Tag: disabilityawareness

A Big Weekend for Accessibility

A Big Weekend for Accessibility

by elizabethmdouglas ♥ 0 Leave a Comment

Just over a week ago, I went to BBC Radio 1’s Big Weekend in Coventry with my friend. I’d won the tickets because a few weeks before the festival, I’d been to the Student Radio Association’s conference where during a talk on how to put on a live event, I’d asked the speakers how they were trying to make festivals like Big Weekend more accessible to disabled people. Originally, I wasn’t going to ask the question at all because frankly, no matter how much I share with the internet, I do still feel incredibly lame every time I bring up disability in front of a crowd. So, sitting there, in a room full of strangers – many of whom, I was trying to impress – my instinct was to avoid the topic for fear of tokenising myself. But then again, as my Mum and Dad say: if I’m going to do this disability representation thing, then there will be times when I have to fight my ego, and just ask the question.

I’d never been to a music festival before. That wasn’t because I’d never wanted to, it was just not something that I thought I’d be able to do, given that the two main taglines for my Spina Bifida are that I can’t stand for long, or walk far. So, I just learnt to compartmentalise the jealousy I felt when I saw friends posting photographs of each other covered in glitter in the middle of a crowd, dancing to the tunes of some of my favourite artists, in the same way that I’ve accepted I’m never going to go ice skating. But, as many disabled people are likely to tell you, I’m excluded from experiences such as these not by my ‘condition’, but by society not really bothering to try and get me involved. However, there are plenty of people who want to change that and it’s not always useful to base the conversation around accessibility on all the things the able-bodied world does wrong.

Obviously, I completely loved Big Weekend: I danced for hours until my legs ached, I pushed my way to the front to see an artist I’m not even that fussed about, I ate greasy food from a burger van, and I got a bit emotional at the beauty of sharing all those experiences with strangers in a field. But, I’m disabled, so it was unsurprising that I also had some not very nice moments during the weekend.

The festival had lots of things put in place to try and make it accessible, and when it came to the company and the people working within it, I have my hand on my heart when I say that I felt like they were sincere in wanting to make everyone feel welcome. However, individual people work these events, and it was the individual’s understanding of disability which created issues for me. For example, on the first day of the weekend, I wore trousers which covered my callipers – something I know makes people totally unaware of my disability. On that day, because I don’t look ‘disabled’, each time I asked to cut through barriers so that I wouldn’t have to walk all the way round or if I could please be directed to the accessibility exit closest to me, I was consistently doubted and questioned – even after saying it was because I’m disabled. Whereas the second day when I wore a dress so my callipers were on full display, I didn’t even need to finish my sentence before barriers were lifted, no questions asked.

This kind of experience wasn’t unique to BBC Radio 1’s Big Weekend, though. I get this everywhere I go, whether that be in an airport asking for disability assistance from one terminal to the next, or simply driving into a disabled space outside the shop. I’ve had people tut at me, roll their eyes, knock on my car window to ask me what I think I’m doing; people have told me ‘no’, accused me of ‘stopping people who need this help from getting it’, and I’ve even had my name removed from accessibility lists because someone took one look at me and assumed that it must’ve been a mistake.

So yes, I love love loved BBC Radio 1’s Big Weekend and it did make me feel for the first time like I’m also invited to music festivals, and I do trust that the BBC has every intention of improving the accessibility of its events and internal structures. But when I speak about accessibility and disability inclusion, I’m going for more of a paradigm shift: I want everyone to change the way they understand and perceive disability. It’s a hefty task, it’ll take a hot minute, and it’s as much the responsibility of the individual as it is of the institutions, but I’m an optimist, so I think it’s possible.

This is about individuals engaging with their preconceptions of disability and how they react to situations – both passively and actively. How do you see me? How should I look? Why do you think I’m lying? These are the questions we need to ask each other because organisations can put provisions in place, but those provisions are useless if the people with the power to let me access them are going to make me beg.

So if it’s not your fault, then whose fault is it?

So if it’s not your fault, then whose fault is it?

by elizabethmdouglas ♥ 0 Leave a Comment

I had six operations as a child but I only really remember the last few, and even then the images are hazy. I remember the fever I had when my foot got infected so you could see the bone from the outside, but what I remember more is when my oldest brother (a teenager at the time) was late to meet his friends because he climbed into my tiny bed with me to watch The Road to El Dorado, as I shivered from the fever and waited to go to the hospital for another operation. I remember crying every time my parents told me I’d have to go to school in a wheelchair, but then I also remember all the laughs once I got there and my friends would run through the halls pushing me as they went. And I remember that even though I felt myself shrivel every time I had to climb into that wheelchair seat, I didn’t mind it so much when we went down a sloped pavement because my Dad would always make me laugh by letting the handles go and running alongside me.

Whenever I’d have to go to the hospital for operations (which, was not as often as it is for some children), I’d get excited because I’d be skipping school. I remember those workbooks with the ridiculously easy exercises, and I remember finishing the whole thing in about twenty minutes and then spending the rest of my time drawing or watching cartoons. I also remember fighting the anaesthetic before the operations even when I knew I wouldn’t win. Naturally, I never liked being in the hospital gowns or waking up with stitches in my feet, but I don’t have any trauma from it either. In a weird way, it was kind of an adventure.

I’ve consistently thought against sharing the more vulnerable experiences of my disability because they play too neatly into the stereotype of the weak and passive disabled life; the image of me being in a hospital bed with a cannula in my hand rather than in a Year 2 art lesson strokes society’s ego too much. Nonetheless, I’m telling you a handful of these memories now because I want you to see that even in the moments when I fit into the DIY SOS trope, I didn’t feel like this image of the poor disabled little girl. I just felt like a little girl – one who was cracking jokes all the way through because I mostly didn’t care about my Spina Bifida. (Which defo contributed to a few blisters along the way, but oh well 😀 ).

The point is that I only ever truly feel disabled when society disables me – and it’s important that able-bodied people understand that because if they don’t, then it’s easy to think that disability has nothing to do with them.

In the last few months, I’ve felt really excited about my future because I’ve been working really hard to get myself started in the radio world. But in the midst of all that, I’ve had consistent problems with my feet where they blister, then they heal, then they blister, then they heal, then they blister. The reason that this has been happening isn’t because I’ve done something I shouldn’t have, instead, it’s because the factory which makes my shoes spontaneously decided to change the lining of my insoles last year. The new lining was tougher than the old one, it caused my skin to harden quicker than normal, creating a blister which then never really healed. You’d think that this would be easily remedied by asking for the insoles to just go back to what they had been for years, but I did that, and still every new pair I’ve received has been wrong in a different way – even though my insoles require about three modifications. So at this point, I’m convinced that whoever’s making them is completely ignoring the prescription.

I understand that the pandemic and Brexit, and a general under-funding of the NHS have made it so that resources are stretched and waiting times are enormous, but these things don’t change the fact that I need the insoles and shoes to walk. I am patient, and I don’t kick up a fuss until the very last minute because society tells me that I should be grateful for whatever I receive, but what I’ve been receiving for the last six months has been making my condition worse. What I’ve been receiving is forcing me to need more from the NHS; requiring them to spend more money on production and distribution than they would normally have to, just because somebody isn’t reading my prescription correctly. I have wasted materials in my house that I can’t use but I could’ve if someone had followed the design. Who knows! I might even have somebody else’s design and now they’re suffering too because we have each others’. But I bite my lip, strap my foot up, and I don’t start any arguments down the phone about this stuff because apparently, it’s nobody’s fault. The worst part isn’t the anger though, the worst part is being at the mercy of other people and them not seeming to take that seriously – like when I asked the receptionist if there’s any way my shoes could please be posted to me without being lost in the post. She laughed and nonchalantly said yes but if they’re lost then they’re lost. She laughed and I cried.

I think it’s easier for people to sympathise with, or pity, you when you’re a young girl in a hospital gown because most people identify a level of tragedy there. It doesn’t matter that I was a happy child, who didn’t feel disabled – operations or not – what matters, is that I looked vulnerable in that wheelchair. But half of the times I was in that chair were caused by the system’s incompetency to supply me with the basic materials I need. So yes, I smiled through the not-so-fun disability moments and I had a beautifully happy childhood, but there were times that I didn’t need to be in that chair.

So as uncomfortable as it might be for people to understand, it is a fact that this society disables me far more than my Spina Bifida ever could, and I don’t want pity for that, I just want my shoes.

Wait, but I thought that I was supposed to hide this?

Wait, but I thought that I was supposed to hide this?

by elizabethmdouglas ♥ 0 Leave a Comment

If there’s one thing that I always hate hearing from people as a young, disabled woman, it’s ‘oh you do so well’. I’ve heard it whilst sitting on buses, walking down streets, in the waiting areas of the doctors or in airports, from the mouths of my parents’ colleagues and those of my teachers, and plenty of times from strangers when they simply don’t know what else to say. And I know that the intention is often pure; people want to show some level of appreciation for the fact that my physical existence may not be as simple as their own. Only, most of the time it just comes across as a bit bloody patronising.

The flip side of this, however, is that I spend so much time coping with my disability whilst doing whatever I want to do, that I’ve been guilty of disassociating myself from the fact that I’m physically disabled and that these things I’m doing are impressive. I am also English, though – Northern at that – so I suffer from an acute inability to talk about my successes without the embarrassment setting in.

But when I really think about why I don’t acknowledge ‘how well I do’, it’s because ableist aspects of our western society make it such that I’m supposed to blend in. Therefore, if I make any reference to how it might be really bloody impressive that I’ve done things like travel to, and live in the middle of the Nepali jungle without any access to medical care for 3 weeks on my own when I was 19 even though 3 weeks before that I couldn’t even go into work because I had an infected foot, then doing that doesn’t make me blend in. It brings my disability to the forefront, and I stick out in precisely the way society has told me that I shouldn’t.

So this is the part where you, my lovely reader, (hopefully) think ‘yes, of course, that’s impressive! You shouldn’t want to hide who you are’. And just like I’ve said to every person who has had genuine kindness in their eyes when they’ve told me ‘you do so well’, I want to thank you for saying that.

But drawing attention to my physical weakness is hard.

Last summer whilst I was in Ukraine, I found myself in a situation where I knew I had to mention my disability in a very public way, in order to avoid awkward run-ins later on. As always, when arriving at a place full of strangers, I chose to wear an outfit which covered my shoes to avoid any judgements before people heard me speak, but then I remembered that summer camp counsellor is a pretty active job and when the kids arrive tomorrow, if people see me sitting down every now and then, then they might think that I’m lazy or slacking off. So, to save face, I sat next to my friend from the first year I’d worked there and I announced my disability to a group of around 35 people. I’d never done anything like that before, and it was awful; my voice shook with every word I said, and I was very close to tears. But people were lovely about it, as they often are, and my announcement actually created the space for individuals to feel comfortable and slightly obliged, to ask me specifically how my legs were doing during our intense working days – something no one except my parents had ever asked me.

However, every single time someone asks about my disability, or I have to explain how it limits me, it’s emotionally draining in a way that I can’t effectively explain. That’s not to say that people should stop asking – definitely don’t stop doing that. I just want to communicate to you that back to back disability explanations don’t come free: it’s new for me to meet people and my disability to be one of the first things we talk about, and it’s new for me to have to talk about it this much.

One of the most heartwarming things I experienced after my announcement in Ukraine was towards the end of the summer. I was walking back from running an activity for some of the kids when 2 girls asked me if I could please explain to them why I wear my shoes. For the first time ever, I turned to someone who’d asked me to spontaneously offload personal details, and I said ‘do you mind if I tell you tomorrow? Because it’s 11am and 25 people have already asked me today.’. 25 isn’t an exaggeration by the way, I’d counted. And at that moment I realised that I’d always answered people’s questions straight away because I’d never wanted anyone to get embarrassed or feel upset about asking me. I also realised that subconsciously, when people see something as physically obvious as a disability, they think that on some level they’re entitled to an explanation. This, of course, is problematic.

I did explain it to these girls though since they asked so nicely, but they had to wait a day.

So, I’m in a weird spot now because I’m seeing myself doing things I never would’ve done two years ago, like walk around my university library with my callipers on full show and mentioning how I’m physically disabled in the first few moments of speaking to people. Meanwhile, the stubborn part of me which never wants to be defined – positively or negatively – by my Spina Bifida persists, and it occasionally dismisses my physical successes as just what everybody does.

And I know that my writing style leans towards a nice, neat conclusion that pulls all of this together, but not today my friends. My relationship with my body is complicated, and that’s just it.

I don’t want to wait until I’m older

I don’t want to wait until I’m older

by elizabethmdouglas ♥ 0 Leave a Comment

For a few months now I’ve been reading a lot of literature on the topic of disability and sexuality. I’ve been doing this mostly because it’s what I’m writing my dissertation on, but it’s also doubled-up as an exercise in understanding how to be a better ‘advocate’ for disability.

The first thing I learnt, which didn’t surprise me whatsoever, was that the study of disability history is a relatively new branch of academia – though obviously disabled people have existed for as long as anyone else. And whilst there are a million comments I could make on the nuances of disability history, I don’t really fancy self-plagiarising, so I think I’ll save those details for the 8,000 words I’m required to write. I do, however, wish to take some time now to acknowledge just how uncomfortable physically disabled people have been made to feel by society when it comes to their bodies. I’ve read page after page of interviews with physically disabled people, where they describe how not only have they never been led to believe that they could be beautiful or attractive and physically disabled, but that many of them are actually disgusted by the sight of their physical appearance on some level.

Disgusted. I just want you to notice that that was one of the words used by them.

This embarrassment, and in some cases repulsion, at the sight of one’s physically disabled body isn’t something people should be having to feel just because they don’t look like what some eye in the sky defines as ‘normal’. But these individuals are so poked and prodded, and pushed into a corner by societal expectations that eventually they’re left feeling physically lesser in more ways than those written in their medical notes. And these feelings of irrelevance are present in more aspects of society than many able-bodied people notice. For instance, clothes shops are made so inaccessible that people in wheelchairs can’t reach half of the clothes, or, if they can reach them, most clothing isn’t designed to fit people who need to use medical equipment or have deformed body shapes. Thus, many physically disabled people can neither look at, nor consider wearing half of the clothes everyone else is browsing, and they’re pretty much told to just cope with that.

Then there’s the fact that the medical aids designed to make life easier for people are designed solely with purpose in mind; never aesthetics. For example, let’s take the case of my callipers. Callipers are a pretty straightforward medical appliance, used by thousands of disabled people. They’re two metal bars that are inserted into the soles of my shoes, and they help to keep my legs straight. That’s it. And my shoes are made specifically for me, with personalised insoles and little tweaks here and there, but overall they just look like Docs. So, if that’s how simple the provisions are, and Doc Martins/boots are insanely popular, then why can’t I have as many designs and patterns as are sold in the Doc Martins shops? Would it be that difficult to make them?

I’ve just given you two examples out of I can’t even tell you how many, but the running theme in this discussion is that hardly anyone is considering that physically disabled people might want to look nice too. They might want to experiment with how they present their bodies just as much as anyone else. Only, their medical history means that the ability, or option, to do that is taken away from them.

Undoubtedly, there are some out there who don’t relate to what I’ve said here at all. Nonetheless what I’ve seen from my research so far, is that it often takes physically disabled people a long time to get to a place where they can wholeheartedly say that they’re comfortable with how they look.

But I don’t want to wait until I’m older to be able to do that.

It’s no secret that I’m confident in my disability. Still, I don’t look at my full-length reflection. And it’s sad to admit it, but I do think that the image of me walking is gross. What’s sadder though, is that I only think these things because my legs aren’t like everyone else’s. Thus, it’s been through my dissertation research that I’ve realised how much shit I’ve internalised when it comes to my perception of my disability. Here I was, thinking I’ve always been pretty comfortable in my body, without realising that I was only ever thinking about myself from the knees-up. But these insecurities about how I look when I walk aren’t constantly on my mind – in fact, the world has so consistently shown me that my disability isn’t pretty, that I can only describe it as an ambivalent acceptance.

But fuck that. Fuck accommodating centuries of patriarchy and nonsensical beauty standards just because some of my nerves are in a knot. And fuck writing off a whole percentage of the population’s moral right to their own sexuality, simply because of their biology. I don’t see how any of it makes sense. So, I just posted a video of me walking on my blog Instagram (it’s _bettydouglas_ btw, just in case I haven’t bullied you into following it yet) as my way of showing that I’m trying to fully accept this Spina Bifida. I can’t promise I’m going to look at my reflection now every time I walk next to, or towards a glass window, but I’ll try not to look away so enthusiastically when I spot my reflection.

A day in the disabled life

A day in the disabled life

by elizabethmdouglas ♥ 0 Leave a Comment

The other week someone asked me what a normal day with my disability is like, and I laughed.

Like many, this person was looking for me to recount a complicated series of events that measure up to the stereotype of an arduous, pitiful day of living with Spina Bifida. Only, life isn’t like that, and my answer to this strangely-worded question will always be the same: it depends on the day. I will say however, that by having my first blister in 3 years a couple of weeks ago, and living more on my own than I ever have before, I’ve started to think about and recognise the number of things I do, and things I know how to do, which simply don’t go through the minds of many of my peers.

I look at my feet religiously every morning and every night: I check for tiny little differences from what it looked like the last time I looked, and I press on my scar tissue to feel if it’s weakening because god knows it can decide to weaken at any given time, for absolutely no reason. With my blister – which I thought had healed, but it hasn’t completely – I have to constantly apply this gel my doctor gave me which dehydrates the wound to constrict the blood vessels and hopefully heal the blister more quickly. Just a few days ago some old blood from when the blister had been active came out whilst I had my shoe on, and as always, I only noticed this once I took my shoe off and saw the blood on my sock. I was at my friend’s house at the time and asked her for some antiseptic, she said she didn’t have any, I made her laugh by saying ‘that’s privilege’, and then I asked her to boil some water and put some salt in it because I know that that’s the next best thing to sanitise a wound. Then amongst all of the practical things I do, at the minute I’m having to weigh up which social events I can go to, whilst also factoring in the amount of walking I’ll need to do for lectures, whilst also wanting to continue to have fun with my friends like I was before my foot decided to be a dick.

And regardless of whether I have a problem or not, there are always days when I put my shoes on and my legs feel weak: I’m tired, I trip more often, I’m self-conscious of the possibly exacerbated limp to my walk. If the pair of shoes I’m wearing are new, I can tell that all of the structure is in the right place because as I walk my feet try their very best to revert back to their naturally deformed position, but the hard leather pushes them to where they should be, making walking both easier and stiffer than before.

I know how to make a perfectly flat bandage for any tricky angle or curve on my feet, and how to spot it when an infection is tracking towards my ankle. I could tell you exactly the type of medication I need if I get an infection, and I could tell you a million tales of when I’ve had to take it. In recent years, I’ve learnt that Spina Bifida also means that I can occasionally experience bladder retention when I’ve had too much to drink, meaning that I temporarily lose the ability to empty my bladder on my own and I have to catheterise myself before the pain starts and I have to go to A&E. It’s not a nice thing to have to do, and it hurts the next day.

Knowing all of these things (and more) is second nature to me because I have to know them, and I’ve always been taught to acknowledge that it could be so much worse. But by just getting on with it, I’m not sure that I ever take the time to consider how tiring it can be to have all of this in my head and nobody to acknowledge that I’m having to think about it.

When I was a little girl, I didn’t know what was going on. I didn’t know or care that I walked funny or that my feet were different to everyone else’s. I started to clock it when I was having operations; when there were times that nurses came to the house every day to dress my foot, and I missed out on things my friends could do because I was in a wheelchair. Then I became a teenager, and I got angry about it, or I ignored it, and I didn’t look after my feet the way I could’ve. Now we’re here, I’m an adult, and I know how to do it better than anyone else. But the one thing – my biggest crutch – that I don’t have as much as I did when I was younger, is the ability to just look at my parents when I’m weary from it all and see that they know. So I miss that look sometimes.

I had an extremely happy childhood, a wonderful adolescence, and so far so good when it comes to adulthood. But every now and then I step away from the monotony of everything I know I have to do, to realise that Jesus Christ it’s a lot. It could be worse, and everyone has things they cope with in life, however, that doesn’t mean that I won’t have moments when I’m a little tired by it.

Thus, I’m afraid that I don’t have a neat or interesting ‘day in the life’ for you because that’s not how this disability thing works. Or how anyone’s life works for that matter. And let me clarify that I didn’t type this searching for pity, or for a little moan. In my head, I think that by writing this down and publishing it I’m trying to give myself that look of acknowledgement that I can only get from my parents because no matter how they try, my friends here can’t do it yet. They’ve simply not known me long enough. And away from all of the clumsy self-psychoanalysis, this blog is another attempt to show you as much of my disability as I can communicate through words.

So there you go, now you know that if you’ve ever got a nasty cut or blister that needs nursing then I’m your girl. I’ve got the personal first aid kit of your dreams mate.

Is physical disability really that much of a turn-off?

Is physical disability really that much of a turn-off?

by elizabethmdouglas ♥ 0 Leave a Comment

I remember in my first year of university, I was asked by one of my friends whether I thought that my physical disability had ever meant that people found me less physically attractive. (He had perfectly sound intentions by the way, and knew that that type of questioning wouldn’t offend me, so we’re good.) My short answer was yes; not because of any insecurities, or because I was fishing for pity-filled compliments, but yes because I’d seen it happen right before my eyes. I’ve seen lads begin to chat me up, then at the mention of a disability, turn the other way, and I’ve consistently had more success on a night out when I wear trousers to cover my shoes, or when the place is too full and too dark for anyone to see.

As real as they seemed, these were still always just suspicions derived from body language and facial expressions. So I’d wonder. Could it really be true that the sight of some metal bars on a young woman’s shoes is enough to intimidate? Is physical disability that much of a turn-off?

This week I read an article where George Robinson (the actor who plays Isaac in Sex Education) spoke to the BBC about sex and disability: two words you rarely see mentioned in the same sentence. I won’t summarise the article here as I’d prefer you read it yourself, but one part which really hit a nerve for me was when the reporter wrote that in 2014, 44% of the British people asked said that they wouldn’t consider having sex with someone who was physically disabled. And I emphasise ‘consider’ here because that wording is particularly cutting.

I could go on and on unpacking this statistic, but what I’d like to first draw your attention to is the fact that the term ‘physically disabled’ describes a hugely diverse group of people, and yet it seems that society associates it exclusively with paraplegic wheelchair-users. That in itself is mad and highlights so many issues in society’s narrow understanding of disability, however, my main concern today is the suggestion that physical disability strips a person of their sexuality. If you’re disabled then you have no sex drive, you’re unable to have sex, or whatever type of sex you can have isn’t normal and is shrouded in stress and embarrassment, and you’re not sexy.

Frankly, I never thought I was sexy. And I attributed that to the layers of misogyny which group young girls and women into the boxes of cute, pretty, sporty, or sexy. (We can unpack those toxic elements of the patriarchy another day). But now I realise that it was my being disabled which contributed to the surprise and disbelief I felt if someone called me sexy. I’d just never known that I had access to that word because no one who looked like me had ever been described as it. At least, I’d never seen it.

Thus in my late-teens, when talking to boys and developing crushes on them, I’d always envisioned that my disability would be peripheral in our relationship and it’d be something that I’d prefer him to ignore as much as possible. I’d want support when I really needed it, but if I had ever gotten a boyfriend then I’d wanted him to treat me like a ‘normal’ girl. Depressingly, hindsight makes me realise that 17-year-old me was equating ‘normal’ with able-bodied. Then when I went to university I started speaking to a lad who never once asked about my disability, after months and months of talking. I found myself conflicted because it was sort of what younger me had always wanted, but older me didn’t see how we could ever start a relationship if such a big part of my life was going to be ignored: it didn’t seem practical.

So now I’ve decided that I want something truly radical: I don’t only want a romantic partner to be interested in and tolerate my physical disability, I want him to find it attractive. I want him to look at my surgical scars and find them as beautiful as he does any other part of me. I don’t want to have to reject my disability in order to feel sexy. But as any reader of my blog will know, I’m yet to experience much more than a casual relationship with a lad so I can’t end this on a Disney note where I say I’ve found everything I’ve ever wanted and here he is *ta-dah*. Nonetheless, there’s one specific experience I’ve already had where I got a glimpse of what it might be like.

One morning I woke up next to a young lad I’d slept with a few times before. I cared for him, and enjoyed his company, but I didn’t have any romantic feelings towards him. I was used to him being affectionate by moving my hair out of my face as I slept, or kissing my shoulder, but on this particular occasion he took it further, as I woke up to feel him carefully tracing the curves, indentations, and lines of the lump on my lower back. That lump is the root of my disability, and it’s been something I’ve tried my hardest to look at as little as possible, let alone touch. So as I woke up, I realised what he was doing, and I lay there as he gave the most emotionally and physically vulnerable part of my body more love and attention than even I had ever given it. It was nice: I felt safe.

That young lad, even though he probably had no idea what he was doing, emphasised just how important it is that when I find someone I want to be with, they have to understand and love my disability as much as they love every other part of me. It’s not something to be ignored, and it’s not something which strips me of my sexuality: people and prejudices do that. But I don’t believe that the 44% statistic is rooted in malice; rather, it’s rooted in ignorance and a misunderstanding of disability. We all want love and to feel wanted, but I don’t see why my physical condition should decide whether I qualify for that or not.

I’m physically disabled, I have a sex drive, I enjoy sex, and just like everyone else, the details of how I like to have sex are only your business if I decide that you can make it that far.

What I can’t see can’t hurt me

What I can’t see can’t hurt me

by elizabethmdouglas ♥ 0 Leave a Comment

I’ve always thought I was fortunate to have not suffered from intense anxieties and insecurities in my teens. Granted, there have been times where I thought I looked fat or any of the other standard moments of self-criticism, but generally speaking, I was happy with who I was and what I looked like. The only thing I ignored in order to continue being comfortable in my own skin was how I look when I walk. I didn’t look when I walked past shop windows or any reflective surfaces, and I asked friends to delete videos where you could see me walking; I just didn’t need to know what that image looked like.

So naturally, when my university friends were like ‘do you want to do the college fashion show and walk on a stage in front of hundreds of people and have the whole process videoed and posted on social media for even more people to see?’, my reaction was ‘uhhh no, not really’. But the second I told them why I didn’t fancy doing that, I got bombarded with accusations of hypocrisy because as they quite rightly pointed out, I can’t be on here sporting for diversity and inclusion if I’m not going to practice what I preach. Thus, I took my disabled arse up onto a pretty big stage and I stomped along it in front of hundreds of people. And I even did a walk in my underwear lol, since if you’re gunna do it, you may as well go all-out, right?

I’ve said many times before that I don’t know if I’m proud to be disabled, and that a lot of what society encourages me to do is to blend in; I’m told by the abstract powers that be that I should shut up and get on with it, and try my utmost to pass as able-bodied to get by. I know that I don’t love being physically disabled – it’s a bit of a pain – but I am disabled, and I don’t want to change that because god knows what I’d be like if I wasn’t. However, the way I feel about myself doesn’t change the fact that society rarely gives me examples of a disabled body being deemed as beautiful without there being some subtext of pity. And even though I’ve got an ego, I can’t say I’ve got a burning desire to use my body to change the way people understand disability. But I would like to trust that strangers could find me interesting, and clever, and sexy, knowing full well that I’m physically disabled; that they won’t go from respecting me to patronising me the second they hear my medical history.

What I’ve recognised though, is that I can’t keep blaming the abstract idea of what ‘society’ thinks for my insecurities. Yes, disabled people might not be plastered all over billboards and well-represented in films and TV, and yes, disability might be something the world wants to hide away and forget about. But when it comes to individual people, I’ve met so many people of all ages and backgrounds who accept me as interesting, clever, and sexy partly because I’m disabled. So maybe it’s a me problem; maybe I’m the only one who’s judging the way I walk and the shoes I wear.

It’s exciting being disabled, isn’t it?

It’s exciting being disabled, isn’t it?

by elizabethmdouglas ♥ 1 Comment

As some of you may know, next year I’ll be studying in Japan for my third year at university. This is obviously very very exciting, and something I’m really looking forward to. However, the prospect of going to live on the other side of the world for a year when you have a physical disability isn’t ever going to be stress-free.

Now, you might think that my already having been on a gap year should make this a piece of piss, but the part I fail to mention when speaking about my year abroad, is that each trip was never that long, and I came home for respite and hospital appointments in between all of them. Thus, fully moving somewhere for months on end poses different issues to the ones I had to deal with when I was 19.

For example every few weeks, I go to visit one of my doctors and she treats my foot. It’s not complicated treatment, nor is it particularly specialised. So, you might assume that it’ll be pretty simple and easy for me to go to Japan and find a doctor there who can do the same thing…Well the problem with seeing a random doctor in a completely new country is that that medical professional isn’t familiar with my biology, and my ability to maintain a healthy condition of my feet does hinge a lot on my doctors knowing exactly how far they should go with the treatment. Therefore, trying to communicate that to a doctor who’s language I don’t know inside and out won’t be an impossible task, but it’s still pretty daunting.

Another fun thing I have to sort out is my university accommodation for when I’m in Japan. Tediously, I can’t walk very far and considering the fact that I won’t be able to drive whilst there, I’m going to have to be hyper-aware of how far I have to walk to go anywhere. Therefore, I have to make sure that I find accommodation close enough to my lectures and public transport so that I don’t end up getting a blister/infection in the middle of my year abroad. This isn’t an easy task when you can’t visit the place beforehand to figure out whether the website’s version of ‘it’s a 5 minute walk’ is actually true or not…but we do our best.

The main activity for this week though, was travelling down to Leeds for a hospital appointment to discuss how the hell I’m going to have access to new pairs of shoes when I’m 5,833 miles away from Leeds General Infirmary. Thankfully though, my doctor is a bit of a legend and he’s already started the process to order 6 pairs of shoes, 3 pairs of insoles, and 2 pairs of callipers, so that I can go to Japan with enough footwear to (hopefully) see me through the full year. This will then mean that I shouldn’t have to worry about my shoes breaking when I’ve got absolutely no way of getting new ones. So that’s already one part of the puzzle solved – well, it will be when I’ve actually received all the shoes and have confirmed that there aren’t any problems with them…but baby steps people, baby steps.

I don’t often mention these parts of my life because I can’t imagine them being interesting for anyone else to hear about, when they’re definitely not very interesting to me. But then when I’m having a stress-rant to my housemates about the hundreds of things I need to sort, they make it clear to me that these are the parts of disability that the wider world rarely gets access to. I shroud what I find tedious in euphemisms like ‘oh, I just deal with it’, or, ‘I’m disabled, I have hospital appointments all the time’, and then I never actually give you comprehensive information about how Spina Bifida affects my life on a day-to-day basis. Obviously, I prefer the discussions relating to self-identity or societal perceptions because they’re more enjoyable for me. But clearly, if I’m asking the able-bodied to help make my life easier, then I should give you a helping hand by telling you what I’m actually dealing with.

I can’t promise the tales will always be exciting though…but hey, maybe if people know more about the tedious parts of being disabled, then someone will want to find ways to design or invent something to make that tedium go away. And that’d be pretty cool.

Is there a better way to do this?

Is there a better way to do this?

by elizabethmdouglas ♥ 0 Leave a Comment

Ever since I started university and began writing about my disability on here, I’ve had to sit down and decide what I truly feel about it. And the short answer is: I’m not really sure.

Whenever a person has a physical or a mental disability, we have this culture of telling them that they’re ‘so brave’ and that they do ‘so well’. These sentiments are incredibly valuable for some, because hearing them can really give individuals the boost of reassurance or confidence that they need. But for me, this kind of phrasing harbours weird implications. It suggests that I have some sort of choice in the matter, and often its said in an acutely patronising manner, so it rarely makes me feel as good as the person saying it intended. But then again, a huge part of being disabled is to be constantly patronised…you build up a tolerance for it.

However, when I think about what I want people to do, how I’d prefer them to broach the subject, I never really have an answer because establishing how to ask a disabled person about disability without patronising them, isn’t something anyone seems to be interested enough to talk about. I want to be treated as ‘normal’, but then I also want the ways my life can be objectively harder sometimes, recognised. I want people to feel comfortable enough to ask me questions so that they can learn about disability, but I can’t always control my emotional reaction to the way they ask. I want to be a person separate from what restricts me, but I don’t ever want to reject such a huge part of myself.

You see? Nothing’s ever simple.

This blog allows me to have a huge platform to talk about my disability on my terms – something which minority communities are rarely afforded. But I want to do that in a completely honest way: I’m not going to be the perfect ambassador for the disabled, because I’m constantly re-evaluating how I feel about the way I was born. I don’t know if I’m proud to be disabled, because my disability itself gives me nothing but grief. What I’m proud of are the ways I manage to live with it – but even then, I don’t see anything to be particularly proud of, because I don’t see any other option. Maybe this isn’t the correct way to be, maybe my logic is skewed. But I’ve never been told how to feel about my disability, so I’m making it up as I go along.

Not my favourite birthday present

Not my favourite birthday present

by elizabethmdouglas ♥ 0 Leave a Comment

On Monday I turned 21, had a lovely time, ate lots of food, got a free shot thanks to my birthday badge: all-round good time. Unfortunately however, I woke up the next day to find a huge blister on my right foot. 😦 And for most people, this probably wouldn’t have put much of a downer on their week but in my world, a blister can seriously ruin my life for a while.

This time I didn’t cry or freak out about it when I saw it, I just kept saying ‘it’s okay’, ‘it’s fine’. And it is okay because I know how to deal with it, plus it’s lockdown anyway so it’s not like I’ve got lecture halls to go to or anything. But it’s upsetting and annoying, and I don’t live with my family anymore, so I don’t have anyone close by who actually knows how upsetting and annoying it is.

I guess that that’s part of growing up though, isn’t it? You move out, and you experience things on your own – without that safety blanket.

It’s not like I’m completely new to this; I went travelling for a huge chunk of last year, and am going into my second year at University now. However, I’ve been lucky for a long time with my feet because I’ve not had any big complications. This has largely been due to me looking after myself, and having all the correct things in place to make sure that I’m not caught by surprise. But sh** happens, and it can happen completely out of the blue.

What can add even more stress and annoyance to times like this, is the fact that if I continue to be optimistic around people, that can imply that the situation isn’t a big deal. But I won’t sit and mope about this blister because I don’t want to waste my time like that, and I don’t want people to think of me as someone who whinges all the time. Plus, most have never seen me in a wheelchair or with an infection anyway, so they couldn’t understand if they tried.

Saying this though, last year I remember feeling really frustrated and lonely at times when my new friends didn’t understand my disability. It wasn’t because they weren’t trying to learn about it, or trying to help me out, it was because I know that they need to see it be bad before they can better understand what help I need. But then obviously, I’m not itching for it to get bad enough to show them…

You have to acknowledge that getting to know people properly takes a lot more time than freshers week, or a few months at university. It can be difficult to realise that the people you view as some of your closest friends don’t actually know you that well. But people do their best, and what they don’t know now, they’ll learn after time.