A year in the life of a scrounger
By Beth Tichborne
**Trigger warning – neglect**
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 touch. There were some shops and a library where you could meet new people and sometimes 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 and they haven’t been properly trained, 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 and talk to you before undressing you. Having your clothes suddenly tugged at makes you jump, so you start to feel nervous all the time. You never get to choose your favourite fleecy jumper by smiling when you touch it. You miss the people from your old house, who had more time, who talked to you before helping you move.
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 touching it to 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, instead of two, 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. While your leg was still hurting your physio session before bed made you scream, 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’. 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, and they 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’re so bored that you start to hurt yourself by hitting your head a lot more often, just to feel something, to see little flashes of light and hear the thud, just to get a few seconds of attention.
You had a life. You had friends, dignity, health, music and dancing, the outdoors, language and poetry, 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 loving 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 this is happening to 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.
That’s 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, 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 again, meet new friends, even learn some new poems, next year.
In fact, a person with profound and multiple learning disabilities would be lucky to have their needs so well met even before the cuts are made. But things are going to get a lot worse for most people. The PMLD network have some good resources on general advocacy, but we need to find a way to advocate as a whole community for the rights of all people with PMLD. This is an issue that affects us all. Not just because anyone might in the future acquire a disability at any level of severity, or have a disabled child (or niece, nephew, or grandchild), but because it’s so simply a matter of human rights and justice.
This piece first appeared at the excellent new blog The Topsoil.