campaigns – A Writer In A Wheelchair

On Volunteering and Housing Day

Today is #HousingDay (hashtag housing day) a day designed to promote social housing and highlight all it does for people in the UK, how important it is and just what the need for social housing is.

I know from my own experiences just how much having access to a flat that is fully adapted to my needs, is safe and secure (in terms of both safety and tenancy) and affordable is. It’s more than a roof over your head it’s the ability to make plans and do things and get on with your life that might otherwise be impossible.

And in both parts of my CAB role (adviser/gateway assessor and social policy coordinator) over the last few years I’ve seen more and more people becoming homeless, struggling to find somewhere to live that meets their needs either due to availability, costs, access needs or landlords who won’t accept housing benefit.

I rent from a social landlord – Soha Housing – to be specific and a few weeks ago they made me aware of a call from TPAS for residents who were willing to share their own stories of being residents and volunteering to work with their housing provider. I’ve been involved since 2010 and we’ve gotten to know each other pretty well. So knowing I like to write they asked if I’d be interested in sharing my story.

I wrote my story and it was pretty tricky. There’s no doubt that the volunteering I do – both for Soha but also for CAB – plays a huge role in my life and in many ways has changed my life. Even taking the CAB aspects of my volunteering out of the equation there was still loads I could say about the matter and it was difficult to know what to include and what to leave out to make the point about why resident involvement is so important to me in just a couple of hundred words. But I did my best and sent it off and Soha submitted it to TPAS. And we didn’t hear anything about it.

Fast forward to this lunchtime and I went on twitter to discover that TPAS had chosen ten of the resident stories they had received to highlight and help promote Housing Day. Mine was one of the ten. I’m really proud to have the opportunity and a bit surprised! Two of my fellow Soha residents and friend Carole and Richard also had their stories chosen. All ten of the stories are well worth a read – find them here.

Looking back at what I wrote today I think it’s also fair to say a lot of what I wrote about how being involved with Soha helps me – especially my last paragraph – can also be applied to my CAB work. People have in the past said to me they don’t understand why I volunteer and how I could just sit at home and no one would blame me. But I’d be a lot worse off – and possibly in need of greater medical and other support – if I did that. Because that’s the difference volunteering makes.

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).

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.

For the love of a book

I love to read. This comes as no surprise to anyone who knows me or who reads this blog regularly I’m sure.

There’s just something about picking up a book and losing yourself in it. It makes me think, I learn stuff, it’s enjoyable. They make me laugh, cry and just feel. Sometimes I reach for a book as pure escapism and it also means as long as I’ve got a book or my kindle in my bag I can fill a few minutes waiting at the hairdressers or the doctors really easily and it makes the wait less annoying.

According to statistics 1 in 6 adults of working age in the UK find reading difficult or impossible. Quick Reads is a charity dedicated to improving literacy. They aim to show that books and reading can be for everyone. Each year they commission big name authors to write short books that are specifically designed to be easy to read. They are the same as mainstream books in every respect but are simply shorter and easier to tackle for adults who are less confident in their reading skills. The books are then sold through major retailers, online booksellers and are loaned from libraries. They are also very low priced – usually £1 – which makes them even more accessible.

I can’t imagine not being able to read. I just can’t.

Books are such a huge part of my life and so is writing. I don’t know what it would be without it. But the thing is the ability to read is about so much more that books. It’s about being able to read directions to places you need to go. How much and how often to take the paracetamol you just picked up. instructions for your new oven or even how long to cook that pizza.

If you can’t read and you get an official letter what do you do about it? At CAB often I see clients that need to check what a letter means or what to do with a form they’ve been sent. Some of the time it’s because it wasn’t written in plain English and they need jargon translating. We’ve all had letters like that where we think “I know what it says but I don’t know what it means”. Letters from the DWP are a frequent example. But often people who come in with a letter only have a vague idea what it’s about because of their literacy level or haven’t been able to read it at all.

Letters about benefits are very distinctive. They come in a brown envelope and the typeface peeking through the window of it is this one particular one that to me and I’m sure many others screams DWP. And “Doom!” to some. I know a letter is about benefits before I open it and as I’m currently awaiting an ESA decision I appropriate all brown envelopes with some apprehension and ones obviously from the DWP with more.

But I can read. I can open that letter and know what it says with as little or as much delay as I choose. Many people can’t. I can’t imagine what the fear of that letter would be like it if was multiplied by the time it took to find a friend or relative who could read it or to get to a CAB or similar that was able to help. I know an inability to read fluently has meant deadlines and appointments missed to some people – and potentially worse.

So when Quick Reads told me about their six new books for 2013 and asked if I’d like copies and to help promote their literacy work I of course said yes! I’d read a few before and knew they were very enjoyable and was intrigued to see what they had this year.

The six books are:
A Dreadful Murder by Minette Walters
A Sea Change by Veronica Henry
Doctor Who – The Silurian Gift by Mike Tucker
Love is Blind by Kathy Lette
Today Everything Changes by Andy McNab
Wrong Time, Wrong Place by Simon Kernick

I’ve been reading some of the books over the last few days and I’ll be posted a review or two later today.

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.

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.

>Left Out In The Cold Press Release

On the eve of the second reading of the government’s controversial Welfare Reform Bill, on 9 March, disabled activist Kaliya Franklin stripped off to demonstrate what the result would be for disabled people across the UK if disability benefits are slashed to the bare minimum.

The photo shoot depicts a naked Franklin lying on the sand on a wintry beach, next to her empty wheelchair.

“I was absolutely frozen when I took my clothes off for the photo shoot,” says Franklin, “but it was nothing like as cold I and other disabled people will be if the government removes our essential benefits.”

The Left Out In The Cold awareness-raising campaign is being organised by disability rights group The Broken of Britain, of which Franklin is a founder and director.

Says Franklin, “It’s vital that every able-bodied person remembers they are just an accident or illness away from being disabled themselves. Many people think if they do become disabled that the state will look after them.

“But the fact is that even under current provisions, disability benefits are not enough for disabled people to live on. If the Welfare Reform Bill is passed, the situation will become unimaginably worse.”

In January, Franklin released a video on YouTube that explained how able-bodied people would be in for a major shock if they found themselves needing to apply for disability benefits. The video can be seen at http://www.youtube.com/watch?v=q7EXSpmrVMU.

The Broken of Britain group has been campaigning since summer 2010 to raise awareness of the government’s wider anti-disability policies. The group has consistently drawn attention to disabled people being the target of unjust government rhetoric and sham consultations, tabloid slander and political myths.

It says: “We are now the targets of deep and damaging cuts to disability services that are contained in and symbolised by the Welfare Reform Bill. The Bill disguises cuts and changes to a number of benefits, from housing benefit to Income Support that will punish disabled people.”

Notes for editors

1. Kaliya Franklin and other case studies are available for interview.

2. A high resolution version of the campaign photograph is available on request.

3. For more information, contact Rhydian Fôn James at rhydian@thebrokenofbritain.org or 07774021785, or Kaliya Franklin at 07714208602

4. Contribution-related Employment Support Allowance will be restricted to 365 days, meaning that a married claimant would be unable to claim after a year if their spouse works.

5. The Welfare Reform Bill confirms that Disability Living Allowance will be replaced by the Personal Independence Payment which will use unfair assessment and conditions to disqualify 20 per cent of the current DLA caseload.

There is no evidence that supports government’s claims that DLA is “broken” and in need of reform. In fact, most evidence suggests that DLA is an efficient and popular benefit, and this support includes the vast majority of the DWP’s own research.

The inclusion of this benefit change in the Welfare Reform Bill took place before the consultation on DLA reform was completed.

6. Other cuts to disability services not included in the Welfare Reform Bill are:

• Plans to remove security of tenure from social housing tenants, as costly adaptations are a barrier to moving regardless of size of property.
• Many changes to the provision, entitlement to and charges paid for receiving social care and disability services provided by local authorities.
• The Independent Living Fund which provided for the highest level support needs in combination with the local authorities is now to be scrapped without consultation.
• Access to Work reform redefines what it is “reasonable” to expect an employer to provide for disabled staff, meaning it is likely to push many currently employed disabled people out of work and back onto benefits.

7. Disabled people are more likely to live in poverty than any other group in the UK and more likely to be unemployed or in low paid jobs. 60% of those with a work-limiting disability are unemployed, with 25% wanting to work.

Left Out In The Cold by Kaliya Franklin is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.
Permissions beyond the scope of this license may be available at http://thebrokenofbritain.blogspot.com/.

>A Good Writing Day – With Links!

>Last week, Mike from Artist Inlet Press contacted me to ask if I would write something for that site. His only request was that I should write about something I’m passionate about.

I’ve been trying to do lots of writing and make progress with it over the last few weeks so I jumped at the chance to write that piece. It’s not a site I’d been to before but I’ve been reading some of it since then and it’s got some very well written, lovely essays on there. I’m pleased to have been asked to contribute and know that more people are seeing my writing. I’ve been working on that today and as I wrote about sailing, really enjoying it.

Sail Away is now posted over at Artist Inlet Press. I would welcome your feedback on it.

In terms of other writing, I also posted Don’t Cut Us Out about a Scope campaign over on the Disability Voices blog yesterday. If you live in the UK, please consider taking part in that campaign, it doesn’t take a few minutes to do so.

Scope sent me a tweet saying they love the Disability Voices blog and telling me they follow my blog. Then they did a Follow Friday of “some great disability related bloggers” and included me in that list. I was incredibly flattered and pleased by that.

Finally I’ve set up pages on the sidebar which have links to all my guest blogs and articles which are online and also to my book reviews.

>Why is the R word so offensive?

>A few days ago an anonymous comment was left on one of my entries asking why the R word is more offensive to me than idiot or moron.

For some reason that seemed to be a bit of a difficult question for me to answer; I’m not sure why. I think for me it’s an obvious thing (not that I mean to suggest the person who asked the question is wrong, I should probably make my points clearer when I write). I’ve been wanting to respond but not sure how to.

I think that both the I word and the M word aren’t used as deliberate insults designed to target and hurt a specific group of society any more. I’m not sure of their origins as words. The R word however, that’s no longer used in it’s correct/original useage – to describe someone with a specific type of disability in a medical way. It’s used to ridicule and to hurt a specific group of people. Disabled people. And it’s unacceptable.

If you’re going to take one thing away from this entry, you could take anything I’ve written above, I hope I’ve made it clearer than I did before. But I’d much rather you went and looked at this post about a much loved daughter and the R word. It says it much better than I ever could.

Or you could go and read about the battle Nicky Clark had with Ofcom and Channel 4 about the R word being used. 750 Mencap members gave evidence of the hurt and hate they’d encountered from the R word. Yet it still took a protest and multiple appeals before anything was done. As Nicky wrote in her post, if the terms used had been racist or anti religion the apology would have been immediate. This isn’t a small problem, it’s a big one. Unfortunately however it’s a big one not many people take seriously.

And I’m one of a group of people who want to change that. That’s why the R word bothers me more than the I word (idiot), the M word (moron).