Inside Out’ (Yorks/Links) 15/10/12




This post focuses on issues discussed on InsideOut (yorks & Links) If you’d like to watch the programme, click here

Who’s going to pay for care when we get old?

This is an issue I’ve covered before, especially from a personal perspective. It’s not just old people who need care, all sorts of people do, myself included. (If you’d like to read some of my experiences, follow this link.)  However, this Monday, InsideOut didn’t mention this even in passing but chose to concentrate on Older people’s mental health, and alternative provision of care. I wasn’t surprised to learn that 1 in 4 older people suffer from depression. These numbers will rise in the coming years due to the impact of financial worries and poorer health, people live longer, and so acquire more health problems. A woman called Christine Cook who suffers from depression says, “I don’t know who I am”.  She talked of losing your identity once you retire. It’s the same for people who can’t work as it is hard to carve out a life in between hospital appointments, fatigue, medication regimes, and so on. These comparisons were not made in the program, so I felt an opportunity was lost. Christine continued by saying that the things she struggles with most is loneliness, money worries and health issues — welcome to my life, too!

The combination of physical disease occurring from old age and mental health difficulties makes it hard to diagnose anxiety and depression because both can have similar physical symptoms. It’s an unknown problem which has been little understood until recent years. Other issues are things like loss of physical function. None of this is news to me, like having to find things to do with your days, or it makes you feel worse. Finding your own solutions was mentioned as well… but I’ve had to do that too, to a certain extent. Not belittling anything their case study person has been through, but none of it sounds like rockets science to me. Time will tell what kind of co-odinated approach comes out of the research and trials covered in the program.

Who will care, and who will pay?

Hartrigg Oaks is an example of care, but not as it’s been done before — a new kind of partnership which takes away responsibility from the state, but the state is hardly facing up to the challenges anyway. The community is a mixture of older people, and younger, older people! The younger people help with maintaining the gardens, and I think, doing some of the care of those who can’t manage any longer, and in so doing earn points which build up and may be used to ‘pay’ for care if and when their health deteriorates. Again it wouldn’t work for everyone, but is worth watching.

Care is a Political minefield, in terms of paying for it, according to David Blunkett. Paying for care without public money is an interesting idea, and the program covered a couple of possible options– home-shares, something called share and care. Iona, and Graham live in Iona’s home. Graham lives rent free, but gives some care, about 10 hours a week looking after the garden, doing the shopping and so forth. Neat idea!! The journalist admits it wouldn’t work for everyone, partly cos there needs to be a specific kind of bond there but it seems to work great for them! Something so niche seems to solve the problem for some people but if it’s not solving care issues for more than just a few there has to be other alternatives.

Blunkett’s talked about Partnership and joined up working; care ring and all those things… these things may sound like gobbledygook for you, but I’m thinking, why is this just focusing on elderly care? The ‘care’ crisis affects many others. CUTS — in rhetoric at least means care has to come from elsewhere but InsideOut’s research shows some interesting solutions. I look forward to seeing what will happen in the long-term but there has to be a cost-effective way of caring for more people otherwise schemes will only reach a select few and the government will end up paying for care anyway. Not even they know how they will pay for it … surely time is running out?

Get ready for work: what woman who needs constant care was told | Society | The Guardian

The Mind boggles:

HOW could an ATOS medical have declared this lady fit for work? It’s just horrifying. Surely she should have been exempt from a medical, having qualified by gaining 15 points on the first question that asks how your disability affects you, or in this case how it affects the person who the benefit is being claimed on behalf of?! Even if that were not the case, one look at Ruth says she’s not capable of work! Here’s the link to the article, and interview with Ruth’s mother:

Get ready for work: what woman who needs constant care was told | Society | The Guardian.

“I am blaming the system that allows people with disability to be targeted, to be made to feel as if they are a burden on society” (Ruth’s mother).

This should NEVER happen again, BUT…

It’s incredibly heartbreaking to watch the video.  Ruth should be betting the best of everything, not being held ransom to unrealistic targets. Anyone with two brain cells can see that surely? Kudos to Ruth’s mother for remaining dignified throughout the interview with the guarding, and for her love and compassion for her daughter. She too, should be helped and supported, not subjected to further demands. How has this government got it SO wrong? I don’t want to say too much more and detract from Ruth’s story. It is one that deserves to be heard, and acted upon urgently so that nothing of this nature happens again. However, I fear the people who most need to listen are the last people who will.

BBC News – Paralympics 2012: How do people view the wheelchair?

BBC News – Paralympics 2012: How do people view the wheelchair?.

I have been meaning to comment on this excellent video for some time now. In the audio John Hockenberry asks a couple of pertinent questions which, while he provides sparking answers, also provide room for debate. The first is this:

Those exact same elements that might put you off are transformed in the Paralympics. Why? 

It is question of identity,  centered around how we see the “other”, those who are different from our perceptions of normal. Also, where we see the person may alter the image, so not just the body, but also the environment. As he says, it is a case of allowing one image, that which our subconscious has been trained by the media, our nurture, and stereotypes to be seen as tragic, we allow to become triumph. This also explains our potential reaction to any of the pictures in the photographic article The 33 most inspiring photos of the Paralympics. (I have also offered my own comment on the images in my previous blog post.)

This would be the case not only for the person or people looking on, but also for the disabled person themselves. How does their disability alter their view of themselves. I can only speak for myself in this. For me, this such a huge question.; From tragedy to triumph. I have partly answered the question before, in explaining how difficult it ws to come to terms with the consequences of major surgery, but this question also applies to how I view myself as a person with cerebral palsy and as an electric wheelchair user. As I explained in the same article, being told I use a wheelchair full-time, for me, really was a tragedy and one I am coming to terms with. In terms of how it affect my self-image, I feel it makes me look somehow vulnerable, in some ways more disabled than I am, as I am able to mobilise a bit.  Both how I view myself, and how others view me depends on which aid I am using, amongst other things. If I use my electric wheelchair, and my environment allows me to use that chair unaided, I have a sense of freedom I do not have at any other time, as I can decide where I want to go, when, and for how long. Put me in my self-propelled wheelchair however, and it’s a different story. Then, I do not have the same freedom. Recently, mu manual chair was being fixed, and I’d gone to a local gym in a taxi with my Zimmer frame, and a carer. After the usual pleasantries, somehow I blurted out how I wouldn’t be so fine after my swim, having had the exertion of walking from the house to the taxi, the taxi into the gym etc. Her response was incredibly thought provoking. She exclaimed in surprise, “Of course, where’s your wheelchair? You looked so natural walking out of the lift that I hadn’t given it a second thought!” This is party about one way of mobilising being normal, and the other, abnormal, natural vs unnatural. Also, somehow on my feet with the Zimmer at least, I feel taller, and don’t look “disabled” as such. That is, until I wobble backwards, or tire, which happens after a few steps. This particular incident has really got me thinking though. With the Zimmer, however I may look more ‘normal’ but I do not have any of the same freedom as I do the majority of the time in my electric wheelchair. I have to be having a ‘good’ day, both in terms of pain and energy levels, and be somewhere “barrier-free”. A different environment, and it’s a different story.

The tragedy… gets trumped by the intent. When you see the athletes using their bodies and equipment, not being used by it, it changes everything.

My electric wheelchair is definitely the mobility aid which allows me to use the most ‘intent’; the wheelchair has a purpose. Like I say, I dictate where I go, without depending on another. I might not have as much leg function as I used to, but it hardly matters in my ‘go faster stripes’ wheelchair! (mine is similar to the one below, although the frame is black rather than this fetching lime green model, and I have extra cushions!)

So, what else does John Hockenberry have to say about the ‘wheeliechair’? He goes on to describe is as “an alternative to walking, not some shameful and inadequate substitute”. WOW. i guess I would find that easier to identify with if I saw a Paralympian such as Hannah Cockroft propelling her chair in the street, than I can use this phrase for myself. It’s  different too, having walked  for the majority of the previous 28 years. However, I have to learn to see myself as the “agent, not the victim”. I’m sorry if this sounds like I’m labouring the same point. I find this video, and the words Hockenberry uses so powerful and transformative, we are participating and whatever caused my disability, or that of anyone I see in the street is “way back there, way back at the starting line!” 

This view of the wheelchair, and other ‘aids’ has the power to turn stereotypes upside down. however, some of this depends on the look of a product, and the design of it, as well as it’s function. An organisation called Enabled by Design, for example, feature reviews of products, ‘specialist’, or not. I have read several articles on the importance of the design of aids and adaptations. These of course cost money, which is what Disability Living Allowance helps to compensate for. They should be just that, something which assists us, and more readily available, as opposed to often prohibitive costs, which would enable more people to be agents, and not victims. It is about more than identity, and the way others view us, but also whether aids are ‘sparkly’ enough! I’m all for sparkly chairs!

I’d love to know what you think of the video, how you view disabled people when you see them in the street, or the design of aids in general.

What’s the difference between ‘free speech’ and the need to prosecute?

BBC News – DPP Keir Starmer on social media prosecutions.

It’s well known that whatever we use technology for, and whatever we type is recorded, whether that be text messages, status updates, tweets. There is so much surveillance and such a need to be careful what we say. There is also obviously a danger, that social media could become stunted somehow if the line were drawn in the wrong place. Here DPP Keir Starmer’s thoughts by clicking on the link above.  I wanted to bring it to people’s attention. I bet it will be today’s ‘hot potato though in terms of ‘new’ news, in amongst the awful things that have happened recently. Would love to know what everyone thinks of this story.

the joys of being ‘cared’ for….

To blog, or not to blog…

I have no idea whether the subject about which I am writing is often blogged about or not. It certainly has an image problem, as Lawrence Clark suggested in his recent blog for the Indy’s notebook. It is also something which concerns all of us. Someone (I can’t remember who) made a comment to me recently about paying their taxes towards it. I much prefer those jokes to news articles shouting about how much it costs (or will cost) the nation in future years. There have also been articles written about problems within the industry, such as the low wages for long, difficult hours, high staff turnover, (3 staff trained partly for my specific needs are about to vanish!) and lack of organisation. As I do not wish to get any person or organisation into trouble (or indeed myself) I shall not name anyone who is currently working ‘with’ me. I say with, because not only do the best ‘carers’ care a lot, there is also, for me a sense of being in something together, and with the very best ones, copious amounts of banter. Take this morning, for example….

Another morning, with another bugger

Carer A is someone I am incredibly fond of because I like them as a person and because of the startlingly good job they do. I shouted through if they wanted the good or bad news, and they said no news … that I should wait while they prepared themselves (for the headlines). Little things, but makes a big difference. I asked them what they would do when they leave, that they would miss me. They wouldn’t be able to tell anyone they were ‘bloody useless’, for example. His reply, that he would ‘find another bugger’. This is how the morning progressed. The difference it makes however, is huge. I am starting the morning with a smile on my face and a giggle in my throat. As opposed to concentrating on the pain or discomfort, or how hungry I am because I started a d-i-e-t today!!

Thankfully, they don’t all move on to better and brighter things…

Carer B is one who is not leaving, with whom I have similar banter, and who is likely in the coming weeks to moan about having too many hours with me because so many others have buggered off. With whom I will have coffee ‘alfresco’ and catch up on our news after her holiday. A cross between a friend and a carer. A difficult tightrope to walk (or wheel). One who I am happy to introduce to my friends and who all my friends love too. I do not think she gets paid nearly enough for the privileged. As she says, she should get paid at least double for the misfortune of working with me!

‘PA’s’ or ‘carers’?!

Another debate is one for disabled people themselves, whether to employ their own PA’s and struggle to find staff or to have a care agency come in, and all the associated pitfalls. Martyn Sibley is a prolific blogger who has written about this same subject. He chose to have PA’s as it gives him more choice and flexibility. In a ideal world, this might be the route I would prefer, but having had PA’s I’d rather at this moment in time not to have to deal with the paperwork, which makes me feel lazy. Actually though, I’d rather use my energy for other things. Which means, I only have flexibility with the better carers, and I only have banter with the best of them … before they leave. Unless they have dependent children, in which case, they need flexible hours and have no choice but to stay.

It doesn’t take a genius to realise that, (to use another cliche) the current government are shooting themselves in the foot. To truly provide for our future needs, we should invest, invest, and invest again… in more pay, better conditions (such as the abolition of ‘zero hours’ contracts) and in better training in order to attract (and keep!) the best staff for the long term. As it is however, carer A is leaving to work in a branch of a well-known pizza restaurant because it pays more money than care work. Honestly, how is that ever right, even in a recession, that pizza makers are valued more highly than care workers?! Surely this perfectly illustrates why we have some of the problems we have? The world and his uncle (or Auntie) has opinions on this subject, and so here are mine! Am off to enjoy my one day without ‘afternoon care’, a ‘sit’ or ‘respite’, whatever-the-heck-you-choose-to-call-it.


26th August 2012

An aside … to do with the leaving of bread(cake) on roof of car…

Carer C and I were playing a game of sorts today trying to come up with all the things she would and wouldn’t miss about our job. She reminded me of one of her highlights! How could I have forgotten that last week, we made bread and the next day I asked her to take however much she wanted with her. That day, as she was leaving, she put the bread on the car roof before she got in the car… only for some local teenagers to stop her and yell about the ‘cake’ on the car roof. She said the look on their faces is one she’ll never forget. This story is one I’ll never forget. I have as much banter with Carer C as I do the others… and I will miss her much *sob*