Doug Paulley's blog

disability, data protection, activism and other such

The Voice of Disabled People?

Posted on by Doug Paulley

Amongst the various other things that annoyed me about yesterday’s shameful treatment of disabled people courtesy of the Lords (et tu, Lib Dems?) was a vomit-inducing self-congratulatory homily by Lord Low, who spearheaded this (admittedly influential) report on the withdrawal of mobility allowance for people in residential care.

Readers may remember that this nasty proposal was born out of invented assumptions that people in residential care have all their mobility needs met by their funding authorities, that they are similar to people in acute hospitals who don’t have mobility needs and (we suspect) due to an assumption that this seldom-heard and severely disempowered group would be unable to defend themselves. Others cynically (though perhaps correctly!) suspected this was the sacrificial clause designed to enable the Government to save face on the remainder of their cripple-kicking, disempowering, undemocratic and lying Bill.

Disabled people were naturally incensed. People from all sorts of backgrounds put in a huge amount of effort to point out the “inaccuracies” in the assumptions inherent in the proposal, and the dramatic negative effect this would have on residents’ lives. Some examples include Bendy Girl’s radio interviews, my oral and written evidence to the Joint Committee on Human Rights (PDF file), and our home’s residents who got our MP to visit to correct his assumptions and to raise our concerns. And these examples are a drop in the ocean compared to the huge amount of effort put in many different ways by a lot of disabled people to make the Government change its mind.

Yet in this extraordinary speech (with supposed false modesty!) Lord Low claims responsibility for the U-turn on behalf of the secretariat (provided by two charities for, not of, disabled people) and the other half for Members of Parliament’s common sense! Shamefully, he made no mention of the work done by disabled people up and down the country to overturn this odious proposal.

There is more joy in heaven over one sinner that repenteth than over 99 just persons who need no repentance. For that reason, I greatly welcome the Government’s decision to drop their proposal to withdraw the mobility component from those living in residential care. I have been given some credit for bringing this about with the review that I was asked to lead by Leonard Cheshire Disability and Mencap, but I think, in all honesty, I must disclaim this. Half of that is because I had a very good team working with me, supported by an extremely able and hard-working secretariat from both organisations; and half because I think Ministers, to their considerable credit, largely came to their decision of their own accord. Perhaps I may have provided a little cover for a U-turn-if so, I am glad to have been of service.

Pass the bucket.

Lord Low, as a disabled person himself, should be ashamed for continuing the traditional disempowerment of disabled people by continuing the enforced misapprehension that they cannot speak for themselves, that their words and actions don’t have power, that other people can more effectively speak for them. His lack of acknowledgement of disabled people’s actions yesterday is a breathtaking rebuff of the Disabled People’s Movement.

I know I shouldn’t be surprised as this sort of behaviour is by no means new. After all, as ex-chief of the Disability Rights Commission Bert Massie says, we shouldn’t expect publicly funded charities that act as proxy providers of public services to bite the hand that feeds them. (I’m looking at you, Leonard Cheshire Disability and Mencap, who provided such vital secretarial support to the Low report.)

He pointed to the “superb” Responsible Reform report – published this week by disabled activists – which accused the government of misleading parliament over disability living allowance reform, as a demonstration of why the voluntary sector’s independence was so important.

He said that any charity that decided it was unable to produce such a report because of the risk of annoying the government had immediately been “compromised” by signing a contract to provide services.

But Lord Low’s speech is such an inexcusable, self-congratulatory, brown-nosing, odious homily to disabled people’s disempowerment, I couldn’t resist this rebuttal.

Unreasonable Residents or Unreasonable Management?

Posted on by Doug Paulley

“Unreasonable” residents

Being in residential care, we often get labelled as “unreasonable”. We get told it’s “unreasonable” to want the toilet at short notice, “unreasonable” to expect assistance to access the community, “unreasonable” to want to get up at a certain time, etc. etc.

Whenever and wherever there’s communal living, and particularly where there’s communal care, there obviously has to be a certain amount of give and take and consideration of other residents to oil the social wheels. But in “care land“, (a different place with apparently very different social rules, norms and expectations from the rest of humanity), there’s a lot more expected. Unreasonably, in my opinion.

Sometimes these are quite extreme – e.g. being told it’s unreasonable to want to go to the toilet instead of using the bed (video, see V Elman’s story), or to have a comfy bed and be able to get out of it occasionally,

One memorable Christmas day, a care worker told me it was “unreasonable” to want a shower. It wasn’t fair on the other residents, as staff should be spending time with them, unwrapping their presents. This last one shows a relatively common element: psychologically blaming residents for being “unreasonable” to other residents.

Today was a minor one – staff strongly implied it was unreasonable of me to get up early so I could go to Church, and that it was particularly unreasonable for me to expect to get up at my own normal pace, as the people who normally get up at that time were waiting and being inconvenienced. (I should immediately point out that of course I didn’t take this lying down [pardon the pun] and that the situation has since been largely resolved; also that whilst my experiences are common it’s worse in other care homes and it’s not all care staff…)

 

Why are residents “unreasonable”?

It’s my experience that residents are branded as being unreasonable for the following main reasons.

  1. For perfectly reasonable behaviour that would be expected outside “careland” e.g. wanting to get up in time to meet commitments, to go to the toilet
  2. For “being unreasonable” as a very understandable reaction to the situation they find themselves in – common example: residents wanting the toilet several times an hour as it’s the only way to get attention or stimulation; residents “playing up” to get a reaction out of boredom or frustration, “challenging behaviour”
  3. For “being unreasonable” / manipulative, as the only way to regain some control in this very disempowering situation e.g. raising the stakes / threatening complaints to the Regulator  so that I can have a shower on Christmas day!
  4. Because they are unreasonable wankers. You get them in all sections of society.
(By the way, in case you were wondering, I think like most people I’ve been every one of the above at various points, though I’d like to think the first is the most common! Some tend to one of the reasons more than others…)
 
 

Scrabbling for resources

What particularly gets me about this situation is that residents are routinely blamed and labelled as “unfair” for daring to use scant resources that other residents need. It is very rare the scarcity of such resources (esp. staff time!) or the management responsible are identified as the culprit!

The illustrious home in which I live (far better than most…) charges £1,000 per week for me to live here. This is based on a costing model assuming I need over 40 hours of care (I use the word advisedly) per week. Anybody who knows me would know that’s ludicrous, I’m fiercely independent and don’t need anything like as much support as they charge for. Yet if I (somehow) were to receive all the care hours paid for, the following would happen:

  • The home would cease to function as a viable unit. Particularly if all the other residents were to get the care they paid for! The total would be several times the actual staff hours employed.
  • I would be accused, once again, of being unreasonable, demanding, and unfair on the other residents.

It does lead reasonable people (and the Council, who are doing an enquiry!) to wonder what, precisely, us residents get for the money.

 

J’accuse!

Given the above, it sticks in my craw that over the years staff and management have accused me many times of being unreasonable, to other service users’ detriment, including:

  • being responsible for another resident attempting suicide through jealousy of the staff attention I receive
  • intimidating and making staff scared of me and my complaints, such that they jump me up the queue above other, less articulate / empowered residents
  • unreasonably disrupting handover and jumping getting-up queues so that I could be up in time to meet voluntary commitments
  • putting my need for the toilet above their need to complete paperwork
  • wanting a bath on another resident’s bath day on returning from a week’s camping.

I could give hundreds of such examples.

I don’t generally think this is the front line care staff’s fault.  In most cases, I find that they are a hard-working, caring lot, doing their best for people whilst working in difficult circumstances, with inadequate facilities / resources / time / staff, huge responsibility, unsociable hours, poor pay and very little recognition. It’s no wonder things occasionally snap.

 

It’s all different in Care Land

But why, in care land, is staff’s inability to meet every residents’ wants or needs reinterpreted by staff (some) and management (some / many) as residents being unreasonably demanding and unfair to other residents? In many other high-paying service industries the Customer is king and customer services would be shocked at any such suggestion being made.

Imagine staying in a hotel charging £1,000 a week. A chambermaid accuses you of being unreasonable and unfair for having a lie-in, delaying her and affecting other residents’ room cleaning services! Reasonable people (and faceless sales droids) might rightly complain at such treatment and perhaps suggest there aren’t enough staff to do the job in a more “reasonable”, customer focussed fashion.

 

Sod that!

Next time staff accuse me of being “unreasonable” or selfish for wanting assistance I may suggest they are being unreasonable by not providing what I’m paying for. In other words, they should take their blaming emotional blackmail and put it where the sun doesn’t shine.

But given the impossible situation the staff are in, I would be being unreasonable…


With grateful thanks as always to Crippen / Dave Lupton Cartoons: www.crippencartoons.co.uk for his wonderful cartoon!

Charity Recipient, Service User, Customer or Resident?

Posted on by Doug Paulley

Dont Assume things about me just cos I live in Care!

Living in a residential home, it’s sometimes difficult to work out quite what “role” I take, particularly in other people’s eyes.

There are various technical difficulties with living in a building registered as a “business”. For example, the Council won’t collect bulky rubbish, and I have previously had difficulty getting some things supplied or delivered (e.g. broadband) as they only supply “residential properties”. The fact that I live here doesn’t always work in a “computer says no” situation.

Perhaps more worrying is the assumptions others make about me because I live in a residential care home. Both the home and I have contacted various organisations to tell them that I deal with my own affairs and have my own phone line – but still, I have yet to persuade the NHS wheelchair repair people and the District Nurses to speak to me direct! They phone the home, assuming the Home run all my affairs.

Some tradespeople assume it’s OK to turn up at their convenience and without notice; over the years, particular failures of this type have been perpetrated by lift service people (cutting it off at no notice) and hoist repair people amongst others. (Though I’m also cognisant that this happens elsewhere!) They seem to assume that as the home is “manned” 24 hours a day it doesn’t matter when they turn up.

Then there was the time the home registered everybody – including me – for a postal vote without asking the residents. I’d rather go to the polling station.

 

“Charitising” fee-paying residents

Whilst frustrating and inconvenient, the above are simply a symptom of a worse disease: assumptions made about people living in homes. I find it most vexing. It’s one level on from the assumptions all disabled people face. I also have to continually fight internalising these assumptions.

Like many homes, particuarly homes for “younger” adults (under 65), the one I’m in claims to encourage personalisation, independence and normalisation; to work against segregation and preconceived ideas about disabled people.

So why is it that there’s a fayre advertised at the home for Saturday, to raise money for a new minibus.? There are huge signs around the town advertising it to all and sundry for the public to come. To me, this fair is about as welcome and appropriate as the proverbial fart in a spacesuit.

I object to the public being invited into my home, my personal space. A few years ago at the fair, I decided to go to bed for the afternoon; but random public opened my bedroom door and wandered in!

I also object to the perception of me and other residents as charity cases. I know my fees are over £1,000 per week to live here. On top of that, we pay 60p per mile for transport in the minibus with a volunteer driver. And that’s just the beginning of my financial objections in this area; let alone the more moral and personal objections.


Sod off, Father Christmas!

It’s nearly as bad as some bloke in a red uniform coming over on Christmas Day, dancing in our living room and giving out shortbread as his self-serving patronising gift to the Tiny Tims. If I’m at home, I hide in my bedroom until he’s gone. It’s not pretty; a 33 year old bloke hiding in his bedroom to avoid Father Christmas.

That’s organised by the well-meaning but misdirected local Lions group. The rest of the year, when we need people to assist residents to get out and about, we don’t see them. It’s pretty stuffed up really.

 

We Live Here

Next time there’s a debate about what to call us – service users, customers,  charity recipients – how about normalising us and calling us residents? You never know it might just start to sink in.

Though I doubt it.

With thanks as always to Dave Lupton / Crippen for his most excellent cartoon. Image courtesy of Crippen / Dave Lupton Cartoons: www crippencartoons.co.uk