#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

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CHINA: #ChenGuangchen - Blind Activist Tortured & Beaten Unconscious #TBofBTT #solidarity

URGENT ACTION APPEAL FOR BLIND ACTIVIST 
CHEN GUANGCHENG

FROM: Bob Fu, President, China Aid Association

bobfu@chinaaid.org

Reggie Littlejohn, President, Women’s Rights Without Frontiers

reggie@womensrightswithoutfrontiers.org

Request for Immediate Medical Release

DATE: June 19, 2011

Summary

Blind activist Chen Guangcheng’s health is in serious jeopardy.  According to a letter from Chen’s wife obtained by China Aid on June 15, the Nobel Peace Prize nominee’s health has continued to deteriorate since his fierce torture in February, after which he was denied medical treatment.  He is now in a severely weakened state.  China Aid and Women’s Rights Without Frontiers issue this urgent action appeal that Chen be immediately released from China to receive critical medical attention in the United States.

Background
 

Self-taught, blind lawyer Chen Guangcheng exposed the widespread use of coercion in the implementation of China’s One Child Policy.  Specifically, he uncovered the fact that there were 130,000 forced abortions and involuntary sterilization in Linyi County, Shandong Province, in 2005.  Time Magazine named him in its list of “2006’s Top 100 People Who Shape Our World,” in the category of “Heroes and Pioneers.”  In 2007 he was awarded the Magsaysay award, known as Asia’s Nobel Prize. 

The Chinese Communist Party sentenced him to four years and three months in jail.  His defense lawyers were detained and unable to attend his trial.  His wife and children were subjected to harassment, surveillance and confinement during the duration of Chen’s imprisonment.  Released in September 2010, he is now under strict house arrest.  Both in prison and under house arrest, Chen has been tortured severely and denied medical treatment.  He was released from prison with a chronic, debilitating intestinal illness for which he has been allowed no treatment. 

 A video featuring Chen was leaked to the China Aid Association Wednesday, February 9, 2011.  In this video, Chen encouraged his fellow citizens to stand up for human rights.  Chen and Yuan also described the conditions of their house arrest:  A total of 66 security police surround their home day and night.  Their telephone and internet access have been severed. They suffer from a lack of food.  No one can enter or leave their home, except officials, who can enter at any time, without notice. 

Chen and Yuan were “beaten senseless” and denied medical treatment in connection with the release of this video, and denied medical treatment.  Security forces appear to have intimidated their entire village.  According to a Radio Free Asia report, a woman attempting to visit Chen said, “No one in this village will speak a word about [Chen] . . . None of the villagers I spoke to, nor the police, was even willing to utter his name.”

In February 2011, lawyers scheduled a meeting to discuss how to help Chen.  Several lawyers and rights defenders were placed under house arrest, preventing them from attending this meeting.  Lawyers who did attend the meeting, including Jiang Tianyong and Teng Biao, were detained or placed under house arrest.  Authorities grabbed Jiang by the neck and smashed his head against the wall.  Foreign journalists have been prevented from entering Chen’s village.  CNN released a video of men pushing a journalist and throwing rocks at him to prevent him from entering Chen’s village.

On June 15, 2011, China Aid obtained an undated letter from Yuan, in which she gives further details about the torture and abuse she and Chen have endured:

 They beat and tortured my husband Chen Guangcheng and me for more than 2 hours . . . More than 10 men covered me totally with a blanket and kicked my ribs and all over my body . . . I saw more than ten men surrounded Chen Guangcheng, torturing him. Some of them twisted his arms forcefully while the others were pushing his head down and lifting his collar up tightly.

 Yuan’s letter also states that the police sealed their windows with sheets of metal, seized their computer, confiscated their books, stole Chen’s blind cane, and grabbed toys belonging to their young daughter. Her letter expresses anguish over Chen’s health:

Guangcheng’s mother is closely followed and physically monitored by 3 men every day, step by step, even when she works in the farm’s field. After mid-March, she was not allowed to go out even for buying vegetables. Therefore our daily life has gotten too hard to survive. Besides, Guangcheng’s health condition got worse. The blood from his diarrhea turned to dark instead of red as before. That is why I am so worried.

Recommendations

The governments of the free world should unite to protest to the Chinese government for Chen's brutal treatment and urge the Chinese government to immediately arrange medical treatment for Chen Guangcheng and his wife Yuan Weijing

The governments of the free world should unite to negotiate an exit strategy for Chen and his family to be allowed to leave China for medical reasons

The United States Ambassador, and other Ambassadors, should visit Chen
 

Citizens of free nations should call and write Chinese embassies and consulates and sign the petition to Free Chen Guangcheng: http://www.womensrightswithoutfrontiers.org/index.php?nav=chen-guangcheng#petition

Links to latest reports by two major news agencies:

 

By the New York Times - http://www.nytimes.com/2011/06/18/world/asia/18china.html

Letter Alleges Beating of Chinese Activist and Wife

 By the  Lifesitenews Report

http://www.lifesitenews.com/news/blind-chinese-pro-life-activist-beaten-unconscious-tortured-wife/

Work shy? Work deprived! #TBofBTT

In a blog post I wrote last week, I suggested that the government give monetary incentives to businesses who enable disabled and/or ill people to work, whether by providing equipment for them to work from home, or by adapting their offices. A lot of companies in cities (at least I know this to be true in London) are required to ensure that any new buildings – of which there are many – must be accessible to the disabled. But those in old buildings, particularly small, local firms, might not have the means to fund adaptations. Necessary adaptions might not be viable in each building, of course, but this is hypothetical. Or what if the government provided grants or loans to people who could set up their own business and work from home? If a loan is given, it could be paid back over a fair period, with either base rate interest, or no interest at all. I’m sure that, within a year, the government would be recompensed by a decrease in claims for ESA, IB, IS, JSA etc.

Let me be clear, I do not think any disabled or ill person should be forced into work. I do think, however, that I have too many ill or disabled friends whose talents are going to waste. Some are great at PR, some would be fantastic researchers, others are writers, or techies, or bakers and artists. Their wealth of experience, and their want to make use of it are being left to rot just because their bodies or minds are keeping them out of the standard work place. It makes me angry to think that there are less skilled and less qualified able bodied people getting jobs above my disabled/ill friends, purely down to their lack of wheelchair, absence of surgical scars, or “clean” mental health record.

So, I would really be interested to hear what adaptations you would need to work in an office, or what kinds of equipment you would need to work at home (if, like me, your health/body/mind wouldn’t suit an office). For example, screen magnifying equipment, voice recognition software, aids to allow you to work comfortably from your bed, ramps or a wheelchair lift to access an office, a specialist pen that you can hold, or adapted kitchen appliances, a mobility scooter or powerchair. If you need a medical treatment, but are being denied it by your GP or consultant, that would be interesting, too. We all know about the “Postcode Lottery”.

Costs would be great, but not essential. I’ve never been able to go to work, but I know that so many of you have been pushed and forced out of your jobs, by your health and/or by ignorant bosses and co-workers. Equally, if you’ve never been able to work, but know what access adaptations or equipment you would need to go to work, do tell us.

Please do contribute your needs and/or experiences. The government might not want to listen to us, but we can make our voices heard. Even if you post anonymously, please do give us your story. Doubters and skeptics ask us what we would do instead of these cuts – well, let’s give them something to think about!

Mel x

aka @QueenieJelly


Cross-posted from:

http://blogeration.wordpress.com/2011/06/27/work-shy-work-deprived/

On Disability And The Daily Mail #TBofBTT

A guest post by Fi Douglas

I try not to read the Daily Mail. But sometimes, someone will link to it and my curiosity gets the better of me. Normally, the article is tolerable and it’s only the comments that really get to me. This time, however, the article alone was enough to make me stop what I was doing and seethe. (I didn’t read the comments. Well, I read the first 3 and became so enraged I had to stop.)
Yet again, the Mail (this time Daniel Martin) takes a cheap shot at disabled people. The article effectively implied that there are hundreds of thousands of people on disability benefits that shouldn’t be. Because, of course, Daniel Martin is qualified to make that comment.
The whole article annoyed me, but the first statement that really got to me was this: “Officials admitted 135,000 people have been off work for a decade with depression”. How is that an ‘admission’? Have you ever been depressed? Ever met anyone with long-term depression? Do you actually know what ‘depression’ even means? The ignorance in this statement astounds me. Depression can be as debilitating as any other illness. The implication that depression is a ‘minor ailment’ is, quite frankly, insulting. Hooray for contributing to the stigma surrounding psychiatric illness! – nice work, DM!
Next on the take-down list is people with diarrhoea (I don’t profess to know much about this, but it only takes a hint of common sense to realise that this could severely affect occupational functioning) and those with severe stress, anxiety disorders, and eating disorders (see my comments about depression – yay, stigma!).
Oh, and this statement – “More than 20,000 alcoholics and drug addicts have been drawing on the system for more than a decade” – is made seemingly without any regard for the issues of comorbidity between drug and alcohol problems and other mental illness including depression, anxiety, schizophrenia and personality disorders.
I now revert to bullet point form:

• “20 have been off work with a cough for ten years” – Cystic fibrosis? Chronic bronchitis? Emphysema? Lung cancer?
• “53,450 are on sickness benefit because they have problems with ‘scholastic skills’ – meaning they cannot read, write or add up” – Yup? As @bendygirl pointed out this morning, that’s people with severe learning disabilities.
• “Dizziness and Giddiness” – Yeah, that’d be vertigo. Nausea, vomiting, difficulty standing or walking. Oh and you can get blurred vision, hearing loss, have difficulty speaking, and reduced consciousness.
• “Amazingly, there are … ten with blisters.” - Ever heard of epidermolysis bullosa?

It would be foolish to deny that there are people claiming disability benefit unfairly. I’m sure a small minority do. But to penalise other disabled individuals because of this is far more unfair.
Oh, hang on, sorry, how awful of me, I do apologise – I forgot everyone who is disabled is a filthy scrounger, aren’t they? Apologies for that. My mistake. How could I possibly believe any different?

Soul on my Skin #TBofBTT #TBofB

“Our tattoos are us wearing our souls on the outside”. So said a Maori chief at the Wellcome Collection’s ‘Skin’ exhibition last year. I was there because I had been immortalised in an etched portrait by the wonderful artist Gemma Anderson, in a piece we entitled ‘Against Nature’. As the chief said this, my dad leant forward and said “like yours are for you”. And it was true. Despite the fact that my desire for tattoos was a source of conflict between me and my parents for some years, they now understand why I not just wanted, but needed, to have them. 

I have scars of all different types and shapes and shades across my body, caused directly by EB or by the treatments and surgery it has lead me to undertake. Some are hidden by my dressings and clothes, so are completely visible, not least on my hands, neck and on my left eye. I don’t hate them, they are what they are. Battle scars, I suppose, from a war with my own body. For me, tattoos represented a chance for me to have “scars”, permanent marks on my body that I had chosen to have there. The marks I already have are a testament to the weakness of my skin, the defects in my genes and collagen. They show what is outside of me. Tattoos would reflect my strength, physically and spiritually, and the beliefs and ideas that have given me the positive energy to keep going. That sounds incredibly cheesy, I know. But it’s true, nonetheless.

So my parents escorted me to the tattoo studio, where the artist, Pete, and I made an accord in three parts: 1 – one of my parents had to be with me, as the tattoo would be on my back and he needed someone with experience to watch for impending damage. 2 – If damage occurred, I wouldn’t protest at him stopping immediately. 3 – If it didn’t work, I wouldn’t go elsewhere and try again. 

Tattoo 1 – Two small stars on the left side of my lower back. Though the sound of the machine initially made me want to do a runner, the adrenaline rush of having the needle buzz against my skin was immense. To anyone but other than me, those stars are completely unremarkable, but to me, they mean so much – mastering my fear of pain, proving that I know my body better than anyone else, vindication for standing by my beliefs, and a step toward having some control over what my body looks like. Not only was there no damage to my skin, the tattoo healed better than on someone without EB. No weeping or scabbing, it looked as if it had been drawn on in pen. No one has any idea why, but my back has always behaved differently to the everywhere else on my body.

Though I didn’t, as my mum feared, contract blood poisoning, but I did catch the Tattoo Bug. The two minute experience of the stars wasn’t enough – I wanted more. 

Tattoo 2 – “I believe that whatever doesn’t kill you, simply makes you…stranger”. Yes, it’s a quote from The Dark Knight, uttered by The Joker. It speaks to me because the more I experience with EB, the more warped my sense of humour becomes. The quote and the speaker fitted perfectly, and it’s a reminder to me to only let darkness into my comedy, not my heart or soul.

Tattoo 3 – “Now I know that freedom must be taken, and fate stolen ~ Anno”. This comes from an untitled poem by Anno Birkin, someone I will write more about, as he deserves a post all of his own. It’s part of a longer excerpt, the rest of which I have on a pendant. I had this tattoo after a long spell in hospital, losing a friend, and having another battling cancer. I was realising, more than ever, that life is short and you have to reach out and grab what you want from it. Nothing worth having is easy to get. I haven’t achieved as much I’d like, but carrying this on me, always, reminds me to never stop trying. 

Tattoo 4 – “Bettina. Some Fantastic Place”. Betti is the above mentioned friend, who battled cancer. She passed away in December 2009, and I’ve never known grief like it. I knew that, wherever she was, Betti would be telling me to stop crying and carrying on and enjoy life. ‘Some Fantastic Place’ is a song by one of my favourite bands, Squeeze, and as it was written about their friend who was taken by leukaemia, it seemed to call to me. Bettina was the bravest person I’ve ever known, and I feel honoured to have had her in my life, and to still have her in my heart. Betti having her tattoos gave me the courage to have mine, and that felt like the best memorial I could give my amazing friend. It’s completed with a little butterfly, flitting away from the words. Not to symbolise EB, but to show the free spirit that Bettina was, is and forever will be. 

My next tattoo is imminent, and no doubt I’ll write about that, too. My tattoos have given me things to love about my body, marks I can look at with pride and happiness. One the rare occasions I disrobe in front of people now, no one comments on my EB scars, instead asking about or admiring my ink. They give me the freedom to be me, and I’m eternally grateful to Pete for being brave enough to take the needle to me in the first place.

By Melissa Smith, @queeniejelly - TBofB

Originally posted here

Free At The Point Of Care, But Only For Some #TBofBTT

by Margo Milne (@MargoJMilne)

Not everyone with a disability is also ill and in need of regular prescriptions, but many of us are. As an example, here are the medications I need every day for my multiple sclerosis:

• 3 painkillers


• 1 bladder medication


• 1 med for fatigue


• 1 anti-spasmodic


• 1 sleeping pill


• ...and a partridge in a pear tree (or so it sometimes seems!)

Then there are the medications I take for the rest of my encyclopaedia of medical conditions: altogether 15 different meds, between one and eight tablets per day for each. If I could jump up and down I would rattle, so all in all, it's quite a good thing I can't!

The current prescription charge in England is £7.20 per item. In Wales and Northern Ireland they are free. In Scotland, they currently cost £3.00, but will become free later this year. I live in England, so I will consider only the situation here, and leave aside in this post the "postcode lottery" element of the differing charges between countries.

As well as MS, I have epilepsy. That means I get all my prescriptions free. The rationale behind this is that epilepsy is lifelong and potentially life-threatening. But the exemption applies not only to my epilepsy medications, but to everything. I've had prescriptions for a bottle of calamine lotion (over the counter cost what, about 50p?) to save me the prescription charge.

These medical exemptions are available to people with a few conditions other than epilepsy, including cancer, diabetes treated with medication, and any physical disability that means the individual cannot go out without help from another person.

There are many, many long-term conditions that are not covered by the exemption - for instance asthma, heart disease and Crohn's disease, all of which can be terribly disabling. There is evidence that high prescription costs lead to many people going without the medications they need:

• In 2007, 800,000 people failed to collect a prescription because of the cost involved. People with long-term conditions are particularly affected.


• 34% of people who have to pay for their asthma medication sometimes choose not to get it because of the cost.


• 38% of people with severe mental illnesses like schizophrenia have to choose between paying household bills and paying for prescriptions.

A GP is quoted as saying:

It's not unusual for patients to ask me which prescription is really important, which one can they get now and which one they have to wait maybe two weeks before they get their pay cheque.

I believe that prescriptions should be free for anyone with a long-term condition. Already over 89% of prescriptions are free, with no charges for children, pensioners, pregnant women, and people whose income falls below a certain level. It seems inequitable that (say) a wealthy pensioner or pregnant woman is entitled to free prescriptions, while someone with disabling heart disease whose income falls just above the cut-off point is not.

The Prescription Charges Coalition brings together 24 charities, and calls for the Government to abolish prescription charges for everyone with a long-term condition. They have a petition, and a template letter for you to send to your GP. If you agree with me that prescriptions should be free for everyone with a long-term conditions, please click on the link!

Learning Curve #TBofBTT

by Claire Lewis (@SpinalNurse)

As an Able-bodied person I don't not profess to 'know' how it must be to live with a disability. However I wanted to share my learning curve as a 'professional' and how it has changed the way I practice.

From a very early age I've always had a notion of 'helping' people. (Don't groan I was young and didn’t have the vocabulary, I still don’t!) This first manifested itself at the age of 14 deciding my options for GCSE. At that particular time living in North Wales and keen on Rugby I announced to my family that I wanted to become England or Wales' Rugby Teams Physiotherapist. Nothing to do with the gorgeous men of course! To cut a long story short I wasn't academically gifted enough so after retakes and a slight career change ended up Studying my Nursing Degree at age 25. During my time as a student nurse a colleague suffered a spinal cord injury (SCI). Knowing nothing about SCI and not being stretched enough by my nursing course, I embarked on finding out as much as I could about SCI as I could. This led me to find a charity that takes people with SCI skiing (a real passion of mine) so I immersed myself in the world of SCI. Although being involved in healthcare for the previous 6 years I'd only really come across people who were ill. Going away skiing with people who were well but had a disability opened my eyes to a completely different world.

Initially, as happens with all Able bodied (ABs) on the course. I had the 'fear' the reality check, the 'this could happen to me at any minute' moments. It kept me awake for the first couple of nights. Then slowly as the week progressed I realised hang on a minute these are normal people just like me. They just happen to no longer be able to use their legs. THEY ARE NO DIFFERENT TO ME. And there it was Disabled people are NORMAL.

Obviously 10 years on I realise Spinal cord injury has lots of issues other than not being able to use your legs! What I found by sharing time with people, who were just like me, was the constant question. 'How would I want to be treated. I'm an adult and fiercely independent I can make up my own mind, Why on earth am I going to let someone else tell me what THEY think is best for me.
Naively I thought 'well people are more clued up about disability now' I couldn’t have been more wrong. Now a qualified nurse I cringe when I hear 'professionals' responses to people who have a disability. If so called professionals can't get it right what hope the rest of us!

I am the first to put my hands up and say I don’t always get it right, I don’t always know what is the best option to empower my patients to enable them to be more independent but when I don’t know I ask. I don’t presume or assume I know best.

I changed the way I practiced by very small steps really, nothing profound. I would be more aware of bringing things closer to the reach of a person on bed rest. I could observe closely during Drs rounds that the patient had understood what was being said and try to simplify medical jargon. I would ASK and SPEAK to the person. I wouldn't talk across them even if they were children and even if their parents/ partner/ family were dead set that I should be addressing them rather than the patient. I bloody well made sure my eye contact was with the person concerned. I asked permission from the patients. I asked what I should be aware of, how does their pain affect what they can do and how I hold/support them. How does fatigue affect them? Not to get annoyed because this morning she could do this but this evening she can't.

I know to many, this may seem like common sense but you only have to sit on a busy ward for 30 mins to observe it doesn’t always happen. Some of the ignorant comments from colleagues mouths at times has astounded me and taken every ounce within me not to bite their heads off. But to gently inform and enlighten!

Unfortunately it takes a lot of insight to know even a fraction of the problems and struggles people with Disabilities face every single day. I try to think ahead about what someone will need so that they don't have to ask it's just there or it just happens. Importantly understanding that like me everyone is different and what might be a good routine for one person totally doesn’t suit another. People don’t ask to be disabled, People don’t want to have to ask for help if at all possible. But sometimes you have to ask for help and sometimes it would be nice to have someone who at least doesn’t huff, puff and moan at helping. It's the least we can do isn't it? A little bit of understanding goes a long way.

Big Pawed Bear's Blog: Thoughts From The Den #TBofBTT

Now, you might ask why I use the image of a bear in my Twitter account (@BigPawedBear) and on my MSN Messenger picture.

I am a writer, work with horses, and help others if I can through use of the internet. I have also been active in the disability rights movement, helped by the Broken of Britain. Oh yes, I am blind too, I almost forgot that - well, actually, that's not true.

Every day I come across things which remind me of my blindness, from the computer I use, to the fact I can't get cash out of a cash point without help. "But why the bear?" you ask. Well, a bear, let's study this in more depth.

Is s bear cute, cuddly and gentle? Well yes they are, even wild bears are that. I am watching wild bears live on the net, as it were. More accurately, I'm reading text descriptions of what the wild bears are up to, as pictures are inaccessible to me.

Yes, bears are gentle to their own and to others too, if you get to know them, but anger them and disrespect their place and space, they become angry and are raging furies that you wouldn't want to meet. This is what the government are finding with the disabled community at the moment.

Disabled people have been seen by government for so long as meek, passive people, whose lives they can do with as they wish. This government has seen fit to treat them without respect by withdrawing benefits from them without meaningful consultation on what that withdrawal would mean for them.

For example, he government thought that the cut of high rate mobility component of the disability living allowance to those in residential care was an easy cut to make - how wrong they were. Stories have emerged of how those with disabilities use their mobility component of DLA to aid them in their daily lives, and how this cut will impoverish those in residential care.

As a blind person, recently eligible for the higher rate of mobility component, I feel strongly about this because I know now from personal experience how valuable that help will be when I get it. DLA is a small amount of money when compared to the costs of disability, but it gives disabled people the independence this government are supposedly committed to on one hand, while seemingly wishing to deny independence with the other.

This bear is fighting with all four paws and a roar to protect not only his own benefits, but the benefits of those who have no voice. Please read the ProjV hash tag on twitter to find out what people use their DLA for. In this wau, able-bodied people might get an insight into what disabled people's lives are like, and how DLA, though it might seem a lot of money, really isn't when coping with a disability.

Next time, I will blog about blindness and the costs involved. Paws up!

Big Pawed Bear

Ill At Ease #TBofBTT

They call it ‘malaise’, which is defined as a general feeling of discomfort, illness, or lack of well-being. And it’s a symptom of a variety of conditions, including hypothyroidism and metabolic syndrome (PCOS, Syndrome X), which are amongst those from which I suffer.

It’s a French word, which you might translate as ‘ill-at-ease’. Words, you see, are my thing. I’m fascinated by etymology and I’ve been working on expanding my vocabulary since my dictionary-reading childhood. (Yes, really, I used to read the dictionary. On the bus en route to school every day, in the days before I had any inkling of how things were going to turn out for me.)

And yet, I lack the words to express what ‘malaise’ feels like to me.

I could try and tell you about the nausea, which can be so profound that it bypasses the whole notion of vomiting and goes straight to a desperate desire to be deeply unconscious. I could try to describe the exhaustion that has led me, on some days, to get out of bed at around ten, eat brunch and go back to bed around two, get up for some tea at five and be back in bed for eight; days when I do almost nothing but sleep. I could try and put into words the ghastly, hideous feeling of being terribly ill - a sense that I equate to one of being poisoned although, as far as I know, I have never yet been.

Even then, unless like me you are chronically sick, you probably wouldn’t understand. Even if you were able to see how pale I am, often sweaty and clammy, lumbering in my movements and occasionally in my speech. Even if you were to bear witness to the way my hands sometimes shake or the changes in my breathing when I try to quell the sick feeling by sheer force of will and an excess of oxygen.

I can, with greater authority, tell you what other people think ‘malaise’ means. I’ve heard all of the following - sometimes from doctors, sometimes from acquaintances - over the years:

“Tired all the time? You just need to lose some weight; get some exercise.” This was said to me at a time long gone when, fighting desperately for my health, I was running three miles every day, unable to control my weight gain even so. It’s been said to me repeatedly ever since.

“Are you sure you’re not pregnant?” Accompanied by a sneaky casting of the eye over my pendulous abdomen, one consequence of hyperinsulinemia. My hysterectomy was performed in 2005 when I was just 35 years old. So, yes, I’m fairly certain I’m not pregnant.

“Everybody gets tired.” Sneer, sniff. “You’d be as tired as me if you had a job.” I have several jobs. I care for four children and I run a household. I help my husband run his business and I am trying to build my career as a writer. You wouldn’t believe how hard I work, whenever my symptoms allow me to, taking advantage of the fact that, for me, writing is an escape (from the chronic pain I suffer following a botched operation) and a catharsis.

“It’s just the menopause. You’re no different from any other woman your age.” Really? The menopause usually starts when a woman is in her late forties or early fifties and some ovarian function remains even after that. I’m forty-one, I have no ovaries, and I can’t tolerate HRT. I’m not experiencing menopause; I’m going through the meno-sudden-standstill. And it is, believe me, a lot more cruel and unusual than nature’s gradual decline.

“It’s all in your head. You need to see a psychiatrist. Take antidepressants and you’ll be fine.” This is my favourite. Over many years of psychiatric treatment, my doctors and I have figured out that antidepressants do not improve my health, they jeopardise it. Not only do I not function at all when taking them, but I don’t care that I’m not functioning. Active therapies are my salvation - writing; singing; talking to a counsellor; hugging my kids as tight as I can.

And finally: “You’re so fat. What do you expect?” I expect respect as a fellow member of the human race. I expect compassion. I expect credence. These things are more common than I once feared but are sadly less ubiquitous for me than a healthy person might expect.

So, you see, ‘malaise’, to me, is more than the word doctors use to describe this nebulous, indescribable - yet potent - symptom that many, if not all, of the chronically sick endure. To me, the word is representative of the scepticism and contempt with which my attempts to explicate my symptoms are often greeted.
The willingness of many people to dismiss and disparage what is, for me, one of the worst aspects of my ill health - it is this attitude that puts me truly ill-at-ease.

Catherine Hughes - www.catherinegracehughes.com