Monday, 29 July 2013

discrimination.

I recently watched a video by Aimee about discrimination to disabled people. She is a wheelchair user that has experienced different things through her life which I relate to greatly. I also read a post by Aimee on her blog about accessibility to places for wheelchair users which again is a huge deal for me also.

You can find her video here and her blog post here.

I wanted to add to the things she has said in a hope that more people with the same issues join in and spread the word to try and make things change.

I'm a 19 year old student living in London. I am originally from a small town called Kings Lynn.

Now unlike Aimee I haven't always been in my wheelchair. I have a spinal condition called Scoliosis which is a curvature of the spine and it wasn't until I was around 10-11 years old that I had an operation that went wrong. I wasn't paralysed straight away, it was a gradual thing that started with my feet starting to drag, then my legs starting to get heavy, I then started falling over and couldn't walk without holding on, I then had crutches and eventually I was in a wheelchair. I don't really remember much from that age but I know I ended up walking again when I was about 12-13 and spent my first year and a half of High School walking. I then had a relapse and was in a wheelchair from 13 till now. It is extremely hard for me to explain my condition, people don't really understand how it happens but I can have months where I have full feeling in my legs and loads of movement and can even walk quite far (not too far as I get in pain) to having months where there is no movement or feeling and I cannot leave my chair un aided. It is extremely exhausting and I have worked so hard to be where I am today which is being able to walk around my house and use crutches for short distances like from my car into a shop and back.

My spine unfortunately is not curable as when I was younger I had the option of rods but was refused it because I was too skinny and then my spine collapsed so it's too dangerous to fix.

Top Left and Bottom Left are before my spine collapsed.
Top Right and Bottom Right is my spine now it has collapsed.

Now enough of that. On to the main topic of this post.

The first thing I want to address is something Aimee mentioned in her video. She tells a story of how she can be out with a friend or family and she can speak to a member of staff directly but the staff ignore her and speak to the person she is with about her. For example, Aimee might ask the shop keeper a question and they would turn to the person she's with and ask something like "would she like a hand with that?" to which the people she is with would say "I don't know ask her".

This happens way too often with me and I really do not understand it. Why do they not speak to me? Because I use a wheelchair? Does that mean I cannot speak? No. I cant even put it down to ignorance. I feel that people are too awkward around disabled people, to the point where they are being discriminating without even realising. Well I'm here to tell anyone out there that does this to stop being awkward. We are normal human beings, we just use wheels instead of legs.

There are two moments that have really stuck in my mind where this has happened to me. The first one was quite a few years ago now, I had just moved to London and started college. I didn't drive then so my Mum would collect me to take me home, going back to the car I decided I wanted to buy some food from Sainsbury's. This little shopping trip was for me, not my Mum so my Mum just kind of followed me around while I picked the bits I wanted. I then went to the till. I put the stuff on the counter and I even spoke out loud and asked my Mum to hold some stuff for me while I payed. The cashier could see I am capable of moving around and could hear me speaking perfectly normal but proceeded to ask my Mum "Does she want a bag?". Now at the time I was so angry but I was polite and I didn't correct him and neither did my Mum, I just replied with "yes please". I don't like to be rude but that bugged me so much and still does to this day. I wish I'd said something.

Another time was when I went to Legoland with my brother. We had a really good day and then spotted the rollercoaster, we went in the lift (which by the way brought us out into the middle of the queue meaning very pissed off people that we "jumped" and people also barging past and not letting me in or out the lift) and then when we reached the front I asked the person directly if it was okay to leave my wheelchair inside while I went on the ride. He actually responded to me and said "yes thats fine" but then asked my brother "can she walk at all?"..... WHAT?! I don't get it, why did he ask my brother? Had we not just spoken to each other. 

So to anyone out there, please don't ignore us. Even if you see someone in a wheelchair who you know cannot respond for themselves, they can still understand, so talk to THEM and their carer will reply. Just out of pure decency. 

Now to talk about "Judgement" this is something that happens to me on a daily basis. To the point where I worry about anything I do in public because of it. My disability means I need a wheelchair to get around as I can only walk short distances. But my disability at the moment also means I do have the ability to move and feel my legs, so I can get out of my wheelchair.

I have noticed that people assume that if you're in a wheelchair, it means you cannot move your legs at all or get out of your wheelchair. You are wrong, yes admittedly a large quantity of people in wheelchairs aren't able to move their legs, but there are people out there like me that need it because we're not strong enough to walk far.

I am now at the point where if I'm out with friends I feel too scared to get out of my chair or move my legs incase someone comments on it. This has happened many times.

At the park one day, I got myself out of my chair to sit on the ground, later to hear somebody say "Is she taking the piss?" NO I am not taking the piss. I am getting out of my chair to join my friends, is that a crime? I am not confined to my chair, and even if I did lose the use of my legs, which I have before, there are still ways for me to get out my chair. No one LIVES in their chair.

So again, if you are one of these people that sees someone in a wheelchair move their legs or get out of it. Don't judge. 

I will make a follow up post at some point to talk about accessibility for wheelchair users in public places.



Tuesday, 16 July 2013

underweight.

So this post is a bit of a deep post. It's about weight and eating disorders.

Now I don't have an eating disorder so I don't want anyone to assume I'm being something I'm not.

A couple of years ago, when I was in year 11 at school I believe, I was told I was really underweight for my age. This didn't come as a huge shock to me as I found it really difficult to eat. At the time I didn't really think anything of it, it was normal for me, my friends and family would joke about the fact I ate like a sparrow and it was like that most of my life. I think it took me till the age of 14 to get out of kids meals at mcdonalds because until that time I couldn't manage anything bigger and would be stuffed just from a little kids meal.

Like I say, it was normal for me, I grew up like it. But when I hit year 11 at school and was told by doctors that I was really underweight it started to make me realise how much I struggled to eat. I would skip meals almost everyday, food became disgusting to me. My Mum tried and tried to get me to eat, she would list off loads of foods and I would say no to them all because in my mind they made me feel ill and they just sounded so disgusting. Obviously I ate, I didn't starve myself but when I did eat it was only a really small meal or just a sandwhich for the day. It really wasnt a lot. And the scary thing was, I liked that. I liked that I didn't eat. I was comfortable with my size. I didn't want to put on weight.

I ended up having to visit a doctor every week to report back to her what I had eaten and she would talk to me about the fact I am not at a healthy weight and that I needed to put on weight. She spoke about meals and asked what food I liked. Only thing I could say was spaghetti bolognese. She tried and tried to think of meal choices for me that would help me gain weight but I refused them all, they sounded horrible to me and just the thought of them honestly made me feel so sick.

Every week she would weight me and showed me the chart where a red dot was in a huge red section that said I was underweight. Every week she would show me about the huge red section where the "normal" weight was and told me that's what I was aiming for.

I hated my trips to the hospital (I actually fell asleep while she was talking to me once, I was so tired and REALLY not in the mood for another lecture).

I remember the reason I stopped the hospital appointments. There were two reasons and one sounds really bad and although thinking back on it I find it funny, I also realise how bad it was. The main reason we stopped them is because I finished school and we were moving to London. So obviously I was pleased they were stopping but also worried they would say that I would need to see someone when I move to London (they didn't). The second reason, the reason that is bad, is because I got so fed up of this lady telling me to put on weight when I didn't want to that I two two money backs filled with changed to hide in my pocket. It's safe to say it worked, I was out of the red zone and they were so happy.

I know that was a bad thing to do now, I guess I am lucky because I did actually eventually end up putting on weight and getting out of the red zone for real once I moved to London, maybe because I was a lot happier in London, it was almost like I left all my troubles back where I used to live and started a fresh life in London. Either way I did put on weight and I didn't feel bad about putting it on either.

That was almost three years ago. Today I am back to being underweight.

I am 19 years old and I weigh less than an average 13 year old girl.

It doesn’t matter how slowly you go, so long as you dont stop