Tag: responsibility

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.

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.

Corona, you’ve turned my world upside down

Corona, you’ve turned my world upside down

by elizabethmdouglas ♥ 0 Leave a Comment

I guess the only thing I can really speak about this Sunday, is how the corona pandemic has affected my life. But don’t worry people, I haven’t got it. Or at least, I don’t think I have, seeing as people my age can just have it without knowing that they do…

But I’m pretty sure I haven’t got it…………………….? mOViNG oN

Living at University, my friends and I were all in a bubble where the world didn’t really seem to affect us much. The biggest excitement of our days was the prospect of a night out or any other silly s*** we could get up to. So when we woke up to be told that our University was going to shut early, and that we should take all of our stuff home with us just in case we didn’t come back for third term, we were all pretty taken aback. To add to that weirdness, I realised that I was going to have to call up KLM to ask them to move my flight because ever since February, my home is Peru. Which in itself is a totally new and bizarre concept.

I’d woken up ready to have a very relaxing day: I was going to watch some Netflix, eat some food, maybe shave my legs (Wild. I know), then go get drunk for my friend’s birthday. But at 2pm I realised that instead of this crazy Friday I’d had planned, I needed to speed-pack a suitcase and drive home to Yorkshire, ready to catch a flight to Peru the following morning. Complete madness.

Then when I was navigating through the airports, I was surrounded by people doing exactly the same thing. Some of them were pretty jovial and nonchalant about it, whilst others were complete nervous wrecks. The girl sitting next to me on the flight almost lost it when she spotted someone lying horizontally across the seats with a protective mask covering her mouth. I managed to calm her down by telling her that that girl lying down was severely disabled, and had come onto the plane in a wheelchair: she wasn’t dying of corona virus.

I’ve never had anyone look at me with such gratitude as she did once I’d told her that. *eye roll*

After over 24 hours, I made it here a day before the borders shut, and have been living in a state of national emergency ever since. What, you might ask, does that entail? Well! Let me tell you! It means that: if you leave your apartment for anything other than to go to the shop or to walk your dog, you’ll get arrested and fined £2000. So, since I don’t really fancy being locked up in a Peruvian prison surrounded by people speaking a language that I don’t, I haven’t been outside since I arrived. I feel it’s the most logical choice.

In all seriousness, the modern world has never experienced something like corona, and it’s led to a lot of things being cancelled. These cancellations has then resulted in a whole lot of sulking. And it’s 100% fine to sulk! I’m sulking about not having a summer term at University, and the idea of not seeing my friends for months. But just so we can help this thing end sooner and minimise the amount of people hurt by it, can everyone please just sulk at home? The sooner we sit in self-isolation, doing a jigsaw or playing monopoly, the sooner we’ll be able to get back to normal.

I’ve been in total lock-down for a week now and it’s really not that bad. Don’t get me wrong, I’m not lOVing it, and I’d really rather not, but sometimes we’ve got to do things we don’t want to do. So don’t be selfish, and just stay inside for a few weeks until this all blows over. Also, don’t be that idiot who freaks out and stockpiles food: you’re not actually living through The Day After Tomorrow.

Plus! At least through all of this chaos and weirdness, the planet is getting some time to breathe as we stop polluting and abusing it so much for a few months. That’s got to be good, doesn’t it?