>Carnivals, Care and… Superman?

>The next Disability Blog Carnival is on Thursday over at Ryn Tales. And it’s theme is what professionals should know.

The short version is that they should know/realise/understand that disability is not a “one size fits all” experience. In more ways then one. Obviously there are different diagnosis e.g. CP, MS, whatever and there are different types of disability e.g. sensory, mobility etc. But also within diagnosis as well – my experiences of disability are not the same as those of Margo or Amanda or Dave and my experiences of CP are not the same as Shiloh’s or Moo’s or David’s or anyone elses.

So kindly don’t tell me or my parents or anyone else that “people with CP can’t do….” or that “our disabled people do X so Emma WILL do X as well.”

It don’t work like that. I’m not “Cripple who’s name happens to be Emma” but “Emma who happens to be a cripple and have CP.” I’m a person first.

Specifically I wanted to talk about carers like the ones I have come into my flat a few times a week. That’s a “priviledge” I pay for out of my own money and not one I think will be able to continue for too much longer. And it is very useful.

But lately a lot of my care visits have left me going “For the love of GOD people rah rah rah whatever”

I accept that home care is a tough job. Particularly for the people who come to me and do an hour with me, 15 minutes with someone else maybe and half an hour with a third person all throughout the day. They are constantly on the go and they are frequently pushed for time. However I don’t want to be hearing about how much you hate your job/want a new one or whatever every time I see a carer.

I had four visits last week from three different carers – two of them had serious “I hate my job” moans at me. I’m sorry you hate your job or that every single client you’ve had today has asked you to do the same thing I’ve just asked you to and you hate that and your bored. I know after three years or so using the agency that the organisation behind the support can and frequently is somewhat lacking. But what the hell am I supposed to do about it? I’m not about to apologise for needing support and it’s not like I can go “oh well don’t bother to change my bedding, I’ll do it myself.” I CAN’T DO IT.

There was a bit of an organisational problem with the third carer last week (who came to me twice). She was late to me. But give her her due, she just said she was sorry she was late but she had been scheduled 10 minutes traveling time and it was rush hour and she’d been in X place – to which i just “went yeah someone didn’t think about that did they?!” because i’d say it takes longer then 10 minutes here from there not in the rush hour – more like 20+. I then knew she might be late next time and we moved onto the more important topic – of how I was and what did i want doing.

Their time with me is not supposed to be a break. A good while back now (might be two years?) I complained to my care agency over a stupid little thing. A cup of coffee.

But the issue wasn’t the coffee. it was what it represented.

This carer had been to me once, maybe twice before. She walks in and we exchange the usual pleasantries. She wanders over to my fridge and I start to tell her what dinner I want making. At which point in time she pulls out the milk and shuts the fridge walking off again. Pulling a mug out and searching for some coffee in my food cupboard she tells me “Wait a minute, I’m going to make a coffee, did you want one?”

As far as I was concerned she could have her damn cup of coffee and I never said anything to her. But equally I felt that she should ask first because she isn’t “my new best friend” or a family member or whatever. She is here to work and to help me. And the most important thing a carer can do, any professional can do is to respect me. I don’t even go to my friend’s houses and help myself to drinks without asking.

I wouldn’t have said no. I recognise that sometimes people need a drink and if its hot or I think of it I do say “hey help yourself if you want a drink” and my regulars know I don’t mind – but they also respect the fact that it’s my house and it’s polite to ask. It’s the same with things like the loo – if you need to go your welcome to use mine but don’t just disappear and leave me wondering where you are.

Maybe it’s petty for me to say “you can but ask first” about these things but I just think it’s a sign that they respect me and don’t want to take over.

My carer with the “coffee problem” was never sent to me again – I refused to have her back and she has since left the company.

Another thing with carers relates to the not taking over thing but is kind’ve harder to explain. I have regular carers who know me and my routine well and I have people who don’t. My most regular carer knows that I will tell you what i want but also knows what I regularly do want and if I go to answer the phone or have a friend over or something and leave her will get on with the small bits – washing up, sweeping the floor, emptying the bin without being asked but does always check if theres anything else I want.

Choice is huge when there are things you can’t do yourself – for example I can’t change my bedding but I can tell you which clean set I want putting on. It’s another sign of respect and of regaining a little control.

Equally however as much as I advocate for choice and waiting to be asked – if I ask for you to do something generally I expect you to do it all (unless I state otherwise). Even if I don’t tell you specifically to do a certain part of it. Usually because I think it’s obvious that its a part of it.

Example being last week when asking someone to empty the bin. And they just emptied the bin. Didn’t put a fresh bag in and didn’t tie the old one up. And I discovered they’d not tied it by going to move it after they left and spilling the rubbish everywhere. That just annoys me because who empties the bin and doesn’t tie it up?!?! And also it’s a waste because my next carer then had to redo that and not what I wanted her to do.

So basically the best thing that carers could do for me is respect me and realise that I’m an individual. Some use of common sense, however, would also be more than welcome.

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Finally, I am very excited to announce that the carnival after that is on Feb 14th and is HERE at The Life and Times of Emma. It’s theme is Superman.