Coping with dependency

At least De had the grace not to say “i told you so, Jane”. But i’d have deserved it if she had.

De has suffered a lot lately in her personal life and i wish i could be there for her a little more. Sadfly distance makes that difficult.

On the other hand, she, too, is strong: not only living with a number of major impairments, but dragging her arse out of bed and campaigning for the rights of disabled people. I’ve learnt a lot from her over the last few years: but sometimes experience is an even better teacher.

First dependent experiences

On my back, in hospital, for four days, i worked out that there had to be better ways to sort some stuff out – and that whilst simple solutions sometimes worked very well, simple thoughtlessness (like clipping my alarm buzzer to the wall behind me) could cause major grief.

Fast forward to the journey home from hospital, which was five hours of nagging pain..

At Sainsbury, near Stevenage, andrea nipped in and returned with a wheelchair. Yay! Result. Except now i had to deal with the fact that wheeling me round is embarrassing to her and she covers embarrassment with a degree of dark and, in this context, very unwanted humour. First we bounced across the pot-holed crossing: then bumped the kerb. Each and every jolt sent pain arcing through my body.

We didn’t cross the kerb first time so: “why don’t i take a run at it and bounce you over?” she suggested brightly. No way! i protested. Luckily, i never found out if she was serious, as two helpful passers-by suggested she turn me round and back over the kerb. Phew!

Inside the store, i tried to sort out what needed sorting, and found myself instantly bridling at the way she simply assumed the right to move me on or round whether i asked or not.

First outright discrimination?

At least we got a chair at Sainsbury’s. Stopping an hour earlier at South Mimms Services i crossed the forecourt. That was more than enough for me, so i approached a member of staff: “I’m just out of hospital, in pain: it hurts me to walk. Do you have a wheelchair?”

Her response was dismissive. She didn’t know, didn’t really want to help. I tried again: “could you ask a manager?”

Sure: she pointed to a young woman haring across the floor about four times faster than anything i could manage: “go and ask her”.

Er, no. The clue, i pointd out, is in the bit where i said it “hurts to walk”. Grudgingly, she brought the manager over – and she in turn was equally dismissive. No wheelchairs: sorry.

Now, i have since spoken to the management of Welcome Services Ltd and they were horrified by this. They tell me that this was simply wrong. They do hold wheelchairs at their facilities – unless some twonk has half-inched them (not quite what they said officially, but the gist was clear) – and had i asked the right person, i’d have been properly helped. They have apologised unreservedly, which is brilliant.

Basically, i almost certainly looked a tad wild and spoke strained (both because of the pain) and the women i spoke with probably pigeon-holed me as slightly weird and best got off their hands as quickly as poss. Discrimination? Or just plain thoughtless? And is there a difference?

Care and Control

There have been a few other choice epithets (on my part) over the last few days. I know what i need to do, care-wise, and i’m doing it: even when it hurts.

As andrea freely admits: she isn’t very good at this modern nursing thing. She’d have got on with Florence Nightingale: basically, patients regimented in their beds and doing as they were told. None of this listening nonsense, or letting patients find their own solution.

So, in another echo from giving birth, i’ve been pushing and dilating and bleeding and generally cursing in pain at various times…whilst she has sat on the sidelines and muttered things like: “remember you’re meant to breathe through this, jane”.

My response is not dissimilar to the response she gave her own partner during her first childbirth. It consists of two words, of which one begins with “F”.

Its not entirely her fault. If you’ve not been taught how to care, you maybe don’t understand how there is care and there is imposition. Talking to De, our conversation neatly joins up with a proposal by Manchester Council to push care back to an informal basis.

It hasn’t taken me long at all to realise how appalling such an idea is. Give people who need care the right to buy and control their own care and you give them control and dignity: take it away, and you strip them of both. Sorry, De: can’t be up in Manchester demonstrating with you for a bit. But i definitely get it.

jane
xx

2 Responses so far »

  1. 1

    kathz said,

    Sounds like things are horrid just now – I hope you’re over the nasty bit soon.

    I’m not sure that giving individuals the right to buy and control their own care as individuals always works, though it’s better than informal dependency. I may, however, be arguing with rhetoric rather than the proposal. Where I live (Notts) there’s a proposal to take away lots of the valued daycare services and give people the supposed power to buy and conrtol their own care as individuals. Of course, what this reduces is collective support and – most importantly – pressure on the council and service providers. There’s been a couple of big campaigns by the people who use the centres saying it’s the centres that they want with the social elements and such aspects as education and advice (often informally provided by care-users themselves or given free of charge by people from outside organisations). The individualisation of services risks reducing the power of many who receive them. This might not be the case for you, as you’re articulate, confident and have a public presence but this is true of very few people. Most people need to go beyond individual rights to a situation where it’s made easy for them to talk to others in similar circumstances.

    Sorry if that’s a bit off the point but I think it does relate to the question of how people take control of their lives and maintain dignity.

    • 2

      janefae said,

      no: this is absolutely on topic, as the conflict between personal autonomy and how care is administered formally vs. informally has been top of mind given a) my experience and b) a current proposal in manchester to remove the formal aspect from current care packages.

      jane
      xx


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