Employability first, disability later

13th Sep 2022 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.

Well that was a bit silly of me

5th Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

Okay but, why is it that whenever I get bored, lonely, or horny (or heaven forbid a combination of all three), I think it wise to make some stupid decisions? Something happens in my head where I think that for some reason, a lad who I’m definitely not that interested in not only requires my attention, but he also deserves my stress and occasionally even my tears. I swear to you, if I had a pound for every time I’ve gotten irritated over some romantic situation, where, if I actually took a step back and thought about it, I’d decide I was really not that invested anyway, then I would be a very rich woman right now.

And I know that everyone says this but I promise you, pinky swear and lock it in, I don’t enjoy the unsaid games which happen before you’re in a relationship with someone. I can’t be bothered to wait for ages to text someone back, I don’t care about how long they take to text me back – unless it becomes clear that they’re playing the game, then that does irritate me – but more than anything, I hate how being involved in the game makes me overthink EVERYTHING. And yet, I still do it! Often with people I don’t even like that much! I’m also incredibly picky and very very rarely say yes to going on a date with someone. So am I part of my own problem? Possibly.

I think that part of it is that if you actually sit and think about the efforts a person would have to take to not think, speak about, or see romantic relationships in everyday life then you come to realise that it’s kind of impossible. Every time you turn the television on, it doesn’t matter if it’s reality tv or a drama, odds are there’s a hefty section devoted to finding a relationship, being in one, or leaving one. Then you walk down the street and someone’s being cute with their partner, or there are advertisements suggesting what you should do with your partner, or what you should buy them. Plus, you’re judged if you go out and do things on your own, let alone the lame fact that it’s kind of unsafe for a woman to fly solo in towns and cities once the sun has gone down, so even if you wanted to go for a drink on your own, there’s that little voice in your head wondering whether it’s worth the potential hassle.

Therefore, we’re encouraged to be lonely, we get bored, and if those two weren’t enough, the sex drive comes along to make us momentarily ignore that part of our brains which tells us that something is probably not a great idea. Because maybe it is a good idea for the near future. And it’s not that deep anyway! And they’re interested in me! Or they seem to be… And it’ll make for a fun story to tell everyone tomorrow morning.

I try not to waste time regretting my actions, since I know that if I were put in the situation again, I’d probs do the same thing anyway, but sometimes the embarrassment does find its way into my internal monologues and when it does, you’ve got to flush that shit away like a spider in the bath.

But second-hand embarrassment aside, at least I try to treat people the way I’d like to be treated so it’s not as if I’m out here being a massive cow when I’m making questionable decisions. However, this isn’t the part where I promise never to text someone who I know is only going to play some game and then irritate me by doing that, because ladies and gentlemen, I am silly at times. Buuuutttt, I will congratulate myself for finally being decent at knowing when enough is enough and just deleting the conversation thread. That’s some solid character progression right there. Go me.

Get your kit off!

15th Aug 20222nd Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

Last week I was sitting with one of my best friends and I asked her how often she looks at herself naked. (Bit of an intense way to start a blog, I know, but I didn’t know how else to kick this topic off lol). I asked her this because we’re all well aware of the level of scrutiny our bodies are under in regards to what size they should be, what shape, what colour, what texture, et cetera et cetera. So, I guess I was just curious about how often my friend stands in front of a mirror and has a look, to then compare it to how often I do the same, especially since the act of looking at your naked skin in broad daylight is one of the most vulnerable things you can do. After all, we might not always like what’s reflected back to us.

My friend’s a total queen though; her response was ‘all the time’ and I said the same – buuuut, I did go on to explain that I don’t spend too many seconds looking at my Spina Bifida lump or my legs in the mirror, so I’ve got room for improvement.

I think that in general, as women, we’re not encouraged to stand with ourselves and get familiar without being critical, so it can be quite unusual to see a woman who is totally comfortable with her naked body. However, I would like to clarify here that by ‘totally comfortable’, I’m not suggesting that there aren’t things you dislike, or would prefer to not look a certain way some days because we’re going for honesty here, not idealism.

One of the best things I ever did for getting comfortable with my own skin was starting to sleep naked every night. I wouldn’t say that before doing that I was ever particularly uncomfortable with my body, but sleeping naked just forces you to see and feel yourself exactly as you are: you get used to your boobs falling in every direction depending on how you’re sitting; you see all the stretch marks and ‘imperfections’ highlighted by the sun when you wake up, and you stop getting a little startled by the image of your naked body first thing in the morning. But overall, sleeping naked allows your skin to breathe and everything feels better after that.

Quick sidenote: I do realise that a lot of my words and descriptions here lean very close to the topic of masturbation, and whilst I’m not really going to go into that much today, I will say: for god’s sake, masturbate! Especially you ladies! It’s good for you! (Literally.) :)))

Many people (especially (British) women) would rather die than speak about topics such as this one, but after being lucky enough to have known women of all shapes and sizes who are so comfortable in their own bodies that they’ll take their kit off at any given opportunity, I’ve never underestimated the power of being proactive in loving your body. Every clothing campaign badgers on about it nowadays – some in a very live laugh love sort of a way (*puke*) – but the human body is truly a remarkably beautiful thing, and even though we’re never going to love ourselves entirely every single minute of every day, making sure that we at least accept ourselves every day does wonders.

Regardless of how we each feel about our own bodies though, we should be careful to never (!) shame another person for being confident in their body just because you wouldn’t do the same. I like to sit/hang around my house in a towel, or my underwear and I’ll put the bin out with ‘just’ a big t-shirt and knickers on; you not doing the same doesn’t mean you love your body any less than I love mine, but it also doesn’t leave room for my body to be sexualised or criticised when all I’m doing is watching TV or putting the recycling out. After all, if you can’t wear as much or as little as you want in your own house, then where can you?

Cover those callipers!

7th Aug 202214th Oct 2022 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

5th Jul 20222nd Sep 2022 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.

Graduation, but then what?

14th Jun 202214th Jun 2022 by elizabethmdouglas ♥ 0 Leave a Comment

In my head, I think that I’m pretty good at hiding my emotions…but then every time I’m even slightly upset or angry, it usually takes my friends, family, or colleagues about 0.5 seconds to notice. So clearly, I’m slightly deluded. However, whilst it may be true that my overall mood is very easy for others to discern, I am that person who takes on a lot of things and eventually snaps when all of those things have piled up in my head. Then it’s in the moments when I’m close to snapping that my mood goes down, I’m tired, and I’m likely to burst into an ugly cry if anyone hits me with the ‘are you okay?’.

Don’t worry, I’m not about to confess to the internet that I’m in the middle of having an existential crisis…Though I will say that I’ve had a pretty intense last few months which have gifted me both good and bad stress, resulting in a few days when my mood hasn’t been as chirpy as it is normally. And one of these stresses has been something that I know many of my peers are overthinking right now: what the hell are we going to do after graduation?

For me, my graduation from university mostly brings a sense of relief. The last 3 years have been a lot of fun in parts but I’d be lying if I said that I don’t feel ready to leave; I’m tired of being confronted by the same annoying problems brought to me by Durham University, and I ache to leave the education system behind for a second. I mean, I’ve been in it for 17 years! That’s a long time. Granted, I had a year out before university but I did work in 2 schools for 6 months of that…then I taught in 3 of the 4 countries I visited…So no matter how much I know I’ll continue to study something for the rest of my life, I think I’d like to give formal education a rest for now.

It’s scary though. I can see it in my friends’ faces when we actually sit for a minute and talk about what we each want to do after uni: everyone masks the apprehension at being thrust into the adult world with talking about ‘panic masters’, internships, job placements, and the classically vague ‘maybe I’ll go travelling’ statements. The fact is that many of us have absolutely no clue what’s next or where we’ll end up, and it’s stressing a lot of young people out that they’re expected to have their whole life mapped out when just a couple of weeks ago we were sitting our exams.

I’m a lucky one in that I do know what I want to do, and I have made moves towards that, but even I feel like I haven’t had a second to breathe before I have to sort the rest of my life out. Also, there’s a stigma against the graduates who choose a different route from the traditional ones. For example, I know I’m moving to a new city and I know what I want to do there, but a career as a radio presenter doesn’t exactly have a cushty grad scheme for me to apply for, so whenever I tell people my plans, they inevitably sound half-baked, and that makes me self-conscious. Even though, we don’t all have to work in an office straight after university if we don’t want to…

Sometimes everything feels like it moves so quickly that there’s no way you can keep up, then other days it’s easy – occasionally, even a bit boring. I’m definitely not qualified to be giving advice on what to do in these situations given that I’m part of those going through the experience, but what I have said to my friends when we’ve been in the car or in a living room, stressing about the future, is that the best approach to have is to do whatever makes you happiest. That might be another year of university, working abroad and travelling, moving to a new city to start a new job, or having absolutely no clue and needing a couple of months of nothing to figure yourself out. Obviously, money is a factor in this and it’s not always easy to do exactly what you’d ideally want to do, still, try not to put so much pressure on yourself to have everything mapped out right now; take a minute to breathe.

Truly, there is no rush.

A Big Weekend for Accessibility

7th Jun 20227th Jun 2022 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?

26th Apr 202226th Apr 2022 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.

Is it really that embarrassing to be alone?

19th Apr 2022 by elizabethmdouglas ♥ 2 Comments

Now, I am a lot of things: some of them good, some of them not so good, but one of the not so good things about myself which I have been trying to change is that I don’t do so well with being alone.

I’d thought that travelling to various countries on my own in the months before I started university had been a decent way to combat this in preparation for moving out. What I hadn’t considered though, is that yes, I went through the airports and across the countries solo, but once I’d arrived wherever I was going it only really took me a couple of minutes before I’d found people to pass the time with. So, I was never alone for that long. This meant that when I found myself sitting in a room on my own at university for hours at a time, week after week, trying to find my feet in my degree, and surrounded by people I’d known for two minutes, I struggled. But those achingly lonely moments at university aren’t the ones any of us are supposed to talk openly about because these are supposed to be ‘the best years of your life’ where you come out of your shell; you’re not supposed to retreat back in.

In our first year, every single one of my friends experienced moments where they felt overwhelmed by it all, but I know that the thing missing the most for me was the safety you get when you’re around people who completely understand you. Like all of us, it takes me a second to totally relax and ‘be myself’ with people; in fact, I think that going to university has made me take longer to do that than I ever did before. Yet even after forming some of the closest friendships I’ve ever had, I still struggle with the fact that nobody truly understands me because they don’t understand my physical disability. My friends from school kind of got it since they saw me in a wheelchair for months at a time when my foot acted up, but even then they didn’t really engage with it because we were kids and me potentially having to be in a wheelchair for a bit was just something that happened. Then even though my closest friends at university do try to support me with my feet, they could only really do that after my foot had gotten bad and again, even then it’s just not really something anyone else can help me with unless they’re with me all the time. So, I had to accept that I have to do it on my own, and for the first couple of years since that realisation, it felt really lonely.

But being alone doesn’t need to have as many negative connotations as we like to give it. (I think) I’ve now fully accepted that all the disability stuff is pretty much a solo mission, and there will be times when I cry about that because it gets really difficult, but that’s just how it is. We each have to accept that there are always going to be certain things we can’t get from people. For example, you’re always going to have that friend who’s a right laugh in person, but you definitely couldn’t rely on them in an emergency; that doesn’t mean that the friendship isn’t worthwhile, or that the person doesn’t care for you, it just means that we shouldn’t expect every individual to be able to give us everything we need because if we do that, we’ll only be disappointed. Besides, that’s a lot of pressure to put on every relationship we have with someone. In practice though, it is difficult to accept this and I should know, because I’ve relied heavily on people and ended up disappointed by them more times than I could count, and I’d be lying if I said that I’ve completely stopped doing this. Nonetheless, I am trying to become more self-reliant because it’s just not healthy to allow the actions of others to dictate your happiness.

Stopping myself from doing this is an active effort, given that everywhere we look in popular culture we’re hounded by the impossible image of a perfect life where we’ve got a perfect relationship and perfect friends who never falter and are there for every second and every ounce of what we need. I don’t want to suggest that my friends and family aren’t brilliant because they are. Instead, the point I want to make is that we each have to learn how to be good on our own because no matter how amazing your friend, partner, or family member is, they could never be everything you need, or understand you completely.

Since I’ve started to be comfortable in doing things on my own like going to the cinema or to a gig because I want to and can’t be bothered to convince another person to come even though it’s not something they’re super into, it’s clear that there’s an unnecessary stigma around doing things in public on your own. For some reason, we’re telling people that they have to be with someone else, otherwise they look like a loser who nobody likes – and that kind of social rejection seems to be a fate worse than death for many of us. But seriously, when was the last time you saw someone walking around on their own and you thought ‘wow, what a weirdo, imagine being alone and not in the house, they must be a psycho’ ? Who even cares that much?

And if you do judge people like that then get a new hobby because that one’s lame.

Thus, the moral of today’s blog is that I think you should do whatever the hell you want to do and not rely on other people for your happiness. After all, when you lie down at night, it’s just you in that head of yours, so you’ve got to make sure that you feel comfortable being there.

My dissertation was about sex! :o

5th Apr 20225th Apr 2022 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

An Indelible Friend

Tag: ideas