Tag: physicaldisability

What do you mean you can’t feel it?

What do you mean you can’t feel it?

by elizabethmdouglas ♥ 1 Comment

When we think about physical disability, a lot of the time many of us conjure the mental image of a severely physically disabled person who’s permanently confined to a wheelchair, miserable, and in serious need of society’s help. And if you’ve read enough of my blogs, then hopefully you’ll understand why this way of thinking is immensely damaging to literally everyone – regardless of whether you’re disabled or not. But today, the assumption about disability that I want to focus on is the one we make about the relationship between physical disability and pain.

A lot of the time, whether we’re watching an episode of DIY SOS, or Children in Need, or Me Before You, many of us assume that if a person has mild to severe physical ailments, then they’re probably in a lot of pain because of it. You hear that I’ve got Spina Bifida, you see me walking down the street wearing callipers, or getting out of a car after putting a disabled badge on display, and you figure that I probably have to take medication and I experience pain in my feet. (Obviously, you might not think about it at all, but if you are thinking about it, then this is often where the brain goes). It’s not an unfair assumption, and I’m not offended whenever people ask me whether I’m in pain, but it always makes for a fun back-and-forth when I then say that actually, one of the reasons why I develop problems is because I don’t experience any pain in my feet.

This is normally how it goes:

*at some point in the conversation the fact that I’m disabled has cropped up*

Them: So is it really painful?

Me: No, I actually don’t have much sensation below the knee on either leg. I can feel the inside, but not the outside. And I can’t move any of my toes – except my big toes, but even then, not really.

Them: Woah, that must be weird. Nice that you can’t feel if you’ve stood on something, though.

Me: Umm…hahahha…not really…If I stand on something, then I’m not gunna feel it, so I’m just gunna keep walking on it until it gets wedged further into my foot. My shoe could be filling up with blood and I’m not gunna know until I take it off. Then I’ve also got really bad circulation, so that’s going to take ages to heal. So it’d be kind of helpful for me to be able to feel it because then I’d know to not walk. But I get what you mean hahaha, it does mean I can kind of ignore it if I have a problem.

*and, scene.*

Basically, my relationship with pain in my legs is love-hate. If I had pain, then we probably could’ve avoided most of my foot problems – let alone the COUNTLESS internal monologues of stress, trying to guess whether something’s kicking off in my shoe – but obviously, I also don’t hate that someone can stand on my foot and it’s all good. Plus, it does make for hilarious stories, like how one time a guy told me he’d been playing footsie with me under the table for a literal hour and I’d had absolutely no clue…Or how every time somebody apologies profusely for standing on me, or accidentally kicking my foot, I tell them they can do it again if they want; it doesn’t bother me. Or that time that I didn’t know my friend’s house had underfloor heating until I fell over.

If there’s one thing that I’m trying to do on these online pages when I talk about disability, it’s to show you that that word is used to describe an infinite amount of variations of the human body. We use it when we deem something to have ‘gone wrong’, and in viewing it negatively, we always assume the worst. And I’m not saying that disability doesn’t come with problems – of course it does. There are disabled people who experience huge amounts of physical pain, who have to take loads of medication, or who are reliant on someone else to help them complete the most basic of tasks, but that isn’t all their lives are, nor is every assumption of what a disability is relevant to every disabled person.

But I’m not bringing this up to incite the ‘omg I hate people, why is everyone so closed-minded with their understanding of disability?’ response. Honestly, as you can see in the generalised example I gave before, I have a laugh with pretty much every person who asks me about how much pain I experience.

The fact is, society has a super problematic understanding of, and approach toward disability, but to sort that out, we’ve got to have conversations where it’s comfortable enough for somebody to get it wrong, then learn why without being humiliated or villainised for not knowing something that they have no direct experience of. As the person who’s being stereotyped, and treated a certain way because of lame assumptions, that can be difficult sometimes – understatement of the year. But you’d hope that by staying patient, and explaining it this time, the next time that that person comes across somebody with a disability, they’ll be better equipped to ask questions rather than make assumptions.

You’d hope.

I love it when you patronise me x

I love it when you patronise me x

by elizabethmdouglas ♥ 1 Comment

Having a physical disability since birth has impacted my life and personality in more ways than I’d ever be able to measure, which is why it’s always been odd when people have asked me whether I’d wish my disability away if I could. Clearly, the implication here is that life with a disability is seeped in stress and depression, so people think that it’d be totally understandable for me to sit there, teary-eyed, wishing that I wasn’t a person with Spina Bifida. And don’t get me wrong, there are moments when I feel this way (after all, it doesn’t always seem fair that I have this extra sack of sh- to deal with) but life is difficult for everyone at times, and I don’t know who or what I’d be without my physical disability. This doesn’t make me proud to be disabled or particularly enthused that I am, it just means that asking whether I wish I wasn’t is a bit of a silly question.

And yet, I’ve been asked this question on more than one occasion, so obvs I’ve given some thought to whether there are aspects of my personality that stem directly from having a disability, and whether there are ones that I’d probably have anyway. For the most part, I think that many of my personality traits have probably just been amplified by living with Spina Bifida, but I will say that I don’t think that this is the case for my silliness or adventurousness. If anything, I’ve had to make an active effort to not allow the disability to crush those natural personality traits. But on the other side of things, I do believe that there are also parts of my personality that have been formed as a direct result of living with Spina Bifida. For example, I have an incredibly low tolerance for being patronised.

Everybody’s experience with a physical disability is different, but from my short life so far, I will say that being patronised by literally anyone is just part and parcel of being disabled. It happens at hospital appointments, at school, amongst friends, at pretty much any public event you go to where you ask for disability assistance, in airports, in the doorway as you try to get into a club; honestly, I’ll be here all day if I list everywhere I’ve been patronised so we’ll leave it there for now. But what I sense you’re wanting me to explain, is how exactly people have been patronising towards me, because saying that it happens to me all of the time has likely made you a little self-conscious about whether you’ve been an active or passive bystander in the treatment of the disabled by the public. Or at least, I hope that that was a little thought in your head just now.

I’m not going to lie to you, there’s a specific voice that some people use when speaking to disabled people which puts my back RIGHT up when I hear it, but it’s almost impossible for me to describe with words. I’m even getting irritated just thinking about it (lol), but basically, people talk slower and softer, as if the words coming out of their mouths might break poor, defenseless, disabled me, even though quite often, the words they’re actually saying are denying me the help or respect I just politely asked for. Then there are the moments when you’re just straight-up dismissed or ignored, but honestly, I feel like I don’t get triggered so much by those because at least I’m not being treated as if I’m so fragile that one wrong move and I might break.

Undoubtedly, I’m also patronised because I’m a young woman (no surprises from the patriarchy there), it’s just that the physical disability provides an extra opportunity for society to infantilise me. Which is fun!

Sometimes I feel like my natural tendency towards being silly and positive means that I don’t always come across as a woman who can hold her own, but the fact is that people wouldn’t respond to me well if my reaction to being patronised because of my disability, age, and/or gender was blind fury – even though sometimes that’s exactly what I feel. And I’m not saying that I experience these sorts of things on the daily, but when I do, it can take everything within me to stay calm because in the moments when I have reacted wholly honestly, nobody likes or listens to a hysterical woman. So you smile and wave, you shelve the fury, and you bite back just enough so as to stand up for yourself, without losing their attention. It’s infuriating, but it’s a skill that you have to have if you’re disabled (and female), thus, it’s not one that I’d like to wish away.

But trust me, once you’ve recognised the ‘voice’ I tried to describe before, it’s something you’ll never un-hear. So please, for gods sake, try to not be the person to use it.

One operation, two operations, three operations, four…

One operation, two operations, three operations, four…

by elizabethmdouglas ♥ 0 Leave a Comment

If you’re an avid reader of my blogs, then it’s likely that you’ve seen me mention that I’ve had six operations because of my disability. But what’s funny, is that a lot of the time when I say these things about my lived experience with Spina Bifida, what I’m actually doing is repeating the speech I’ve always known as how to explain my disability to others – I’m not really thinking about the words I’m saying. For instance, it might surprise you to know that even though I talk about being disabled quite regularly, there are plenty of days when I almost have to remind myself that I have Spina Bifida. This is because the details of my condition and the way they physically ‘affect’ me aren’t constantly on my mind. But the times when this dissociation from my own disability gets the weirdest, is if I sit and properly think about my operations.

I had my first two operations when I was a baby and if I’m honest with you, I’m still not entirely clear on what they were for, what they were called, or how the procedures actually went. My basic understanding is that the goal was to drain some of the fluid in the lump on my back using tubes; I know they didn’t really work, and I know that I’ve still got a small plastic tube in my stomach because the doctors didn’t want to cause me any more trauma by making me have another operation to take it out. So, I’ve got a completely harmless plastic tube inside of me. Which (when I think about it) is weird, right?! But I don’t remember those operations, I just remember always knowing that that tube is inside of me because I can see the scar.

My next operation was on my right foot. My parents have told me that as a baby my feet were actually fine, and it was only when I started to walk (I think), that my right foot started to curve inwards so that I wasn’t placing the pressure where it should go and we started having some issues. Hence I had an operation to correct the positioning called a tendon transfer where they move a small piece of tendon from one side of your foot to the other to basically stretch it in a different way, so the bottom of your foot lies flat on the ground as you walk. (It’s difficult to explain in words…you might just have to google that one to get a visual aid). And again, I don’t remember being involved in the operation, but I know that I was because I can see the scars.

My final three operations were on my left foot – affectionately named by one of my best friends as the ‘attention-seeking foot’ because this little bugger has rarely stopped giving me grief since it decided to copy my right foot and curve inwards. The operations I had on this banter wagon were exactly the same as the one on my right foot, the only difference was that it took three tries (classic) because the first one got infected so you could see the bone from the outside, then the second attempt flopped, and by the third go, I had no more tendon left to transfer so it was less that the operations had ‘worked’, and more that my lovely surgeon had done the best he could. – He did kind of nail it tbf. I was in a wheelchair for 18 months during this part of my childhood.

What’s odd though, is that the time when I had these operations isn’t really something I recognise as my life because it all just sounds so medical. Obviously, I know that it happened because I’ve got scars and medical records to show for it, but I don’t ever remember thinking of myself as this regularly hospitalised child. Although, that isn’t to say that I don’t have memories of being in hospital gowns, and spending months with nurses coming to my house to dress my foot every day before I got in my wheelchair to go to school, or how the fever felt when my foot was so infected that the bone was visible. I remember all of that viscerally. But when I see the home videos of the little girl stumbling around, walking faster than her Spina Bifida feet could carry her, it’s difficult for me to watch because that level of blatantly obvious physical disability isn’t me in my head.

It goes without saying that I have my parents and my big brothers to thank for this, because if they’d ever brought attention to just how pronounced my disability was in my early childhood and restricted me according to that, then I wouldn’t be what I am. But then the funny flipside of being brought up this way, is that seeing images of little me limping around after my big brothers is bizarre and in some ways a little upsetting because oh my god, that’s me. I’ve heard all these stories about it but look! Look how much I couldn’t walk.

Still, in these same photographs, videos, and hazy memories of when my body was showing the purest form of my Spina Bifida, I couldn’t have cared less about it. This was also aided by the fact that no matter how bad my feet are, I never experience any direct pain because I don’t have any feeling in either of my feet. Therefore, infection or not, limp or not, I ran and explored as much as any other four-year-old did and the idea that I was ‘disabled’ was totally irrelevant to my experience of life. But my brain will always be wired this way, so it can get strange sometimes when I realise just how disabled I actually am.

Employability first, disability later

Employability first, disability later

by elizabethmdouglas ♥ 0 Leave a Comment

Since moving to London last month, I’ve applied for part-time jobs which will allow me to have enough money to live, whilst also leaving room for me to pursue a career in radio and broadcasting. And during these job applications and subsequent interviews, I’ve been repeatedly faced with society’s favourite question about disability: how does your condition affect you on a day-to-day basis?

Everyone loves this question; it offers neat and comfortable parameters within which a disability can be defined and the methods for ‘dealing with it’ clearly laid out. Yet, every single time a person asks me this question all I ever feel like doing is laughing, because even though their intentions are probably good, the question makes literally zero sense.

On the surface, what’s being asked is how my Spina Bifida will impact my ability to work – or, if the government is the one asking, then it’s more about how it will impact general life. But the problem is that this seemingly simple question doesn’t have a simple answer, because it assumes that disability is this one fixed condition, which has these fixed symptoms, which impact everyone who has this specific disability in these fixed ways. Such an organised experience of disability would be nice – trust me – but it’s about as likely as pigs flying tomorrow morning.

Each time I apply for a job, I’ve carefully considered whether I think the role is something I can physically manage, so I don’t feel it necessary to tell the employer I’m physically disabled at that point because I’d prefer to be judged in the same ways as all the other applicants. Plus, at this stage, I don’t think that my medical history is anyone else’s business. However, when I get to an interview and the employer asks if I have any questions, that’s when I’m explicit about my needs – basically, I just need to be able to sit down regularly to relieve the pressure off of my feet for a bit. But by then, I’m 90% sure it’s wouldn’t disrupt my ability to do the job and it’s something the employer could sort out pretty easily. If the employer agrees (which, more often than not, they do) then we start filling out all the HR forms so I can be put on rotas.

This is where it can get a bit sticky because I always have to send over my medical information to prove my disability so the company can do a risk assessment, but that mountain of paperwork paints my condition as a ticking time bomb because all that’s mentioned are my operations, blisters and infections. But, as I explained to the lovely lady who recently gave me one of my jobs, the government (a.k.a. who the paperwork is written for) only cares about when the Spina Bifida has been at its worst; there’s no room in the notes for the million and one ways I take precautions every day to ensure that I’m fine.

So why is it a bit silly to ask me how my disability affects me on a day-to-day basis? Well, because I don’t know which days you mean. I could tell you the days when my foot is in a good condition, but how far are you asking me to walk? Are my shoes new? Is it hot outside? Am I walking uphill, downhill, or on a straight road? Can I drive part of the distance? Am I tired?.. Is there a correct answer to this question?

Obviously, I know that in the context of employment, companies have to cover their own backs and make sure that they’ve got the correct provisions in place to look after me. But the point I’m trying to make is that even though life with a disability can’t be explained as neatly as we might all wish it could, I still want and need to work, and ‘catering’ to the needs of disabled people in the workplace actually isn’t that hard when you listen to the person with the condition. I’ve worked all around the world in shops, and schools, as a summer camp counsellor, in radio stations and in car dealerships, and if I ever had a problem with my feet whilst employed, I communicated with my boss and I dealt with it just like everyone deals with random problems in life.

So, I don’t have an issue with employers asking a person how a disability affects their daily life, I just hope that they’re not surprised when they don’t get a simple answer. Also, I hope that there’s an acknowledgement that the person with the condition has probably put a lot of time and mental energy into deciding whether they can do the job before they even applied, and thus if they’re qualified in every other way for the role, then it’s no one else’s right to tell them what they can and can’t do.

Making London moves

Making London moves

by elizabethmdouglas ♥ 0 Leave a Comment

I’ve never been a person who’s particularly scared of change, especially when that comes to living in a new place. In fact, once I finished secondary school I worked three jobs so I’d have enough money to go travelling before I started my university degree. Then when it came to moving to university, I definitely cried when saying goodbye to my parents but that’s just because they’re both so much fun to be around; I don’t think that I was actually that daunted by moving away from home. But last week, with the help of my parents, I moved all of my things to London and even though I’ve lived in a lot of new places over the past six years, this time the first couple of days in my new home didn’t fill me with excitement; all I could feel was terror.

When I’ve travelled to different countries, I’ve always only been there for a certain amount of time. Therefore, even if I was living in a massive metropolis like Seoul or New York City, I could square all the walking distances and activities in my head because I knew that once I got home I’d be able to go to the same doctor who’d been seeing me since the age of three, she could treat me, and if I had done too much walking then it’d be fine because I could stay at home and rest for a couple of weeks before I went onto the next country or back to university.

So my utter panic at now living in London was/is that this is now my every day and I don’t have an opportunity to overdo it and then rest for a few weeks if the condition of my feet does worsen, because if I get the blister then I can’t go to work and if I can’t go to work then I can’t make my rent. Not to mention the fact that I now have to rely on totally new doctors who don’t know the nature of my disability and thus, may not be able to help me in the way someone who’s seen me through all the operations and every type of blister could. Plus, I don’t have a job yet because working in the broadcasting and radio industry requires you to 1) be in the place where it all happens, 2) be able to network your way into the buildings and then 3) work from the bottom to the top, if the bosses judge that you have the ability to make it up there. So, I have to find a part-time job in order to make my bills and give me enough time to put my graft into radio and broadcasting – that part sounds easy though, doesn’t it? “Just pick up some shifts at a bar, restaurant, or cafe!” I hear you say! Only, I physically can’t be on my feet all day and the hundreds of other people also looking for part-time work can, so my chances of getting the work are slimmer and waaayyy more stressful than when living in a smaller city.

Thus, I’m not frightened of this move because I think that I can’t do it; I’ve always been a total grafter. Nor am I frightened because I’m scared to live in a new place, far away from my family. The overwhelming panic that I’m trying not to think about comes from a fear that this ridiculously inaccessible world will stop me from being everything I know I can be, just because I can’t walk far or stand for long.

But it’s not helpful for me to wallow in this fear, because if I did, then I never would’ve gone travelling or anywhere further than twenty minutes down the road. So you have to push it aside and focus on controlling what you can, rather than catastrophising all the ways the risk you’ve taken could end in disaster.

Once I’d moved a couple of things into my new room my parents asked me how I felt, and I tried my best not to let the nerves show because I didn’t want them to drive away feeling worried about me, but they, and my closest friends, all assured me that it’s totally fine to be frightened of this; being scared doesn’t make you weak or foolish. Living in this city with a physical disability is no small feat and I’m bound to have a bit of a moment every now and then, so the best thing to do is to quite literally take everything one step at a time. Then, once I know how to look after my feet in the big city, I can explore!!!

Cover those callipers!

Cover those callipers!

by elizabethmdouglas ♥ 0 Leave a Comment

I was seventeen the first time somebody complimented my shoes. I remember, I was walking up the stairs in the secondary school I’d been attending for seven years already, when a new member of staff who I didn’t recognise came in the opposite direction, took one look at my callipers, and said ‘I like your shoes’. I stopped dead on those stairs feeling a mixture of shock, outrage, and confusion because I thought that he was taking the piss and I wasn’t exactly sure how to react to a teacher being blatantly cruel to me, but then I looked at his face I realised that this compliment was genuine; it didn’t come from a place of pity and it wasn’t him trying to wind me up. So I gave him a stunned look, said ‘thank you’, and went to tell my friends about what had just happened.

It’s strange because I know that my reaction to this type of situation implies that I’m insecure about my shoes, but I think to draw that conclusion is too easy. The fact is, that I know I’m physically disabled, I know I have to wear these callipers to correct the positioning of my feet, but wearing these shoes wasn’t a choice I ever got to make; I don’t particularly like the way they look, they mess with the silhouette of my outfits, they draw people’s attention to a part of my body I’d rather not be stared at, and the sight of them can make me be treated very differently. Yet, regardless of how I feel about them, there is absolutely nothing I can do to change whether I wear them. So, it’s not that I’m insecure about my callipers and my disability, it’s that I don’t necessarily enjoy the judgements people make of me when they see them – and I can’t really fathom them looking stylish…

Now I know what many of you might be thinking: if someone judges you because of two metal bars on each of your legs then that’s just their ignorance, it shouldn’t be something which you allow to bother you. Fair point, well made. But what I’ve noticed when speaking to people about this kind of thing, and then going out and existing in the world, is that individuals have absolutely no idea of the difference in how the able-bodied world treats me when they can see my callipers, versus when they can’t.

Let’s take going to the airport for example, since I was at JFK last week. I always wear trousers which cover my shoes when I go to the airport because it’s a place where you’re guaranteed to see a lot of people, you might be tired (maybe a bit stressed), and for me, I always know I’m going to get searched because my shoes will set the metal detector off, so I don’t want my callipers to draw any more attention to me than I’m already going to get. However, this then causes me problems when I ask for disability assistance because without those metal bars, nobody can understand how I could possibly be physically disabled enough to not be able to stand in a queue for 25 minutes; people take one look at me and they assume I’m trying to unjustly weasel my way into a shortcut. So, what do I do? I wear an outfit which shows my callipers just to avoid that hassle, even though I know it’ll mean seeing loads of people staring at them when I’m in precisely the wrong mood? Why should I have to do that?

This feels like a perfect point in the discussion to use the term many of us have seen knocking about on signs next to disabled toilets since the pandemic, and preach that ‘not all disabilities are visible’. But what I find hilarious, is that my disability IS visible! It doesn’t matter what I’m wearing, you can still see the glint of the metal bars at the base of my shoes – god knows people still give any centimetre of calliper a good stare – so I’m not sure that it’s even about how much of my shoes the world can see. I think there’s a problem that people either expect to see disability as consuming the appearance of a person, or not there at all, but if you’re the former then you’re too disabled to be anything other than that, and if you’re the latter, then you’re exaggerating and you’re not disabled enough.

I sit somewhere in between both of those ideas, and it means that a lot of the time, I’ve got no idea what I am so I just do what makes the most sense to me in a given situation. I wear outfits which show my callipers whenever I want and I switch off to the staring, but in the moments when I’d rather everything else about me take precedence over the disability, then I’ll cover them up, even if that comes with expecting to get some shit off of someone at some point – it doesn’t always happen, but it’s highly likely if I’ve covered them and then have to ask someone of authority for a bit of disability assistance. Also, you probably won’t see me going on a date, or meeting new people in an outfit which shows my shoes.

But before I leave you, I want to emphasise that these acts of hiding my callipers aren’t because I’m ashamed of them – I might not actively like how they look, but shame has nothing to do with it – it’s because having a visible physical disability encourages people to focus on it for longer than you might like them to. So even though I have nothing to hide, I hide it to take control of the situation and encourage you to look at and listen to me like you would anyone else, and then you can notice the Spina Bifida later. It’s a double-edged sword though because if I now need to ask for help, if you can’t see my shoes, then you might not believe me…

Tricky, isn’t it?

Consistency is key

Consistency is key

by elizabethmdouglas ♥ 0 Leave a Comment

No matter how much I post about my disability on the internet, I am not, and never have been, very good at asking for help with it. I can do my own TedTalk in a room full of strangers about how ‘it impacts my life’, or overshare on the internet, but internally, I still wince from embarrassment each time I have to ask someone to alter their actions to accommodate my disability.

As a little girl, I had six operations which caused me to spend prolonged periods of time in a wheelchair and at hospital appointments, but I still don’t remember ever feeling ‘different’ because of that – shout-out to some top-tier parenting from Mr and Mrs Douglas there. Obviously, there were times when I was confused and frightened by it all; I mean, I remember the fever when an operation on my left foot got infected so the bone could be seen from the outside, I remember bawling my eyes out every time my parents told me I had to go in my wheelchair, and I still physically cringe when I think about getting stitches taken out of my feet after operations. But in and amongst all of that, I climbed as many hills as my able-bodied brother whenever we went camping, and I have no memories of feeling lesser than my peers or my siblings because I was ‘disabled’. However, I’ve come to realise that this was largely due to the fact that until I was in my mid-to-late teens, my disability wasn’t my own; it was my parents’. This Spina Bifida that everyone told me about was something I knew I had, but the dealing with it was something my parents did; like any six-year-old, I just went wherever I was told with a smile on my face and a Cinderella dress on.

Stuff started to get a bit sticky when I was a young teenager though, because by this point my friends and I were old enough to go into town on our own. So, instead of having the luxury of being lifted onto my Dad’s or my oldest brothers’ backs when the walking distances started to get a bit too far, I had to rely on my 14-year-old friends being emotionally aware enough to know the limits of my disability, even though I’ve always been too embarrassed and too stubborn to bring it up. Inevitably, this didn’t go very well and there were a lot of angry tears at the kitchen table.

Then in my late teens, I did really try to quieten my ego in favour of being responsible with my feet. But that’s indescribably difficult to do when not a single person around you is having to do the same – not to mention the fact that I’ve also got a naturally adventurous, ‘go on then!’ attitude which makes me want to do things I probs shouldn’t. So I effectively had to go through a period where I mourned the fact that I was too old to ignore my disability now; I had to grow up a bit. But thankfully, the wallowing didn’t last very long since crying over not being able to run a marathon or go on a hike for four hours wasn’t going to change anything. Plus, I can do plenty of other stuff anyway.

Sometimes I do still feel the loss though, like when I’m walking through town with my friends and they’re walking faster than me, my legs are getting tired, and I’m getting out of breath trying to keep up. Or, when another person in a Council or Security uniform tells me I can’t park here, that there aren’t any disabled spaces, and that they don’t know where I can go. Or at the thought of going on a date with someone I’ve just met, them wanting to walk around, me not being able to, and having to talk about my disability before I get to say anything else about myself.

Basically, I find asking for help with my disability humiliating and exposing, and I’ve been disappointed by a lot of people before, so it’s likely that if you do offer to help me out, even though I’ll obviously really appreciate it, it’ll take me a minute before I trust that you’re not going to forget next time. I know that that can be annoying if you’re intentions are sincere, but I can’t help it.

If you do want to be supportive of someone with a disability, I think the best piece of advice I can give you is to be as subtle and consistent with your actions as you can. I might speak very publicly about disability, but even I don’t want it to be brought up in every conversation – in fact, the best-case scenario for me if I’m out and about, is you being the one to suggest sitting down or getting an uber because you’re tired. That way, my legs are looked after and I don’t feel guilty or embarrassed for making you do something you wouldn’t normally have to.

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.

My dissertation was about sex! :o

My dissertation was about sex! :o

by elizabethmdouglas ♥ 2 Comments

Considering that quite a few of you took part in the research, it won’t come as a surprise that I wrote my dissertation on whether physically disabled women are perceived as sexy by the societies they live in. (Big big thank you to everyone who took part btw). I don’t really fancy plagiarising myself here though, so I won’t go into the minute detail of the dissertation, but since so many of you contributed and were interested in the topic, it’d be rude of me to not give you the low-down of why I chose it, and what I discovered. So buckle up kids.

If I’m honest, my diss was partly another effort to understand why my love life insists on being so dire. In my first year of university, I wrote a blog about how a friend had asked me whether I thought my disability had ever hindered lads from asking me out or taking things further with me, and what I said then remains true for me now: yes, it has, but I’d be shocked to see anyone admit it. From all my research, and from what I’ve literally seen, able-bodied people are tentative to date or be intimate with physically disabled people (whether maliciously or not), and for the ones with the disabilities, this has at best resulted in being ignored or passively rejected, and at worst just straight-up abused.

The work that I’ve done so far is minuscule when compared to how much work needs to be done. I looked at ‘physically disabled women’ in particular but even that phrase is kind of hollow because it doesn’t even begin to describe the vastly diverse group of people it’s trying to categorise. Furthermore, I didn’t have the words or time to study the impact of race, gender, economic background, type of disability, and all the other aspects which would inevitably influence the experience of sexuality for individuals. I also didn’t have the opportunity to talk to disabled people directly; I used a tonne of literature, but nothing can come close to hearing the words from the ones who feel it. So, whilst my work was informed and (I hope) useful, to call it the tip of the iceberg would be a huge understatement, and I wouldn’t be surprised if I continue to write about this for the rest of my life.

Nonetheless, the overarching theme of this dissertation was one of acceptance and optimism from most of the people who answered my questions. What I will say though, is that often your optimism was naive; it was comforting, but it didn’t really line up with the reality of the world. People gave the correct response by saying that it shouldn’t matter if you have a disability, and it shouldn’t matter how that impacts sexuality because anyone can find love, sex isn’t a fixed thing, and disability shouldn’t ever threaten a person’s ability to experience pleasure within relationships. Only, saying that something shouldn’t happen, doesn’t make it not happen.

For months, I’ve been exposed to the disabled experience on a level that I’d never seen before: for the first time, I was reading and listening to things that felt totally relatable rather than 85% there. The fact is that like all of the ‘isms’, ableism is so ingrained within our society that just because I have a disability, that doesn’t mean that I don’t have prejudices against the disabled community. There’s plenty to unpack there, but I think I’ll leave that for another blog (or two, or three…). But to generalise, the truth is that we’re so concerned with looks and frightened by what we don’t personally understand, that the disabled body has been persistently and systematically defined as undesirable and in need of a cure. To put it even more plainly: I’m disabled, so that means that my body is wrong, so it can’t be pretty and it definitely can’t be sexy, and if someone does find it pretty, then that’s not because of the disability, it’s despite it.

Obviously, there are grey areas here, and each individual can (and is) judged to be beautiful, desirable, and every other positive adjective by individual people. But finding one disabled person gorgeous doesn’t a perfect society make. There need to be some HEFTY changes when it comes to what ‘society’ and individuals understand disability to mean because for pretty much all of history, it’s equalled a mistake that we should ignore and just wait until it dies (or kill it before it lives).

So…how did it feel to write this, when I was sort of writing about myself? Well, it wasn’t great to hear that disabled women are far more likely to experience abuse (psychological and/or physical) within romantic or sexual relationships than able-bodied women. Nor did it feel amazing to read countless experiences of disabled people like being asked to leave restaurants because their appearance might put people off their food, or being persistently pushed to the side and dismissed as irrelevant and pointless. It also almost brought me to tears in the library to read women say that it’d been easier for them to tell people who’d assumed that they couldn’t have children because of their disability that they were right when they weren’t actually right because they could have kids, but the support for disabled women just isn’t there since everyone assumes that they can’t have kids anyway and if they can, then they shouldn’t in case they pass their disability on. But again, that’s not even scratching the surface.

Disabled people aren’t the weak, infirm victims history and modern culture paints us out to be and there are so many examples of fulfilled, happy lives with a disability. However, I share the sentiment that I read basically all of the disabled community expressing, in that the worst of the ‘struggles’ I’ve already had and the ones I’ll continue to have aren’t because of my Spina Bifida, they’re because this world is doing its absolute best to ignore me until I croak.

The thing is though, I’m a loudmouth who’s got a loooot of years left and I plan on making people talk about this because, regardless of whether you’re disabled or not, it has everything to do with you. I hope that in some small way, my blog or whatever else I do in the future can contribute to disabled people actually being listened to and valued because we deserve your attention.

If I can manage that, then that’s a win really innit?

P.S.

Can we all pls manifest that I get a good grade on my diss lol IMAGINE