Tuesday, 25 February 2014

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.


Friday, 21 February 2014

Multiple sclerosis and depression

We all feel down sometimes. That's natural, and part of life's rich tapestry.

But sometimes, for some of us, that short-term feeling turns into something much longer-lasting and more profound. Clinical depression 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.


Each year, around 6% of the UK population have an episode of depression, and more than 15% will have an episode during their lifestime.Having a long-term physical illness increases your risk of depression up to about one in three, and NICE have recently issued guidelines for this situation.

Multiple sclerosis, being a long-term condition, follows this pattern. Up to 50% of people with MS experience depression at some point in their lives, and around 20% within each year. People with MS are at 7.5 times the risk of suicide of the general population.. There are several reasons for this:

  • 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.
  • 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.
  • MS can also affect the immune and neuroendocrine systems. For instance, studies have found changes in immune markers in people with MS who are depressed.
  • Depression can be a side-effect of certain drugs, such as the corticosteroids often prescribed for MS relapses.
There is some evidence 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.

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.

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 Samaritans.

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!

Tuesday, 13 August 2013

Twitter and Christian Jessen

You know that Doctor Christian? 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.

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?

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:
  1. Breastfeeding. We all agree that breast is best. If possible. 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!
  2. Feminism. 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 intersectional feminist. 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!
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.

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.

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 you shout at Christian. But there are people who do.)

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?

Monday, 24 June 2013

In which I make the mistake of having an opinion about The Voice and disability.

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.

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.
  • Every video, every link, it was mentioned.
  • 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
  • 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.
  • 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.

So far, so irritating. This was when I made my big mistake. Immediately after the result was announced, I tweeted the following.

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.

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.

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.

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.

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?

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?"

Sunday, 19 May 2013

The Impossible Girl (spoilers) #DoctorWho #Spoonie

Last 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 spoonies, people with long-term illnesses that cause crippling fatigue.

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.

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.

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.

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.

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.

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.

We're the impossible girls and boys. We learn our purpose. We regain control over our lives.

We're spoonies.

Wednesday, 1 May 2013

#BADD Growing Up Beside You

This is Imperial Place, Borehamwood.

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.

OK, I hear you say. But why am I telling you this little anecdote?

Well, he asked me. There were other people around, but he asked me - the woman in the wheelchair. Unless you use a wheelchair yourself, you have no idea how rare this is.

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.

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.

Why does this happen? There has been a tradition of "Othering" 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.

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.

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.)

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.

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.

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!) here.

Monday, 29 April 2013

Multiple Sclerosis Awareness Week #MSAwarenessWeek

MS Awareness Week starts today, 29th April 2013.

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 what multiple sclerosis is and the many ways, often invisible but nonetheless potentially devastating, it can affect us.

This year's awareness week comes with the disturbing news 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.

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.

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.

It's MS Awareness Week. But we have to be aware of MS every day of the year.

For more information on MS, please visit:
MS Society
MS Trust