Tag: representation

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.

Sometimes I’m in a wheelchair

Sometimes I’m in a wheelchair

by elizabethmdouglas ♥ 0 Leave a Comment

Occasionally I develop a problem with my feet, and it can be as small as a blister or a cut but it almost always becomes infected. I can’t walk on it until it heals, and *POOF*: I’m in a wheelchair.

So…what’s that like?

Well obviously it differs from person to person. It’s also pretty impossible to generalise ‘a normal day’ of having an infection for me because: how did it happen? do I have the correct footwear? do I have enough footwear? am I at school? am I at home? am I at University? is it the holidays? am I still growing? have I just had an operation?- the list goes on.

Now is the longest time I’ve gone without using a wheelchair because I’m able to just avoid it since I don’t have school anymore. But so I can paint a picture for you, this is how it was during my last experience when I was 15 and I stayed in that bloody thing for 6 months:

I’d wake up, check my foot, take the bandage off and see what level of infected I was that day. Then I’d crawl into the bathroom – I can’t hop, my balance is non-existent lol. I’d do some next-level spider-man moves to get into the shower without allowing my infected foot to touch any surface, then I’d get washed. Finished, I’d have to carefully dry around the wound and make sure to not damage it further. Next, I’d have to dress my foot.

So I’d take out my medical kit, with all the specific products my feet require. I’d make a perfect bandage, ensuring that there were no creases in the entire thing because creases mean blisters and blisters are not my friend. It’s also important to mention that I don’t have any feeling in my feet, so infections don’t hurt: I recognise when my foot is infected simply by looking at it. So these bandages have to be perfect because the second I put my sock on, I’ve got no idea what’s kicking off down there.

NEXT, I’d have to get changed without accidentally catching the bandage on my clothes, or making it roll up once I put my sock on. Whenever it did catch or roll up, I’d have to start again. Then I’d slide down the stairs on my bum; hopping around the house using my zimmer-frame. (That’s right, I used to have a zimmer-frame, I’m cool.) My dad would bring my wheelchair into the kitchen and after my breakfast, I’d strap in. Once at school he’d push me to my friends and I became their responsibility for the day.

At every point in my life, all of my friends have become friends with me whilst I’m physically independent. So we’ve never started off with them being used to, or knowing what it’s like, for me to be in a wheelchair. Thus being in my wheelchair doesn’t just change my life, it changes the relationships my friends and family have with me.

Thankfully, my pals were mostly brilliant and loved the novelty of pushing me around. But we were children. So there were times when they were accidentally really unsympathetic or insensitive because they just didn’t know what it was like. Plus, they knew me out of the chair, so were used to me doing things for myself. This meant that sometimes they forgot that I wasn’t asking them to go and get me food, or to push me to the bathroom just to be annoying: I was asking because for that period of time, I couldn’t do it for myself.

And they also didn’t realise just how humiliating it felt for me to have to ask them to do these things. Even though I physically felt fine, since I never have any pain, all of a sudden I was overwhelmingly dependent on other people.

I’ve chosen to live a life where most of the time I’m so independent that I don’t seem disabled at all. And that has meant that in those moments when my Spina Bifida catches up with me, and all the actions I take behind closed doors to monitor it come into full view for the rest of the world, it’s just really hard to navigate.

It’s easy to say ‘I’m in a wheelchair, so everyone should be sensitive to that and help me with whatever I need’, but people are people, and you can’t tell them how they should or shouldn’t be. You can ask for help, but you can’t also expect them to fully comprehend something they’ve never had to experience before.

This is a part of my life that very few will ever know the full scope of because ultimately my disability is mine to deal with – not anyone else’s. My family and friends have always done their best to support me when I’m in my wheelchair, and their best is more than enough. And thankfully, being in a wheelchair is not a reality that I have to live in very often – but it does still happen. And even when it does I try and stay as chirpy as I am normally, because why make my frustration worse by spreading it?

After all, I’m one of the lucky ones: at least I always get back out of the chair.

Can you be hot AND disabled?

Can you be hot AND disabled?

by elizabethmdouglas ♥ 0 Leave a Comment

On Monday I had some really gratifying conversations with my group of friends. All the points we made and discussed, are points that I want to write about in future blogs but one in particular sparked this entry.

For a while I’ve been wanting to discuss what it’s like to be disabled in the dating world, but I’ve never really known how to articulate it. The truth is: I find it really unfortunate just how much it probably does affect how I’m perceived by boys, because it’s something about myself that I absolutely cannot control.

When my friend asked me whether I think my disability affects my dating life, my immediate answer was: yes, but I don’t think that anyone ever told me. My response may come as a surprise because as I’ve said before, I’m aware that once someone spends time with me, it’s very easy to forget that I’m disabled.

The thing is though, no matter how confident or independent or self-sufficient I am, I will always be disabled and will always have to live my life with certain adaptations for my health. When people get into a romantic relationship with someone, everyone has some preconceived idea about what it’s going to be like. These preconceptions come from all the popular culture and media we consume on a day to day basis – and have done for years. But very rarely does that popular culture include examples of relationships where one person is physically disabled and the other is not.

In the past year, I’ve gotten particularly impatient with my failed attempts at romance – as you’ve probably noticed hehe. Whenever one has failed, like most people I find myself looking for reassurance that sometimes it can work out. So I look around me, and at the media. But never ever ever ever do I see myself reflected in the relationships shown. I don’t often see couples on the street where one of the two is disabled. I definitely barely see it on Instagram. And I’m not sure that I’ve ever seen a famous person with a physically disabled partner walk a red carpet.

If I have seen a couple like this in the media or popular culture, it’s often felt tokenistic. By this I mean, in television programmes or Snapchat ‘Born Different’ stories it’s examples of severely disabled people and their partners. Whilst it’s (rightfully) always a celebration of those love stories, I still don’t feel represented or particularly comforted by them. And with that, the disability always seems to overwhelm everything else that makes that person attractive. Can you not be hot and disabled? Can that not be a thing too?

I don’t feel disabled enough to relate to those permanently in a wheelchair or with more severe illnesses than I. But then I’m still disabled, so I can’t fully relate to anyone who isn’t.

Since we don’t see examples of couples where one person is (not severely) physically disabled, subconsciously that plays a part in how we date. I’m not trying to say that it makes someone a bad person for not finding someone with a disability attractive, because that might not even play a part in how you feel about them. But then again, the intimidation which might come with how little you can relate to that part of someone’s life and the degree to which you feel prepared to try, might well shape your decision about dating someone.

Explaining what it’s like to be disabled to someone who has no idea, is an impossible task because no matter how hard they try, they just can’t access that type of human experience. So that’s obviously going to be intimidating when dating someone because you literally canNOT connect with them on such a huge level. And that might not be what you want. I totally get it.

In light of this, this blog is not meant to be a guilt-trip; I understand why people might do what they do – both consciously and subconsciously – when it comes to dating. Obviously I’d love to feel more represented, and to feel that my disability 100% doesn’t affect my dating life, but I can’t change the world overnight with my ramblings.

What is important, is that you know that just because someone has an issue that you know nothing about, that that doesn’t then mean that you would be useless at helping them with it. Disability needs to be more visible and in all honesty, we need to see more relationships in the public eye where a disabled person has an ‘able’ partner.

The day I see someone ridiculously famous walk a red carpet hand in hand with their physically disabled boyfriend/girlfriend, I think I might actually shed a tear.