One year later

In February 2013 a woman called Reeva Steenkamp was shot dead by Oscar Pistorius.  She was his girlfriend and he admits he shot her, claiming he mistook her for an intruder.  There were a lot of problems with the way it was covered in the press and the way twitter and facebook reacted to the murder of a beautiful woman by a famous disabled man.  Misogyny, ableism and the works.

At the time I wrote about it over on Bea Magazine in the post Disability and The Reeva Steenkamp murder.  I also wrote a little more about it on this blog in my post disability in the media.

I never expected to be writing about the same problems with coverage again a year later.   Oscar Pistorius will stand trial for her premeditated murder starting tomorrow.  And bookmaker Paddy Power are trying to make money from that by encouraging people to bet on the outcome of the trial. The idea of which makes me sick.  I’ve been back over on Bea this afternoon writing about it – One year later and still the same issues – disability and the Reeva Steenkamp murder, part two.

Or, if you don’t want to read my post, at least consider signing the petition calling for the Paddy Power ad to be banned.

I hope there won’t be a disability and the Reeva Steenkamp murder, part three post.  But given how much interest there is in the case and with the trial about to start I suspect at some point I will be returning to the topic for a third time at least.

Unfortunately.

Quick and Dirty #Disability Theory

I posted on Facebook earlier this afternoon that I’d given someone a spur of the moment elevator pitch length explanation of the social and medical models of disability and they’d understood it without my needing to clarify any further. This was, and is, a win. Especially because I really believe they actually understood it and didn’t just say so to shut me up. Then one of my friends posted that she doesn’t speak disability.

And apparently I have blog entries on here dating back to 2006 but have never defined the models. Despite having both a social and a medical model category on here.

So here goes. This will be quick and dirty but hopefully makes sense.

The medical model of disability states that impairment and disability are solely caused by medical conditions and are not influenced by anything elses. This, I believe, is much more commonly used in America. According to the medical model I am a person with a disability and am disabled by my cerebral palsy as a result of which I use a wheelchair.

The social model of disability states that it is the barriers that society puts into place and the attitudes of those around me which disable me. It acknowledges the fact that yes, I have cerebral palsy and use a wheelchair but that if I’m in a fully accessible and supportive environment I can and do access things the same as everyone else. This model would say that I am a disabled person and my disability is caused by the failings of society to provide equal and fair access that meets my needs.

There are other models of disability such as the charity model (sometimes known as the tragedy model) which depicts disabled people as a victim of circumstances beyond their control for which they need to be pitied.

Further confusion can be and is caused by the language of disability. It’s also sometimes the cause of debate or even argument between disabled people. Persons with disabilities (often shortened to PWD) is a medical model term as I said above but it’s also used by some people who prefer it as it’s person first language and shows they are more than their condition. Others (myself included) prefer to use disabled people regardless of which model they subscribe to because it’s identity first language and shows what they identify as.

And then there’s the argument about whether or not the a in disabled and disability etc should be capitalised (i.e. disAbled, disAbility) to bring the focus onto our abilities and what we can so rather than what we can’t. Personally I hate that.

Finally there’s the people who say you shouldn’t use the term able bodied because we’re all able but in different ways. The term nondisabled is the most commonly used and it’s the one I like but it’s difficult for people to understand. And to be honest no other minority describes the people outside of it by what they’re not so I don’t know if it will ever fully replace able bodied. Another term that is sometimes used is temporarily able-bodied or TAB (some people use currently able bodied, I don’t mostly because I heard of TAB first and the acronym for currently able bodied would be the same as where I volunteer and so confusing). This refers to the fact that statistically speaking most people will become disabled as some point in their lives whether due to illness, accident or simply aging.

My own journey with disability theory and the language of disability is ongoing and ever evolving. If you go right back to the beginning of this blog you’ll see the term PWD used a lot but it’s a term I no longer use. I’ve used TAB a lot in the past too but I’m not sure I’ve done so for years. Neither term feels relevant to who I am and where I am now.

In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

Disability in the media

I’m paying a second visit over at Bea Magazine this month.  I wrote about the disability issues which were raised by the news that paralympian Oscar Pistorius has been arrested on suspicion of murdering his girlfriend Reeva Steenkamp.

You can read it here:

Disability and the Reeva Steenkamp Murder

The coverage of disability in the media has always been problematic but I’m really hoping this might be the beginning of it changing. I suspect that it’s more likely that it will change the way violence against women is covered by the media than disability.  Still I hope.

Last year I was asked to speak to the local paper about my sailing group having some new equipment after fundraising for over 6 years and raising half a million pounds for it.  It was on the phone and I did tell them I was a wheelchair user because it was relevant (the equipment will mostly help wheelchair users and means I can be more independent).  I didn’t tell them that I had CP.  But in the article it said “Ms Crees who has cerebral palsy and uses a wheelchair said…”  Because that’s what defines me in their eyes.

That and another experience a few years ago where something I said was taken slightly out of context to make it appear like a terrible disability thing in a news clip mean I would be very wary talking to the press again. Basically they obviously really wanted to me to answer yes to a question and wouldn’t stop asking me varients of it.  In the end I said along the lines of  yes it seems like that to you but…”  The final news clip had me just saying “yes it seems like that.”

And I’m just me.  A regular crippled girl who writes and likes to sail.  I’m not high profile at all.  The fact that Oscar Pistorius is high profile is a big part of the reason why there are so many issues relating to disability in the coverage of Reeva Steenkamp’s death but it’s not the only reason. Crimes are committed by disabled people every day.  People are murdered everyday, sometimes by those disabled criminals or by others.  That doesn’t always hit the news. This did and brought with it issues about disability magnified to a whole new level.

I didn’t think of this until after I wrote the piece for Bea but I suspect disability is why it’s getting so much coverage.  If a regular Olympian, say, Greg Rutherford (being only he was the first to come to my mind) was accused of the same crime it would be a big deal.  But I’m not sure it would be quite as big a deal with so many people shocked and talking about it as when it’s the so called “Disabled hero”

I’m not the only blogger who has been tackling these issues.  William Peace has also written about the problem of disability role models (in which he also covers Helen Keller) over on his blog Bad Cripple.

Tell A Feminist Thank You and Disability Mentors

Since this afternoon I keep seeing tweets pop up with #tellafeministthankyou (hashtag “tell a feminist thank you” for those who find those hard to read).

I got to thinking.  It would be good to have a similar thing for people who campaign on disability issues.  But what would you call it?

Feminism is generally considered to be a good thing and to have made amazing strides forward in rights for women both in this country and others.  The suffragette movement and the fact women in the UK can vote being just one example.  It’s the one that comes to mind because I just read The Children’s Book by AS Byatt and the votes for women movement plays a role in the book.

And I suspect that a lot of what has happened to improved disability rights and everything around it has a basis in the feminist movement.  Once you can get someone to change their mind on something it’s often easier to get them to begin to shift slightly on a different but related issue such as disability rights in my opinion.  The two issues are very different but they compliment each other and one can lay the groundwork for the other.  Although, obviously there are also times when to link the two issues together would be inappropriate just as there would be with any other “ism”

But going to the hashtag you could never have “tell an ableist thank you” (or disableist depending on your term of preference, mine I think is moving more towards ableism at the moment) because ableism is a bad thing and rightly so.

There are so many people who have been my disability mentors along this journey.  Not all of them have disabilities themselves but most of them do.   And one or two that most of what I took away from them was how not to be. Some I have thanked.  Many I have not and some I doubt I’ll ever get the chance too.

I considered sharing names and linking to blogs of some of the awesome people who’ve been that for me at different stages at my life.  But the fact of the matter is I could never list them all and I’d hate to miss someone off.

Most of them are people I either met through the internet or who I only know online.  I grew up knowing many others with CP and a few with other disabilities we wheeled or walked our path growing up disabled together but I’m not sure mentor is the term I’d use for those people.  Possibly because for me the path to true acceptance and being happy in my own skin didn’t come until I was 17 or so.

If you’ve played a role – any role – in mentoring me or in the fight over the years for the equal treatment and rights that I and others deserve as both a disabled person and as a women then Thank You.

That’s something I don’t think we say enough.

International Day of Persons with Disabilities

Today is the UNs annual International Day of Persons with Disabilities.  That’s a very medical model term (although I suspect it was changed because it’s “people first language”) and I’m much more of a social model girl so I shall henceforth refer to it as a day of Disabled People.

The UN statistics state that 1 billion people worldwide have a disability or approximately 15% of the population.  I don’t know how they’ve classified disability but I have to say whilst the 1 billion figure feels right to me based on previous figures I’ve heard, I was a little surprised it was so low as 15%. I realise this makes no sense!

I wanted to write something and I wasn’t sure what.  And then I got to thinking that somewhere, right about now, there are new parents with a brand new baby, maybe even in the hospital where I was born.  We’ll assume they had a baby girl and they named her Emma, like me.  She was born today.  And one day her parents will be sat down and told by the doctors “your child has Cerebral Palsy”.  Perhaps she was born prematurely and deprived of oxygen like I was. She might end up a wheelchair user or she might end up walking with crutches.  Regardless they are now carers and she is disabled.  She’s still their baby girl, their Emma, and they love her but she’s not the what they planned for when they said as all expectant parents seem to “as long as it’s healthy”

Tonight, another family will sit down to tea together.  It’ll be Dad and his young kids sharing a pizza and laughing and joking.  None of them knowing that when Dad wakes up tomorrow he won’t be the same guy, he’ll have had a stroke while he slept.  Guess what? He’s disabled now too. Amongst other things he’s lost use of his mouth and now needs tube feeding and a communication device. He’s still Dad… but he’s different.

And there’s a young woman somewhere – rushing off to work a little bit late because on this cold morning her warm bed was just too comfortable to get out of when the alarm rang.  She’s driving, maybe a little bit faster than she should but at 18 she only just passed her test and thinks she’s invincible. But the roads are icy and her car skids.  She survives but has to have an arm amputated and her life is never the same again. But she’s still her.

You might wonder what disability has to do with you or why you should care but the fact of the matter is – we are the worlds largest minority group.  And chances are one day you or someone you love will be part it too.

I’ve always thought that I was very lucky to live in the UK and that I’m accepted and I live a brilliant life.  A lot of things could be better but we weren’t doing too badly. But things have changed here in the UK and I don’t feel as accepted. This is something Kali has written about much better than I could in her post When Did We Forget?

So what do I want on this International Day of Disabled People in 2012? I want people to realise that there is no us and them. We are all in this together because there is no magic spell or shield you can use to prevent you becoming one of us – a disabled person or as we are now more commonly know – scroungers.

I can just about cope with living in the world as it is now – although I dearly miss the community we had and the world we lived in pre coalition and scroungers. But my hope is that for baby Emma, born today and newly disabled things are different.

I hope that on 3rd December 2042 when she’s my age it’s simply just another day and she marvels that disability was ever such a different big deal of a thing that it had to have it’s own day. I have absolutely no idea how we can get to that point. But I know that by everyone working together and doing what they can we can definitely do it. Because we’re disabled. But we’re also awesome when we come together as a community.

 

 

Speaking Out

A few days ago it came out that the little girl who went missing in Machynlleth in Wales last week, April Jones has cerebral palsy.  It kinda made me stop and pause a moment hearing that she’s got CP just like me more than anything else I’d heard about the case. The news coverage all seemed to use the term suffer “Missing Girl April Suffers from CP” screamed the headlines.

I posted to a facebook group for CPers that I belong too that I wasn’t sure whether to be impressed that she’d gone missing Monday night and it had taken until Wednesday night before mention of her disability was made in the press.  Or annoyed by the use of the term suffer.

Impressed because of the added shock value CP would bring wasn’t used immediately. And annoyed about the term suffer because it’s so negative and not appropriate.

Now the group I belong too is really cool and has some really opinionated kick ass people offering support and friendship. I love it.  I don’t think I’ve felt like I belong in an online disability group like I do here.  I also posted a similar comment about the term suffer on twitter.

And in both places there was a bit of a discussion on it. Some people felt like the term suffer wasn’t what mattered here, finding April is.    The group of CPers seemed to focus much more on the CP side and I felt like the tweeters had much more of an issue with my having an issue with Suffer. And I agree that locating April is the most important thing. Sadly however the search is now a murder enquiry and it looks like she won’t come home.

But I don’t want people to pity me. I want people to know that CP isn’t a disease.  It’s a disability, a life long condition that I live with.  And I don’t suffer from it.  I have it.  It’s a really important distinction. One that takes away from the automatic pity “this is something negative” response and shows that it’s OK to live and accept and simply be disabled and content.

Of course for the majority of the people reading that story about a missing five year old who suffers from cerebral palsy it’s just another fact in an already very tragic news story. And those of us who have CP or other disabilities might see it differently whilst still seeing the tragedy of April’s case.  That doesn’t mean I’m wrong to speak out about something seemingly trivial like language though.

I take my time before I speak out and sometimes I pick my moments, decide that now is not the time or this person will never understand or something similar.  The trouble is there is always a reason not to say “I’d prefer you not to use this term to describe disability because XYZ” and if I always went with that reason people would never know what I think.  I’d never manage to reach out and change anyones opinion.

I’ll always speak out whenever I feel I should and that I can.  That might mean that sometimes I say things that others don’t understand or that makes them uncomfortable. And occasionally I might come to regret it and realise that then wasn’t the time.

But at the same time it might be the thing that helps someone feel better about themselves as a disabled person. That makes me feel less like a worrthless freak hated by society (I’ve had days when that’s how I’ve felt) Or it might change attitudes.

I like my disability, I’m proud of it and I love my life.  I have friends and family who support me and I have brilliant opportunities, pretty much everything I need or want is in my reach if I want to go out and get it and I’m generally in a good place and enjoying life.

I want that for other people with disabilities too. I want disability to be seen as a good thing.  And OK so others think my brief comment is inappropriate.  I can’t do anything to help April. But I can speak out and help make sure that other little girls and boys with CP grow up to be accepted and not face negative stereotypes.

That’s so important I can’t describe it. And if I can do something about it, I always will.

Amped by Daniel H. Wilson

One of the things I really like about doing book reviews is when I fall in love with a review book that there’s very little chance I’d have picked up for myself.  Simon and Schuster sent me a copy of Amped by Daniel H Wilson and that definitely falls into that category.

Technology makes them superhuman. But mere mortals want them kept in their place. Enter a stunning world where technology and humanity clash in terrifying and surprising ways.
Some people are implanted with upgrades that make them capable of superhuman feats. The powerful technology has profound consequences for society, and soon a set of laws is passed that restricts the abilities – and rights – of ‘amplified’ humans.
On the day that the Supreme Court passes the first of these laws, 29-year-old Owen Gray discovers that his seizure-supressing medical implant is actually a powerful upgrade. Owen joins the ranks of a new persecuted underclass known as ‘amps’ and is forced to go on the run, desperate to reach an outpost in Oklahoma where, it is rumoured, a group of the most enhanced amps are about to change the world – or destroy it.

This is such a powerful book.  It’s one of the best I’ve read this year.  In fact I think I’ve only gotten so involved and hooked into one or maybe two books more than this one.  In terms of it’s feel it reminds me of I am Number Four by Pittacus Lore.  I was going to say not so much in terms of its plot but actually thinking of that as I write this there are a few parallels.

I’m not sure that this is a quick read.  I read it very quickly – in two sittings – but that might just be because it sucked me in and whilst I kept thinking “I’ll put it down after this chapter…” I never did.

I loved the depth of the characters and their interactions.  At the beginning of the book I thought this character was such and such and that character was X and so on and by the end of it they were all grown and changed and in a lot of cases completely different to the person I’d assumed them to be to start with.

There are a lot of parallels between this book and disability.  Particularly the current situation with disability services and benefits being massacred cut here in the UK.  And some of those parallels are really quite chilling.  I thought Daniel Wilson did a very good job of showing what it can be like to be “different” in some way and the negative reactions people can have to that and I liked that the path the characters took wasn’t easy with the difficulties glossed over but was gritty and painful and above all realistic.

I liked this book so much I’ve just downloaded another one by the same author – Robocalypse.  I’m looking forward to reading that soon.

There for the most deserving

This was a really good post in my opinion.  But wordpress ate it and it published blank with all the points I spent ages making gone off into the ether and not here on my blog where they should be.

It was about my friend who after being very ill, spending time in intensive care with multi organ failure, having nearly six months off work and being diagnosed with a life long condition.  And about how she’s new to the world of disability, support, benefits and all that entailled.  But already learning about not being “disabled enough”.  Being told by people that she should be able to get help but then discovering actually she can’t.

And it was about Karen Sherlock.  I didn’t know Karen but she was a disability campaigner.  She had diabetes, was visually impaired, was about to go on dalysis and was being considered for a transplant.  Karen claimed ESA and fought a long battle over many months to get moved from the WRAG to the support group.  ATOS considered her fit for work despite her many problems meaning she didn’t leave the house unless absolutely necessary and never alone.  She had medicals, filled out forms, there were many problems and mistakes a long the way and it was to put it bluntly a battle she shouldn’t have had to fight..

Karen eventually won that battle and was placed into the support group as she should have been originally.

She died two weeks later.

I’ve probably not made my points as well as I had in my original blog entry.  They certainly don’t have as much detail.  But I just wanted to welcome you to this new world.

It’s called Britain in 2012.  It’s a world where “the most deserving” get the help they need.  But where no one knows just who this “most deserving” group of people actually are.  And where some of us are beginning to doub they even exist.

>Canvas Bags – Tim Minchin

>

Take your canvas bags
When you go
To the supermarket
Why use plastic bags when you know
You know the world can’t take it

Take your canvas bags
When you go
To the supermarket market market
Don’t you use those plastic ones
No, no, no
Don’t you know that you’ll feel better for it

Take your canvas bags
Take your canvas bags
Take your canvas bags
To the supermarket

Just think about the world
And how the world would be fantastic
If we got rid of all the plastic
We just need to get enthusiastic
Start a competition gymnastic
Or a bag making comp at your school
Fuck it, make it interscholastic
Canvas is for everyone
Whether you be rebellious and iconoclastic
Or conservative or ecclesiastic
I don’t care if you’re loud and bombastic
Or quiet or virtually monastic
Sober or on the floor spastic
Yoga master or completely inelastic
I’m not trying to be ironic or sarcastic
Just do something drastic
To rid the world of plastic

Take your canvas bags
Take your canvas bags
Take your canvas bags
To the supermarket
Black out…!

Tim Minchin always makes me laugh. Especially this song which is so relevant to where we are now in our world. I thought of it today when the girl was packing my shopping at Sainsbury’s this evening. And I can think of one or two other people who read this who would like the song so… enjoy.

I have about 1K words done for NaNo. Must do some more later.