Trapped: My Life with Cerebral Palsy by Fran Macilvey

I was lucky enough to receive a free copy of Trapped: My Life with Cerebral Palsy by Fran Macilvey in exchange for an honest review. She also answered some questions for me.  The fact that Fran sent me a free copy of her book doesn’t influence my review but I do attempt to be fair. I think this is the third memoir of a person with CP I’ve had to review (but not the third one I’ve read if that makes sense) and I think of those three this is the one I enjoyed the most.  I think the fact that as of this writing Trapped has 20 reviews on Amazon and all but 1 give it 5 stars (I don’t give stars to books in my reviews on my blog) backs that up.

Here is the synopsis:

Image description: The book cover for Trapped.. It shows a young girl sat in profile inside a box which has a lid which she is reflected in. The top of the cover is a sea green and the bottom a sandy yellow.
Image description: The book cover for Trapped. It shows a young girl sat in profile inside a box that has a lid which she is reflected in reinforcing the idea she is trapped. The top of the cover is a sea green and the bottom a sandy yellow.

Living in the Belgian Congo with her husband in the 1960s, Fran’s mother became pregnant with a daughter. However, right after she gave birth in the hospital, she felt strange. Unbeknownst to anyone, another daughter was on the way, but before anybody responded, an hour had passed. Because of the delay, Fran was born with cerebral palsy. Growing up with her siblings in Africa, Fran always felt different. When everyone else was playing and having fun, she would watch and wish she could join in. After the family moved to Scotland and Fran grew older, her hurt turned into anger, self-hatred, and suicidal depression. Then one day, someone looked at her and saw a woman to love, and that was the start of her journey to self-acceptance. Fran has written the painful truth about her life to help readers understand how disabled adults really feel. In her revealing account, she shows just how hard it is to maintain the appearance of a “normal” life. More importantly, out of her million and one mistakes have come lessons in real acceptance, peace, and joy, which she would like to share with her readers.

 

As I eluded too yesterday when I posted my interview with Fran one of my friends saw Fran’s comment on my blog asking if I wanted to review her book. And after reading the sample on Amazon my friend (who has a young grandchild with CP) told me she’d found it upsetting and I shouldn’t read it because I’d get depressed by it.  Now, admittedly the idea of calling a book Trapped did jolt me a bit because it’s negative and on the whole my experiences of having CP are very positive.  So my first thought on hearing the title Trapped was it wasn’t what I’d choose.  But having spoken to Fran and read her book I can see why she chose it.  And I didn’t find the book depressing at all.  I can see why my friend found it upsetting because she’s a very emotional person and also because as a person with CP my lived experience is very different to that of someone just beginning to walk the CP life with a child they love who suddenly has this thing which makes them different.  That’s a topic I need to blog more on but it’s not one for tonight.  My friend has now commented that she wants to read this and I was thinking about that.  I think she’ll get a lot out of it but my first thought would be more that this is a book for people with CP and maybe for the families of older kids with CP say tweens or teens to get an idea of what life can be like. For newly diagnosed or those who’ve had their diagnosis for a while but who are still young I’d say read it but do so with an open mind and remember that CP is not just one condition and books like Trapped (and blogs like mine) aren’t there as a guidebook – this seems to be an issue in some CP groups with parents of young ‘uns in just lately.

 

I found a lot of similarities between Fran’s experiences and the way she describes thinking and feeling and my own whilst reading Trapped even though I think it’s fair to say the way in which we are affected by CP is very different and I am probably much more disabled than Fran reading between the lines.  That’s one of the best things I like about disability memoirs especially CP ones and why I wish I’d been younger than the 18 I was the first time I read one.  I grew up with several CPers my own age but knowledge from older ones and realising someone else has been there is always good.  Fran is roughly 15 years older than me and that made me realise how much attitudes to disability have changed not just in the years between when she was growing up and when I was growing up but also within my own lifetime. Which is a very good thing although I was a little shocked by some of what she experienced whilst very young.  On the whole I was left wondering just how much of the differences in our experiences were simply due to the progression of time and the disability rights movement and how much was down to simply different CP presentation/family/location/life in general.

Trapped is the perfect length and combines great writing with a level of honesty I wish I could share in my blogging.  It’s a good book and if I had a teen with a disability in my life it’s one I’d want them to read to start their introduction to crip culture and the idea of owning identity and your disability and being your own person. Highly recommended.

Fabric Fun

On Saturday I went to a craft taster workshop on fabrics. If I’d been sensible and/or thought about it properly it probably would have occured to me that it wouldn’t be particularly good for my specific  CP. I’ve never been particularly sensible about such things so it never occurred to me. It wasn’t what I expect and I don’t think I’d go again. But I did manage to make something. A crap something, but something.

A big part of that was that a friend of mine had also gone and so was able to do needle threading, pinning of fabrics and little bits like that which I couldn’t. I also deliberate chose to use strips of ribbon because they didn’t require cutting (I don’t find using scissors as difficult as I used to but it’s not an easy thing for me – and cutting in straight lines is something I’ve yet to master on things that are any bigger than basically miniscule.)

Here are the work in progress pictures like I did for both the celtic clay and mosaic taster workshops I did

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A rectangle of black felt with a bright pink ribbon sewed diagonally accross it.  I used a very messy running stitch, made no attempts at doing so equally or neatly and used a “contrasting thread” by which I mean one that was easy to see.

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The same thing with a dark purple ribbon sewed diagonally on top the opposite way.

I really should have sewed along the middle and not around the edges.  That much sewing killed my hands. But rumour has it you’ve got to make things really secure. I don’t plan on a next time but if there were I’d overrule that with CP needs come first.

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Then I added three vertical ribbons, bright purple on each edge and light pink in the middle.  I put a round black and silver patterned bead in the middle of each of the purple ribbons.  I put three sort of diamond shaped beads of the same design on the light pink one.
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The incredibly messy and pretty tangled back of my work.  I carried my thread quite far in a few places to avoid having to tie it off/cut it/restart sewing.  Hence the mess!

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The finished object was then mounted on a bigger piece light pink fabric which had been cut out with pinking shears to give it an interesting look.  The ribbons had also been trimmed to more uniform/sensible lenghts too. The person running the workshop did the cutting and sewing of that for me because my hands were done by the time I got to that.

In which I get Ranty

(subtitle: and lose my shit all over the Internet.)

This is ridiculous. In fact It’s the most stupid thing ever and frankly I probably shouldn’t dignify it with a response but I can’t let it go.

There’s an American company called 3eLove. They sell a range of products with their logo on – the logo is a wheelchair symbol like you see on many different things but with the wheel replaced with a heart. It’s called the wheelchair heart.  I can’t remember if I’ve blogged about it before or not. Their products have a variety of slogans on as well as the wheelchair heart.  In 2012 my parents gave me a sum of money instead of a Christmas present asking I buy myself something special that I wouldn’t usually buy for myself.  I bought myself a wheelchair heart necklace and I really like it (prior to shit that went down yesterday I probably would have said I love it but…). If you look at the pictures of my brother’s wedding you can see I’m wearing it there (I’m not sure how clear it is though). A lot of my friends have quite a few 3elove products but the necklace is the only one I have. I’ve not seen anything else they do that really called to me like that did and made me feel paying postage from the US to here was worth it (seriously, yesterday a friend linked me to one of their tops and told me how much she was paying to get it shipped here and all I could think was “I could buy a second top for the cost of postage if I bought it from a UK place” But obviously that’s not the company’s fault).

So anyway I kept hearing that yesterday (20/01/2014) was going to be Day of Acceptance run by 3elove.  And this apparently was a Big Deal.

I’m not a fan of “awareness raising” and the like and days that do that because I’m not really sure that they achieve anything that can’t be achieved by just being seen and doing and living.  I’ve written about that several times before – here is one example and there is a link to more in that entry. So I was hearing a lot about it and I sent a couple of tweets.

I tweeted:

#dayofacceptance is really poor activism and a thinly veiled way for @3elove to market themselves. Don't Other me this way #Disability

— Emma (@FunkyFairy22) January 20, 2014

and then I sent some unrelated RTs and chatted a bit with a twitter friend about stuff including what I’d just tweeted.

Then I tweeted

I don't want or need a #dayofacceptance. I deserve seven. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. And Sunday. (@3elove)

— Emma (@FunkyFairy22) January 20, 2014

Here’s the thing: I don’t want one day a year where people go out of their way to accept me and my disability and make a big deal of it. I want to be accepted every single damn day there is and I want it to be normal. You know I don’t want people bothering to tell me that my having CP is acceptable to them.  By making a big deal of it it makes me different to those in the majority and Others me. (Othering is the process by which we use an action of similar to class particular people as different and “not one of us” see this link for more detail).

I suspect a big part of this comes from medical model versus social model and cultural differences. But lets just say that those two tweets which were just random thoughts didn’t go down very well.

By my last count I’ve had tweets disagreeing with me and telling me I’m wrong from four different people.  Two of whom decided to troll me and keep telling me I was wrong. The reason I was wrong? Well, basically because I didn’t agree with them and that was just wrong. I was missing the point. I was wrong. I’ve not been able to determine what the point I was missing was because explanations haven’t been forthcoming let alone ones that actually make sense. (I RT’d a few of them and several of my followers went “yeah… makes no sense.”). Never mind I was wrong, I was hurting my followers by being wrong, and bringing loads of people down.  And most importantly I was completely wrong.

I am more than happy to have these sort of discussions if people take the time to say “well to me I see this as XYZ why do you see it differently?”

It’s also been suggested by the trolls that I need to accept myself.  I don’t know how I can do that when I’ve been in a wheelchair my entire life, would hate to be anything but and would turn down a cure if one should magically appear. My wheelchair is a huge part of my identity as well as being a part of my body.

Acceptance. Dude, it’s a journey not a destination but I’m pretty much all ready there and have been my entire life. Just because I don’t like your day doesn’t mean I hate myself.

I am surrounded by people who love me, help me, support me, tell me off if I need it, wind me up, tease me, laugh with me, cry with me, knit with me, sail with me, and do all sorts of things for me and with me.  They accept me too.  I thank them often for what they do for me and I appreciate it and they thank and appreciate me when I do stuff for them.

But I don’t thank them for accepting me. Because I shouldn’t have to. I am a part of their lives and they are a part of my life because it’s what we want.

If people I have to deal with in a professional capacity (either theirs or mine through my unpaid voluntary work) have a problem with my disability then I would hope our interactions would drip into their brains and slowly bring change and I would focus on that. If people I don’t have to deal with have a similar problem I would still hope the same thing but frankly I’d give them a chance then cut them out of my life. I’ve not got time to change lives, I’ve got a life to live.

Yes I know attitude to disabilty aren’t what they could be.  But in my life time alone  I’ve seen huge changes for the better (and maybe one or two for the worse). That’s continuing.  It’s just more effective if we live our lives and celebrate who we are and our contributions. One day isn’t going to change it.  In fact I worry it’ll make people think “well they wanted me to do it on 20th Jan and I did so they can’t expect me to do it everyday.”

People might remember the old TV ads that used to be on in December time “A dog’s for life, not just for Christmas.”  Well, my disability is for life not just one day and I’d prefer people remember that.

(I’d also prefer people to remember that a post of twitter is just a tweet. It’s not an attack on their views, just a differing opinion and there is absolutely no need for shit like the trolling I had yesterday. But I think that’s probably wishful thinking.)

(first time comment moderation is enabled on my blog – if you haven’t commented before your comment will be held. This is standard to prevent spam).

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.

Just for Today

Dearest blog readers I need to tell you something very important.

You see, there’s this thing called Cerebral Palsy (some people call it CP for short). It’s a disability. I have it. So do thousands of other people all over the world, probably even millions. I don’t suffer from it. I have it. That’s important. It’s not a terrible thing. There isn’t a cure and it’s life long but it is what it is. And what it is is difficult at times but generally ok.

And what I need to tell you, my dear blog readers, is that I need you to be aware of the fact that CP exists and I have it. But just for today. You by some bizarre reason didn’t know that I’ve got CP and what that is yesterday, I’m confused but that’s ok. You wake u tomorrow and you’re like “Emma told me something important yesterday but I just can’t remember what that is…” Ok. Just so long as you’re aware of CP today. This is, apparently, very important.

Because today is World CP Awareness Day. So if you could change your Facebook profile picture, or wear green* or even stop and think about CP every few minutes this will apparently make a huge difference to the millions of people like me.

Or you know just ignore the hype and get on with living life.

Because CP isn’t just one day, it’s everyday and I’m not sure there’s any point to days like this. I don’t really know what they achieve (apart from giving me a chance to write sarcastic blog entries like this) nor am I sure there’s anything I want them to achieve with it. I wrote more about this in March this year.

Work for disability awareness (which as I’ve said before I tend to think is more relevant that awareness for individual disabilities) because you want to. Not because a bunch of disability organisations got together to declare that today is the day.

Or you know just ignore the hype and get on with living life.

Yes, I know I said that already but it’s true. I think we make more of a lasting impact by being out there and living our lives than we do by big stunts. My friend Angela often tells me that I educate without meaning to every time I write. Plus, I’d be doing that anyway so it’s low effort awareness. My sort of activism 🙂

I’m really glad we had this conversation you read my rant dearest blog readers.

Lots of love,
Emma xxxxxx

You Know You’ve Got CP When…

…the shoes you call your ridiculously impractical shoes are the same sort as your able-bodied sister and mother frequently wear as sensible everyday ones.

For years I’ve lived in trainers. But only a specific sort. So much so that the pair I have now is at least my third identical pair but come to think of it is probably actually my fourth. And I should probably buy a new (but still identical pair) because no matter how many times I look for something different I can never find it. The idea that Skechers might one day discontinue them secretly fills me with horror.

Because no one else does shoes which
Are supportive
Undo completely and very easily
Have no form of heel
I can wear without socks regardless of the time of year
And are deep enough to accommodate my often very swollen feet.

Its no secret that I’m not a fan of shoe shopping and that shoes hold no real appeal for me. The more often I can go barefoot the more I like it.

But a few weeks I went shopping. I needed new black trousers and I was beginning to think a spare pair of Skechers would be an idea. My current pair probably have a few months wear in them at least but having worn my last ones until they fell apart and then for several uncomfortable days after as I literally had no others, a spare seemed a very good idea.

So I’m in Evans getting trousers (and an unplanned but gorgeous top) and I’m looking at shoes because you never know. And I spot a lovely pair of ankle boots.

Several years ago when I was at uni I did have a pair very similar I wore often. My shoe related issues weren’t quite so extreme then but you know it’s still possible…

So being that I’m unable to try shoes on when shopping I check if I can return them if they don’t fit then buy them. And I don’t want to try putting them on myself first in case they don’t fit (my unusual shoe putting on techniques can batter a bit which isn’t good if I’m returning them). A quick phone call to my sister telling her I’ve bought completely unsuitable shoes follows.

She asks in what way they’re unsuitable and I’m like
“They probably won’t fit but even if they do I probably won’t be able to get them on myself and even if I can I probably won’t be able to transfer in them.”

And she’s all “oh in pretty much every way then.”

I popped up to see her and she informed me they aren’t shoes, they’re boots. And then helped me try them on and surprisingly they fitted. They didn’t quite zip up to the top but its not an issue.

Eventually a long while later I sit on my bed and try them myself.

It’s sort of like
I know they fit.
I know how they should go on
But I can’t work out how to put them on cripple style

And as much as mum told me to take them back I’m keeping them. Because every girl needs a pair of ridiculous shoes. Even if they are meant to be the sensible type shoe.

(I was going to end this with something I’ve heard a lot which is that every girl should have a pair of shoes she loves but can’t really walk in. But you know in my CP world that’s pretty much every single pair of shoes I’ve ever owned so I thought it too obvious).

You Know You Have CP When…

…you get congratulated on still having the wheels on your powerchair. Twice. On separate days.

…you go to say goodbye to the same person who congratulated you because they’re leaving the bureau and moving on to a new job. And amongst the “wishing you well” comments they make they include that they “hope your wheels don’t fall off”

…you wear out all four if the castors on your powerchair in 14 months. Hence all the wheel falling off comments because it was a genuine possibility while I was waiting for the replacements.

…your Dad books an accessible taxi to take you, him and your mum to your brother’s wedding. When another staff member at the taxi company has queries he assumed you booked it and calls you saying “hi you booked a taxi” leading to a very confused conversation where he’s adamant you did and you swear you didn’t. Of course that wasn’t helped by my Dad booking a month to the day before the wedding…

…you try on the dress you bought for your brothers wedding for a second time. This time you do it in your wheelchair. The dress that’s an inch or so too long for you? Hangs down into the mechanism of your chair and needs taking up by 6 inches.

…a complete stranger walks past you and tells you to slow down.

…you use a hoist once a week at sailability. But you’re the hoist expert.

…you get a drop down rail fitted in the bathroom. The guy fitting it looks confused at part of it and then tells you it’s a handle to help you pull it down. You decide against telling him it is, in fact, a loo roll holder.

…you get them back out to check the rail because you think it’s not secure. They make adjustments and then demonstrate how they can’t move it before assuring you its secure. You then use it to transfer and immediately move it in a way it shouldn’t go.

…you’re manuevering round a very tight space and check with the person holding the door for you that you’re nowhere near their feet. They declare you’re not. And then you immediately run their foot over.

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.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

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.