair away. There’s always the fear that someone will make a comment, that a joke will be made in bad taste and you’ll be made to feel like a fraud, be made to feel as though you need to defend yourself, to explain your situation.

I think it’s tiny wee things like this that people who don’t use wheelchairs wouldn’t even consider when thinking about the problems that disabled people face. It’s not always about no ramps for doors and badly-cobbled streets. It’s more than that. Think of online memes of people in wheelchairs standing up. It’s actually pretty horrific, really.

Either way, my wheelchair is one of the best decisions I’ve ever made. It was a necessity; I couldn’t go on pretending I could walk when I so clearly couldn’t. It just wasn’t safe for me to do so, when a bad fall was the least of the problems, the least of the things that could go wrong. It can be difficult to get used to if you’re someone who enjoys a lot of freedom (being a hermit, I didn’t mind so much, since it honestly gave me more freedom than it took by making me semi-reliant on people), especially when self-propelled wheelchairs take a lot of energy to wheel about. But they’re worth it and you notice the difference immediately.

Unfortunately, as of yet, my wheelchair does not have “go faster” red stripes.

 

 

Wheelchairs, Tattoos and Disability: Issues with No Regrets

OK, so. Today was not a good day.

Let’s start at the beginning. Let’s start with my first tattoo, in 2013. I went to No Regrets in Cheltenham and got a tattoo fine and dandy. I was in a wheelchair, as I am 100% of the time when I go out of the house. They had a crappy ramp–but it was vaguely functional. I used the ramp and I went inside. Easy. Got tattooed. Left. Everyone was happy.

Now we come to December 2015. I decided to get another tattoo. I emailed to talk about the details, since it’s difficult for me to just up and go into town to do this stuff in store. So we did this via email. In this same initial email, I was told (I have the emails) that after the renovation “the front double doored access” would be available.

There is a rather hefty, sharp step from the pavement into the store. I was assured that there would be access at the front; I had stated I was in a wheelchair. See the problem? So, I went.

Lo and behold–there was no ramp! (A ramp they now deny ever having, I might add: but I will get back to this.) I was required to get out of the chair and climb up the step into the store. As it happened, I was more or less able to do this, that day, with help (provided by my brother). I wasn’t happy (why should I be?!), but I did it. Furthermore, the wheelchair barely fit down the corridor and I was required to get out of the wheelchair, yet again, to get into the “temporary” room.

This “temporary room” is the piercing room. The piercer doesn’t work on Mondays, so, this is the only day that anyone unable to use the stairs can actually go and get any work done. Because now, after the refit, all the tattoo rooms are upstairs and therefore inaccessible. So now we have: no ramp, and only one day a week where anyone who cannot manage steps can go and access this service. There were no apologies for this. Not even a token “sorry for the inconvenience” or a “sorry that we’re not accessible and you’re basically being made to feel like you don’t belong”. Nothing.

I’ve been needing to go and have the tattoo touched up (it’s very patchy) since December. I’ve had to reschedule once already, because they can only accommodate me one day a week and being chronically ill doesn’t work on a calendar, I’m sorry. (I’m not sorry.)

I had an appointment today at 5pm. By this point, No Regrets knows that I have a wheelchair, that I need accessibility, and that we’ve asked about a ramp before. We were promised that there would be a ramp “soon” and that it was being made.

Well, that turned out to be a lie, didn’t it? They “can’t afford a ramp”. We turned up today, in the cold and wind, and opened the doors, asked for the ramp and were told that they didn’t have one. At this point my brother went in to talk about this, at which point he was point-blank told that they had never had a rampHint: They have had a ramp. 

I was expected to get out of the chair, or, I presume, since the assistants flapped around vaguely saying they would “go get help”*, to have someone hoist my wheelchair up the step and inside the shop. Excuse you. I am not an inanimate object to be lifted by inexperienced and unqualified persons whom I do not know. Today I could not safely get out of the wheelchair. I would not get out. So, guess who had to reschedule his tattoo touch-up, again? Yup. This guy.

Never mind the fact that next time, I will be expected to get out of the wheelchair againWhether I am able to or not, I will be expected to do so. So what about those who literally cannot get out of their wheelchairs?

It’s not good enough. No Regrets were prepared and informed: they know about my wheelchair and my accessibility needs. All I can gather is they literally do not give a shit. And going as far as to call my brother a liar about the mysterious ramp? Excuse you.

So the tattoo still needs touching up. It’s still a mess and I’m still stuck having just one option of when I can go (why, exactly, can’t I be booked into a slot that uses the piercing studio on any other day?). And still stuck being expected to get out of my wheelchair and do things to make able peoples’ lives easier.

 

*Which seemed to equate to wandering around aimlessly, not really trying to solve any problem or communicate with us what was happening at all. And there I was, out in the cold and wind, getting cold and risking more pain through tension and anxiety. Mhmm.