My swimming training has been interrupted by this conference. I brought my swimming things, as I had heard that there was a pool here, but it turns out to be roughly the size of a postage stamp. I am going to take some muscle-building early morning jogs instead.

My strategically planned training diet has also been unsettled, as practically everything here is dairy-free, gluten-free, or both (usually both). I don’t know whether I am complying with my official meal plan, as half the time I do not know what I am eating. At snack time this afternoon we were served stodgy squares of some brown goo slathered in a fruity substance that may have been jam but could have been tinned cherries. It was thoughtfully labelled ‘gluten-free’.

“I don’t follow a gluten-free diet!” one person was expostulating as I came down the hallway. “Last year the non-GF people were accused of eating all the gluten-free things, and this year there isn’t anything else to eat. I – “

“Tastes like cardboard,” one person informed me dolefully, watching me select a slice with some trepidation. He was right. Fortunately there was a Traidcraft chocolate stall that allowed me to supply myself in a more satisfactory style. Unfortunately the anonymous offerings in the canteen are making it difficult for me to establish whether I’m eating the right amount of the right things, and I’m relieved to think that I will be back in my own kitchen at the start of next week.

It is the first night of the annual Autscape conference, and I am about to turn into my snuggly bed after a difficult, exhausting, but ultimately rewarding day.

At first sight this conference centre looks just like any other. There is a registration table in the foyer, set out with dozens of name-tags. Then you take a step closer and realise that those name-tags are colour-coded – red for ‘no interaction’, yellow for ‘do not approach unless I have given prior permission for you to interact with me’, green for ‘I would like to socialise but have trouble initiating’, and white for ‘I am able to regulate my own interaction’. By the notepads and pens and other conference paraphernalia are several boxes of multisensory toys – glow sticks, glitter balls, shimmering rainbow torches, strange plastic shapes filled with oozing fluids in vivid colours, multicoloured spinning tops, and innumerable other gadgets. There is also a dedicated sensory room. As you move through the conference centre and read the signs on the doors – library, dining room, Meeting Room One – you see that each room is coded by permitted noise level. I am typing this in a ‘strictly no interaction’ room. Over in the corner, a university academic is happily rocking back and forth with a glitter ball in his hand.

Autscape describes itself as ‘a conference with a difference. Rather than talking to a primarily non-autistic audience about autism, this conference is specifically by and for autistic people. Some of it isn’t even about autism at all! Non-autistic people are also welcome, but the environment and content of the event are centred around autistic peoples’ needs, interests and sensitivities.’

I have used two different-coloured badges since I arrived. When I got here, fresh off a severely delayed and seriously overcrowded train, nervous about being with strange people in a strange place (nerves that the bitemarks on my arms made visible), I reached for the yellow badge. And nobody questioned me. Nobody began the usual spiel: “Vicky, you are so bright and capable! Of course you can talk to people.” My fellow Autscapers just accepted that at this moment in time, I wasn’t able to interact. At suppertime my anxiety levels were still high, but that was OK – I just carried my tray to a no-interaction dinner table and ate facing the wall. Later I began to feel a bit better, and I exchanged my yellow badge for a green one. I joined in a music workshop. I had a conversation with a lovely lady who may have become my latest friend. And that was OK too.

This year the theme is autistic wellbeing. The programme states, “Autism is all too often portrayed as a disease or disorder with only negative aspects. But at Autscape 2010 we would like to discuss, develop and share strategies to both be autistic and be well.” The formal presentations, the workshops, our eating arrangements, our accommodation, our leisure time – they all reflect these principles. You come in here and you don’t feel like a person with ‘special needs’ whom the rest of society is having to accommodate. You come in here as a conference delegate who is here to learn, to advocate, to share knowledge and skills, and to have fun. It’s not an issue if you don’t speak, because that’s normal. It’s not an issue if you rock back and forth and make uncontrollable vocalisations, because that’s normal. It’s not an issue if you don’t understand body language and tone of voice, because that’s normal too.

If you need help with something, you ask, and you get it. No one tells you that you’re too intelligent to need help with that, or makes you feel like a burden if you happen to have higher-level support requirements. People here accept that you know your own needs best, and that those needs may alter depending on how you’re feeling. The approach is creative, respectful, and matter-of-fact.

Why do I mention this on a blog about the ‘Getting it right’ campaign? Because Autscape provides a taste of what life could be like if individual differences are accommodated – and more than accommodated. Appreciated. This is a good kind of world to live in. Nobody dies due to hospital neglect and malpractice when they’re valued like this.

I have heard this question and its variants a few too many times since I got involved with Getting it right.

The answer is, “Why does it matter?”

The answer silences people. They’re uncomfortable to articulate what everyone surely knows: people with severe learning disabilities don’t really have the same quality of life that we have. The dead people in that report must have suffered horribly because of their disabilities. Imagine your whole life spent suffering like that! And that being the case, well, those hospital deaths don’t look quite so much like neglect and more like – well. It’s a complex issue, isn’t it? And everyone is entitled to their opinions on the matter.

The answer is, “Not if your opinions mean that people ‘like that’ cease to be entitled to their own lives.”

Daisy Healey was not a complex issue up for public debate. Daisy Healey was a nine-year-old girl. A person. Like you. She died because her doctors thought that she was worth nothing, and that says a lot more about the doctors and the quality of their ethics than it says about Daisy and the quality of her life. You talk about her suffering and you talk about how horrible it must be to have a severe learning disability. What do you know of her suffering? Were you ever in her head? Or do you just assume that she must have suffered dreadfully because you imagine that you would hate such an existence for yourself?

It’s not about you. But if you’re going to challenge me by saying that I can’t know anything about profound learning disability either, let’s make it about you for a minute. I have an IQ of 155, as measured formally by a clinical psychologist. Very few people have that number of squashed flies flitting about in their head. It’s statistically very unlikely that your IQ even comes close to mine. And in my capacity as a Highly Intelligent Person, I have decided that your life must be beset by awful suffering. How terrible for you, not being possessed of my great brain, my superb abilities, my marvellous quality of life! You haven’t taught yourself Romani linguistics, published an award-winning book, or gone to Oxbridge. Wouldn’t it be better if you were dead, poor thing?

You might respond by telling me that you don’t need to be able to apply linguistic science to Romani dialects, publish award-winning books, or be an Oxbridge graduate in order to have a happy life. You might think that I’m an arrogant judgemental condescending prat for suggesting otherwise, and you’d be right. So why is it OK for you to think about people with learning disabilities in this way? Why should they have to resemble you in some way in order to be happy? And who made you the arbiter of their happiness?

I know all this, and I know something else too. My students and I do share a resemblance where it counts. We’re human. You don’t need to be the brain of Britain to appreciate that. As my dad once said, “They might not be the cleverest people on the planet, but they know when they’re loved.” The capacity for compassion is extraordinarily human, and the people who failed in that were not Daisy, Martin, Kirsty, Emma, Mark, Lisa, Ted, Warren, Tom or any of the other individuals who died as a result of institutionalised discrimination in the NHS. The people who failed in that capacity were their doctors. Intelligent people, every one of them, with prestigious medical degrees to prove it.

People used to call me a retard. Sometimes it still happens, in the street, when my behaviour is a bit odd. Biting your arms and wetting yourself and rocking and flapping and not knowing what to say to people can produce this effect. I used to be ashamed to be called ‘retard’, and all the kinder words that the adults in my life had for my seeming lack of ability – ‘special’, ‘someone who knows her own pace’, ‘different’. It meant the world to me when that psychologist told me I was clever. Finally, I thought to myself, no one will ever call me ‘retard’ or laugh at me again.

Now it’s worth nothing. After Kirsty died, her mother committed her beauty and power to memory as well as her sufferings at the hands of the medics, writing, “Kirsty had a lot of love and understanding for other people, especially other disabled or very sick children.” I’d rather be like Kirsty than one of those doctors. Ultimately they were only able to judge her and find her wanting because we as a society put blind faith in the certificates that hang on their office walls. But being clever is rarely enough to make you right – and having learning disabilities is rarely enough to make you unhappy. Justice, compassion, and happiness go deeper than our abilities. They are something that we can (should) all appreciate.

From the description given by her mum, Kirsty’s life had a quality that all the doctors’ intelligence could never bestow upon theirs. The doctors’ actions (and the question that I have used as the title for this post) put me in mind of the response that deaf-blind Helen Keller gave when she was asked if she considered any disability worse than lack of sight: “Yes. Lack of vision.”

“We cannot speak highly enough of the care Louise received. Doctors and nurses crouched beside the bed to speak to her and to be on her level, despite the fact she didn’t understand them.” – Louise’s mum, writing for Mencap.

The Getting it right campaign has several practical goals that can be read in full here. Louise’s story is a illustration of what healthcare can be like when those goals are met.

She is a 44-year-old woman with a diagnosis of profound and multiple learning disabilities (PMLD). People with the PMLD diagnosis usually have no speech or verbal language at all, and their capacity to learn Makaton or use electronic communication aids is very limited. When Louise was admitted to hospital, she had no way of telling the staff where her pain was or what had gone wrong.

Fortunately, a learning disability nurse was already on the scene. Despite the high levels of stress and pain Louise was experiencing, which she had no means of communicating, doctors and nurses made every effort to find out what was wrong.

Eventually Louise was diagnosed with pneumonia and spent nine days in hospital where she received excellent treatment.

Although the family were asked about resuscitation if Louise’s condition were to deteriorate, at no time did the staff indicate that she was not worth treating the same as anyone else.

It is possible for it to be like this for every patient with a learning disability. Help to make it happen.

 ”Lisa was a strong and beautiful young woman. I remember how she was laughing and smiling even on the way to the operating theatre. I trusted the hospital with my much-loved daughter but they left her fighting for breath and in terrible pain. It was like watching someone drown before your eyes.

I will never forget the awful way she suffered in her last days of life. It’s awful to say, but my dog had a better death than my daughter.” – the mother of Lisa Sharpe.

I was going to post a happy story today. A story of what care can be like when the NHS does get it right and patients with learning disabilities receive the respectful treatment that the rest of us can mostly take for granted. There is one story like that on the Mencap website.

One.

It is the second-newest addition to the list of stories. I will put it up here tomorrow. For today, I’m going to profile the newest story to go up, that of 21-year-old Lisa Sharpe. She died in Basildon University Hospital after a routine operation to insert a feeding tube into her small bowel. Hospital staff insisted that the operation had been a success, even when Lisa began to vomit green bile. They told her mother that this was to be expected.

Nine days later, when Lisa was finally given an X-ray, it was discovered that she had pneumonia. Her family were told that she had two hours to live. Lisa suffered on for three days before she suffocated on the fluid that had built up in her lungs. She was given no pain relief at any point.

She isn’t the first person with a diagnosis of severe learning disability to die in Basildon Hospital:

Beverley Dawkins, Mencap’s national officer for profound and multiple learning disability, said: “Lisa is one of four people with a severe learning disability Mencap knows to have died at Basildon Hospital. The ombudsman’s report is damning – that doctors and nurses failed to provide Lisa with even basic medical and nursing care is unacceptable, and a sign of a wider indifference towards people with a learning disability within the NHS.

She wasn’t the first person. She won’t be the last. And this is why the happy post will have to wait. We can turn away from stories that disturb us just by clicking the ‘x’ in the corner of the browser or closing the newspaper, deciding that we have read enough of that kind of thing. Can’t we hear something positive now? Something better? But for people with learning disabilities, things aren’t getting better; and the fear of their sons and daughters being maltreated or neglected when they go into hospital is something that their families can’t escape from no matter what they do. We will only hear positive stories once we have helped to create them, and that means taking steps to ensure that tragedies like Lisa’s never happen again.

As a regular pool-goer and an astute observer of people, I have drawn up some anthropological classifications based on the behaviour of my fellow swimmers.

Garrulous Gertrude
Moves along at the speed of your average glacier, which is to say not very fast. Favours ill-fitting and brightly coloured bikinis. Tends to swim as part of a shoal. Communication between members of the shoal is near-constant, and centres mainly on soap operas, planned holidays, and the trouble that Anne is having with her daughter. Their language may at first be difficult to decipher due to the high frequency of the sounds.

Dieting Doreen
Shares many cultural and behavioural traits with Garrulous Gertrude, with one profound difference: all conversation is centred on food, weight, calories burned, and the merits of WeightWatchers versus Slimming World. Movement is sporadic and occurs in shoals. Members spend most of their time adrift in the shallow end.

Lane-hog Lauren
Solo swimmer. Routinely occupies lanes marked ‘medium’ despite slowness of movement. Propels herself along with vague and ineffectual sweeps of the arms. Shows irritation when overtaken.

Torpedo Thomas
Also shows a preference for the ‘medium’ lanes, despite swimming at a fast pace and causing severe water disturbance. Shows irritation when other swimmers get in his way. Overtakes aggressively. It has been posited that he swims in medium lanes out of a desire to avoid being second to faster swimmers in the top lanes. Strong sense of pride.

Macho Melvyn
Has characteristics in common with Torpedo Thomas, but lacks TT’s staying power. Will cause annoyance by doing extremely fast front-crawl for approximately five minutes. Typically resorts to breaststroke afterwards, visibly attempting to beat the female swimming in the next lane. When he realises that this will be impossible he exits the pool via the steps in the middle, as if he had always intended to slow down and get out just then.

SAS Steve
Swimming instructor/lifeguard who uses shouting to communicate even when in close proximity to pupils. Favours a tough and military-style approach. Wears extremely short shorts and large quantities of fake tan. Makes regular use of a whistle. (Some scholars have speculated that this may serve as a mating call for female pool personnel.) Attracts attention to himself in any way possible.

I may add more categories as my research progresses. For now I think I have enough material to illustrate my reasons for preferring lakes.

“When our beautiful daughter Kirsty died, like us she still believed that the hospital staff would save her. They failed her and allowed her to die in pain and without dignity.” – Kirsty’s parents, writing for Mencap.

Kirsty was a young girl with a learning disability who died in hospital as a result of ‘significant failings in the care provided to Kirsty’ (the Health Ombudsman’s report). She wasn’t one of the six people featured in the Death by Indifference report, but one of the many people whose stories emerged after the report broke the silence. Those stories are still appearing today, three years on.

The GMC planned a disciplinary hearing but this has never taken place despite continued pressure from Kirsty’s parents and their MP. This has left Kirsty’s parents feeling that, despite the failings identified in the Health Ombudsman report, nobody is being held to account for these failings.

Kirsty died in 2003, aged seventeen. The students we get at the Mencap specialist colleges are typically eighteen or nineteen when they start their courses with us. If Kirsty hadn’t died she might have graduated in 2008 from a college very like this one, travelling by limo to the hotel where her Leavers’ Ball was to be held (just as our graduating students did a couple of weeks ago).

“Kirsty had a lot of love and understanding for other people and especially other disabled or very sick children. She met plenty of them along the way as altogether she had 101 admissions to hospital.” – Kirsty’s parents.

I wish she had had the opportunity. But from the sound of her personality, giving other people like her the opportunity would have been enough to make her happy.

Please join me in helping Mencap to make this possible.

I chose Buttermere after a lot of thought. Two simple reasons made it the perfect lake for a practice swim. For one thing, it’s about two miles long – almost exactly the same length as the course I will follow during the Extra Mile. For another, it doesn’t have anywhere near the same fame as Windermere, Ullswater, and Coniston. No steamers. No rowing boats crowded with overexcited tourists (who can’t row and are apt to catch you a glancing blow with their oars). No people.

Ha. When I reached the head of the lake, I was greeted by a welcoming committee who seemed to have assembled for no other purpose than to watch me strip off and immerse myself in the residue of some glacier. “I will walk to the opposite shore and go from there,” I informed David, my long-suffering friend, chauffeur, lifeguard (not that he’s capable of performing this function), and emergency telephone operator.

“But Vicky, this side is easier. Look, there aren’t as many rocks. What’s the point in going all the way over there?”

“There are trees over there, that’s what. Camouflaging foliage!”

Sighing and muttering in his usual manner, he tripped and slipped over the shingle as I strode determinedly to a more secluded bit of beach.

Several colleagues at work have told me that I’m a very positive person to be around, but as I waded gingerly into the lake I began to wonder whether I might have more positive spirit than sense.

It took me several uncomfortable minutes to immerse myself totally, as the underwater slope is very gradual and it is thick with rocks that hurt my feet. At last I stepped into nothing but water and felt my chest spasm as the cold hit it. The familiar sensation of electricity and adrenaline prickled through my limbs and made them glow. It was icy and it hurt and it was fantastic and it is beautiful and it is one of the most refreshing and exhilarating sensations I know. One more shock of ice as my head went down, and I was swimming.

The continual stream of passers-by on the lakeside did not appear to find the prospect so inviting. There were many hearty shouts of, “You’re brave!” and at least seventeen enquiries after the hydrothermal undercurrents: “Cold, is it? Bit bracing? What do you recken the temperature is?”

Not having thought to stow a thermometer in my swimming costume, I wasn’t able to gratify their curiosity. What is it with British people? If we were caught up in an apocalyptic typhoon we would probably stand around discoursing on the weather. Apart from me, who would be looking for a sheltered place to read. The poems of Sir Walter Scott, most likely. The Lady of the Lake. “Harp of the north! that mouldering long hast hung / On the witch-elm that shades Saint Fillan’s spring…” Eugh, keep your mouth shut. All this water-weed can’t be good for you. And why are you choosing this moment to take a foray into eighteenth-century poetry? Anyone would think you were on the brink of hypothermic delirium. Stop this mental dithering and swim.

Some of the passers-by showed an unusual degree of concern for my welfare. One was a collie dog named Bryn, who came bounding into view just as I rounded a promontory and entered a quiet little cove. I did not welcome the company. “Oh, marvellous. You take me for a giant floating stick, don’t you? You’re going to come in here and – “

But Bryn simply wanted to offer his services as a rescue dog. He scampered up and down the lakeshore, sometimes waiting for me on an outcrop, sometimes shadowing me pace for pace and stroke for stroke. He accompanied me for nearly a mile (occasionally dashing off with an apologetic glance to respond to his owners’ increasingly exasperated whistles, but returning within the minute). Whenever I swam into the shallows, he wagged his tail in encouragement; if I swam farther out, beyond my depth, he barked and would not stop barking until he considered me to be safe again. (His owners told David that he gets quite frantic whenever they take to the water.) Unfortunately I did not get the chance to thank Bryn properly – by the time I got out of the lake I had left all the walkers behind, and I was the only person in a lonely cove.

The air was like warm silk as I stepped out of the water. This is a trick that your mind and body play on you if you have been cold for a long time. It feels like paradise. And you want to wade back in and do it all again.

When I took part in the Great North Swim 2008, it took me an hour and twenty minutes to swim the mile. I was pretty ill on that day and should not have been competing at all, but I pushed my way through it anyway because I have more stubbornness than sense. As I fell further and further behind the other swimmers, my arm strokes making quiet ripples in a pool of cold glimmering sunshine, I wished I could remain in the lake forever and just swim on and on. The race eventually came to its end. I was so weak that I couldn’t get out of the water. I tried to jog up the exit ramp, but I fell over and landed on my knees with a punishing thwack. The crowd oo-ed sympathetically. I smiled in the photographs. I have rarely felt less like smiling in my life.

Yesterday I swam 1.5 miles in an hour. It’s amazing what your body can do for you if you make half an effort to treat it properly.

So, where’s the next lake?

I love being in water, particularly if I’m completely alone. It is one of the most comforting and liberating sensations I know. Sadly I rarely get a swimming pool to myself these days, not now I have left Saudi Arabia. There I used to swim late at night or in the early hours of the morning. I loved floating in the water in the dark, with bats skimming down to take a drink millimetres from my outstretched hands. Here in England I have to be careful when I go to the pool, as sometimes being there feels more like crowd-surfing than swimming. I began to despair of ever finding a stretch of empty water.

Then I realised what lakes are for.

I was going to take part in a two-mile training swim across Derwentwater on Saturday. I can’t any more, as apparently you need to bring your own canoeist to provide safety cover (something that the British Long-Distance Swimming Association needs to make clear on its website, so that people do not spend money on joining the group when they haven’t got the means to participate in any swims). I don’t have a canoe, the money to hire one, or the means to transport one to the lake, and even if I did, any of my friends would render a safety boat most decidedly unsafe. So my open-water training is going to have to be undertaken solo. This is not the safest way to do it, but providing I keep to shallow water I should be all right. I will be heading for the Lake District on Sunday. I will let you know how it goes!

This was written by a friend who works in a special school for children with learning disabilities:

I found out something the other day that makes me so grateful for this campaign and Vicky’s efforts. A student I used to work with was admitted to hospital 4 months ago with stomach ulcers, internal bleeding, recurrent epileptic seizures and episodes of choking. This student has profound and multiple learning disabilities but is,or was, but I’ll come to that later, fully mobile. Because of his conditions, the doctors and nurses at the hospital assumed he was unable to walk. They didn’t bother asking anyone who knew him and both of his parents have very limited contact with him so they couldn’t really help either. Because they assumed that he was unable to walk, they never got him out of his hospital bed until he was discharged 2 weeks ago-now he literally cannot walk or even weight bear because his muscles have wasted away. He is undergoing intensive physiotherapy to try and get him mobile again but the tragedy is he should never have been treated like that in the first place. That’s why this campaign is so important.