#NaNoWriMo 2011 (#disability #spoonie #mentalhealth) - by @CreativeCrip / @IconicImagery #TBofB

"This year I hope to finally set a realistic and achievable #NaNoWriMo goal by focusing on writing blogs for thecreativecrip.com #amwriting". Thus read my first social media status update for 1 November 2011. I am feeling "OK" today and unlike many others in the UK, last weekend's time change seems to have helped me a bit with managing Spoonie fatigue, the pain.and brain fog notwithstanding. After a mad round of tweeting I managed to crawl out of bed and get going.

A well-meaning new-found long-lost relative from across the pond decided to comment on the Facebook entry; "truth is I'm strategic..." she wrote. "...the goal is achievable you have to trust yourself to make it happen."

This was my response:

Not being funny but - as someone who has complex health problems (physical disabilities, illness and mental health) all the planning, strategies and jolly hockey sticks cheerleading in the world cannot guarantee a result. That's just #Spoonie reality - we do what we can, when we can ... unfortunately more often than not it means struggling immensely to do not very much at all... I give myself these pep talks and try strategies every year for #NaNoWriMo but don't really care if I actually manage to submit or even finish... its just helping me to focus on my blog and get some things done that I've neglected.

The thing is, I really would like to achieve a National Novel Writing Month win; I've wanted to for the seven years that I've tried. It's only in the past few years that my increasing problems with concentrating, memory and ability had nothing to do with just being lazy and more than a bit to do with the severe clinical depression that went undiagnosed since I was a teenager battling the Bulimia I still struggle with from time-to-time on the cusp of 46. The added struggles with physical disability and invisible illness makes it even more challenging to get started or keep going even if I do. Even a simple post like this has taken hours, with many stops and restarts.

I am blessed for every day that I have to actually wake up and The Great Spirit willing, I will have many many more. Unfortunately (as I explained to the psychiatrist at my last CMHT check), every night I go to bed my head spinning with a few ideas of things to work on the next day. I make notes in my project books and smartphone when I can manage to not forget within a minute or two of having a scathingly brilliant idea. Then the sun rises and sets again without any of those things getting done. Thus is the vicious circle that constitutes my spoonie not #fitforwork life, day-in and day-out.

Unfortunately it is impossible to have a "normal" schedule. For those who would criticise that sentiment and make a "scrounger" comment; review my LinkedIn profile. Even if I hadn't had my previous career on Wall Street and in The City of London, the life I am forced to lead today still wouldn't be a lifestyle choice. I would gladly give up my need to have help from the State in return for good health and mobility.. I need help - in the form of a Careworker who visits a few times weekly so I don't have to go for months on end without being able to have a shower or shampoo my hair; someone who could take me to the supermarket and help with shopping; someone who would be willing to help me keep my flat tidy and make sure I don't ignore the brown letters of doom from the DWP; someone who would be willing to prepare meals that aren't burnt beyond recognition and make sure that I eat them; someone who could actually be a Lovely Carer (tm @BendyGirl) - which would help me immensely.

I have big dreams and small; and yes, a little fame as a writer and campaigner wouldn't unwelcome. But as Lydia Grant used to say in the opening of the Fame television series: "Fame costs, and right here is where you start paying - in sweat". Like the majority of people in my situation or worse - I'm not afraid of hard work and never have been. The relentless onslaught against disabled people from politicians, government bodies, general public and media takes a toll on my health. This, along with the  lack of Care in my daily life and constant worry about my finances, needing business help and having to move house again etc, makes something as "trivial" as trying for a NaNoWriMo win feel like trying to go up an icy hill alone on rollerblades. I may fail again; but in the words of Bob Hoskins in Maid in Manhattan, what defines us is how well we rise after falling.

I may be disabled, but I'm not dead yet.

Lisa J. Ellwood

Disability & Mental Health Campaigner

The Broken of Britain

Cross-posted from The Creative Crip Blog

Related articles

• NaNoWriMo is Here! (lifesmaze.wordpress.com)
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• Happy Halloween and Hello NaNoWriMo 2011! (dailypost.wordpress.com)
• What I learned through NaNoWriMo (enermazing.wordpress.com)

Free cinema entry for carers: the CEA card

We have had a CEA cinema card for at least 6 years. My wife gets high rate DLA and it gives me free entry as an accompanying carer at the cinema. We have a son who has severe epilepsy and dravet syndrome so I decided to get a card for him so that his carers can take him too.

When I visited the CEA Card site, I found that the scheme had changed since I last applied to a one year renewal rather than three years.

CEA cards can be obtained by people receiving DLA and allow an accompanying carer free admission

This trebles the cost for anyone with a long term illness, and there is the extra hassle of reapplying. Also if you are anything like us, turning up at the cinema with an expired card and having to pay extra. All very annoying.

The scheme is passported by having DLA. My son has a ten year award and my wife has an ‘indefinite’ award, so I emailed the CEA Card Company to ask if I could get a card for a longer period.

I received this prompt reply:

“The Cinema Exhibitors’ Association (CEA) is the trade body for UK cinemas and launched this non-mandatory scheme as one way in which a cinema can meet its obligations under the 2010 Equality Act. It recognises that some people because of their disability may need someone to help them access a cinema and provides that person with a free ticket to accompany them….. Initially the scheme provided a card with a validity period of 3 years from the date of issue. This meant that a person claiming Disability Living Allowance for a matter of weeks could still benefit from the card for the entire three year period. Reducing the lifetime of the card to 1 year from the date of issue addresses this problem…. Unfortunately we cannot provide ten year cards, all CEA Cards are valid for one year from date of issue.

Carrie Walters CEA Card Co-ordinator”

“awarded DLA for a matter of weeks”

I was surprised to find that they changed the rules in March 2009 citing unfairness of someone getting hold of a 3 year card if they had only been awarded DLA for ‘a matter of weeks’. Something I find incredibly unlikely. DLA has a long qualifying period and usually takes months to get. The only occasions I can think of where you might get it quickly and only have it for a few months is under the ‘special rules’. Under those circumstances it is fast tracked, the ‘special rules’ are for where you have a terminal illness and you are not expected to live more than six months.

I decided to try and get hold of the some stats about DLA claim length. So far I have only found them for Incapacity Benefit. IB_SDA_ESA_medical_duration_feb_2011_tables

These tables show that for Incapacity Benefit, less than 10 % of people are claiming it for under 3yrs. Obviously I need to find the figures for DLA. If they are similar it shows that thenew scheme is unfair as 90% of people are now paying three times the price they were.

CEA Card changes

I emailed the CEA Association itself via thier website and had another very quick response.

I got this reply from CEO of the Cinema Exhibitors Association

Phil Clapp wrote:

The change, which was introduced in March 2009, recognised the fact that there is now an increasingly high ‘turnover’ of people on Disability Living Allowance such that a significant number are now in receipt of DLA for a good deal less than a year. …. The CEA did consider a number of other approaches, and consulted a range of representative groups before making this decision. … we have received a small number of complaints from people who are themselves in receipt of long-term or indefinite DLA….. the truth is that were we to move away from the current standard annual approach to all applicants, then the costs around administering a more complicated scheme would inevitably rise and this would need to be passed on to those using the Card.

Phil Clapp | Chief Executive Cinema Exhibitors’ Association

I was very surprised to see that there is “increasingly high ‘turnover’ of people on Disability Living Allowance such that a significant number are now in receipt of DLA for a good deal less than a year” if anyone knows where I can check this please let me know. I am also interested in the range of represented groups that they consulted with, and why more of an objection wasn’t made at the time.

I replied sending Phil the stats I had found about Incapacity Benefit claim length and asking for if there are any plans to review the scheme. I think that even if they charged people twice as much to get a lifetime or three year award it would still be cheaper and fairer for everyone. They could reserve the one year cards for people with one year of DLA.

I am worried that the changes in the scheme are more about the “Disabled people are scroungers/fraudsters” mindset. They have made the scheme harder to qualify for on the presumption that otherwise people will abuse the system. I wondered if there was any evidence of this. We know the fraud rates for DLA are actually very low.  The DWP Information Directorate report on ‘Fraud and error in the benefits system’  for 2008-2009 estimated the level of fraud in relation to DLA at just 0.6%.

Was the change is in response to the perception of disabled people by the cinema owners? I contacted Phil Clap again with my concerns.

CEA Card – Do you even need one?

Phil Clapp responded very quickly saying that

”

the basic point at the time was that many of the cinemas companies would only support the CEA Card going forward if we made this change.”

Most most importantly the revelation that:

“perhaps most important being that we have always made it clear that while the Card is intended to make it easier for disabled people to avail themselves of a free ticket for someone to accompany them it is not a requirement that a person has a Card before a cinema will make such provision, or any other similar adjustment. The Card scheme was just introduced to make the process more straightforward.”

So actually we shouldn’t need a card at all. But that is not our experience. I know we have been refused a free entry before when the card had expired. Our son’s carers have never been offered free entry even though he is in a buggy at 7 and does not communicate. I understand that people with a hidden disability might prefer a having a card than explaining to a kiosk attendent.

I shall be contacting our local cinema to find out if they will allow us entry without a card. I would be interested in anyone else’s experiences and comments.

I would also urge you to email the CEA directly using the contact form here http://www.cinemauk.org.uk/contact/ with your experiences or you are unhappy about the switch to annual renewal for the CEA card.

Thanks to Duncan from Trabasack for this great post 

Imagine You're Four... #panorama #dla

Imagine you're four. You love your parents, your friends, the way the light comes through your curtains early in the morning, twinkling on the walls while you wait in your princess room patiently for mummy and daddy's wake up time. Your favourite things are pink ballons and fairies, when it's all a bit confusing around you you know you're safe as long as you can catch sight of those pink flashes and know mum and dad are close. You love to give cuddles, hugs so tight there's no room to wiggle and when you get excited you rock back and forth from foot to foot, arms spiralling joyfully.

One day a new clipboard lady comes to see your mum and dad. You see them cry and decide you don't like this clipboard lady, you wonder where the clipboard lady you remember has gone. Mummy and Daddy are sad so you hug them then fling yourself to the floor and scream so the clipboard lady will go away. It works so next time you decide to scream louder and kick your feet harder to be sure she'll go before your mum and dad cry.

Next time the clipboard lady comes with lots of other people to take you away. Lots of big words you don't understand like 'aggressive' 'confrontational' and 'care order' float around the room and you can't see your pink balloons so scream and scream. Mummy and Daddy cry and tell you to be a good girl, that you'll love your new home, it'll be full of your favourite things to do, they'll come to see you soon.

When you get there it's all scary and wrong. It smells funny and the light doesn't wake you up in the mornings anymore. No-one knows you like to be woken up by the light and they wouldn't care if they did. The days are long, no painting or ponies like you're used to to fill the time and no-one comes to give you cuddles when you're sad. You cry alot and have tantrums. You're used to pink balloons and fairies when you have a tantrum, but without being able to see that you just kick more wildly, especially when the carers come to sit on you and hit you.

You might be only four but you can remember the important things Mummy and Daddy spent 18 years teaching you. You know how to hold out your hand and say 'NO!' in a loud voice if someone tries to touch you, to say the police will come to look after you, to call out for your Mummy so she knows to come to you. Mummy and Daddy were so proud of you for being their big girl and learning these skills, you try to remember that as you lie on the floor of your shower, surrounded by grown ups shouting at you, throwing cold water all over you, sitting on you and choking you. You cry and cry for your Mum but it just makes the carers hit you more. Sometimes the nurses come along and you look at them while you're on the floor, pinned beneath a chair, but then someone puts a blanket over your head so you can't look at them anymore. The blanket's brown and scratchy and you cry for your pink balloons while they hit you some more.

You don't get days out anymore. There used to be a car and Mummy and Daddy took you places with swings and slides. Swings, slides, light through the leaves and being happy slip further and further away until you're not sure there was ever a world beyond beige walls with no pink to hide in to bear the slaps, pinches and pushdowns that are your new routine. You're sure you remember your parents though and cry for them every day. You don't know the reason they can't come to visit is that now you're a hospital resident 80 miles away from home and the car had to go because you're no longer entitled to the mobility component of Disability Living Allowance and the Motability scheme. Mummy and Daddy are getting older and they had to care for you instead of going out to work. You don't know they're going cold and hungry now they're unemployed not carers, you only know that no-one comes to see you except the people who hurt you.

You don't know someone in the hospital did care. That they reported the abuse you are experiencing repeatedly. To their manager, to their manager's manager, to the Care Quality Commission. You don't know because no-one did anything, nothing ever changes now, the torture is your daily routine. You don't know the word for torture, but you could give a better account of what it means than a prisoner in Guantanamo.

You don't know that in the world outside your torture chamber that people talk alot about double funding, scroungers and fraud. Of something called a deficit, the need to cut costs and protect the vulnerable. You don't know that because all the talk is of stamping out fraud and you're so vulnerable no-one knows you exist.

Carers need action NOW from Coalition government

By TBofB Partner Carer Watch

Carer Watch were pleased to learn in the recent publication of the new Welfare Reform Bill that Carers Allowance will remain outside the proposed Universal Credit. Carer Watch, along with many others, have campaigned long and hard for this.

However Carers Allowance has always been completely inadequate and carers still seem to be over looked and forgotten as other benefits are changed around them.

Carer Watch hope that this welcome recognition that carers are unique within the benefit system will be the start of a complete reform of carer benefits so that finally carers receive the support they need.

Carers are often described as ‘unsung heroes’, ‘invisible army’, yet under this cloak of invisibility lies family members and friends, providing a service that this country cannot do without. They provide the foundation that underpins both NHS and Social Services.

There have been many campaigns over the years by various organisations (see notes below,) all asking for the same – the reform of Carers Allowance – to remove the restrictions therein and also to increase the monetary pittance that CA is.

In the report Breakthrough Britain (2007) from the Social Justice Policy Group (policy recommendations to the Conservative Party) it was recommended –

doubling the carers allowance to £90 a week because of the vast amounts carers save the taxpayer by looking after their sick and elderly relatives at home and not relying on the state to care for them.

Other measures would need be put in place to ensure that families claiming other benefits/premiums were no worse off. 

The report also states -  

Family carers are undervalued in our society and receive a disproportionately low level of financial support given the many hours of work that they do.

Therefore, while the decision to keep Carers Allowance separate from the proposed Universal Credit is welcome, this is NOT the end but the start.

Carer Watch call on the Coalition government to make a statement explaining how they intend to reform Carers Allowance and ensure that family carers finally receive the full recognition they deserve.
 
We will be contacting Iain Duncan Smith and DWP dept. Any response will be added here.

Notes

Carer Watch campaigns    
National Pensioners Convention      
Carers UK         
Daily Mirror
Age UK – Invisible but invaluable 

 
Original post can be found here