Dear you

Dear Lucy,

I hope you don't mind me writing, (haha - see what I did there? yup, I'll leave now) I want to thank you. I saw you at the Leadmill. Y'know Ruthie with sparkle-y cast? Yeah anyway, I just want to express my appreciation.

First off, you smashed it last night, granted I couldn't really see ya, you sounded great! The atmosphere was incredible and the mix of songs from all three albums was utterly sensational (as ever, I'll add). I really don't know how you get better every time I come to see you.

I took my mum for the first time. She's also physically disabled and is in a wheelchair. She hasn't been to a gig in ages and to be honest she was pretty nervous of the crowds. I think, along with everyone else there, she had a blast!

Like I said she really doesn't like crowds, incase she gets knocked or something, pretty reasonable but I told her most sprags are really understanding and respectful. What I didn't expect is for one random sprag to shield my mum from the people who were going to the bar. I know for a fact if that was any other fan base it probably wouldn't have happened. That person could have got a great spot but decided to protect my mum. I think that's a credit to not only you but most of the community you've created. 

Also, I know this isn't really related but congratulations on fostering and doing restbite. I'm so jealous of whichever kid gets you and G (+ Steve) as foster parents, you both are so kind to the sprags there's no doubt they are going to adore you. When I was younger I had bits of restbite every now and again and I can tell you are going to be brilliant, granted it's hard but worth it! Like I said last night I'm always available ;) 

Basically that's it, just thank you xxxx

Sent from my iPhone

Click here to Reply or Forward

On my mind......

Hi,

This has been bothering me for a while- so here's a post about it. YAY!

I've said this before and I'll happily say it again - I despise being labelled an inspiration. 

At the moment I'm recovering from an operation on my foot and I'm not only in a cast and crutches, but also being carted in a wheelchair. If you know me, you know my annoyance at this and how at the moment my self-respect and esteem are rock bottom cause I'm sticking out like a sore thumb even more than usual. 

Some people (able-bodied I'm going to add) think that it's acceptable that because in the rehabilitation stage of the op that I need to be told that I'm a fighter or I'm an inspiration to encourage and lift my spirits  (cringe) no mate. I may be even more mobility impaired than usual - but it's my leg that's messed up - not my brain.   No matter what state I look like I'm in - I'm not going to sit around and be inspiration porn. I'm like any of my friends, just that it seems that whoever upstairs decided to mess my body up a little and I'm left with a pretty crappy right side- no big deal I function perfectly well. 

I feel the phase 'inspiration porn' sum up these last few weeks pretty well. I'm exposed and people are watching and what's even worse is that they are getting a kick out of patronising me, they don't realise they are but, it the simplest of terms they are sort of turning me into an object of inspiration to make themselves feel great about their own lives. 

It's exactly the same thing when on fb you see someone run with prosthetic legs and the caption says 'what's your excuse?' Making the reader place the PWD as a super human when most likely  all they wanted to do was go for a run like anyone else!

The worse thing is that I know everyone around me who doing this is thrilled with me for 'persevering' and 'overcoming obstacles' and are telling me this all with good intentions but it just makes me want to curl up in a ball and hide - I just want to be treat the same as any one of my peers - is that so much to ask?

This post isn't about every person I know - so don't freak out if you think it's you. Actually to be fair it's about nobody outside of school really so yeah most of you who read it are fine

Byeeeeeeee

DOLPHINS! DOLPHINS! DOLPHINS!

Hi,

So remember a few months back I mentioned I was going on a holiday to Florida with a charity called dreamflight (they take children with life changing disabilities and illnesses to the theme parks of Orlando for ten days without their parents)  yeahhhhh so that happened......eeeeeekkkkkkkkk....

I came back a few days ago so I'm still jet lagged, so apologies if if this post doesn't make any sense!! 

What to talk about first????! I know the highlights! 

For me, and probably most of the other 191 (192 including me) VICs (Very Important Children) one of the biggest highlights was swimming with dolphins. It was an phenomenal experience - from touching/stroking them (they feel like rubber if you ever wanted to know, think of hard boiled eggs, same texture) to being able to watch the other kids in your group, of whom the majority of wouldn't shut up about how excited about it since the coach journey down to Heathrow, swim with Cindy (Cindy was our dolphin) and feeling sooo happy for them, to then swimming with one for myself with the BIGGEST grin on my face cause we were all buzzing for eachother. It was truly amazing and one of the best days ever! And being in the Dolphin group made it just that much more perfect. The only downside to that day was getting in and out of a wetsuit....I swear I'm never putting myself or anyone else through that EVER again. 

Another highlight was the early morning and after park swims we had. I know the idea of waking up at 6 am to go swimming isn't that appealing to most back home, but when you are there and it's already like 20 degrees outside in a heated pool underneath the stars watching the sun rise it makes it the best time to be awake, especially when the pool was practically empty. What made it even better was that former DF child Paralympic swimmer Liz Johnson was sitting with pool patrol most mornings and as she has practically the same type of Cerebral palsy to me she helped me improve my technique so I stopped going round in circles. I'm no Paralympian that's for sure but I definitely gain confidence and that's one of the many goals of dreamflight.

The funny thing is that I never expected it to have such an dramatic affect on me, I thought could just get on with normal life after being dropped off at the coach station and I wouldn't cry as we said goodbye to people from our group who left at Heathrow airport to go home. But I did cry and I haven't stopped thinking about dreamflight since I got home. It's so wonderful and strange how attached to people over ten days.

I have so many thank yous to say to everyone from the Dolphins group. 

Firstly to my Escort/carer for the trip, Ellie. Thank you for everything you do and for giving up your time to help the Dolphin kids like me for ten days. I know I've already said this in person but  thank you for having the patience and heart to take me and my roommate under your wing (or maybe more appropriately 'fin' -since we are dolphins) and supporting us so that we could have the best ten days possible without having to worry about our conditions and stuff like that, I know we are both missing your random dancing and cuddles already xxx 

Jo, dolphin leader, this couldn't have been as awesome a trip without your years of dreamflight experience. Everyone knew what to do and from a kid's perspective everything seemed to just flow (as a said before I'm still jet lagged I know this doesn't make sense!)

All the American helpers, you guys are awesome, as you would say. I don't think someone of you realise how important your volunteering is to how this charity operates from pushing wheelchairs to decorating the hotel, without your time and contributions the holiday would have been so much less lively and less fun for everyone. All the Americans that helped the Dolphins I will never forget you. thank you for all your support and for bringing so many smiles to everyone's faces.

The BA crew, Leanna and Claire, you both are incredible! I really can't put in to words the gratitude I think every single Dolphin kid has for you. From the hugs and hot chocolates to being on pool patrol and doing your real job of looking after us on the plane journeys, you did it in such style and you can just tell you are such kind and considerate people from the smiles on both your faces. I would have never have guessed how big your roles would be within the group but the both of you were as caring for me and my Roommate as Ellie was, and that really surprised me. Also side note: you were  both so good at putting on my leg brace and I was very impressed by that as well xxx

Finally Pat (founder of dreamflight): 

I just want to say a big thank you to you for starting up a charity which over its 30 years has impacted so many people's lives. I have learnt things about myself over the ten days that I would never have realised if it wasn't for dreamflight and I have met so many amazing people and friends whom I will never forget sharing once in a lifetime experiences with. Thank you for dreamflight; it's boosted my confidence and self-believe and I hope it carries on to change people's lives for another 30 years. Thank you . 

I can't believe it's actually finished, dreamflight 30 is over, the best days I've had in forever are done;I won't see my dolphins til March time *sad face*  BUT roll on the reunion! 

It was an extraordinary trip. At some point I will be doing something to fundraise for this awesome charity but in the meantime here is the link to find out more:

http://www.dreamflight.org

Byeeeeeeee

Politics

Hi,

One thing nobody really teaches you is how politicised having a disability is. The state metaphorical tossing you aside and saying your a waste of resources. Especially now, your whole being in society, government wise, determined to whether you can work. If you can, you're not disabled 'enough' and get practically nothing. If you can't, you're lazy and deserve the bare minimum.

  

Accessibility is seen as a burden and us becoming too demanding, as the greedy they claim us to be. We turn invisible, subhuman ; the others. We are portrayed by them as burdens to society for simply wanting to exist in the world as any other person does.

 Weekly survival is one thing that is in constant jeopardy. From losing jobs due to sick days, to rising costs of adaptations and accommodations  (and cuts to services that provide them). The threat of your support from the state disappearing because of austerity, most likely, that they caused and are failing to stop - the list goes on.

Most right to die advocates passionately fighting for euthanasia to be legalised, instead of fighting for equal rights for PWDs. Doesn't sound right in my opinion. Not fighting for accommodations. Not fighting for accessibility. Not fighting against cuts which put PWDs in these dire conditions that they think this is the way out. Instead fighting for our right to die, and not improving the situations we have been put in today.

Think about it, disability and politics go hand in hand. Scary right?? 

Savio and Dreamflight

Hi,

So you can probably tell by the title, this blogpost is about my week instead of some hard-hitting disability information. I've done a lot this week to be honest and I'm extremely excited about one thing, but more on that later!

Both Monday and Tuesday were pretty ordinary: 6:45 am wake up for school, trying to drink 2 litres plus of water (drunk about 4 each day), going to school on 5 hours sleep due to a mix anticipation of the fore coming days and well how can I put this, social media! Also I had to finish packing. Anyhow I don't have much to say about those 2 days apart from they were pretty much normal and okay!

Then came Wednesday, the first day of retreat. Again I only had roughly 6 hours sleep for the same reasons (damn it snapchat!) I arrived at school like normal on the council transport bus, but instead of a school bag in my chair, a suitcase and I headed up to the PE department to drop off my stuff and sign in. Pretty straight forward. Then it was time to get on the coach AKA the part when all the unflattering Snapchat stories commenced (E, I'm talking to YOU!) and we drove for goodness knows how long until we arrived at Savio. For the rest of the day it was mainly settling in and stuff like that.


Thursday is when all the main religious stuff took place. ( I go to a catholic school, what do you expect) a reconciliation service and one of the most comical Masses I've experienced, isn't hard to claim that title haha, happened. It was just funny, I can't really explain why. Later that night it was the disco and I can honestly say I've never seen so many people trying to the Macarena in such close proximity to each other. The whole thing was hilarious especially getting teachers to dab.


Friday came round soon enough, by this point I was shattered, completely and utterly shattered. The majority of the day was spent doing affirmation, basically writing nice stuff about other people. We had our lunch of fish fingers, then we packed the coach and climbed aboard for our trip home. Surprisingly leaving Savio was more emotional than I first anticipated. It felt weird, like I wasn't ready to go back to school. Anyway we arrived back about 3.15 and it was starting to rain. Classic British weather. With the help of one of my teachers, I got all by stuff into my mums van and we drove home.

Whilst driving, Mum said something along the lines of "I've got something really exciting to show you when You get home, and I need to film it." This really started puzzle me and a load of irrational ideas popped in my head. She said it with a wicked smile on her face, so I knew it would be something I was going to be excited about.
We got home, by then I was fully shaking with anticipation. I sat in the kitchen at the table; my mum brought through a a4 envelope and started filming. I opened said envelope which had a letter in it, at the top of the letter it said in big bold letters 'your child has been chosen to go to Orlando, Florida with dreamflight Oct 2016' not going to lie I screamed.

Apparently when we first met my neurologist, I was 1, the head nurse Jane, mentioned to my mum this charity, dreamflight, which takes disabled children aged 8-14 to all the major Orlando theme parks and said I may go with them one day. For the last few years Jane kept on saying I wasn't ready until my last appointment late last year. And my neurologist has been doing the nomination form behind my back. In fact my mum found out that I got a place around a month ago! And all my carers knew. And everyone kept it a secret, which knowing some of my carers, must have been really hard!

So I'm going to go to Orlando! Ekkkkkkkkkkkkkkkkk I'm so so grateful and super excited. It's like 115 days away (not like I'm constantly counting down or anything- honest!)

Byeeeeeeee

OMG blog-aversary alert!!!!!!!

Hi,

You know what I've just realised? I've been doing this for a whole year. Uno año! It's super surreal that not only have I stuck with it (my biggest commitment- well apart from vegetarianism) its that people even bother reading the ramblings that I some how scrape into a post,I can't imagine a room of 1000 people let alone 14 thousand people, it is slightly scary to think that that's the amount of views I have at present.

So no matter if your someone I know, my friends or teachers, who I feel like I've forced this all down their throats over the last 12 months- sorry about that!- or if your a person who's come here on their own accord, thanks for reading, thanks for talking and most importantly thanks for putting up with me, I'm definitely not the best disability blogger out there BUT I am on the second page of Bing, which I think is an achievement considering the random stuff on Bing. 

I literally feel like this Dog at the moment 

Anyways,

Byeeeeeeeeeeee

Hollywood

Hi,


(Trigger warning: suicide)

So, all of the time we hear of celebrity endorsed campaigns and charities in aid of suicide prevention. Normally addressing the viewer directly and the celebrity talking about their own attempted suicide or about a case study, reassuring those watching they aren't alone and said charity will help them, if they reach out to it. We are all familiarised with these ways breakthrough. Even Hollywood films are used to spread these vital messages, right?
For any able-bodied person, the answer, in general, would be yes. So why are Hollywood writers and directors telling a completely different message to the disabled community?

So many films are depicting the life of a PWD isn't worth living, that we are supposedly wanting to kill ourselves to end our 'suffering'- that that's the only way to escape what 'unfair' lives we live. That we aren't worth it.

A extremely recently film, me before you, is in a line of rom-coms to go down this plot route. Although I personally haven't seen this film, from reading articles and reviews of it, this is what many disability activists make of it.

(The striped back plot is that a guy named Will is super rich with a city job, but becomes quadriplegic after an accident. His carer,Louise, is horrified when Will wants to visit an assisted suicide clinic to end his life. The pair obviously fall in love, but Will still wants to go ahead with his original plan.)

At the film premiere the activism group 'Not Dead Yet' staged a protest and some activists have voiced their discomfort with the plot
“The message of the film is that disability is tragedy and disabled people are better off dead,” said disabled activist, Ellen Clifford.  “It comes from a dominant narrative carried by society and the mainstream media that says it is a terrible thing to be disabled.”

I don't really know what to make of this topic to be honest. On one hand I feel like it provokes discussion about disability which are extremely important to get into mainstream media. However, it literally leaves a window of opportunity for so many people to stereotype PWDs as suicidal, due to the fact that there is a lack of representation of PWDs in films and TV shows.
But one thing that I'm sure of is that Hollywood has created this plot line and pulling the pity card to get more money. Always the case!

Anyway, sorry this is so late- lack of inspiration

Byeeeeeeeeee

Invisible disabilities.......

Hi,

Now, something that really bugs me is when arrogant people think that invisible disabilities/mental illnesses aren't a thing. In fact one in ten children, aged between 1 and 15, live with some form of mental illness/distress and 1 in 4 adults will experience some form of diagnosable mental heath illness in one year, with 1 in 6 adults experiencing this at any given time. According to a 2001 record, it says mixed anxiety and depression are the most 'common' mental illnesses in the UK. So in reality, invisible/mental illnesses are so widespread and can affect anyone. 

I don't want to come across as nagging or anything but here are a list of things anyone shouldn't say to a person with a invisible disability, and yes I know and am aware I've been doing a load of lists recently, sorry if they are getting tedious!

So here's the list:

1. You have what? I've never heard of it (Well your not the expert, they are)

2. You need to exercise more (Believe it or not, some peoples disabilities aren't cured by the supposed 'miracle' of working out)

3. Aren't you feeling better yet? (This can make people feel a hella lot worse tbh)

4. But you look fine. (The key is in invisible and mental)

5. Maybe anti-depressant would help? (Maybe that person doesn't want to be medicated)

6. You are taking too much medicine. (Are you in the medical profession and their doctor? No? Not your decision)

7. You need to change your diet (Unless you are their dietician/doctor or them-self, not your problem)

8. It's all in your head! (Yes that may be true, not really its very helpful)

9. Losing weight will help. (Again, not always a miracle cure)

10. If you just had a more positive attitude....(Don't you think they try that every minute of the day?)

Sorry its so short,

HALF TERM HOLIDAY!!!!! YAY

Byeeeeeeeeeee

Language recap........

Hi,

(Trigger warning: ableist language)


I've written about this sort of thing before and I just want to recap it because as I've been more aware of it, it's been like driving me up the walls when I notice it at school from both teachers and pupils and it's ableist slurs.

The most common one I hear on a day to day basis is 'cr*zy'. Basically it the raw form it's an ableist/psychophobic slur used to ultimately degrade people who have or suffer from mental illnesses/distress and it should be only used by a person who is part of said community when describing themselves. (e.g I call myself a 'cr*pple' sometimes although my peers cannot call me it without explicit consent, if that makes sense!).

But in today's world it has come to be a everyday thing in 3 core different situations, here are some alternate words to use:

Situation 1.
When describing something intense
Eg someone saying "she's a little cr*zy" or even "that was cr*zy/ins*ne" (it applies to synonyms too)

Alternative words:
Excessive
Extreme
Vivid
Unimaginably
Ridiculously
Impassioned
Hugely
Intense

Situation 2.
When describing something negative/traumatic
Eg "the car crash was cr*zy" or "injustice in the 21st century is cr*zy"

Alternative words:
Alarming
Chilling
Horrific
Frightful
Distressing
Eerie
Hellish

Situation 3.
When describing something unusual/ridiculous
E.g "You have some cr*zy habits." Or "This place is ins*ne." (Again synonym)

Alternative words:
Absurd
Bizarre
Unrealistic
Illogical
Preposterous
Unconventional
Inappropriate


I just want to put it out there- I'm not writing this in order to shame you, I just want to spread awareness of what these words originally meant and say that we should be a bit more mindful of language choices which could offend; yet we are still human, slipping up is certain inevitable, that's okay. I just want people to at least try and get it out of the norm of social interaction- at least once.

Byeeeeeeee

guest post..............

Before I show you this post, I just want to say a huge thank you to the person who wrote it, you know I've been feeling rubbish recently and this made me so much happier, I cried and I never get that emotional over stuff like this:

So here it is ladies and gents,

Hello there! 

I’m some stranger that you readers aren’t used to…and I feel honoured to post a lovely, cheesy rant on the CP Blog! So, lets say I’m called ‘E’. HI then! I’m ‘E’ and I feel like me and Ruthie have been friends for most of my life, and that we’ve known each other for ages (because of how well we get on!). When really, we’ve only known each other for a few years.

It all started in a science lesson, when I was seated next to Ruthless. Firstly, she came across as a very friendly, brainy person, with her infinite tallness…AND-Since I would always have trouble crawling through science, Ruthie would be by my side, helping me out with explanatory speeches of what I’m stuck on, and often a ‘Copy my answers, then!’ tactic. Soon our friendship was already beginning to make an appearance! She had me laughing with her random outbursts of One Direction songs (Even though she swears she doesn’t like them!). Also, the CP Blogger totally blew me away with her knowledge! SHE’S SO CLEVER. I don’t care what you say, Ruthie! You are and you know it! Moving on, every Science lesson, I could feel our relationship getting thicker, stronger, between us. Like a magnetic pull - accept we weren’t THAT forcefully attracted to each other! *well I think I messed that simile up…*

Moving on, Ruthie is a brillant friend. She’s so independent, glowing with inspiration, and I’ve just gotta love her to bits no matter what! Since, our friendship is a long, firm chain. More links are added the more personal, deep secrets we blurt to each other, and the inside jokes that never get old. This ‘chain’ does have it’s rusty sections, but it has it’s stronger parts, too. 

Every time I see Ruthie, she has a wide grin plastered across her face, which is usually followed with a series of looks exchanged between our locked eye contact (Those looks carry so much inside jokes, and inappropriate laughter at things that only us will ever know about…hehe!) 

ANYWAY-finally! I’ve pretty much done now. Sorry to bore you all with my long, more personal rant. As you can see, mine and Ruthie’s friendship has A LOT to say! What about the fact : we already know way too much about each other that we’re stuck as friends for eternity? Or : we’re both so weird but we still choose to be seen with each other? ETC. So, thank you for coming on this long-winded journey through many words, and mainly for getting to the end of this post! 

Good bye! X