Saturday, 23 December 2017

christmas: the uk's ableism at it's worst

A disclaimer: this post is going to sound like a lot of whining but it's reality and it's hard. I don't have time for ableists, this is my blog, experiences and writing. More comprehensive disclaimers at the end.

Christmas! The happiest time of year, right? Except really, it's awful and stressful right up until the moment everything is done, which for a lot of people isn't until midnight when it's hitting Christmas Day; or even longer if they're cooking.

We work out way around shops, getting annoyed when they're out of that one present and get frustrated when online shops don't work properly. There's a ticking clock on how long there is for that delivery to arrive.

Trust me, though, these can be the smaller worries of disabled people because of how other people go about these stresses. People don't consider how they move around, shop workers don't consider accessibility, and it's just difficult.

It was (a few nights) before Christmas, and all through the shop... there were accessibility nightmares 
I went to Asda last night with my mum for our Christmas shop. I *knew* it was going to be the shopping trip from hell the minute we walked in the door and one side of the travelator was out. But that's fine, you say: there's both a lift and stairs! Well, I use a walking stick and we had a trolley so the stairs were out. That leaves a lift - a lift where there was a twenty minute wait! So we just wandered around the top floor for longer instead, but that just made my heart race more and my legs hurt worse. Swings and roundabouts, because I got to see this...

3 lines of trolleys in front of a
display of socks. 
There were trolleys everywhere upstairs where people had abandoned them to get down the stairs. It was really difficult to get around the entire store, the top floor because of this and the lower floor because the stock was out. I understand why, as it was around 9pm, but maybe it could have been considered that a lot of people were still shopping on this particular night due to it being so close to Christmas.

In regards to people's ableism, rather than shops not thinking, Christmas and supermarkets just brings out the worst in people. People were shoving and not looking where they were going, and I got multiple glares because I was going a little slowly. The walking stick makes it a little more obvious, but if I didn't have it, I would have felt really looked down on (like I used to). People can't see the pain I have or see my heart racing.

One man pushed through my mum and another lady with his basket. Had me and mum swapped places, that would've been me out for a week because of my nerve sensitivities.

But Charli, why did you go? You probably knew that stuff could happen! 
Okay, I knew that the trip would make my legs hurt and my heart race badly, but I know my limits. I also knew that people might be being awful, but I hadn't been out of the house all day. And besides that, I shouldn't have to justify it.

Why shouldn't a disabled person be able to go shopping because a shop can't consider not putting stock in the middle of an aisle? Or because people are too busy trying to grab the last tube of pringles to notice why I might be walking a little more slowly?

The answer is that I shouldn't. Disabled people should be able to fit into society without these sort of issues. But we don't, because it doesn't cross people's minds until it affects them or someone close to them. And that's the issue. There was no way a wheelchair user could have gotten around that store, and to me, that's not okay.


I've targeted ASDA in this post due to it being my main experience this Christmas, but I would like to say that I go to the store a lot and I've only had these issues last night and one other major ableist issue which I didn't complain about (which is my own fault). I mean no harm to ASDA as these experiences translate for many disabled people to many stores. 

I have also not discussed mental illnesses and disabilities here. These are just as difficult for people in shops in this season, myself included, but I felt that this post was better focused on physical difficulties due to the shop.

Saturday, 26 August 2017

summer 2017 - a new charli?

The past week has probably been one of the best of my life. For progress. For pride. For friendship. People have referred to a "new Charli". Am I?

A few weeks ago I applied to a summer school at Cambridge, having dithered over it and my Scout leaders essentially saying that I should apply and there was always room to give up the place if I got one. Then I got a place, and I decided I had to do it. It was one of the best experiences I've had for a lot of reasons; I loved being with other academics, I made some friends I hope will stick around for a while, and I managed to do it and keep my anxiety at bay and stay away alone. I adored it, and I've missed it since about 10 minutes after I got home.

Thursday then bought GCSE Results Day. Many of you who might read this will know that my GCSEs were extremely rocky because I had 5 months off school in year 10 due to mental health and I've been playing catch up ever since, as well as dealing with all my conditions for the entirety of the two years. I've been stressed about Thursday since pretty much the day of my last exam, and when it finally came around, I'm so happy to say that it was all worth it. I spent so much of year 11 in after school sessions, sessions before school; I revised for nearly the whole summer between year 10 and 11. I wouldn't say the panic attacks and pain were "worth it", because I wouldn't put any success down to them and they were just a general git to deal with - but it's shown me that I can still do it, although it'd have been fine if I hadn't.

And then, yesterday I went to therapy. We've been discussing discharge for months on end, and now, it's finally happened. I've been in and out of it since I was 10 and with this particular therapist for 2 whole years (shout out to Nick, because I can completely testify that CAMHS isn't always a disaster). I feel really strange about it ending, but we all knew that I'm as good as I can be and I need to attempt to navigate life without it.

Along with this week, this summer has bought about a lot of change... we've made some progress with my physical health in terms of diagnosis, and I'm hopefully going into some treatment, as well as finally changing my name.

I said to a couple of people yesterday - I almost feel like I've shed a skin. The last two years were not great for a variety of reasons. And I've still got all my illnesses, that doesn't change, but a lot of other things have. So, now I go and navigate sixth form, my disabilities and all that other stuff.

But I'm not a "new Charli". That's not how this works. I'm just... Charli, who's progressed, who managed to do what she thought she couldn't, and wants to continue to do so. That's it.

Tuesday, 4 July 2017

a diagnosis, and why that's so important

back in 2010/11, we went to our GP saying I was having a lot of pain in my legs. I was referred to physios, a neurologist, to have orthotics. no-one ever said there was something specific wrong. I was periodically discharged and shoved back in to various services until 2014/5 when everything got worse - put into more departments. they all said I shouldn't be under them.

fast forward to 2017, in widespread body pain every day, walking with a cane, struggling to stay up for more than a few hours. I got through my exams hanging by a thread, each day another blow.

a few days ago, I saw an adult rheumatologist. I saw a paediatric one last year, but he was a bit useless; he said I couldn't have one condition because I was going to school and he said another was outdated.

I didn't go in with any expectations - I've been pushed from pillar to post for years on end and I'm so exhausted that I'd kind of given up. but this doctor was brilliant... she didn't have any context about me because it was the first time I'd been to that hospital and my referral letter apparently got lost, and she actually let us talk, she actually listened.

I walked out half an hour later with what I'd wanted for so long. doctors have always said I'm "really hypermobile" but have never given me the diagnosis, resistant. it was so ridiculously simple that I nearly cried - she did the test (beighton/brighton) and was like "...yeah no you're definitely that".

so. now I feel like I'm not faking. now I feel like I have a route forward. yes, we have to make more referrals and it's going to take a lot to get me to a better place. but, it's going to be slightly easier.

my name is Charli, and I have HMS/hEDS.

it's not everything about me that you need to know, but it's a big part of my life and has been since I was 10, and so, I don't want it to be erased. I don't want people to tell me "your disability doesn't define you", because in a sense, it does - and that's okay.

it defines me because it changes my entire life. it doesn't define me because once you know that, you can get to know everything else. more than one thing can define me, and that is okay.

a lot of medical professionals say "you shouldn't be looking for a diagnosis, we just need to treat the symptoms" but I think they're wrong. if there is a diagnosis, it should be made, because then you understand the body as a whole. for years, doctors have been looking at my legs, my hands. never my whole body together.

friday was overwhelming. I might have thought that that was my condition for years but... I never felt valid. I don't have anything against self-diagnosis, but I personally can't do it because I don't feel valid.

for some people, it's just an acronym. but for me, it's a twist in the path. this long, long metaphorical path to me being in a place where I can function. not for me to "get better", because that's not going to happen, but there might be things that help reduce it all... and to me, that's enough.

Wednesday, 21 June 2017

on reflection.

Today, on the 21st of June 2017, I finished my GCSE exams.

2 years ago people were telling me I wouldn't get here. Either I'd have to drop subjects, be pulled back a year, not even take them. There's nothing wrong with any of these options... But I never wanted to do that. I was so determined.

With no sugar-coating or exaggerating, it's been an awful few years. In year 9, the panic attacks started and I moved school, which was the best decision of my life. I was so sure that GCSEs were going to be my time. It went south quickly when I ended up in inpatient mental health care and out of school for five months.

But I kept going. Got out, returned to school as soon as I was allowed. And then my physical health got worse, and I've been ambling through year 11 through all the pain and panic attacks, and the clouding fatigue that makes me barely awake for some of my lessons.

I don't care what I get anymore (unless I don't get into sixth form, but that's a bridge to cross if we come to it...). I know that I did my best. I sat every single one of my exams, I put pen to paper. I answered every single question even if a lot of it was rubbish (looking at you, physics...).

This post is mainly for myself, because some days I forget how far I've come in two years. I've gone through my GCSE period struggling and ill, and sometimes I forget that. Now, I'm in pain and it's hard, and I'm walking with a walking stick, and my anxiety still strikes at inconvenient times. But now, I can get on a bus where I couldn't for months after inpatient. I can tell people what I need. I can express myself more easily.

I did it. And GCSEs may not have been my time, but A-levels will be. And if they're not? Then university will be my time.

There is always more time. I have to remember that.

Saturday, 17 June 2017

what I've learnt in my 1st month(ish) using a mobility aid

So about a month and a half ago, my legs started essentially buckling under me, but I've been struggling with my walking for a long time. So, we decided it was the best decision for me to get a mobility aid - a cane or walking stick, whatever you prefer to call it. It's quite nice, to be honest - the handle is purple marble, I'm a fan. But it's been an interesting experience... so here's some thoughts.

(After writing note: it's worth saying that when I use "you" here, I'm referring to me rather than anyone else - it reads like I'm saying it will be everyone's experience so I just wanted to clarify that I'm not saying that at all, it's just my writing style)

1) You've essentially lost a version of a superpower - everyone is going to ask questions now.

There's pros and cons to being invisibly disabled; no-one knows what you're going through unless you talk about it, which is great because you don't get questions, but it's awful because they don't see that you are struggling or anything is wrong. So now, everyone knows - except they don't. Question after question after question. You have to deal with it, and you're going to look like the bad guy if you won't tell them your medical information. Everyone thinks they have a right to your information just because you have a visible aid.

2) People don't like teenagers with mobility aids.

I was far more anxious about going to school with my cane than I was about going into the general public. I shouldn't have been. I'm 16 and when I walk with the stick, apart from the buckling, my walking looks quite normal. My walking looks normal because I have the stick, not because I don't need the stick. But people don't know that. People glare and stare and will occasionally tut as they walk around you to get somewhere quicker (looking at you, middle-aged white business man...). I got the nastiest look from a man with a walker and it kind of disgusted me that another disabled person looked at me like I was faking. Yes, I'm 16 - but teenagers can be disabled too. How many teenagers do you know who think it's cool to walk around with a walking stick?

3) People who know you are going to find it hard.

Not necessarily your inner circle of friends, like the ones you spent every minute with who know you've been struggling with this... But teachers who don't know the details, family friends, family you only see once a year. And you're going to think that they should think it's a great thing because you can finally get around more easily again, but they're not going to immediately see that.

4) Kids genuinely think it's okay to shout across the corridor at you.

At least five times now I've had lower school kids ask me why I have a walking stick across the corridor and I generally just ignore them because otherwise I'd probably be really sassy or say something inappropriate. It's slightly humiliating but after a few goes, you get used to it. Shout out to that one girl that told her friend to leave me alone after her friend shouted up the stairs at me, it made me smile a little bit.

5) Your back and shoulders are probably going to hurt even more.

My back and shoulders have always been one of my more painful spots, but now they hurt so, so much pretty much all the time. I'm used to being in pain nowadays so it doesn't matter too much, but it still hurts and it's not a great addition to my life. However, the cane is really helping... Swings and roundabouts.

This post sounds really negative but I'm being quite cynical because the view on disability here is strange and a little bit disgusting. Walking is easier and life that few percent less difficult, and I really appreciate the support I've had from my friends with it all.


Tuesday, 14 March 2017

the supermarket (charli writes poetry)

possible trigger warning for anxiety/panic, hospital

the supermarket

it was the morrisons.
it's tucked away, a little way from
the big roundabout in the middle of town -
the morrisons we went to
whilst i was inpatient,
but never before nor after.

and it's just a supermarket
and if i told someone that it made
my breathing unsteady,
they would laugh and call me crazy -
roll their eyes and wonder
why i have to be this way

but we used to go and buy
snacks and the latest kerrang
(i needed to keep up with the music world
whilst i was cut off from the rest of it)
and when my dad visited,
eyes laden with concern,
we took him to the cafe there.
i had a toastie - it tasted like cardboard and dust
(what a true cliché)

my favourite thing
when i was there
was buying the christmas chocolate
feeling less alone
more connected to reality
not just the two corridors that made up the ward.

and it's just a freaking supermarket
i never thought it'd become my kryptonite
- not considering what else i've faced -
until we drove back into that car park
(two storeys, slightly disconcerting)
and i felt my stomach drop

and okay fine it's just a supermarket
but my mind associates it
with darkness and shouts and alarms
and being trapped -

or rather, the minutes i got to spend
not trapped, not with the darkness.

Saturday, 25 February 2017

the same, but different. (charli writes poetry)

Today I faced my biggest anxiety, which is seeing a family member after four years due to a really bad fallout. And now I'm home and want to process so... I'm going to write.

the same, but different.

i'm the same as i was back then
(four years ago)
pen all over my hands,
the frizzy hair,
my backpack full of books.

but i'm not.
i wear skinny jeans,
i have splints adorning my arms,
i learn concepts larger than life.

my values are still spelt out,
loud and strong
(too loud for most)
and i still tend to be cuddled
away in a hoodie.

but i've learnt how to be diplomatic,
how to do no harm but take no shit,
and i just know where i want to be.

and yes, i still wear trainers,
and no, i still don't like fish.
but i am not who i was
and neither are they.

their house felt so much smaller
but the situation was so so big.
and she -- she looked so withdrawn
and there was this lack of regret
but i am okay.

the hand-soap was the same brand
and they haven't even had a new tv.
the picture of me age 5 still lay on the mantelpiece...

there was such an air of vulnerability
tentative, tangible vulnerability.
but i am okay, and it is over now.