>REPOST: My Submission To The Consultation on DLA Reform #spartacusreport

>I originally wrote and posted this in February last year. It’s the text I submitted to the consultation on DLA reform that happened then. I am reposting it today as a part of my support of The Spartacus Report.

I am lifelong disabled. Always have been and always will be. Specifically I have cerebral palsy (CP) and use a wheelchair 95% of the time. I’m able to stand and take a couple of steps, enough solely to move between bed, wheelchair, toilet, powerchair etc. I also have clinical depression and anxiety. This was not caused by my physical disability but is made much worse by it. I was diagnosed with this in 2003 and have been on treatment for it almost continually since then. I have many concerns about DLA reform.

As someone who is lifelong disabled I’ve been in receipt of DLA at the rate of Middle rate care and Higher rate mobility since DLA came into being. There is no cure for my CP which means I’ll never improve to a state where lower levels or no DLA is needed by myself. CP being a static condition also means that there is little chance of my condition becoming such I require higher levels of DLA. As such I have an indefinite award. That doesn’t mean it’s a permanent award, it just means that they recognise my circumstances are such they need not be reviewed regularly.

I am concerned the greater impact of these proposed changes hasn’t been assessed correctly. I live in Oxfordshire and in 2007 my support from Social Services was withdrawn as I wasn’t considered to have high enough needs. Since then the criteria have become even stricter. My DLA has enabled me to continue living alone. It means that I can pay for a cleaner to come once a fortnight and mop my floors, change my bed and clean the kitchen/bathroom. The rest of the time I live in a very messy house I have no choice. It pays for extra washing because I’m incontinent and also because sometimes my clothes catch on my wheelchair and get dirty quickly (and sometimes for extra clothes because they rip). It pays for new batteries for my powerchair as I have no other form of out the house independent mobility but don’t qualify for one of the NHS. For heating as I get cold easily. Slightly more expensive foods that come in packets I can open without help and things which are low effort to prepare. If I was to lose my DLA I would have to go back to social services and they would need to find that help for me, something which would likely cost more than the DLA I receive each week.

My family (parents and younger brother and sister) all work full time. They’d have to find a way to help me out much more than they already do. I’m not being melodramatic when I say they would likely end up having to do all of the support that DLA allows me to arrange for myself. Doing that on top of full time work would be very difficult. My mother runs her own business which would likely suffer if we found ourselves in that situation. Surely that isn’t good for the economy?

Then there would be the increased cost to the NHS. My family wouldn’t want me to feel guilty or like a burden but it’s how I would feel. I’m 29 and I’m independent, but I’m really scared I’ll lose that. That’s making my mental health problems worse – I had a panic attack yesterday about the possibility. If the situation becomes a reality it’s very possible my medications will need to be increased at a higher cost to the NHS. I’d also no longer be able to afford repairs and maintenance on my powerchair so would have to go back to the NHS for reassessment there. Parent and other family carers also have a high level of health problems due to their caring responsibilities, again another possibly increasing and likely high cost to the NHS.

Currently I live in a fully adapted flat which I rent from a housing association. It was designed for a wheelchair user as it was built. Without my benefits and the support they provide I could face having to give up my flat and move back with my parents. I’ve never lived in the house they currently live in and it’s not suitable for my needs. A disabled facilities grant or similar would be needed to adapt it, another cost which DLA helps avoid in my case and I’m sure in many others.

Emma Crees

17th February 2011

>I am A Writer In A Wheelchair and In Print (Again)

>I have an article in this months Disability Now!

It’s called Triumph Over Cuts Tragedy and it’s about the One Month Before Heartbreak campaign.  Mostly about the sense of friendship and community we managed to build.  To me that’s probably more important that what we did fighting the cuts.

Please comment and let me know what you think of it – I love getting feedback and it’s all really useful.

Finally, I’d just like to take this opportunity one more time to send huge huge thanks to everyone who took time to write, tweet, video, comment, facebook and so many other things as a part of One Month Before Heartbreak.  It might have been my idea but you are all part of the reason why it was so successful!

>Some Writing Links

>As my mum commented in an e-mail yesterday I seem to be everywhere at the moment.  A slight exaggeration but I have had some success and exposure lately.

I was asked to write for Community Care’s Service User Blog about One Month Before Heartbreak as a promotional thing.  One Month Before Heartbreak: You Can Speak Up For Disabled People Too

The Guardian have been great with supporting One Month Before Heartbreak and they’ve mentioned us several times.  This Society Daily article pulled out several OMBH contribution to highlight including one of mine (my This is Disability image)

I’m now a contributor for Where’s The Benefit?  The first piece I wrote for them is about the case of Riven and Celyn Vincent.

The even more exciting thing about that article I did for WtB is that it was picked up by Society Guardian on Friday with a big chunk of it quoted!

I think there are a couple of other opportunities “in the pipeline” if you will but those aren’t definite.  I’ve certainly had a successful ten days or so!

>Several One Month Before Heartbreak Related LInks and News

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(I’ve just posted the majority of this on the One Month Before Heartbreak blog but there is some extra more me related stuff at the bottom here)

Today has been amazing for support for One Month Before Heartbreak.

Sue Marsh (Diary of a Benefit Scrounger) wrote a piece for The Guardian which appeared in Comment is Free.  We’ve been mentioned by The Guardian several times but getting a piece in Comment is Free is huge.  Amplify the eloquent voices of the disabled protesters is Sue’s piece and it’s really good.  It contains many links to specific posts on the One Month Before Heartbreak blog.  Also that article has received well over a hundred comments and although I’ve not read them all there has been some good discussion and support there.
Kaliya Franklin (known by most people as Bendy Girl from Benefit Scounging Scum) was just on Talk Radio Europe talking about One Month Before Heartbreak, The Broken of Britain and the DLA cuts.  I listened to that interview and she did a very good job of getting our points and concerns across.  Talk Radio Europe have promised us their ongoing support for which we thank them!
The petition to end DLA reform continues to gain signatures..
Most importantly, the National Assembley for Wales has stepped up to oppose DLA reform

Oh, and the new Broken of Britain logo and twibbon were revealed

There are a couple of other “in the pipeline” things which maybe happening but it can definitely be said that it’s been a good day for The Broken of Britain / One Month Before Heartbreak teams.

I’ve not personally updated about me myself and I for some time.  I’m doing well!  My attempts at weight loss are well and truly stalled and in fact my weight is up a lot which isn’t good.  And I’ve not been fitting in any exercise.  Both are things I hope to get back to next week.

I’m very tired as a result of running on adrenaline for most of the weekend.  I’ve also been very anxious today and spent part of the day feeling nauseous.  I think that might be coming down from the adrenaline of doing so much over the weekend.    The rest of this week and next week I’ll be taking it as easy as possible for the simple reason that I have to.  The sheer number of silly mistakes (e-mailing a woman and calling her Jim because I misread her name as that?? She thought it funny but so embarrassing for me) I’ve made and the level of spasticity in my legs makes that very clear.  And that’s with trying to do what I could for this from my bed!

I’ve completely lost my train of thought.  Too tired to continue.  More tomorrow!

>A Few One Month Before Heartbreak Links

>I am very tired and need to go rest (waiting for my dinner to finish cooking and my mum to pop round or I’d already be in bed with a book or in a heap in front of the TV).  But I just wanted to highlight how amazing One Month Before Heartbreak has been.  I’m completely and utterly blown away by what we’ve done and the support we’ve had.  If you google “One Month Before Heartbreak” you get more than 13 thousand results.  13 THOUSAND.  that’s seriously mind boggling.

I’ve not had time to share very many links or to do more than skim the posts that I’ve been scheduling to the blog.  I know that Bendy Girl is also exhausted but pleased.  We aren’t stopping, we’ll continue as long as we have submissions so please keep them coming!

I thought that I might highlight a few links that have caught my eye.  I’ll probably do this every day for the next few days as I go through and read and digest.

You Will Never Take Away My Shoes

Loved this post!  It reminded me of the “I will wear purple” poem

The Best Thing DLA Allows Me To Do

As a former RDA member myself (I went for 14 or 15 years and only stopped when I went to uni) I was nodding along as I read and smiling as it brought back memories.

Take Two

Heather and I are blog friends.  Reading this post gave me new insight into her and her family.  I hadn’t realised how long she’d been dealing with DLA etc.

Why I Keep Trying.

Totally blown away by this post.  I didn’t expect the level of support we got from non disabled people.  Hoped for it but never really expected as much as we had.

Disability cuts don’t affect me

Love the honesty in this post and even though we are in very different situations I could relate to a lot of it.

I will post more links tomorrow, my concentration is shot from all the  work I’ve done this weekend and I can’t give the contributions the attention they deserve

>Emma’s Story

>

Many of you know that I’m the one who had the idea for One Month Before Heartbreak.  You know my name is Emma Crees, maybe that I’m FunkyFairy22 on twitter and perhaps even that my blog is A Writer In A Wheelchair.  But a lot of you don’t know very much about me.  I’ve not had time to read many of the contributions.  I will have to take several hours once this event is over to read them.  Spread over several days most likely.
I’m crazy busy with all this but loving it.  I’ve not had time for writing yet couldn’t sit by and let so many of you share such personal stories without sharing something more about who I am and my own story.  Some of you may have seen this before as it has been on The Broken of Britain blog as well.
Emma’s Story.
I’m a single woman in my late twenties who lives alone and dreams of being a writer. I have ten GCSEs most of which I got B grades for. I have three A’Levels and a degree. And I’ve never worked.
I have Cerebral Palsy (CP). That means I’m life long disabled and in my case I use a wheelchair most of the time. In 2003, I was also diagnosed with depression and I’ve spent most of the seven years since then on anti-depressants.
My income is Disability Living Allowance (DLA) and Incapacity Benefit (IB). It’s not always easy.
When I was 16 my DLA was transferred from being paid to my Mum to being paid to me. I was asked where I wanted it paid and I named a specific post office. They arranged for it to be paid into a different post office to the one I asked for. Because the one they chose was my closest one (and presumably because it was where my Mum had it paid for years). Never mind that it was a tiny village post office with no wheelchair access!
When I went to Uni I wasn’t eligible for some means tested benefits I could otherwise have applied for – because I had the right to apply for a student loan. Even if I didn’t take it I couldn’t have the benefits. I took out the loan and now have a lot of student debt. I’ve been told that if I ever work it will only be part time. And based on my fatigue levels doing a few hours a week of voluntary works I agree with those who said that. Realistically (and I do hate to say this) I will never pay it back or even reach the earnings threshold where you must start repayments. Yet, every year the Student Loans Company sends me a statement. It’s a continuing waste of money. I try not to think about my student loans if I can help it. There’s no point. I’m not in a position to do anything.
Once, I was asked to provide a sick note long before the previous one was due to expire. I phoned and queried why and was told it was standard procedure to check if I’d got better. I replied that I have an incurable condition. The person from the benefits office told me “Well, you still might have got better.” Very upsetting! But at the time I had a wonderful GP who was also disabled. It really helped me to deal with someone who “got” being disabled. His response was very verbal and I can’t print it but basically he had a suggestion for where they should be told to go.
Benefits being stopped because of DWP mistakes has happened to me a few times. Once they couldn’t even tell me why it had been stopped, just that it shouldn’t have been.
My condition means I will always qualify for middle rate care and higher rate mobility on DLA. It won’t ever improve so I’ll never be able enough for lower rate care. And I don’t anticipate my condition deteriorating to an extent I need higher rate care. To get IB or ESA you need 15 points on the WCA. I once worked out my score on the scale they use. I got 15 points on the very first question alone. And overall I got enough points for more than three people to claim IB. Yet sometime in the next few years I face being reassessed and moved to ESA. This worries me a lot. I think it’s probably an expensive, stressful and pointless waste of time for someone in my position. And then a few years after that a move onto Universal Credit. Another worrying and expensive waste of time most likely. The government think differently. So in an attempt to save money they cause stress, worry and fear, making people’s conditions worse and possibly even ruining lives
I belong to a Sailability group. One of our boats is called Spirit of Ivan. We were given it shortly after Ivan Cameron died and it was so named in his memory (with the permission of the Cameron Family). The committee wanted to call it that to honour him as “a little boy who will never sail her.” It’s not quite as weird as it sounds, although the Camerons have never been part of our group, we are the closest Sailability to Witney where David Cameron’s constituency is. By naming our boat for him we were also showing our support for his family. For the loss of one of us.
Now David Cameron is Prime Minister. I thought he understood what disability and being disabled meant. But he and his party won’t stand up for us. I am proud to share my story and be a part of The Broken of Britain. If no one will stand up for us, we’ll stand up for ourselves (even if several of us can’t actually stand!).

>Just Trying

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I wrote this poem back in 2005 and thought it would be worth fishing out and sharing as a part of One Month Before Heartbreak.
I’m just trying
To be me
So much more than
The girl they see
I might have this thing
They call CP
But that isn’t
What defines me.
I am different from you
But I think I have it best
I need a wheelchair and always will.
Now I am different
But eventually
You will be
The same as me.
Thanks to the great equaliser called life
One day you too will experience this kind of strife
When you are old
You will understand what you’ve been told
But for now
I will try and explain it somehow.
Yet it is difficult to show
That which I innately know.
I have to spend
My life of wheels
My CP will never end.
I can live with it
Or long to be without it
The choice is mine
To be made with help divine.
When I was a child
I wanted to die
Life with CP
Seemed too much for me.
Time heals
What was once a punishment
Isn’t any longer
Instead it makes me stronger.
If when you get old
Your health time steals
And you must spend your life on wheels.
Remember what you have been told.
Hold your head up high
It will become normal as time flies by
As you learn how to cope
Don’t lose hope.
I’m just trying to be me.
Can’t you see?
Being me
Happens to include
This thing called CP.

By Emma Crees, A Writer In A Wheelchair

>This is Disability

>This is a post for One Month Before Heartbreak

This is an image I made several years ago in an attempt to show that I’m so much more than just a “disabled person.”  It has various small photos of me doing different things all round the ages.  Then it has words next to them describing who I am.  Including (not an exhaustive list of what’s on the image) sister, passionate, graduate, procrastinator and colourful. Others of the words are things I like.  For example writing, reading, swimming and sailing.  In the middle is a big blue box which has This is Disability written on it with the ability written in all caps.  Below that it has the following quote from Harry Potter and The Chamber of Secrets.

“It is our choices that define us, not our abilities.” Albus Dumbledore.

>More One Month Before Heartbreak Details

>

With just a few days to go before One Month Before Heartbreak I’m sure everyone wants to know what will happen on the day.  I know I do and I’m running it!
This is a work in progress so please bear with me/us.
There will be a master links list on The Broken of Britain Blog.  So please let us know where you’re post is so we can include it.  A brief idea of what it’s about is also useful (just topic not details).  You can do this in the comments on the blog or on twitter.
We also have a One Month Before Heartbreak blog where we hope to cross post as many submissions as possible.  If you are happy for us to cross post your submission please let us know.
Please try to comment on some of the things people post.  I would love if everyone who takes part could comment on at least one other post.  Blog comments rock and can be especially useful in a situation like this where people may be posting personal things.  It takes a lot of guts, please respect that.
If you see something you people like make sure to tell others about it.  Blog it, Facebook it, tweet it, e-mail us and let us know.  Shout it from the rooftops, even!  We want to get the word out about what the benefit cuts mean to us.  Share the details of the link list and our blog.
Equally, I hope that there will be several “highlights” posts from different bloggers after the event as a kind of round up.  If you do one I want to know about it!  Or if you have any ideas about One Month Before Heartbreak, let us know.
On Twitter? Use the hashtag #ombh in One Month Before Heartbreak tweets.  Or the Broken of Britain hashtag #TBofB.   #UKCuts and #disability are also useful hashtags if you can fit them in.
Consider changing your profile picture on Facebook, twitter or other social networking sites to the One Month Before Heartbreak logo for the 3 days of the event.  And posting the link to explain why.
We want to make as many people as possible aware of One Month Before Heartbreak.  E-mail your MP and tell them about us.  A template letter will be available from Sunday for people to use.
The most important thing I think for everyone involved is to enjoy it and stay safe.  No one is under any pressure to contribute on each of the days, or to take part at all.  Please don’t feel under any pressure to do more than you are able or comfortable doing.
And finally, a really really massive thank you to everyone who has helped to raise awareness and get the word out there so far.  I’m absolutely blown away by how big this is shaping up to be – and I couldn’t have done it without you all!
Emma

>Less than a week to go – One Month Before Heartbreak

>I need to write a post with some more details of One Month Before Heartbreak, I really do.  Hopefully if I don’t get that done tonight (I’m off out in about half an hour not sure for how long) I will get it up tomorrow.

But one really, really great thing you can do to help us promote One Month Before Heartbreak is to use this image that Lisa (@IconicImagery) made for us.  Put it on your blog.  Use it as your facebook profile pic or your avatar on twitter.  Or some other site that I either can’t think of or don’t know about (if you do think of another site, let me know. I’d hate to be missing a site I might love!)

It’s a purple triangle point downwards with a big red heard in the middle and splatters around it, a bit like blood.  At the top is says 1 Month Before Heartbreak, at the bottom The Broken of Britain.  And I absolutely love it. Love it.