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Profound and Multiple Learning Disabilities

Imagine that you're put into a minibus one day and moved to a new house, in a new town, where you

don't know anyone. Sometimes strange things like this happen to you, so you wait quietly for a while,

and hope that it will start to make sense. In your old house you sometimes went out for walks, so you

knew that there was a garden outside with plants to smell, then a park with ropes and bars that you

could hold and bang, and then some shops and a library where you could meet new people andsometimes buy sweets. You wait for days in your new house for someone to take you for a walk, but it

never happens. You don't understand where you are. You don't know if the park and the shops are still

nearby.

All of your friends have disappeared, and the people who look after you now don't understand you.

They're busy, they put your bed supports in the wrong place because they're in a rush, so your arm

goes numb and you get a rash on your face from dribbling. You can't see very well, so you like to be

warned before anything happens. But most of these new people never remember to touch your arms

 before undressing you. Having your clothes suddenly tugged at makes you jump, so you start to feel

nervous all the time. You miss the people from your old house, who had more time, who talked to you

 before moving you.

You don't like the food here either, it seems as if someone different is helping you every day, and they

shove the spoon into your mouth without tapping it on your lip first. There isn't time to smell the food

 before it's in your mouth, so you don't know what it is, even whether it's sweet or savoury. Once it

was very hot and burnt your tongue. You start to refuse food and to be sick after meals. You're hungry,

lonely and scared, so you cry a lot.

 No one here has time to find out what music you like, someone sticks on a loud annoying CD, the

same one, over and over again, and it gives you a headache, and no one ever dances or sings along

with you. Because you cry so much now no one thinks to check if your pad needs changing, unless

there's a smell. You're used to having your pad changed and sitting on the toilet after lunch, and could

control your bladder, some of the time. No one knows that here, and you forget that you could ever do

that. Only one person helps to change you now, and that means things don't get done the proper way.

Your leg got twisted, your arms get banged and you start to feel scared of the bathroom. When your 

leg was hurt your physio session before bed made you cry, and now there isn't any physio any more.

Your toes curl up tighter and the muscles change shape. Your boots aren't comfortable and your skin

gets itchy. You can't support yourself at all for transfers now.

At your old house you could communicate: through touch, through rhythm, through objects of 

reference that meant 'bathroom', 'bed' or 'mealtime', and with your different laughs, it was all written

down in a little book by one of your friends there, and they showed it to you and read it aloud, andthey gave you the bag with your objects of reference in to hold, so that you'd feel safe about coming

here. But that book got lost on the first day, and nobody here knows how to talk to you, or how to

listen, and they don't have time to find out. They think your objects of reference are toys, so they got

mixed in with everyone else's stuff, and you're forgetting what they meant.

At your old house you liked jokes. You had friends who told jokes by tapping a rhythm then changing

it. You told jokes by dropping an object and laughing while someone stamped around your chair 

moaning and groaning to pick it up. You liked words like “moaning and groaning” and you

recognised your favourite poems, joining in with the chorus. But now you can't do these things. You

can't tap rhythms by yourself, or remember a poem in your head, and no one can appreciate a joke all

 by themselves.

You had a life. You had friends, dignity, health, music and dancing, the outdoors, language and poetry,

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and lots of laughter. Now that's gone. You don't know that you're one of hundreds of people that this

happened to in 2011. Some, like you, were moved from care homes where they'd lived for years to

cheaper, private, care homes with inadequate staffing levels. Some left their parents' homes because

their Mums and Dads received less and less support until they reached the point where they couldn't

go on any more. Some left long term foster carers for the same reasons. Some lived where they'd

always lived, but had their mobility allowance cut, saw one-to-one time disappear, and lost friends

through a rising staff turnover rate. You can't come together with these other people and make your needs known as a group, and you don't understand why this has happened to you. You can't start an

online petition or a facebook group, call a meeting, lobby your MP and march on Westminster waving

 placards.

And that's precisely why they chose you. Your voice is the hardest to hear, to most people it sounds

like meaningless noise, random crying and shouting. That's why you're the first to feel what the cuts

really mean, that they mean poverty, social exclusion, inadequate medical provision, increased

inequality and silencing the voices of the vulnerable. It's ok for you to feel that, because you don't

understand why and you can't tell anyone how. You're a 'scrounger', a 'drain' on a public purse that

isn't bottomless, you somehow caused the deficit and you're going to pay for it.

Unless hundreds of other people shout with you. Unless hundreds of people get involved who can

start online petitions and facebook groups, call meetings, lobby MPs and march on Westminster,

 protest outside Atos offices, heckle at public meetings, hand out leaflets in the streets, write to their 

local papers, and demand that human rights are upheld. If that happens then life might get better 

again, you might leave the house, meet new friends, even learn new poems, next year.