tag:blogger.com,1999:blog-66612131785126990862024-03-18T09:14:56.202+00:00Funky Mango's MusingsFunky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.comBlogger124125tag:blogger.com,1999:blog-6661213178512699086.post-58877300053426415052017-05-13T21:05:00.000+01:002017-05-13T21:14:08.411+01:00Posh food<span style="font-size: small;">I don't understand posh food. There, I've said it.</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">First off, there's the dishes themselves. Picture your typical fine dining menu:</span><br />
<ul>
<li><span style="font-size: small;">Quenelles of
axminister on a belushi rosti</span></li>
<li><span style="font-size: small;">Hipster cop three
ways with charred lurex, served with a eurovision broth</span></li>
<li><span style="font-size: small;">Braised largesse
with persil ravioli and germolene purée</span></li>
<li><span style="font-size: small;">Camshaft torte
served with a crushing sense of ennui</span></li>
</ul>
<span style="font-size: small;"> Well OK, not <i>quite </i>like that, but you get the idea. Why can't they just say "beef and carrots"? And why are there so rarely potatoes (or rice, or pasta)? Surely a meal needs its carbs?</span><br />
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<span style="font-size: small;">And the portions are always so <i>small</i>. This is the three-course meal cooked by the winner of this year's <i>Mastechef</i>, </span>Saliha Mahmood-Ahmed. Sorry Saliha, I'm sure it's delicious, but I'd be stopping for chips on the way home.<br />
<br />
So, posh food. That's why I just don't get you. My offer to accompany anyone who would like to take me to <a href="http://www.benaresrestaurant.com/" target="_blank">Berares</a>, however, still stands..Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com5tag:blogger.com,1999:blog-6661213178512699086.post-8007882658702617912016-12-08T14:48:00.000+00:002016-12-09T15:13:48.873+00:00Words have power<i>The Last Leg</i>, that fabulous show, announced its guest for this week's edition a couple of days back - and it's reignited an old controversy.<br />
<br />
That guest is Ricky Gervais, and many people are concerned that a programme which got its start during the London Paralympics, and is still very disability-focused, should have as guest the man who notoriously called people "mongs", and who made <i><a href="http://funkymangosmusings.blogspot.co.uk/2013/01/derek-self-indulgence-saccharine-and.html" target="_blank">Derek</a></i>, a series about a man with learning difficulties, which again was widely felt to be insensitive and offensive.<br />
<br />
Those of us who have expressed our concerns to <i>The Last Leg</i>'s Twitter account have had many replies from Ricky Gervais fans, who don't share our concerns (to put it mildly). I've sent several of them the link to <a href="http://funkymangosmusings.blogspot.co.uk/2013/01/derek-self-indulgence-saccharine-and.html" target="_blank">a previous post here</a> about it, because of the space limitations on Twitter. This post is about something slightly different, though.<br />
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<br />
When someone is asked not to use certain words as insults (retard, mong, spastic, crazy... etc etc), a frequent response is, "But I wasn't talking about <b>real </b>disabled people!" Thing is, that's not good enough. And here's why.<br />
<br />
If you call your slightly socially awkward friend "autistic", or describe yourself self-deprecatingly as "OCD" because you like your house to be tidy, what you're saying is being like that is a bad thing. That people with those conditions are "less than". So I'm sorry dude, but you <b>were </b>talking about real disabled people.<br />
<br />
Words have power. They can empower, or they can diminish. If someone with a disability (or from another oppressed group) asks you not to use a certain word because it's offensive, is it really that much trouble to think of an alternative? It's not being PC - it's having decent manners. That's all there is to it.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com3tag:blogger.com,1999:blog-6661213178512699086.post-1061743069455832932014-08-16T13:02:00.000+01:002014-08-16T13:02:48.273+01:00Fatigue #spoonieHow to describe this fatigue?<br />
<br />
I'll try. Without hyperbole, and as honestly as I can. These are some of the things I think and feel.<br />
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<br />
Every limb is made of solid concrete. Moving it even the smallest amount needs all my resources.<br />
<br />
When I walk, it is through deep, cloying mud, that pulls me back and down. If I don't get out of the marsh soon, I will drown.<br />
<br />
Sometimes I hold the sides of my head. The muscles of my neck are too tired to hold my head upright.<br />
<br />
I lean against the sofa back and relax the muscles that have been working so hard to maintain my posture. I'm melting into the cushions. I could never move again, even if I wanted to.<br />
<br />
I fall asleep when I want to stay awake, and stay awake when I want to sleep.<br />
<br />
My dreams are of waking up feeling rested, just once.<br />
<br />
My brain is stuffed with cotton wool, but not bright and white and fluffy. It's old, and grey, and congested. The spaces are half full with oily fluid that moves unpredictably, confusing my thoughts and blanking my memory.<br />
<br />
I'm safe here, on my sofa. If the house went on fire, I would stay here. I don't have the energy to move. I'm safe here. And so tired.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com4tag:blogger.com,1999:blog-6661213178512699086.post-53653312270209802382014-07-31T13:00:00.001+01:002014-07-31T13:00:40.514+01:00Diary of a Benefit Scrounger: Confirmed - The FULL Impact of Cuts Disabled Peopl...<a href="http://diaryofabenefitscrounger.blogspot.com/2014/07/confirmed-full-impact-of-cuts-disabled.html?spref=bl">Diary of a Benefit Scrounger: Confirmed - The FULL Impact of Cuts Disabled Peopl...</a>: Since the coalition came to power, sick and disabled people have claimed we are being fundamentally harmed by the coalition welfare refor...Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com2tag:blogger.com,1999:blog-6661213178512699086.post-42819139378568636922014-05-16T08:43:00.000+01:002014-05-16T20:54:03.258+01:00Obstructive sleep apnoea and heart problems: the missing link?A friend of mine died a couple of years back, of heart failure. Heart problems are very common, anid have many possible causes. He also had a condition called obstructive sleep apnoea, which has long been linked with heart problems. But nobody's ever quite known why.<br />
<br />
<a href="http://www.nhs.uk/conditions/Sleep-apnoea/Pages/Introduction.aspx" target="_blank">Obstructive sleep apnoea</a>, or OSA, is surprisingly common, affecting almost a quarter of men and almost one in ten women. The muscles and soft tissues of the throat relax and collapse, blocking the airway wholly or partially and therefore interrupting breathing.<br />
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<br />
Now, for sleep to serve its purpose, we have to spend a certain amount of time in a state of deep sleep. Each time you have an episode of OSA, you enter lighter sleep or even wake very briefly in order to restore normal breathing. This cycle can repeat many times a night, up to once a minute in extreme cases.<br />
<br />
These repeated sleep interruptions lead to the person with OSA feeling very tired during the day. They have no memory of the periods of breathlessness, so are often unaware that they are not sleeping properly.<br />
<br />
Among the complications of OSA are heart problems: increased heart rate and blood pressure, and heart attack. The mechanism by which this happens has never been understood. Now <a href="http://jp.physoc.org/content/early/2014/05/15/jphysiol.2014.273482.abstract" target="_blank">a group of researchers</a> at George Washington University in Washington DC seem to have uncovered it.<br />
<br />
Our resting heart rate is maintained at an appropriately low level by a group of <a href="http://en.wikipedia.org/wiki/Autonomic_nervous_system" target="_blank">parasympathetic neurons</a> in the brainstem. By mimicking OSA in rats, the researchers discovered that during OSA episodes the activity of these neurons is inhibited, leading to an increase in heart rate and the possibility of irregular heartbeat and high blood pressure.<br />
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It's too late for my friend David. But now researchers know where to focus their future work. They must try to restore the normal cardio-protective function of these neurons in people with OSA, to reduce the risk of cardiac problems, so that OSA no longer carries the risk of death.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com3tag:blogger.com,1999:blog-6661213178512699086.post-73604491330292300922014-05-01T09:00:00.000+01:002014-05-01T09:28:13.547+01:00Writing semi-autobiographical fiction about disability #BADD14<i>This is my post for <a href="http://blobolobolob.blogspot.co.uk/2014/05/blogging-against-disablism-day-2014.html" target="_blank">Blogging Against Disablism Day 2014</a>. </i><br />
<br />
Well. I've finally taken the leap of faith, and started writing the novel that's been tunneling out of my subconscious for the last couple of years. And they do say write about what you know. So I'm writing in the first person about a woman who develops MS.<br />
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<br />
But is writing semi-autobiographical fiction really worthwhile? And can a novel about disability be interesting to a general audience? <br />
<br />
If my story was purely autobiographical, it would be a thinly disguised version of my own life story, with names and locations disguised. Firstly, this would certainly be excruciatingly boring for the reader. Secondly, parts of it would probably be actionable! <br />
<br />
So what I'm doing instead is using my personal knowledge of my condition - multiple sclerosis - and how it affects me, and inventing a background, relationships, and story for my protagonist. I have access to the emotions I felt when I developed and was diagnosed with MS, and anecdotes from friends with MS of how their family, friends, and work colleagues reacted.<br />
<br />
A novel is not just about the one central plotline, or it would be very short indeed. I can use my experience, both of disability and everyday life, as inspiration for plot points and to help me understand my characters' emotions. So, for instance, a real-life neighbour who takes her ferret for a walk every day in an animal carrier will be making an appearance, along with her pet.<br />
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<br />
Real life isn't connected. Random things happen at random
times. Wild coincidences take us by surprise, that we wouldn't believe
for a second in fiction. In a novel, however much it draws on your own
life, you have to order and arrange your material to make some sort of coherent narrative .<br />
<br />
In the end, as Tom Clancy said:<br />
<br />
<blockquote class="tr_bq">
The difference between fiction and reality is that fiction has to make sense.</blockquote>
Do novels about disability have to be serious? Not in the least.
You can see humour in any situation. My heroine is a strong, funny
woman. Yes, being diagnosed with MS is a major, serious life event. But looking
back on it, the process is full of humorous moments. If I can see that,
so can she. Real life isn't always funny at the time. But a book can be.<br />
<br />
And who knows? Perhaps if I can make it funny and accessible (and anyone wants to read it anyway!) it'll get over a bit of information about disability in general and MS in particular along the way. Which would be no bad thing, right? The more people know, the less stigma and disablism we'll hopefully all encounter.<br />
<br />
So. If there's anything you think from your own experience I should try to include, please let me know in the comments. Otherwise, I'll keep you updated as much as I can. And rest assured, once it's finished I'll pimp it to death!<br />
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Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com7tag:blogger.com,1999:blog-6661213178512699086.post-62035330679138201842014-02-25T13:37:00.000+00:002014-02-25T13:37:21.342+00:00Connor Sparrowhawk: Death by Indifference<div class="separator" style="clear: both; text-align: center;">
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<br />
Connor Sparrowhawk was 18 years old. He was loving and much loved. He had learning difficulties, autism and epilepsy.<br />
<br />
<br />
And he died in the bath at Slade House, an NHS assessment and treatment centre, because he was left unsupervised.<br />
<br />
<a href="http://www.cqc.org.uk/node/622666" target="_blank">The report</a> from a CQC inspection carried out three months after Connor's death failed the unit on a number of standards, including patient safety. Now the <a href="http://www.southernhealth.nhs.uk/news/report-into-death-sparrowhawk/" target="_blank">independent report </a>into his death has confirmed that his death was completely preventable.<br />
<br />
The NHS Trust concerned have listed actions they will take as a result. There's no question that giving staff training about epilepsy, auditing care plans, and so on are good things to do. But why has it taken the death of a young man to prompt what would seem to be the obvious? This was a specialist unit for people with learning disabilities, and <a href="https://www.epilepsy.org.uk/professionals/healthcare/primary-care-resource-pack/section-1/background-epilepsy-national-guidance/guidance-special-populations/learning-disabilities" target="_blank">half of those with learning disabilities also have epilepsy</a>.<br />
<br />
And the report shows so much passing of bucks and refusal to accept responsibility, it's unbelievable. No risk assessment of Connor's bathing arrangements. No review of his epilepsy when he entered the unit, or after it was suspected he'd had a seizure. Not all relevant staff were trained in life support. No record of the agreed observation actually happening while Connor was bathing.<br />
<br />
Nothing will replace Connor. But it's to be hoped, at least, that this damning report will stop another family being blighted in the same way.<br />
<br />
There's only one way to end this post, and that's by showing you Connor - Laughing Boy - as he grew up. Happy. Alive.<br />
<br />
#justiceforLB <br />
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Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com1tag:blogger.com,1999:blog-6661213178512699086.post-24003764958835102702014-02-21T14:06:00.000+00:002014-02-21T14:06:16.984+00:00Multiple sclerosis and depressionWe all feel down sometimes. That's natural, and part of life's rich tapestry.<br />
<br />
But sometimes, for some of us, that short-term feeling turns into something much longer-lasting and more profound. <a href="http://www.nhs.uk/conditions/depression/Pages/Introduction.aspx" target="_blank">Clinical depression</a> can involve feelings of sadness and hopelessness, irritability, losing interest in activities, loss of ability to concentrate of make decisions, tearfulness, tiredness, sleep disturbances, and physical aches and pains. It is often linked with anxiety.<br />
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<a href="http://www.healthhype.com/imgs/depression.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.healthhype.com/imgs/depression.jpg" /></a> </div>
<br />
Each year, <a href="http://www.patient.co.uk/doctor/depression" target="_blank">around 6% of the UK population have an episode of depression, and more than 15% will have an episode during their lifestime</a>.Having a long-term physical illness increases your risk of depression up to <a href="http://my.clevelandclinic.org/disorders/mental_illness/hic-chronic-illness-and-depression.aspx" target="_blank">about one in three</a>, and NICE have recently issued <a href="http://guidance.nice.org.uk/CG91" target="_blank">guidelines </a>for this situation.<br />
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<br />
Multiple sclerosis, being a long-term condition, follows this pattern. <a href="http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/mental-health/depression" target="_blank">Up to 50% of people with MS</a> experience depression at some point in their lives, and <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1739575/" target="_blank">around 20% within each year</a>. People with MS are at <a href="http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/depression/index.aspx" target="_blank">7.5 times the risk of suicide</a> of the general population.. There are <a href="http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/depression/index.aspx" target="_blank">several reasons </a>for this:<br />
<br />
<ul>
<li>To have MS is to be in a state of uncertainty. Your life has changed completely. You have a long-term condition with a variable course, which could potentially progress to severe disability. Your self-image changes: you fear losing independence, you may lose your job or friendships.</li>
<li>Depression can also be caused by MS's physical changes to the brain. If it damages the parts of the brain that control mood and emotional expression, behavioural changes can result, including depression.</li>
<li>MS can also affect the immune and <a href="http://en.wikipedia.org/wiki/Neuroendocrinology" target="_blank">neuroendocrine </a>systems. For instance, studies have found changes in immune markers in people with MS who are depressed.</li>
<li>Depression can be a side-effect of certain drugs, such as the corticosteroids often prescribed for MS relapses.</li>
</ul>
There is some <a href="http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/depression/index.aspx" target="_blank">evidence </a>that depression is (not surprisingly) more common around the time of a relapse, but people with more severe physical disability are not more likely to be depressed. Nor is it related to how long you've had MS.<br />
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There is no shame in having depression. It's a disabling condition just as much as a broken leg, heart disease - or, indeed, MS. It's important that we learn to recognise its onset in ourselves, and seek help. It doesn't mean weakness or need to be hidden. I see my depression as a long-term condition to be managed, like my MS.<br />
<br />
Treatments for depression can be very effective. If you think you may be depressed, please visit your doctor and explain how you feel. If you are suicidal, contact the <a href="http://www.samaritans.org/" target="_blank">Samaritans</a>.<br />
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So, if you have MS, it's entirely possible that you also have depression. Clearly not an ideal situation, but entirely treatable and manageable. As I said: all part of life's rich tapestry!Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com1tag:blogger.com,1999:blog-6661213178512699086.post-61563241411143638042013-08-13T13:14:00.000+01:002013-08-13T13:14:20.456+01:00Twitter and Christian JessenYou know that <a href="http://en.wikipedia.org/wiki/Christian_Jessen" target="_blank">Doctor Christian</a>? Yes, him off of Embarrassing Bodies and Supersize Vs Super Skinny? Well he's been getting a lot of grief recently, on Twitter and in blogs.<br />
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Not really anything new. Christian is not known for his appeasement tactics on Twitter. I think he enjoys a good ruck, to be honest. So why have I been moved to blog about him now?<br />
<br />
I've been getting annoyed by those of his detractors who claim that Christian is misogynistic. There seem to be two main arguments going on at the moment:<br />
<ol>
<li><u>Breastfeeding</u>. We all agree that breast is best. <b>If possible</b>. I have never seen Christian say anything different. Yet somehow, his public acknowledgement of the fact that not all women can breastfeed - which may be very reassuring to new mothers struggling with feeding - is taken as meaning he's opposed to breastfeeding. Read the tweets, people!</li>
<li><u>Feminism</u>. I'll be honest, I got lost on this one quite early on. As a disabled woman living in poverty, I count myself as an <a href="http://en.wikipedia.org/wiki/Intersectionality" target="_blank">intersectional feminist</a>. There are various other flavours of feminism. But, y'know, what they all have in common is lots of jargon. If feminism isn't your particular political arena, you're not going to know the buzz words. And Twitter, with its 140 character limit, really isn't the place to explain them, particularly when you're angry. I know, I've got involved in enough arguments on there in my time and just ended up completely frustrated!</li>
</ol>
One of the worst things I've seen hurled Christian's way is that he hates women because he's gay. Listen to yourselves! How homophobic is that? In my Twitter acquaintance with Christian, he's often replied to his abusers in (rather more polite) kind. Although I've seen him use ableist language thoughtlessly (loons, nutters etc), when I've called him out on it he's always apologised. And I've never seen him use a gendered insult.<br />
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He's not perfect, naturally. Which of us is? Retweeting the abuse he receives - or even a simple disagreement - can lead to some of his more devoted fans attacking the original tweeter. That's shit. The fans need more restraint, of course, but when you have quarter of a million followers you have to bear some responsibility for what you tweet.<br />
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So, what's the take-home from this post? I think the biggest is that we all have a lot to learn, about our own "home patches" as well as less familiar areas. When someone isn't up to speed on your particular topic, shouting "CHECK YOUR PRIVILEGE" at them really isn't going to help. (Note, I'm not suggesting <b>you</b> shout at Christian. But there are people who do.)<br />
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Gender politics is complicated stuff. We're all on a steep learning curve, and we all started somewhere. Don't we owe it to those who are just discovering it to explain things calmly and clearly?Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com1tag:blogger.com,1999:blog-6661213178512699086.post-23686038320854494532013-06-24T09:30:00.000+01:002013-06-24T13:49:36.560+01:00In which I make the mistake of having an opinion about The Voice and disability.<div class="separator" style="clear: both; text-align: center;">
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Saturday night saw the final of The Voice on BBC1. Yes, I watch The Voice. Deal with it. It was won by Andrea Begley, who has a severe visual impairment.<br />
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But why am I mentioning her disability before her (really rather good) voice, you ask? Well frankly, it was impossible to ignore, the show rammed it down our throats so much.<br />
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<li>Every video, every link, it was mentioned. </li>
<li>I began to think her middle name was Inspirational. Andrea Inspirational Begley. What makes her inspirational over any of the other competitors? Could it be...maybe...nope. No idea. At all. /sarcasm</li>
<li>In training videos, Andrea dressed pretty much like the other female competitors: skinny jeans, heels, fitted tops. This makes me suspect that the way she was styled for each show was not her own taste, and was possibly designed to elicit the "ahh" factor. While the other women were in short skirts and tight trousers, Andrea was wearing what I described one week as "my first grown up party dress, aged 12". And always, always the milk-bottle glasses, reminding us of her visual impairment, though I discovered on Google Images while finding pictures for this post that in fact she doesn't always wear them. This chimes with the infantilisation of disabled people, seen as permanently child-like, their every achievement seen as more praiseworthy than that of someone able-bodied.</li>
<li>Andrea's coach on the show, Danny O'Donoghue, habitually referred to her as having "the voice of an angel". Andrea's voice is good, but I wouldn't characterise it as particularly angelic. (What does an angel sound like anyway?) Could this be an example of a disabled person being perceived as the eternal innocent? During one of her songs, the tangentially relevant My Immortal, the production even projected a pair of angel wings behind Andrea's shoulders. One (non-disabled) person on my Twitter timeline commented that Andrea was lucky to be blind: she couldn't see them.</li>
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So far, so irritating. This was when I made my big mistake. Immediately after the result was announced, I tweeted the following.<br />
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Tweeted in anger, I fully admit, and also in pique because my favourite, Leah McFall, hadn't won. But I thought the meaning was clear, specifically the use of the word "if". IF you voted for Andrea because you think she has a wonderful voice, that's cool. But IF you voted for her because she's disabled and brave and inspiring and aww, then...well, the tweet says it.<br />
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Twitter's a funny place, though. If you dare to express an opinion, there are quite a few people who won't actually bother to read it properly, and just attack you instead. I was called quite a variety of things, most of which I wouldn't repeat on here. My block button was red-hot.<br />
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But the interesting thing was that several of them said I was the first person to mention that Andrea was blind. Really? Had they been watching the same show I had? Some of what I've mentioned above is fairly subtle, I agree, but the show had been blatant in their mentions of her disability, from her audition on.<br />
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As had Andrea herself, in fact. Despite saying she wanted to be judged on her voice rather than her disability, she talked about it in nearly every video. Reality show contestants are always victims to the edit, of course, but editors can only take things out, not add them in.<br />
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So what conclusions can I draw from this? I could try not to have so many opinions...but I don't think that's going to happen any day soon. I definitely need not to engage with trolls, just to ignore and block them. I don't need the stress. But you know, isn't it kind of worrying how ingrained disablism is in our society, that people don't even notice something as obvious as this?<br />
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PS As I've finished typing this, there's been an interview with Andrea on BBC Breakfast News. First question. "Tell us about your sight?"Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com11tag:blogger.com,1999:blog-6661213178512699086.post-79766082055871427942013-05-19T09:27:00.000+01:002013-05-19T10:17:25.900+01:00The Impossible Girl (spoilers) #DoctorWho #SpoonieLast night was the season finale of Doctor Who. I thought it was one of the best episodes for quite some time, certainly the best of the season. But it also got me to thinking. A major theme was losing and gaining control - both for the Doctor and his current companion, Clara. And that's also a huge issue for <a href="http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/" target="_blank">spoonies</a>, people with long-term illnesses that cause crippling fatigue.<br />
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The baddies in this episode were the Whispermen, who kidnap the Doctor's friends Clara, Vastra, Jenny and Strax to lure him to the one place he must never go: his grave, on the planet Trenzalore.<br />
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When we become ill, it's as if we've been kidnapped and taken to a different planet. We are snatched away from our everyday lives, held hostage by the limitations of our conditions. <br />
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There is no body in the Doctor's tomb. Instead there is a time tunnel, made of scar tissue from all the Doctor's travels through time and space. The villain of the piece, the Great Intelligence (hammed up wonderfully by Richard E. Grant) enters the time tunnel, aiming to split itself into fragments scattered throughout the Doctor's timeline and corrupt it absolutely, undoing all the good he's done.<br />
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Clara follows it into the time tunnel in an attempt to reverse the damage. Things take place around her. Previous incarnations of the Doctor run by. At first she feels out of control. She has no idea what's going on.<br />
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Gradually she works out her purpose. The Doctor is always there, though not always in the same form. She can recognise the best thing for the Doctor to do: she saves his life.<br />
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It's the same for us. At first, everything is confusion and feeling out of control. Fatigue, pain, brain fog. But gradually, a pattern emerges. We work out what to do. How to live our lives in the best possible way for ourselves and those around us. Maybe we're not saving the Doctor (or maybe you are?) but in our own way we're time lords, pacing and resting so we can do the things we really want to do.<br />
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We're the impossible girls and boys. We learn our purpose. We regain control over our lives.<br />
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We're spoonies.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com2tag:blogger.com,1999:blog-6661213178512699086.post-19442739227080214842013-05-01T07:34:00.002+01:002013-05-01T07:56:42.617+01:00#BADD Growing Up Beside YouThis is Imperial Place, Borehamwood.<br />
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A few days ago, someone asked me for directions to get there. I gave the directions. Off he trotted. I assume he got there - I have no reason to think he didn't.<br />
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OK, I hear you say. But why am I telling you this little anecdote?<br />
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Well, he asked me. There were other people around, but he asked <b>me</b> - the woman in the wheelchair. Unless you use a wheelchair yourself, you have no idea how rare this is.<br />
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You're much more likely to find someone looking at you like you're a bit weird because you're laughing, or standing up, or walking a few steps (YOU FRAUD!), or smoking a cigarette, or getting things off the top shelf in the supermarket, or clothes shopping, or drinking alcohol.<br />
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I mean, how dare I have anything approaching a normal life? I'm a cripple! It's surprising enough to see me out on my own without a minder, never mind doing things that everyone else - regular people, whose legs and stuff work - does.<br />
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Why does this happen? There has been a tradition of "<a href="http://geekfeminism.wikia.com/wiki/Othering" target="_blank">Othering</a>" disabled people, setting up an "us and them" dichotomy. Once disabled people are established as "them", they are seen as one homogenous mass. At the very most, they are split into "wheelchair users", "blind people", "deaf people" and so on. Within each sub-group, there is no scope for variation. So, for instance, a punk rocker using a wheelchair is far more shocking than an able-bodied punk rocker would be.<br />
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Other wheelchair users like myself may have experienced the shock it causes when they stand up, or walk a few paces. The standard definition of the subgroup "wheelchair user" is "totally unable to walk", and many members of the general population with no experience of disability are completely thrown by any standing or walking ability.<br />
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Similarly, use of a wheelchair is associated in many people's minds with learning difficulties. I have had an assistant in Clinton's Cards telling me how to use a book of stamps. (I told her I was doing a PhD and I thought I would cope.)<br />
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What can be done to counter this Othering? More and more exposure to more and more disabled people, showing our variety and the realities of our different lives, and how close they are in so many ways to the lives of everyone else in the world. Yes, that needs a more accessible society and a decent welfare system, so we're maybe talking long-term. But there are some good guys out there already. Think back to my Imperial Place experience. <br />
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Each individual like that who "gets it" is one more person who can spread the word that disabled people are - in the end - just people. It's best when it starts in childhood. So what we need to do is for you to grow up beside me, and I'll grow up beside you. Paolo Nutini says it well, I think.<br />
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<i>This is my post for Blogging Against Disablism Day 2013. You can find the other links on Goldfish's great blog (which I recommend in general!) <a href="http://blobolobolob.blogspot.co.uk/2013/05/blogging-against-disablism-day-2013.html" target="_blank">here</a>.</i>Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com5tag:blogger.com,1999:blog-6661213178512699086.post-71123780425073416812013-04-29T10:47:00.001+01:002013-04-29T10:47:37.682+01:00Multiple Sclerosis Awareness Week #MSAwarenessWeekMS Awareness Week starts today, 29th April 2013.<br />
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This is the one week a year when we - people with MS, our families and friends, and the organisations that support and inform us - try to spread the word about <a href="http://www.mssociety.org.uk/what-is-ms/information-about-ms/about-ms" target="_blank">what multiple sclerosis is</a> and <a href="http://www.mssociety.org.uk/what-is-ms/signs-and-symptoms" target="_blank">the many ways, often invisible but nonetheless potentially devastating, it can affect us</a>.<br />
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This year's awareness week comes with the <a href="http://www.bbc.co.uk/news/health-22307916" target="_blank">disturbing news</a> that only 40% of those eligible to receive one of the seven licensed MS drugs are actually getting them. This may be down to a lack of information and problems accessing specialists. The UK ranks 25th out of 27 in Europe on prescription rates, which given our relative wealth is really not good enough.<br />
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Decisions should be taken nationally about this kind of treatment and specialist care plans drawn up for each patient, with regular reviews allowing for treatment options to be assessed on a regular basis.<br />
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People with MS tend to do a lot of falling, both physically and mentally. That's OK. The thing is getting up again. Those of you who don't have MS, please understand that this can sometimes take us a little while.<br />
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It's MS Awareness Week. But we have to be aware of MS every day of the year.<br />
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For more information on MS, please visit:<br />
<a href="http://www.ms-uk.org/" target="_blank">MS-UK</a><br />
<a href="http://www.mssociety.org.uk/" target="_blank">MS Society</a><br />
<a href="http://www.mstrust.org.uk/" target="_blank">MS Trust</a>Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com0tag:blogger.com,1999:blog-6661213178512699086.post-87638857517258999612013-04-07T05:52:00.002+01:002013-04-07T06:27:32.972+01:00Placebos, sham surgeries and CCSVIRecently GPs took part in a <a href="http://www.nhs.uk/news/2013/03March/Pages/97-percent-of-GPs-admit-prescribing-placebos.aspx" target="_blank">survey</a> which showed that 97% of them had used <a href="http://en.wikipedia.org/wiki/Placebo" target="_blank">placebos</a> at some point in their careers. The truth is inevitably more nuanced than that headline figure: 97% had used what the researchers called "impure" placebos such as antibiotics for viruses, and the figure for "pure" placebos, treatments containing no active ingredients at all, was in fact 10%.<br />
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"Pure", inactive placebos such as sugar pills may seem the more
dangerous, but "impure" placebos may be actively dangerous to
health. For instance, antibiotics can have side-effects and may promote
antibiotic resistance.<br />
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Most of the doctors questioned thought that any risk of damaging the trust between doctor and patient was unacceptable, but that it was possible to prescribe a placebo to a patient without actively lying to them. <a href="http://www.guardian.co.uk/science/sifting-the-evidence/2013/mar/25/ethicality-of-prescribing-placebos" target="_blank">For instance</a>, half of the doctors told the patient that the intervention had helped others.<br />
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Is this ethical, particularly if it's possible that the patient would have got better anyway? If something is at the extreme ends of a range of measurements, the likelihood is that it will move towards the average. This is the statistical phenomenon called <a href="http://en.wikipedia.org/wiki/Regression_toward_the_mean" target="_blank">regression to the mean</a>. The medical application of this is that if someone is ill, on the whole they're likely to get better whether there's any intervention or not.<br />
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There may be a psychological effect from receiving a placebo, even if the patient knows that's what it is. <a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0015591" target="_blank">One study</a> found that even when the patient was fully aware that their treatment had no active ingredients, the placebo effect was still seen. However there were <a href="http://www.sciencebasedmedicine.org/index.php/placebo-effects-without-deception-well-not-exactly/" target="_blank">methodological flaws</a> in that study. More research is needed, to see if the results can be replicated.<br />
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Placebos are commonly used in trials to assess whether a new medication is better than no treatment at all. How can a surgical intervention be tested? Sometimes <a href="http://en.wikipedia.org/wiki/Sham_surgery" target="_blank">sham surgery</a> is used. Sham surgery forms an important <a href="http://en.wikipedia.org/wiki/Scientific_control" target="_blank">control</a>, as anaesthesia, the incision, post-operative care, and the patient's perception of having had an operation are the same.<br />
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<br />
However again there are ethical issues, as all surgery has the potential to harm the patient. As a result, sham surgical procedures are rare in human subjects.<br />
<br />
In a <a href="http://www.ncbi.nlm.nih.gov/pubmed/12110735" target="_blank">classic study in 2002</a>, patients with osteoarthritis in the knee either had standard surgery, had their knee joint washed out, or had an incision made in the skin and sewn up again. All the patients in the trial therefore experienced "surgery" of some sort, but didn't know which type. All three groups reported similar levels of pain reduction and improvement in mobility, suggesting that the standard surgery produced no advantage over placebo.<br />
<br />
<a href="http://www.eurekalert.org/pub_releases/2013-03/uab-mpd031413.php" target="_blank">A sham surgery trial</a> has recently reported relating to the controversial <a href="http://en.wikipedia.org/wiki/CCSVI" target="_blank">CCSVI </a>theory of the causation of MS, which hypothesises that MS is caused by compromised drainage of blood from the central nervous system. The proposed treatment is <a href="http://en.wikipedia.org/wiki/Liberation_therapy#Treatment" target="_blank">balloon venoplasty</a>, whereby a small balloon is threaded into the vein and then inflated to clear the blockage. Since 2009, around <a href="http://en.wikipedia.org/wiki/Liberation_therapy#Treatment" target="_blank">30,000 MS patients worldwide</a> have had this treatment, almost always privately rather than as part of a trial.<br />
<br />
<a href="http://www.webmd.boots.com/news/20130318/doubt-on-ccsvi-ms-treatment#" target="_blank">In this small trial</a>, 30 patients received either the balloon venoplasty treatment or a sham surgery. The treatment did not provide sustained improvement in patients. In fact in some cases, there was a deterioration.<br />
<br />
Clearly this was a small study, and more research is needed. But in the meantime, the researchers, who studied under Paolo Zamboni, the developer of the CCSVI theory, have urged patients to enroll for trials rather than pay for the treatment privately.<br />
<br />
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<a href="http://assets1.bigthink.com/system/idea_thumbnails/49160/original/placebo.jpg?1359322345" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="http://assets1.bigthink.com/system/idea_thumbnails/49160/original/placebo.jpg?1359322345" width="320" /></a></div>
<br />
Overall I believe placebos certainly have a valuable place in research, assuming of course that patients know they may receive the placebo rather than the active treatment. In the GP surgery, I'm not so sure. We should be using <a href="http://en.wikipedia.org/wiki/Evidence_based_medicine" target="_blank">evidence-based medicine</a>: that means the best available treatment for the condition, not sugar pills or inappropriate antibiotics. I suspect placebos will always be with us though, one way or the other.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com2tag:blogger.com,1999:blog-6661213178512699086.post-88752624739849996562013-03-27T19:33:00.002+00:002013-03-27T21:00:06.969+00:00Unhelpful response to the #WOWpetitionI don't know if you're already aware of the <a href="http://wowpetition.com/" target="_blank">WOW petition</a>. It was started a little over 3 months ago by comedian <a href="http://www.francescamartinez.com/" target="_blank">Francesca Martinez</a>, and is well on target to achieve 100,000 signatures by its closing date. That means it would considered for debate in the House of Commons.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://wowpetitiondotcom.files.wordpress.com/2013/02/wow-poster-color-01.jpg"></a><a href="http://wowpetitiondotcom.files.wordpress.com/2013/02/wow-poster-color-01.jpg?w=300&h=424" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://wowpetitiondotcom.files.wordpress.com/2013/02/wow-poster-color-01.jpg?w=300&h=424" width="226" /></a></div>
<br />
WOW stands for War on Welfare. Because frankly, that's how it does feel. Like this soulless government has declared war on those of us forced to claim welfare benefits.<br />
<br />
Let's say you're on Disability Living Allowance, and when that gets changed over to Personal Indepencence Payment you lose out. Well OK, that's just one thing (apart from the blue badge, and Motability car, and disabled railcard, and so on that it passported it you to). Maybe you can manage without the DLA. <b>Maybe</b>.<br />
<br />
But you're also on contributory Employment and Support Allowance, and you've been on it nearly a year. So that's about to stop.<br />
<br />
And that's before we get anywhere near the changes to Council Tax Benefit, and to Housing Benefit (the Bedroom Tax).<br />
<br />
Tens of thousands of sick disabled people are about to go under financially. And this government just doesn't give a damn. Oh, they always have <a href="http://www.channel4.com/news/disabled-people-hit-by-multiple-benefit-cuts" target="_blank">a soundbite</a>:<br />
<blockquote class="tr_bq">
There's a lot of misleading stories about the impact of our welfare
reforms on disabled people, which could lead to unnecessary
scaremongering. Our reforms will make sure the billions we spend every
year give more targeted support and better reflect today's understanding
of disability. Hundreds of thousands of disabled adults and children
will actually receive more support than now with the combined effect of
benefit changes under universal credit.</blockquote>
Targeted. Some people receiving more support than now. Well, as someone pointed out to me today (thanks Eggy!) all the NHS funds don't get allocated to intensive care: support is required at all levels of need.<br />
<br />
So, returning to the WOW petition, what it asks for (among some other things) is a cumulative impact assessment, not looking at the effect of each benefit "reform" (*spit*) separately, but how people will be affected in real life. Real people are complicated. Lots of us claim more than one benefit (partly because the system's so complex!)<br />
<br />
When a government e-petition gets 10,000 signatures, the department responsible for it gives a reply. It's taken a while for the WOW petition's reply to turn up: I only just noticed it, and the petition has over 27,500 signatures.<br />
<br />
To summarise the reply, it seems to be:<br />
<ul>
<li>We're not avoiding you.</li>
<li>This is hard.</li>
<li>The policies haven't all been decided yet.</li>
<li>There are impact assessments for individual benefits or for all tax, benefit and expenditure changes across households, but nobody's ever done what you're asking for, which is in between.</li>
<li>Did we mention this is hard?</li>
</ul>
My reply to that would be, with the greatest possible respect (and as civil servants they would know what an insult that is!) pop down to Ryman's, buy a new scientific calculator and get on with it. These are people's lives you're messing around with (at the command of your political masters), and there is a clear case for a cumulative impact assessment to be done.<br />
<br />
<a href="http://epetitions.direct.gov.uk/petitions/43154" target="_blank">If you haven't already signed the WOW petition, would you take a look and consider signing it?</a> The more signatures on the petition, the more pressure sympathetic MPs like Michael Meacher can put on the DWP on our behalf.<br />
<br />
Thanks!<br />
<br />
Edit: I'm all for avoiding unnecessary government expenditure, so I'm sure it would be fine for the DWP to use <a href="http://www.scope.org.uk/news/disabled-people-set-lose-283bn-support-2018" target="_blank">this cumulative impact assessment</a>, which Scope and Demos have just done. It calculates that those disabled people most severely affected by the cuts will lose £4,600 each year from what are already low incomes. As Richard Hawkes the chief executive of Scope says:<br />
<blockquote class="tr_bq">
At the moment there’s no place for disabled people in the Chancellor’s aspiration nation.</blockquote>
Sadly, that seems to be very true. Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com0tag:blogger.com,1999:blog-6661213178512699086.post-74813359553675957312013-03-22T11:50:00.001+00:002013-03-22T12:27:01.423+00:00PCC reply to my complaint about Daily Mail cartoon<i>I complained to the Press Complaints Commission about this cartoon, which was published in the Daily Mail on 25th February 2013.</i><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis5x767wjpvApVNL52EOebdpE-rr0Ye12Dgkky4cYfr_jizPxcyHhhB6SRIo2EV_oCo7bqIDQojs1Kbck2DXoBh2nD6pgeWYk7RPpReSD15CFRUCKHjHv9sPJ-ciSoAIcTkY09NCRPhsAQ/s1600/blisterDLA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis5x767wjpvApVNL52EOebdpE-rr0Ye12Dgkky4cYfr_jizPxcyHhhB6SRIo2EV_oCo7bqIDQojs1Kbck2DXoBh2nD6pgeWYk7RPpReSD15CFRUCKHjHv9sPJ-ciSoAIcTkY09NCRPhsAQ/s320/blisterDLA.jpg" width="231" /></a></div>
<i>This is their reply.</i><br />
<br />
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<br />
<div align="center" class="MsoNormal" style="text-align: center;">
<b>Commission’s
decision in the case of</b></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<b>Various v Daily
Mail</b></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
A number of complainants
expressed concern regarding a cartoon which had accompanied an article about
Disability Living Allowance (DLA). The cartoon had depicted a man with a blister,
saying “it’s a bad blister, but a bit of Disability Living Allowance should
make it better”. </div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Complainants considered that the
newspaper had breached Clause 1 (Accuracy) by inaccurately suggesting that DLA
could be claimed on the basis of such a trivial injury. They also considered
that it had been misleading to imply that people in receipt of DLA do not have
genuine need for the benefits they receive.</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The complainants considered that
the cartoon had been discriminatory towards the disabled, in breach of Clause
12 (Discrimination). A number of complainants also said that they had found the
article offensive.</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The Commission considered the
cartoon to have been a satirical commentary on the availability of disability
benefits. Cartoons are a well-established method of newspapers making satirical
comments about current affairs, and the Commission would be reluctant to
compromise the ability of publications to pass commentary in this manner.
Nonetheless, regardless of whether the cartoon’s message was satirical, the
newspaper was required to observe the terms of the Editors’ Code of Practice.
Clause 1 (Accuracy) states that “the press must take care not to publish
inaccurate, misleading or distorted information, including pictures” and “the
press, whilst free to be partisan, must distinguish clearly between comment,
conjecture and fact”. </div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The Commission was satisfied that
readers generally would have recognised that the cartoon expressed the robust,
and even controversial, opinion of the newspaper about the general availability
of disability benefits, rather than a statement of fact about the precise circumstances
in which benefits can be claimed. While the cartoon had suggested that benefits
are too readily available, it had not implied that everyone on DLA was
receiving it unnecessarily. The newspaper had not failed to distinguish comment
from fact. There was no breach of the Code.</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Under Clause 12 the press must
avoid prejudicial or pejorative reference to an individual’s physical or mental
illness or disability and details of an individual’s physical or mental illness
or disability must be avoided unless genuinely relevant to the story. The
Commission made clear that Clause 12 does not cover references to groups or
categories of people. The article had not made discriminatory reference towards
an individual. In the absence of reference to a particular individual, the
Commission did not establish a breach of Clause 12. </div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The Commission acknowledged that
a number of complainants found the cartoon offensive; however, it made clear
that the terms of the Editors’ Code of Practice do not address issues of taste
and offence. The Code is designed to address the potentially competing rights
of freedom of expression and other rights of individuals, such as privacy.
Newspapers and magazines have editorial freedom to publish what they consider
to be appropriate provided that the rights of individuals – enshrined in the
terms of the Code which specifically defines and protects these rights –
are not compromised. It could not, therefore, comment on this aspect of
the complaint further.</div>
<br />
<br />
<i>I am not satisfied with this response. Does anyone know if there are further steps I can take?</i>Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com2tag:blogger.com,1999:blog-6661213178512699086.post-54230788014974761282013-03-19T16:32:00.001+00:002013-03-19T16:32:22.289+00:00Labour doesn't represent me any moreI have voted Labour at every election since I gained my majority, and became a member of the Labour Party around 1990. I am now going to leave the party, and will not be voting for them at future elections. This is not a decision I've reached easily, so I wanted to explain some of my reasons. From conversations with other people, I know I'm not alone.<br />
<br />
I have multiple sclerosis and other long-term conditions. I wish I was well enough to work, but I know I'm not. I don't think I'll ever work again, unless there's something I can do from home, for one or two hours each week, and entirely under my own control as and when I feel well enough.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://upload.wikimedia.org/wikipedia/commons/4/4d/Gandhi_smiling.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://upload.wikimedia.org/wikipedia/commons/4/4d/Gandhi_smiling.jpg" width="251" /></a></div>
<br />
That being the case, I don't think it's extreme to expect society to provide me, and other long-term sick and disabled people, with support. After all, we consider ourselves to be a civilised country, and as Mahatma Ghandi said:<br />
<blockquote class="tr_bq">
A nation's greatness is measured by how it treats its weakest members.</blockquote>
According to <a href="http://www.labour.org.uk/what_is_the_labour_party" target="_blank">its website</a>, the first and second values on which the Labour Party stands are social justice and strong community & social values. So Labour must agree that sick and disabled people should be supported, right?<br />
<br />
Well...it's hard to tell, really. It was the Labour Party which awarded the contract for the unfit for purpose Work Capability Assessments to the iniquitous Atos. They have not, until recently, spoken up against the Welfare Reform Act, which has forced so many genuinely disabled people into abject poverty, and the fear of which has caused many people, sadly, to kill themselves.<br />
<br />
Party leader Ed Milliband has relied too much on "I met a man who..." rhetoric, rather than engaging with the issues and meeting those with first-hand knowledge of living with long-term sickness and disability. Was the party trying too hard to keep the support of the middle ground, poisoned as they were by media and ConDem stories of benefit scroungers?<br />
<br />
Through all this, and other issues (that's just the one most personal to me), I kept my faith with the Labour Party.<br />
<br />
As I write this, the House of Commons is debating <a href="http://www.guardian.co.uk/society/2013/mar/15/dwp-law-change-jobseekers-poundland" target="_blank">emergency legislation</a> brought in by the government so that they don't have to pay back benefit owed to jobseekers after the Poundland workfare ruling. It seems obvious how Labour would vote in this debate. Labour, yes? It's a debate about the use of people's labour. Whether people deserve to be paid for...their labour. The Labour party came out of the whole workers' rights movement. And think back to those values: Social justice. Community and social values. <br />
<br />
Well, the Labour Party have told their MPs to abstain.Yep, not vote at all. I mean...what?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://static.guim.co.uk/sys-images/Guardian/Pix/pictures/2011/9/26/1317065327838/Labour-party-leader-Ed-Mi-007.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="192" src="http://static.guim.co.uk/sys-images/Guardian/Pix/pictures/2011/9/26/1317065327838/Labour-party-leader-Ed-Mi-007.jpg" width="320" /></a></div>
<br />
So, Labour Party, it's not me, it's you. You walked away from me. You don't represent me any more. I'll be resigning my membership. Ironically, it looks like I'll be abstaining in future elections, as there's no other party I could bring myself to vote for.<br />
<br />
And that's the end of me and Labour.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com14tag:blogger.com,1999:blog-6661213178512699086.post-64097286859664129002013-02-24T08:19:00.001+00:002013-02-25T23:07:34.245+00:00The #OscarPistorius case: a fallen hero, a horror story, and sick jokesFor as long as I can remember, I've been an athletics fan. It's such a pure form of sport: who can run fastest, jump furthest or highest, throw furthest? It's competitive, but each individual is trying to beat their own personal best mark as well as the competitor in the next lane.<br />
<br />
Historically, Paralympic sport has been far less prominent than mainstream, so it's been great to see South African <a href="http://en.wikipedia.org/wiki/Oscar_Pistorius" target="_blank">Oscar Pistorius</a>, the "Blade Runner", become one of the best known world sportsmen over the last few years,<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://static.guim.co.uk/sys-images/Sport/Pix/pictures/2012/8/4/1344074180696/Oscar-Pistorius-002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="192" src="http://static.guim.co.uk/sys-images/Sport/Pix/pictures/2012/8/4/1344074180696/Oscar-Pistorius-002.jpg" width="320" /></a></div>
<br />
Although he was already well known in Paralympic sport, his real fame came after he challenged the <a href="http://www.iaaf.org/" target="_blank">IAAF</a> to be allowed to take part in mainstream events. They felt that his artificial legs gave him an advantage over able-bodied runners, <a href="http://news.bbc.co.uk/sport1/hi/olympics/athletics/7141302.stm" target="_blank">claiming he had to use less energy to run with them</a>.<br />
<br />
After an appeal, Pistorius was cleared to run with able-bodied athletes, and in 2012 in London he became the first double amputee to compete in an Olympic Games. He also won 2 gold and one silver medal in the 2012 Paralympic Games.<br />
<br />
It seemed that Oscar Pistorius was truly the golden boy of the Paralympics movement, and of South Africa. He was a hero to millions around the world (including me) and a role model to disabled young people. What could possibly go wrong?<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.globalpost.com/sites/default/files/imagecache/gp3_slideshow_large/photos/2013-February/oscar_pistorius_reeva_steenkamp_domestic_allegations.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://www.globalpost.com/sites/default/files/imagecache/gp3_slideshow_large/photos/2013-February/oscar_pistorius_reeva_steenkamp_domestic_allegations.jpg" width="320" /></a></div>
Early in the morning of 14th February 2013, Oscar Pistorius shot and killed his girlfriend, model and campaigner <a href="http://en.wikipedia.org/wiki/Reeva_Steenkamp" target="_blank">Reeva Steenkamp</a>. That is not in doubt. The reason for the shooting is: whether it was deliberate or accidental.<br />
<br />
I'm not a lawyer, nor was I in the courtroom for the bail hearing, nor obviously in Pistorius's apartment. So I'll confine myself to saying that Reeva Steenkamp's life has been cut tragically short, and her family's lives blighted. And whatever happened, Pistorius will never be the same golden young man again.<br />
<br />
Within minutes of news of the shooting appearing on sites like Twitter and Facebook, the jokes started. You would think jokes about a tragic death would be tasteless enough, but these focused on Pistorius's impairment. The same has happened with other disabled personalities, including swimmer Ellie Simmonds after last year's Paralympics.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.expressandstar.com/wpmvc/wp/wp-content/uploads/2012/09/Ellie-Simmonds11.thumb.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.expressandstar.com/wpmvc/wp/wp-content/uploads/2012/09/Ellie-Simmonds11.thumb.jpg" /></a></div>
<br />
I'm all for jokes. Humour makes the world go round. But a lot of humour is about power dynamics. As someone put it (sorry, I can't remember who), you can punch up or punch sideways, but punching down just isn't on. As a group, disabled people are less powerful than able-bodied people in society, so by making jokes about their disabilities able-bodied people are punching down.<br />
<br />
<a href="http://en.wikipedia.org/wiki/Disablism" target="_blank">Disablism </a>isn't always as simple as physical attacks or direct insults against people with disabilities. And being told "Don't be daft, it's just a joke!" or "You just don't have a sense of humour!" doesn't help.<br />
<br />
After the UK's excellent performance both in the delivery of the Olympic and Paralympic Games and in competition, it seemed possible that the legacy would include a new attitude to disabled people. On this evidence? Maybe not. We still have a long way to go.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com1tag:blogger.com,1999:blog-6661213178512699086.post-50588892590008410402013-01-31T11:13:00.000+00:002013-01-31T16:16:57.668+00:00#Derek: self-indulgence, saccharine and disabilityLast night saw the first in Ricky Gervais's new series Derek. I <a href="http://funkymangosmusings.blogspot.co.uk/2012/05/badd-dead-happy-derek-and-disablism.html" target="_blank">posted about the pilot</a> when it was screened last April, and I've never made any secret of the fact that I wasn't a fan. It seemed unfair for me to dismiss the series without seeing it, though, so I watched last night. The result was many, many thoughts - and here are some of them.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.channel4.com/assets/programmes/images/derek/caf0a7d8-c8e5-4c6e-92bf-54d9eb3cda14_625x352.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="http://www.channel4.com/assets/programmes/images/derek/caf0a7d8-c8e5-4c6e-92bf-54d9eb3cda14_625x352.jpg" width="320" /></a></div>
<br />
It's in Gervais's customary fly-on-the-wall mockumentary style. 50 year old Derek is a volunteer helper in a care home. His best friends are manager Hannah, odd job man Dougie, and a homeless man, Kev. I couldn't quite work out the purpose of Kev. He is unpleasant, smelly, alcoholic, and sexist, and really just hangs round on the periphery. Perhaps he's meant to be the antithesis of Derek's goodness and innocence? <br />
<br />
The first episode had perhaps the most predictable plot possible for a show set in a care home. It was threatened with closure and the characters rallied round to save it. Additionally, of course, this is a timely story, with the current social care cuts.<br />
<br />
Channel 4 billed Derek as as a "<a href="http://www.channel4.com/programmes/derek" target="_blank">bittersweet comedy drama</a>", but to me there was neither enough tension for drama nor enough laughs for a sitcom. I was annoyed by the attempts to signal what emotion we should be feeling: the sub-<a href="http://www.einaudi-islands.com/island_emotions" target="_blank">Einaudi </a>piano music to show that this was a poignant or sad moment was a prime example. At times I was in danger of dying from a saccharine overdose, such as when Hannah explained the importance of caring.<br />
<br />
It has to be said that many people loved the programme. The tweets below are just a couple of many examples.<br />
<blockquote class="tr_bq">
<a class="twitter-hashtag pretty-link js-nav" data-query-source="hashtag_click" dir="ltr" href="https://twitter.com/search?q=%23Derek&src=hash"><s>#</s><b>Derek</b></a> was an emotional rollercoaster, had me crying & laughing in 30mins. Funny, sad but true and very insightful. <a href="https://twitter.com/Ms_EmmaJ" target="_blank">(Emma J Fonzarell) </a></blockquote>
<blockquote class="tr_bq">
Just caught up with <a class="twitter-hashtag pretty-link js-nav" data-query-source="hashtag_click" dir="ltr" href="https://twitter.com/search?q=%23Derek&src=hash"><s>#</s><b>Derek</b></a>! Absolutely Fantastic, more comedy brilliance from <a class="twitter-atreply pretty-link" dir="ltr" href="https://twitter.com/rickygervais"><s>@</s><b>rickygervais</b></a> :) <a href="https://twitter.com/Lisamarwick01" target="_blank">(Lisa Marwick) </a></blockquote>
But others took issue with the accuracy of the setting:<br />
<blockquote class="tr_bq">
<a class="twitter-atreply pretty-link" dir="ltr" href="https://twitter.com/rickygervais"><s>@</s><b>rickygervais</b></a> Have you ever set foot in a care home? I know you think it's hilarious to be misinformed but come on, <a class="twitter-hashtag pretty-link js-nav" data-query-source="hashtag_click" dir="ltr" href="https://twitter.com/search?q=%23Derek&src=hash"><s>#</s><b>Derek</b></a> is lazy writing. <a href="https://twitter.com/BitsyTheCat" target="_blank">(Bitsy</a>)</blockquote>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://blog.tvguide.co.uk/wp-content/uploads/derek.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="253" src="http://blog.tvguide.co.uk/wp-content/uploads/derek.jpg" width="320" /></a></div>
<br />
One issue that keeps coming up is whether the character Derek is disabled. <a href="http://www.guardian.co.uk/culture/2013/jan/31/ricky-gervais-derek-cruel-unusual" target="_blank">Ricky Gervais continues to insist</a> that he's not, that he's simply naive and innocent, whereas many viewers are in little doubt that Derek has some kind of learning disability. Actor and comedian Peter Serafinowicz questioned:<br />
<blockquote class="tr_bq">
Why has David Brent got Down's Syndrome? <a class="twitter-hashtag pretty-link js-nav" data-query-source="hashtag_click" dir="ltr" href="https://twitter.com/search?q=%23derek&src=hash"><s>#</s><b>derek</b></a> <a href="https://twitter.com/serafinowicz/statuses/296744586255142912?utm_source=twitterfeed&utm_medium=twitter" target="_blank">(Peter Serafinowicz</a>)</blockquote>
In possibly a direct response to criticisms of the pilot, this was raised in the programme, with "man from the council" Roger asking Derek whether he'd ever been tested for autism.<br />
<blockquote class="tr_bq">
'If I'm autistic would it change me? Would it kill me? Would it make me a different person?' 'No.' 'Then leave it.'</blockquote>
Now that's all fine for Ricky Gervais, but in real life, a diagnosis can be hugely comforting to the parents of a child with autism. A rather glib and uninformed attempt at manipulating the emotions of the viewers.<br />
<br />
Derek has been around since the late 1990s. Back in 2001, Ricky Gervais and Stephen Merchant <a href="http://web.archive.org/web/20051230122016/http:/www.themightyboosh.inuk.com/rickyandstephen.html" target="_blank">discussed the character. </a><br />
<blockquote class="tr_bq">
"Derek," Ricky begins, "is just a nice,
simple lad who sees the world differently." "Yeah,"
says Steve. "That's the corporate party line. Toeing
the party line. The man who sees the world
differently. Brilliant."</blockquote>
Hm.<br />
<br />
In the end though, does it matter if Derek is disabled or not? A lot of
comedy is about people doing stupid things. The problem comes when it
goes beyond "mainstream" stupidity. Are we laughing at the characters or with them? In sitcoms like
<a href="http://www.sitcom.co.uk/im_with_stupid/" target="_blank">I'm With Stupid</a>
disabled characters are played by disabled actors, and the disabled man
who originated the idea was story consultant for the series. A
character with a disability being played by a non-disabled actor -
particularly in a comedy - can raise questions about how accurate and
sensitive their portrayal is.<br />
<br />
And what effect will the portrayal have on public attitudes to disabled people? Comedian Stewart Lee, writing about the original YouTube videos of the character, <a href="http://www.guardian.co.uk/commentisfree/2011/nov/13/stewart-lee-comedy-offensive-gervais" target="_blank">said</a>:<br />
<blockquote class="tr_bq">
"...watching Gervais's Derek Noakes on YouTube, I imagined feral children
trailing real Dereks around supermarkets, chanting "Derek Derek", as
they doubtless would were the series to be made, and wondered if,
sometimes, discretion is not the better part of valour." </blockquote>
The evidence was on Twitter:<br />
<blockquote class="tr_bq">
<a class="twitter-atreply pretty-link" dir="ltr" href="https://twitter.com/JonnyLobster"><s>@</s><b>JonnyLobster</b></a> <a class="twitter-atreply pretty-link" dir="ltr" href="https://twitter.com/Jmonkey_12"><s>@</s><b>jmonkey_12</b></a> try an guess who i sm ya fucking beaut!! Bet ya dnt know cause ya <a class="twitter-hashtag pretty-link js-nav" data-query-source="hashtag_click" dir="ltr" href="https://twitter.com/search?q=%23Derek&src=hash"><s>#</s><b>Derek</b></a> (<a href="https://twitter.com/1lloydie" target="_blank">Bernie Wog)</a></blockquote>
<blockquote class="tr_bq">
.<a class="twitter-atreply pretty-link" dir="ltr" href="https://twitter.com/rickygervais"><s>@</s><b>rickygervais</b></a> hey man! Saw <a class="twitter-hashtag pretty-link js-nav" data-query-source="hashtag_click" dir="ltr" href="https://twitter.com/search?q=%23Derek&src=hash"><s>#</s><b>Derek</b></a> ! So glad someone is finally making a sitcom where we can laugh at retards! Classic Mate! <a href="https://twitter.com/alemenko" target="_blank">(Alex) </a></blockquote>
And as I recounted in <a href="http://funkymangosmusings.blogspot.co.uk/2012/05/badd-dead-happy-derek-and-disablism.html" target="_blank">my previous post about Derek</a>, I have had a group of kids shouting "Oi, Derek!" at me in the street.<br />
<br />
I suspect what Gervais was aiming for was a version of Forrest Gump, where innocence and goodness triumph in a confusing and wicked world. Did he succeed? Not for me. It was too maudlin. Ricky Gervais can be very funny, but he needs someone - Stephen Merchant does it par excellence - to keep him from tipping over the edge into self-indulgence.<br />
<br />
Perhaps if there's another series of Derek, the title character should be played by a disabled actor. I'd take more interest in that.<br />
<blockquote class="tr_bq">
<div class="js-tweet-text">
</div>
</blockquote>
Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com5tag:blogger.com,1999:blog-6661213178512699086.post-78396477139330685652013-01-17T10:00:00.000+00:002013-01-17T10:00:11.379+00:00Thousands of disabled and sick people will be hit by new ESA/WCA changes #esaSOSOn 28 January 2013 the UK government is due to make a set
of changes to the Work Capability Assessment (WCA). The WCA is the <a href="http://bma.org.uk/news-views-analysis/news/2012/june/scrap-work-capability-assessment-doctors-demand">flawed ‘fitness to work’ test</a>
whic<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">h
assesses whether sick and disabled people can get <span style="mso-bidi-font-weight: bold;">Employment and Support Allowance (ESA): a benefit designed to help
and support very unwell or profoundly disabled people into work</span>. </span><br />
<br />
<span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Although these changes have been advertised as small ‘amendments’,
they will in fact have a huge impact on</span> the way people’s
illnesses and disabilities are assessed. Many vulnerable people’s needs will
suddenly be able to be overlooked or ignored, meaning they could end up
losing the support they desperately need to manage their conditions.<br />
<br />
<b>Hundreds of thousands of sick and disabled people across
Britain need your help to fight these changes!</b><br />
<br />
<b><u>PROBLEM 1: FALSE ASSUMPTIONS</u> </b><br />
In the fitness to work test, your needs are assessed by a
‘healthcare professional’ employed by the French private company ATOS. This
assessor doesn’t just need to look at your current difficulties. For example, they
can also imagine how using an aid (e.g. a wheelchair) might improve your
ability to work and make a judgement based on that – without even asking your
opinion!<br />
<br />
However, soon this “imaginary test” will be able to be used
for many more aids (including guide dogs and false limbs!). This means that
soon thousands more people could be judged as fit to work, without being consulted,
on the basis of an “imaginary” aid they don’t own or may not be able to use!<br />
<br />
It gets worse. Even if returning to work may clearly put you
at risk, these changes will mean you can still lose your disability benefit – as
long as the assessor believes that trying a new therapy or treatment <b>might</b> reduce that risk. There’s no
need for evidence that the treatment will help: you will lose support
either way, making it much harder to manage if the treatment doesn’t work as
hoped – let alone if it ends up making things worse.<br />
<br />
<i>>>> Imagine Bert, who
suffers from severe
schizophrenia, but is found fit to work and made to take behavioural
therapy in
the hope of improving his condition. He will lose his disability
benefit, without the assessor having to look at several vital questions:
how hard it would
be for Bert to contact a psychiatrist? How long would an NHS appointment
take to
organize? Are there private options in his area – and could he afford
them if
so? What if the therapy doesn’t work, or takes a long time to adjust to?
If the government’s rule changes go through, people like
Bert who are desperate to work will find it nearly impossible to get an
accurate assessment, affecting the quality of their support and actively
preventing their efforts to get back into work <<<.
</i><u> </u><br />
<br />
<b><u>PROBLEM 2: SEPARATING PHYSICAL AND MENTAL HEALTH</u></b><br />
The government is also trying to change the way people’s
conditions are assessed by dividing health problems into two separate boxes:
‘physical’ and ‘mental’. So, for instance, when looking at what tasks people can do, only the
‘physical half’ of the test will apply to those with physical disabilities.
The same goes for the effects of treatment: for instance., if you’re taking mental
health medication, only mental health side-effects will be looked at.<br />
<br />
This completely fails to understand the way that many disabilities
and illnesses can lead to both physical and mental effects. This is also
the case for many common treatments: such as those for schizophrenia,
Parkinson’s disease and multiple sclerosis.<br />
<br />
<i>>>> Think of Emily, who suffers severe, chronic
pain because of nerve damage to her leg. Emily is among the <a href="http://www.nationalpainaudit.org/media/files/NationalPainAudit-2012.pdf">49% of chronic pain sufferers</a> who also suffer depression as a result of continuous pain. </i><i style="mso-bidi-font-style: normal;">An assessor may see Emily as able to do some work as long as she takes
strong painkillers for the rest of her life, meaning she could pass the
‘fitness’ test. Yet the painkillers may not deal with the depression caused by
her condition. Painkillers have also often been shown to affect people’s wakefulness
and decision-making. So taking the medication may affect Emily’s ability to do
a job in a completely new way – yet because these new problems are cognitive, they would not need to be looked
at by the assessor when making their decision.</i> <<<<br />
<br />
Pretending the effects of illnesses and disabilities can be
separated in this way goes against all medical practice. Going even further,
and using this method to ignore sick and disabled people’s needs, is at best hopeless
policy, and at worst deliberate cruelty. <b>We cannot let the government treat
some of the most vulnerable people in British society in this way.</b>
<u> </u><br />
<br />
<b><u>HOW YOU CAN HELP</u>
</b><br />
The main way you can help is by <b>spreading the message
about these changes to ESA</b>. The government have tried to sneak them under
the radar – the last thing they will want is people talking about them! <br />
1) Email your MP (you can search by name or constituency at <a href="http://www.parliament.uk/mps-lords-and-offices/mps/">http://www.parliament.uk/mps-lords-and-offices/mps/</a>);<br />
2) Share this blog post on twitter (using the hashtag #esaSOS),
Facebook and other social media. <b>Click on the buttons below this post to share on Twitter and Facebook.</b><br />
3) Email your friends and family a link to this post – or
simply talk to them about it!
Again, the main way we can get the government to reconsider
is <b>by getting people to talk about the injustice of these changes.</b>So
please spread the word as far and wide as you can!
<br />
<br />
<b>Thank you so much for reading this far. Now let’s make sure
these unwanted, damaging benefit changes never see the light of day!</b>
<b> </b><br />
<br />
<b>If you want to do more, please sign <a href="http://wowpetition.com/" target="_blank">#WOWpetition</a> and call on the government to think again. </b> Ask all of your friends to sign too!<br />
<br />
The full #Spartacus briefing on the proposed changes to ESA can be found <a href="http://www.ekklesia.co.uk/ESAbriefing" target="_blank">here</a>. Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com5tag:blogger.com,1999:blog-6661213178512699086.post-40704330302126360982012-12-31T14:20:00.000+00:002012-12-31T14:31:33.524+00:00RetrospectiveThe end of the year is traditionally a time for taking stock, so on this, the last day of 2012, I'm going to spend a while looking back. I want to summarise some of the good things that have happened as well as some of the not so good things.<br />
<br />
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<br />
<ul>
<li>I was proud to be involved with the dissemination of the <a href="http://wearespartacus.org.uk/spartacus-report/" target="_blank">Spartacus Report</a>. I helped to collect supportive quotes from celebrities, posted them on here, and publicised them on Facebook and Twitter.</li>
<li>I started writing fiction! I completed a short story, the first fiction I've written since leaving school more than three decades ago. I'm still working on it, redrafting and so on, and I'm also plotting out some more. The long-term plan is that I'll build up a collection of short stories loosely themed round disability, then possibly sell them on Amazon as an e-book.</li>
<li>I organised a meal for 28 people in Birmingham, cooked by <a href="http://www.hardeeplive.com/" target="_blank">Hardeep Singh Kohli</a> and raising funds for <a href="http://www.sfts.org.uk/" target="_blank">Shelter For The Storm</a>.</li>
<li>I didn't blog nearly as much as I would have liked to, but most of the posts I did do were picked up for cross-posting on other websites.</li>
<li>I finished the year ranked No.7 in <a href="http://labs.ebuzzing.co.uk/top-blogs/health" target="_blank">ebuzzing's Health Blogs</a>.</li>
<li>My lovely cat Bing sadly died.</li>
</ul>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ3BJYhpLkTexmckR5bk8NHrqseSbNNLYcPPI2kFGQYu2PnPVwHVjivBlxXmcfMHWB45rbxpZIor3-wRxKdqQLf2bm9L6kha-hKu3cv1DqErdVsmsdjiG-FLW6oHzUlCX4XJQc4sM7r02k/s1600/bingsink.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ3BJYhpLkTexmckR5bk8NHrqseSbNNLYcPPI2kFGQYu2PnPVwHVjivBlxXmcfMHWB45rbxpZIor3-wRxKdqQLf2bm9L6kha-hKu3cv1DqErdVsmsdjiG-FLW6oHzUlCX4XJQc4sM7r02k/s320/bingsink.jpg" width="320" /></a></div>
<ul>
<li>But gorgeous Kaya came to live with me instead.</li>
</ul>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWrxoKIt_rnFSMvkmrNHNdQmZjO8PNDRl7goVeN8OdvhWskfV_cMIsrKp4kVrnie7kCiPJbI9gf44qMAJeGUveBOfIr4Gwsm2sJ1P4M4KWgR3CIO1JvxtJuVhX3GxKZpBdPgA4g8at0fAe/s1600/kaya+sept+2012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWrxoKIt_rnFSMvkmrNHNdQmZjO8PNDRl7goVeN8OdvhWskfV_cMIsrKp4kVrnie7kCiPJbI9gf44qMAJeGUveBOfIr4Gwsm2sJ1P4M4KWgR3CIO1JvxtJuVhX3GxKZpBdPgA4g8at0fAe/s320/kaya+sept+2012.jpg" width="320" /></a></div>
<br />
<ul>
<li>I went to some great gigs and some excellent theatre shows.</li>
<li>I trekked down to Peckham for a lovely party at Malgosia's, and met Caroline from Poland and lots of other nice people.</li>
<li>My health wasn't that great, but I'm still breathing and still going!</li>
<li>I appreciate my "real life" and online friends more than ever. Love you all x</li>
</ul>
Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com4tag:blogger.com,1999:blog-6661213178512699086.post-81238344070824851312012-11-16T19:30:00.000+00:002012-11-16T19:49:03.765+00:00Pudsey Bear’s WCA<i>This is a guest post by <a href="https://twitter.com/samedifference1" target="_blank">Sarah Ismail</a>, editor of the <a href="http://www.samedifference1.com/" target="_blank">Same Difference</a> blog.</i><br />
<br />
<br />
Here’s what happened when Pudsey, the disabled bear, went for a Work Capability Assessment to the offices of ATOS.<br />
<br />
<b>ATOS Worke</b>r: Hello, please sit down.<br />
<br />
(Pudsey sits, looking confused)<br />
<br />
<b>ATOS Worker</b>: So, he can sit independently. How are you today?<br />
<br />
<b>Pudsey</b>: Good, thank you.<br />
<br />
<b>ATOS Worker</b>: Hold your arms out, turn your hands over. Straighten your fingers.<br />
<br />
<b>Pudsey</b>: I don’t have hands, or fingers.<br />
<br />
<b>ATOS Worker</b>: Hmmm... stand up on your tiptoes.<br />
<br />
<b>Pudsey</b>: I don’t have toes... or feet.<br />
<br />
<b>ATOS Worker</b>: Hmm... please remove hat horrible scarf from across your face. Open your right eye.<br />
<br />
<b>Pudsey</b>: It’s not a scarf, it’s an eye patch. And I don’t have a right eye. One of the children pulled it off. That’s why I had to stop working. I’m partially sighted.<br />
<br />
<b>ATOS Worker</b>: Children? You have children? You’re not disabled! Disabled people can't have CHILDREN!<br />
<br />
<b>Pudsey</b>: They’re not my children... I’m a charity mascot... they’re the children I help.<br />
<br />
<b>ATOS Worker</b>: A charity mascot? So, you already have a job. Disability benefit fraud... well well well.<br />
<br />
<b>Pudsey</b>: But I’m a partially sighted teddy bear with no fingers, hands, toes or feet...<br />
<br />
<b>ATOS Worker</b>: Well, Mr Pudsey, if you’re fit to be in the same room as children, you’re fit to work. Close the door on your way out. NEXT!<br />
<br />
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Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com2tag:blogger.com,1999:blog-6661213178512699086.post-3660546957172956692012-11-16T10:30:00.000+00:002012-11-16T11:53:08.820+00:00Children in Need and Inspiration PornTonight is the annual Children in Need telethon. Usually staid newsreaders will dance in their pants, the casts of soap operas will stage production numbers, and pop groups will try to revive flagging careers - all to encourage the Great British Public to phone in with donations to help disadvantaged children in the UK. Members of the public will already have completed various sponsored challenges: shaving their heads, lying in baths of baked beans, and so on.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://ystv.co.uk/static/images/shows/LOGO.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="127" src="http://ystv.co.uk/static/images/shows/LOGO.gif" width="320" /></a></div>
So...great, right? Charities get money. Celebs get to tit around doing fun things and feeling the glow of philanthropy Members of the public get to laugh at said celebs and also sometimes take part in events. Win-win-win!.<br />
<br />
Or is it? What about the recipients of this largesse?<br />
<br />
If a child is living in poverty, that's something the government should be fixing. I pay my taxes for that. (Yes, yes, I know, we currently have the ConDems, but I'm talking <b>should</b>.) It shouldn't be down to charity to sort out the problems of inequality in our society.<br />
<br />
Then there's the whole pity thing. If you can bear to watch, you'll see a lot of kids in wheelchairs gazing out of windows, a tear in their eye. The message seems to be that if you're disabled, you're an object of pity, and can't possibly be happy. Well, dammit. I may be disabled, but anyone who tries pitying me will get their arm ripped off and beaten to death with the soggy end. And pity promotes charity, rather than inclusion in society. While I have my moments, like everyone else, I'm generally pretty happy. Disability doesn't preclude happiness, any more than any other human state does. <br />
<br />
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<br />
There's a thing that's been called "Inspiration Porn". It involves removing a disabled person's individuality and humanity, presenting a snapshot of them to get (generally non-disabled) people to gee their ideas up. The disabled person can be doing the most everyday thing: I've been called "brave" for doing my shopping (was there a killer shark in the vegetable aisle?), but the "I" word will still be used.<br />
<br />
Programmes like Children in Need are full of inspiration porn. The other day I watched the Children in Need special of a DIY show. They were renovating a day centre for children with special needs. At one point, I clicked on the Twitter hashtag for the programme, #DIYSOS.<br />
<br />
Apart from one charmer who thought disabled kids got treated far too well, many tweets were fully inspiration porned up. For instance:<br />
<blockquote class="tr_bq">
...puts all our little daily gripes into perspective when you see what these kids have to go through <s>#</s>DIYSOS</blockquote>
<blockquote class="tr_bq">
<s>#</s>DIYSOS<u> </u>amazing achievement, bless them kids & their families. Don't realise how lucky we are.
</blockquote>
Children, yes even disabled children, are more than fodder for inspirational snapshots of their lives. They are real, complex, sometimes happy and sometimes sad, sometimes angry with their situation and sometimes not bothered, and Always. Just. Kids.<br />
<br />
Let's treat them as that, yeah? Rather than as pathetic objects, needing pity and charity. <b>Not </b>good for the self-esteem.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com3tag:blogger.com,1999:blog-6661213178512699086.post-77104513013805766492012-10-28T06:26:00.001+00:002012-10-28T09:05:41.193+00:00Big Pharma and price hikes: not NICE<br />
Having a long-term illness affects your life, and your concerns, in lots of ways. For once, I'm not talking about the symptoms, about pain, fatigue, or whatever characterises your particular flavour of poorliness. I want to write about the medications many of us need, and how we, and our doctors, are held to ransom by the pharmaceutical companies - "Big Pharma" - that manufacture them.<br />
<br />
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<a href="http://www.adultmeducation.com/images/Overview.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="http://www.adultmeducation.com/images/Overview.jpg" width="320" /></a></div>
<br />
<a href="http://www.nhs.uk/medicine-guides/pages/selectorshow.aspx?medicine=Epanutin%20capsules" target="_blank">Epanutin </a>is one brand name of a drug called <a href="http://en.wikipedia.org/wiki/Phenytoin" target="_blank">phenytoin</a>, which reduces the risk of seizures for people with epilepsy. It's used less than it used to be, but it's still taken by around 100,000 people in the UK. The cost of this was around £2 million a year.<br />
<br />
The rights to manufacture Epanutin have recently been sold by <a href="http://www.pfizer.co.uk/default.aspx" target="_blank">Pfizer</a>, to UK firm <a href="http://www.flynnpharma.com/" target="_blank">Flynn Pharma</a>. <a href="http://www.telegraph.co.uk/health/healthnews/9604683/Pharma-firm-hikes-cost-of-epilepsy-drug-24-times.html" target="_blank">They've repackaged it and increased the bill by a staggering 2330% to £46.6 million</a>. All that has changed is the packaging: the capsules themselves are identical.<br />
<br />
Because phenytoin is a relatively old drug, it's out of patent and any drug company can make it. So the NHS can just switch to another supplier, right? Sadly, wrong. Pfizer, and now Flynn, are virtually the only manufacturers of the capsules. Phenytoin is also available as a syrup and as tablets, but there's a problem. People with epilepsy tend to be extremely sensitive to levels of their medication in their blood, so they and their doctors are reluctant to switch from the Epanutin capsules. As a result, there's virtually no competition to make another version of phenytoin, and Flynn pretty much have a monopoly.<br />
<br />
Result: Flynn basically have the NHS over a barrel. Because Epanutin is a standard treatment for epilepsy, it's more or less 100% sure that the NHS will go on funding it.<br />
<br />
That's a standard treatment. What's the situation with newer medications?<br />
<br />
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<a href="http://www.clinicalpharmacology.com/apps/images/photo_us/032/camp030t.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.clinicalpharmacology.com/apps/images/photo_us/032/camp030t.jpg" /></a></div>
<br />
<a href="http://www.campath.com/" target="_blank">Alemtuzumab, or Campath</a>, is currently licensed for use in leukaemia. Neurologists have also been prescribing it <a href="http://en.wikipedia.org/wiki/Off-label_use" target="_blank">off label</a> for aggressive multiple sclerosis since a<a href="http://www.touchneurology.com/articles/alemtuzumab-new-efficacy-benchmark-relapsing-remitting-multiple-sclerosis-0" target="_blank"> large, encouraging trial in 1998 and subsequent published trials showing it as superior to other MS treatments</a>.<br />
<br />
It's also considerably cheaper than other MS treatments, at around £2,500 a year per person. Or it was. The manufacturers, <a href="http://www.genzyme.co.uk/" target="_blank">Genzyme</a>, have applied for a license for Campath for the treatment of MS, and <a href="http://www.independent.co.uk/life-style/health-and-families/health-news/exclusive-ms-drug-rebranded--at-up-to-20-times-the-price-8209885.html" target="_blank">are expected to relaunch it</a> at up to 20 times its current price. They have also withdrawn it from off-label use for MS pending approval, <a href="http://www.independent.co.uk/life-style/health-and-families/health-news/exclusive-ms-drug-rebranded--at-up-to-20-times-the-price-8209885.html" target="_blank">on the grounds that</a> "any adverse event outside a clinical trial … may complicate the regulatory process".<br />
<br />
When a medication is licensed for use in the UK, it then has to be reviewed by the <a href="http://www.nice.org.uk/" target="_blank">National Institute of Health and Clinical Excellence (NICE)</a>. NICE has the difficult task of deciding which treatments should be funded by the NHS, to share out the limited amount of cash available. Should it approve the use of an operation that costs, say, £20,000 per person, or a medication for a completely different condition that can treat 50 people for the same amount? What if the operation saves lives, while the medication is for something far less serious?<br />
<br />
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<br />
So, assuming Campath is licensed for use with MS, NICE will have to decide whether the NHS should fund it. If it was still cheaper than existing treatments, with better results, it would be a no-brainer (though of course the risk of side-effects also comes into the equation). But it looks like it's going to cost far more than that.<br />
<br />
We've all seen stories in the newspapers about people denied treatments by NICE, often for cancer. Is Campath going to be another such? MS is progressive: people denied Campath would be at risk of severe disability as a result. And if Campath is approved, what else will be denied?<br />
<br />
These are two examples of big hikes in price. I have no doubt there are others. What these pharmaceutical companies are doing is certainly not illegal, but is it moral? These are existing drugs. There are no additional research and development costs to recoup.<br />
<br />
Big Pharma. Getting bigger every day, and at the expense of sick and disabled people.Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com1tag:blogger.com,1999:blog-6661213178512699086.post-43414475028969229272012-10-25T10:40:00.001+01:002012-10-25T10:40:17.983+01:00Too clean to be healthy? Maybe not.Have you ever had food poisoning? Maybe from a dodgy kebab, or a suspicious curry? We might think that we're only going to get food poisoning in the kind of restaurants that turn up on <a href="http://en.wikipedia.org/wiki/Grimefighters" target="_blank">Grimefighters</a>, but according to the World Health Organisation, around 40% of outbreaks happen in the home.<br />
<br />
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<a href="http://www.hcaentertainment.com/graphics/pics/factual2_pic.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.hcaentertainment.com/graphics/pics/factual2_pic.jpg" /></a></div>
For more than 20 years, the <a href="http://en.wikipedia.org/wiki/Hygiene_hypothesis" target="_blank">hygiene hypothesis</a> has been a dominant theory in immunology. The idea goes that our homes are basically too clean: a lack of early childhood exposure to infectious organisms and parasites increases susceptibility to allergic diseases (and possibly some auto-immune conditions) by suppressing the natural development of the immune system.<br />
<br />
This has been seen to explain both the rise in allergic diseases since industrialisation, and the higher rate of allergic diseases in more developed countries.<br />
<br />
Now a <a href="http://www.lshtm.ac.uk/pressoffice/press_releases/2004/risingallergies.html" target="_blank">new study</a> has challenged this theory. The researchers found that changing exposure to microbes could indeed be a factor in the rise of allergies, but there was no evidence that current cleaning habits are to blame. The authors denied that we are living in super-clean, germ-free homes.<br />
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Recently disinfectant company <a href="http://www.zoflora.co.uk/" target="_blank">Zoflora</a> commissioned a study of 2000 adults from across the UK, looking at their attitudes to home hygiene. 66% of us say our homes are not as clean as they should be, and 19% say they are not clean at all. Just under a third of us are so worried about the cleanliness of our homes that it can keep us awake at night. Many felt anxious, stressed or depressed about having an unclean house.<br />
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Zoflora fragrance and home bacteria expert, Nicola Hobbs says:<br />
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Our homes are fertile breeding grounds for bacteria to grow and multiply. Common microbes found in our houses include ‘superbug’ methicillin - resistant Staphylococcus aureus (MRSA) and bacteria like Campylobacter, a common source of food poisoning. A study commissioned by Zoflora found that a shower head had 300,000 times more bacteria than a set of front door keys – bacteria thrive in warm, damp places. </blockquote>
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Research has shown that flushing a toilet sends a spray of water droplets into the air which may be contaminated with bacteria and viruses, and that these germs can float around in the bathroom for at least two hours after each flush before landing on surfaces. A study of 60 kitchens where raw chicken was prepared found that bacteria were frequently spread around – and that cleaning with detergent and hot water had little effect compared with the cleaning action of a disinfectant.</blockquote>
Cleaning with disinfectant isn't going to make the home completely <a href="http://en.wikipedia.org/wiki/Sterility" target="_blank">sterile</a>. If it did, we'd be dead too. We'll still come into contact with harmless bugs. But we can get rid of real <a href="http://en.wikipedia.org/wiki/Pathogen" target="_blank">pathogens</a> like MRSA, E.coli, Campylobacter, and the flu virus H1N1.<br />
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Using disinfectant as a cleaning product can help you sleep better: you're less likely to stay awake worrying about cleanliness, <b>and </b>you're less likely to be in the loo suffering from food poisoning!Funky Mangohttp://www.blogger.com/profile/12169019858118418939noreply@blogger.com1