Posh food

I don't understand posh food. There, I've said it.

First off, there's the dishes themselves. Picture your typical fine dining menu:

• Quenelles of axminister on a belushi rosti
• Hipster cop three ways with charred lurex, served with a eurovision broth
• Braised largesse with persil ravioli and germolene purée
• Camshaft torte served with a crushing sense of ennui

 Well OK, not quite 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?

And the portions  are always so small. This is the three-course meal cooked by the winner of this year's Mastechef, Saliha Mahmood-Ahmed. Sorry Saliha, I'm sure it's delicious, but I'd be stopping for chips on the way home.

So, posh food. That's why I just don't get you. My offer to accompany anyone who would like to take me to Berares, however, still stands..

Words have power

The Last Leg, that fabulous show, announced its guest for this week's edition a couple of days back - and it's reignited an old controversy.

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 Derek, a series about a man with learning difficulties, which again was widely felt to be insensitive and offensive.

Those of us who have expressed our concerns to The Last Leg'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 previous post here about it, because of the space limitations on Twitter. This post is about something slightly different, though.

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 real disabled people!" Thing is, that's not good enough. And here's why.

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 were talking about real disabled people.

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.

Fatigue #spoonie

How to describe this fatigue?

I'll try. Without hyperbole, and as honestly as I can. These are some of the things I think and feel.

Every limb is made of solid concrete. Moving it even the smallest amount needs all my resources.

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.

Sometimes I hold the sides of my head. The muscles of my neck are too tired to hold my head upright.

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.

I fall asleep when I want to stay awake, and stay awake when I want to sleep.

My dreams are of waking up feeling rested, just once.

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.

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.

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Obstructive 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.

Obstructive sleep apnoea, 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.

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.

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.

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 group of researchers at George Washington University in Washington DC seem to have uncovered it.

Our resting heart rate is maintained at an appropriately low level by a group of parasympathetic neurons 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.

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.

Writing semi-autobiographical fiction about disability #BADD14

This is my post for Blogging Against Disablism Day 2014.

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.

But is writing semi-autobiographical fiction really worthwhile? And can a novel about disability be interesting to a general audience?

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!

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.

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.

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 .

In the end, as Tom Clancy said:

The difference between fiction and reality is that fiction has to make sense.

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.

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.

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!

Connor Sparrowhawk: Death by Indifference

Connor Sparrowhawk was 18 years old. He was loving and much loved. He had learning difficulties, autism and epilepsy.


And he died in the bath at Slade House, an NHS assessment and treatment centre, because he was left unsupervised.

The report 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 independent report into his death has confirmed that his death was completely preventable.

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 half of those with learning disabilities also have epilepsy.

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.

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.

There's only one way to end this post, and that's by showing you Connor - Laughing Boy - as he grew up. Happy. Alive.

#justiceforLB