The case of ‘Ashley’ has so far mainly been framed in terms of her as a disabled American child and the radical ‘treatment’ she has received. But she offers a case study of immense significance for many more issues. These range from our understandings and responses to caring, parenting, childhood, impairment, intellectual ability, love, abuse, medical science, clinical ethics and, perhaps most of all, the nature of American and perhaps western societies more generally.
Other key words we will encounter here are ‘pillow angel’ and the ‘Ashley Treatment’.
The story so far is of a nine year old girl child, who according to her father’s blog. did not develop ‘mental and motor faculties’ after a ‘normal’ birth.
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At the same time, Dad tells us that she is alert and aware of her environment, seems to make deliberate movements, can express delight, appears to watch TV and ‘loves music’.
As many readers will already know, Ashley has had major medical and surgical interventions.
Two years ago, she had a hysterectomy, *** bud removal and appendectomy. The aim has been to prevent the onset of adolescence, the growth of breasts ‘(‘there is a family history of large breasts’) and to maintain her at a size where she is more manageable for her ‘caregivers’ and it is felt less liable to encounter potential sexual abuse.
Ashley’s father is obviously surprised and shocked at the ‘violence’ of the negative criticism that the ‘Ashley treatment’ has received.
He dismisses it as emotional ‘gut reactions’. He wants to avoid ‘philosophical debates about what we did or why we did it’. Why?
Why is he surprised? How can there not be such discussion?
I can imagine her father’s blog being read and reread like a piece of scripture as people try to decode it; work out its underlying meaning, try to make sense of it and get what they particularly want from it.
I have found it difficult and painful to read. I am left asking: Who is Ashley? What and who is she being seen as for.
Dad explains that Ashley ‘brings a lot of love to our family and is a bonding factor in our relationship’. Is that what children are for? Is that their primary role?
He tells us that she offers a ‘powerful connection with her pure, innocent and angelic spirit’. How would that have fared as a teenager? How do her siblings match up on the innocence and angel stakes?
Ashley, father says, that ‘if there is a prize for those who have the record of how often they are told “I love you”’, then ‘pillow angels’ like Ashley ‘will win it effortlessly’.
We have heard that Ashley has the intellectual development of a baby. For years we have heard medicos frame the perceptions, emotions and understandings of people with learning difficulties in terms of a childish ‘mental age’.
We might have hoped that this inappropriate, crude and unproven yardstick would have passed into history in a twenty first century world of medical science. Not so apparently. Medical research, which so determinedly seeks to prove detail ‘scientifically’, is still it would seem, content to rely on the crudest and most judgemental of underpinning conceptual constructs.
Much of the discussion about Ashley, both from her father and his supporters, is based on predictive assumptions. It rests on beliefs about how she will be; what she will be capable of, what she be like, what she might encounter. We know that doctors and other clinicians are notoriously inaccurate over such assumptions; generally overstating the likelihood of early death and underestimating people’s actual abilities and capacity.
Why wouldn’t they be? It’s not where their expertise lies.
But of course Ashley is about much more than the infantilisation of people with learning difficulties and other impairments – a common phenomenon in our society.
It goes a critical step further. It is about medical engineering to stop people growing up and becoming who they might be. This is Peter Panism made medical intervention and potentially public policy.
Already others are coming forward saying they would like the ‘Ashley treatment’ for their disabled offspring.
There must be the broadest discussion about this development. The voice of disabled people must be central to such discussion.
Who has a right to talk about life and the quality of life of people with impairments more than those with related experience? (check out ; the and the .
We must also connect this discussion to broader issues of parenting and childhood.
An image that has pushed itself to the front of my mind as I have forced myself to read about Ashley’s externally imposed permanent childhood, is that of the tiny tots, made up, dressed up and sexualised for those childhood beauty pageants that became a feature of US society. Are these weird extremes opposite sides of the same coin of America’s manipulation of and lack of comfort with its children and childhood? When I hear words like angel and innocence used about children, I worry.
We in the UK know too much about the parallel demonising of children and young people by adults, media and politicians. Adults should not try and resolve their own difficulties over childhood and impairment by trying to recreate both in some fantasy image of their own. I want to make an announcement.
I wish to announce a new award. There have never been so many book awards and prizes. There’s the Nestle Children’s Book Prize, The Booker Prize, the Whitbread Book Awards (now the Costa awards), the Orange Prize for Fiction and many more - let along the Pulitzer and Nobel prizes for literature.
I’m a member of libraries – I’ve even written and reviewed books myself. And, bottom line, if you can’t live your fantasies on a Blog, where can you live them? So on this basis I have decided to inaugurate the Peter Prize (no false modesty here and we aren’t talking pie manufacturers) This is intended for really terrific books in the general field of social care.
The criteria for this award, I have decided, are outstanding publications that are likely to be of actual use and interest to social care service users and practitioners as well as the rest of us; which are likely to contribute to improved understanding, education and practice. I am also thinking of books that give space to and value the views of people on the receiving end. That’s because these have traditionally been the most neglected perspectives.
I have to tell readers, that this process of judging book awards is an arduous one (Just to be clear, in this award I am sponsor, judge and jury). I think I now know how fairy tale princesses must feel. You have to kiss an awful lot of frogs to find a prince.
I can’t tell you how many boring, badly written, irrelevant and unhelpful social care books I have had to read this year. They seem particularly to be written by people whose actual close-up knowledge of social care is either limited, second hand, or from a long time ago. I feel even more for social work students than I have before.
This is what so often they are told to read!
Anyway I have managed by dint of much reading, reflection and cups of tea, to whittle down my list to two nominations for 2006. Now I want to get serious.
The first of these books is, , edited by Suzanne Sjöqvist*.
What is exceptional about this book is that it offers the accounts of children and young people themselves about the loss of parents. This is a book which includes deaths due to natural causes, accidents, suicide and murder.
It tells important truths in the clear direct voices of those children and young people themselves, aged from one upwards. It is a brave book, full of complexity, that like the children and young people themselves, doesn’t duck the painful and difficult issues it explores. It is a book helpfully to be read by adults and children alike.
Yet again it confirms that children know and understand much more than adults tend to give them credit for and all the more for that, need support, understanding and being listening to.
This book brings together the accounts of more than 50 people aged from six to 56 who have been transracially adopted. It does not duck the big personal or the political issues that this issue raises.
There are no simple answers in its pages. If there is one commitment it is to truth and complex human understanding. Crude ideology is something we are better able to challenge because of this book and the accounts it contains, rather than something it perpetuates.
One of the worst indictments it offers is that despite the profile this issue has gained through its treatment as a political football, ‘the experiences of transracially adopted people themselves remain marginal’. The opening quotation from the poet Lemn Sissay tells us what to expect:
Here is a book to help all of us, concerned with truth telling and the bearing of witness.
So indeed are both these books, and outstanding examples of their genre they both are.
Both should be on every social care book shelf. I am grateful that I have come across them.
This is where I am going to cop out though – or perhaps not.
I’ve never been very keen on competitions. These books are both invaluable, both exceptional. I am going to award this new prize to BOTH of them***.
I hope in some tiny way this will help them reach more people and further validate the wonderful philosophy underpinning them both.
* Suzanne Sjöqvist, (editor), (2006), Still Here with Me: Teenagers and children on losing a parent, translated by Margaret Myers, London, Jessica Kingsley Publishers, £13.99.
** Perlita Harris, (editor), (2006), In Search Of Belonging: Reflections by transracially adopted people, London, BAAF (British Association for Adoption and Fostering), £17.95.
*** Unfortunately, owing to my own limited financial circumstances, no monetary reward is attached to this prize.
But if I were to win the lottery…..
A new Bill to extend controls on mental health service users was announced in the Queen’s speech.
Has there ever been a law which has been pursued for so long in the face of so much determined and united opposition and which is so widely predicted to fail on both practical and moral grounds? Yet this is the position of the government’s proposed mental health legislation. The government’s own advisers have highlighted the resource problems of such new legislation, mental health service users and practitioners have evidenced the practical problems it can be expected to create.
Church, charitable and civil rights organisations have all made clear the ethical failings of such legislation. ( )
Despite all these counter arguments, the government, even after changing its own mind, has now again decided it must go for new legislation which is primarily concerned with the restriction of people’s rights, rather than the improvement of mental health policy and provision.
Surely not since Field Marshall Haig on the western front in the first world war insisted on sending soldiers over the top again and again in the face of unbelievable casualties, has there been such a case of the powers that be closing their eyes to every dictum of good sense.
The resurrection of this Bill brings to mind ‘the living dead’ of horror films, which despite every obstacle placed in their way, every effort to return them to rest, march on regardless, without sense or feeling.
New Labour first made clear even before it was elected (notably, in the Sun Newspaper), that it wanted greater controls imposed on mental health service users. Since then it has single mindedly pursued such legislation for nearly nine years, always getting back the same virtually unanimous message despite the repeated changes in detail it has made.
But its proposals will not work. They will draw more service users inappropriately into the controlling provisions of mental health. They will have damaging effects on many more service users by encouraging them to keep away from the support they may need.
The reality – as inquiry report after inquiry report has highlighted – is that the problem is not one arising from lack of regulatory provisions. Instead it is simply one following from not implementing the legislation and guidance that already exists properly. Both the culture and the funding for positively addressing risk and rights are still seriously lacking in mental health.
We don’t need new sanctions or new laws. We need adequately resourced, properly coordinated and communicating mental health policy and provision which responds rapidly and effectively when individuals say they feel the onset of a problem – as so often they do - and which preserves their safety and that of other people.
This new move may get approval ratings from the Sun and Daily Mail.
It may carry populist clout with the crude loud voices always calling for people ‘to be locked up’. Not only do I doubt that this new Bill will save a single life. It is also likely to cost many more as the real issue of providing suitable and adequate support for the tens of thousands of mental health service users who can’t currently rely on receiving it, is once again put on the political backburner, as the headline machine creates yet another costly diversion.
Like a lot of mental health service users, I have difficulties sleeping. Those long hours in the middle of the night can sometimes seem like a never-ending wasteland. Tossing and turning, trying to lie still.
Trying getting up, having a herbal tea and reading a book: these are all part of the process. For a long time now, I’ve been in the habit of putting my earphones on when I first wake up and switching on my walkman. It either helps lulls me away or it’s something to do.
This is where I come to problems of ‘choice’.
Choice is currently a buzz word in western societies like the UK. To have choice is presented as all and we are repeatedly told how much choice we have.
Not when it comes to early hours radio I’d suggest. The sole choices for me are the BBC World Service and Radio Five Live. Despite the jingles, I tend to settle for Radio Five Live – which means I’ve come to know .
Two nights a week or more he presents Up All Night. I don’t know if it is true of all 24 hour radio stations, but from my experience Five Live is best in the night – and with Dotun’s show there’s a truly international flavour, items from all over the world, not least the brilliant South American football phone-in and lots from Africa - always a valuable corrective to conventional media stereotyping.
These programmes are full of phone-ins. What always amazes and impresses me about Dotun is the absolute sincerity and interest he seems to show when he is talking to callers. Maybe it’s just a brilliant disguise, but from having heard so many presenters and DJs, I have to say Dotun does seem to be a case of what you hear is what you are really getting.
I’ve got another clue to this because my partner was once the resident expert when Dotun did a phone-in for another radio channel and she commented on his sensitivity and understanding with the people involved.
The other night for the first time I heard Dotun’s radio phone in on mental health issues. Ok, there was the compulsory psychiatrist (doing the best he could within the medical model), but there was also Lee, a service user and a really positive and supportive atmosphere which was clearly communicating itself to the people who as a result seemed able to phone in.
This included service users to whom the heaviest diagnostic labels had been applied, with difficult lives and difficult experiences. The programme seemed helpful to them, but also for many more of us, because at the heart of it was the sense that this is something that may happen to any of us, which needs to be understood accordingly.
Dotun ended by saying that he hoped the time for the phone-in could be extended from an hour to ninety minutes.
I hope so too. If the stigma, exclusion and misunderstanding that are central to the lives of many mental health service users are to be challenged, then serious discussion about mental health issues needs to be got into the mainstream. This is one helpful example of how it can be.
I realise not all listeners are as enthusiastic as I am about Dotun Adebayo. One comment that can be googled is that he must be . Well, we are all entitled to our opinion, but as far as I am concerned, he is very much part of that positive community that exists out there in the airwaves which can be a support for all of us; mental health service users and the rest.
Thanks Dotun and please don’t give up the night job.
I have long found myself fascinated by the everyday, the ordinary, the mundane. It is these routine things that that I find myself most pensive about rather than those ‘meaning of life questions’ that seem to preoccupy philosophers and newspaper columnists. Thus my mind has been set swirling by the marriage of our daughter Esther last Saturday. It’s made me think intensely about my own relationship with my partner, the changing role and nature of marriage in societies like ours, the lives of Esther and her husband Tom and all the ritual and ceremonial attached to marriage.
We read more and more about the enormous cost of weddings nowadays; choices being made between an elaborate occasion or a deposit on a house, and ordinary couples emulating celebrities in the extravagant ends they go to.
Yet we also know that if truth be told, it is just one day and that there is only so much that can helpfully be invested in it. Esther and Tom opted for a modest and inexpensive occasion, but one with all the warmth and affection to be hoped for.
The service was held in Leeds where they live, at the New Testament Church of God.
The Voices In Praise Choir gave it energy and excitement with their gospel singing and Pastor Bailey led the service. There was clapping and cheers and a real sense of knowledge of and care for the couple in the Reverend Bailey’s address. This was a day of the old and the new.
So it was roast beef and vegetarian option for lunch, but at an organic restaurant with a veil bought on Ebay and the bridegroom wearing (new) blue jeans.
Having talked to friends and mugging up on books about father of the bride speeches and the rest, I’ve learned more about modern wedding ceremonial and some of it has been really encouraging.
Fathers no longer have to make the speech. It can be mums or significant others. As the family has become more complex and the nuclear family’s dominance challenged, custom has changed too.
One friend told me how a gay brother had given the bride away because that’s what she really wanted.
Esther and Tom had a one day honeymoon in York, while we looked after their two little boys, Mattie and Charlie. On the Monday following, Esther started the MA social work course at Leeds Metropolitan University and the two of them put in place their complex and costly new child care arrangements.
They haven’t got a lot of money. They have already had struggles and can expect more to come. It’s an everyday story of life for young people in UK PLC.
Sitting in their front room after the event, with their little boys, I could only feel proud of them and all those other people setting out on life’s journey together, whether informally, through marriage or civil partnership. This is indeed, as the Pastor said, a harsh and unremitting world and all our efforts to join with each other in support and love represent a powerful and life-enhancing challenge to that enduring reality.
I have just been reading the latest issue of Coalition, the magazine of the .
Reading it has cheered me up. Coalition must be one of the truest voices of disabled people and service users. It has also long been an important and influential voice.
It is honest, clear, sharp, critical and also witty, ironic and fun. There is the usual mixture of reviews, news items, cartoons, readers’ letters and articles. There is an important article in this August issue by Mike Oliver and Colin Barnes, stalwarts of disability debate and the disabled people’s movement: Disability Politics And The Disability Movement In Britain: Where did it all go wrong?
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The article charts some of the successes but also the major problems now facing the disabled people’s movement in Britain and offers proposals for a reinvigorated future. As the authors rightly highlight, these are complex times for disabled people, service users and their organisations.
On the one hand, there appear to be major gains, with new legislation, new rights and new rhetoric for service users. On the other, we have to ask ourselves how much has the ordinary disabled person’s and service user’s life actually improved in recent years and what is the actual state of service users’ own organisations. We might especially ask how much there has been such improvement for groups known to face particular oppressions and exclusions, like black and minority ethnic service users, older disabled people, people who communicate differently and the many thousands still living in institutions or whose home life is being institutionalised through the shortcomings of domiciliary care.
This is clearly a time of major reflection among disability commentators and disabled people more generally. , the well known disabled academic and comedian’s high profile new book has also just been published this month. The publisher warns us to expect controversy and the challenging of orthodoxies in British disability studies.
Later this month the biennial International Disability Studies Association Conference takes place at Lancaster University (18-20 September). Discussion there is likely to be lively and contentious.
Big issues about disability are now being debated.
What we must hope is that there is the broadest possible involvement in such discussions, now that there seems to be a general taking stock of disability thinking, theory, strategy, policy and practice. This isn’t just a subject of academic importance. It is likely fundamentally to affect the current lives of disabled people and of disabled people as yet unborn.
Such discussion therefore needs to involve the widest range of disabled people and service users, ensuring that the many key stakeholders with concerns here have a chance to contribute.
Coalition can feel proud of its strong tradition of supporting such grassroots discussion. Let’s hope Coalition becomes an even higher profile element in public and professional debate.
It should be essential reading for all social care and health professionals and a required journal on professional education and training courses. And don’t forget, it’s also a good read! Regular readers of this Blog may remember that on 21 November last year I wrote about Ian Walter’s magnificent nine foot high statue of Nelson Mandela and the controversy surrounding it being sited in
Sadly Ian died from cancer on 3 August this year. Happily he had finished the statue before he died.
Ian was 76 when he died, but I’d always assumed he would live much longer. Not only was he a fit man with the strong hands and physique that came from a lifetime’s manual labour as a sculptor, but his was an exceptionally long lived family. Both his parents lived into their nineties.
I always expected that the same would be true for Ian. But we should never make assumptions. Although many of us might be grateful for the three score and ten plus that Ian achieved, for me it has felt like a life cut short.
I’ve known Ian for a long time as a friend and neighbour, but for all that, I have been taken aback at the impact his death has had on me. His life and death also challenge many conventional ageist assumptions about what is old and what older people can contribute. Recognition did not come early to Ian.
As his wife Yolande put it, when he was younger ‘he cast his bread upon the waters’ – that is to say, he developed a body of work not because he had buyers, but because he thought it was important. His work focused on social justice, social movements and challenges to inequality, oppression and discrimination – and the leaders who symbolized them and made a difference. Thus his portraiture included heroes and heroines of socialism, trade unionism, feminism, civil rights and anti-apartheid.
As he grew older, so recognition and commissions began to come – which makes his loss especially sad. Tony Benn, one of his sitters, in his Guardian obituary (August 18) described Ian as ‘one of the greatest sculptors of his day’. It is both his committed principles and artistic strength which justify this judgement.
I just wish that Ian had had more time to take closer to completion the progressive project that guided his life and career.
Yet even though he is no longer with us in the flesh, there is much still to come. It looks as though his Mandela statue will find a place in
He had just completed a bust of the astrophysicist Stephen Hawking and other work he had done will spread the word as it is recast and finds new homes internationally.
I am proud to have known Ian as a friend who was warm and reliable. He was both a source of inspiration and someone you could turn to for help.
He helped keep our old car going and looked after my vintage BSA motorbike before it was ready to go on the road. As Tony Benn said:
Ian was a great artist, a lovely man…Immortality for him means that his work will be known long after the speeches of those he portrayed are yellowing, unread in the public libraries. Social care never stops.
It’s a 24/7 world for both service users and workers. It’s of both great personal and professional interest to me - something I find myself thinking about on and off duty. Nonetheless, a change in vantage point offers some fresh insights on the subject.
I’ve just spent a great day by the sea at Great Yarmouth in Norfolk. If North Norfolk is somewhere that the English comfortably-off go to for holiday homes and summer breaks, then Yarmouth is the South Norfolk resort where the English working class who don’t go abroad spend the holiday season. Yes, class still rules in the UK, although we are now much more bashful about admitting it.
Along the prom or down the main shopping street with its gift shops and cafeterias, what I’m most conscious of are people looking after each and making it possible for everyone to be in the swing of things. Here are three generation families of children, parents and grandparents – sometimes great grandparents too. Then there are both adults and children in wheelchairs or with other mobility aids – a reminder that impairments are unequally distributed in class terms.
Here is a far cry from the relatively recent past where disabled people were more likely to stay at home or travel in institutional groups. Yarmouth also welcomes its share of social care worker holidaymakers – the low wages most get paid mean they are more likely to take up residence in the budget holiday camps and chalet parks that abound around Yarmouth.
But in life always is death and our love for those we have lost can be a marketing opportunity too.
At the Wednesday market amidst the cheap tools, imported budget clothes and knick-knacks, an enterprising stallholder had come up with a new idea, commemorative garden plaques for lost loved ones – both human and pets. There were bone shaped stones and paw marks in memory of departed Rovers as well as small heart shaped tributes inscribed, ‘Dad I love you’ and ‘Friends are forever’. But the ones that caught my eye and moved me most were the flat stones that said:
In front of me an elderly couple picked up a small stone for a lost daughter.
Another couple were agreeing the text they wanted with the stall holder, herself a sympathetic middle aged woman. The whole thing struck me as a very positive social service at remarkably reasonable rates.
In slightly different vein was the stick thin man with a complex comb-over who was selling a magic card tricks set.
Through his sellotaped throat mike he explained one of the tricks: ‘”Make mine a half”. I think you can see where that is heading. You may never need to buy your own drinks again’.
Certainly not if you’d got the skill he had. ‘Not £15.00, not £20.
00, only £9.99.’ In the space of 5 minutes I watched forty quids’ worth sell.
I couldn’t help thinking though that the £10,00 or £11.00 for the stone garden plaques was likely to bring a lot more comfort and satisfaction.
In all the complex theoretically informed discussions that I’ve read about social work and social care education and training, I’ve seen little about the role of secretarial and other administrative staff.
Management we hear about. There has been a growing number of discussions about information technology. Yet pretty much zero attention seems to have been paid to admin workers.
Yet where would courses and professional education and training be without them? I’d prefer not to think about it!
Last week witnessed the leaving do for the BA social work administrator at the college where I work part-time – that’s Linda Flynn, aka Lin.
Lin has worked in the department for 28 years. We are moving campuses and sadly she isn’t coming with us. She’s seen the whole A to Z of social work education, from the ASS, through CSS, CQSW, Diploma in Social Work to the current social work BA and MA degrees.
As our Director of Social Work said in her speech of praise among the raised glasses and nibbles, ‘Who has tended to be many students’ first port of call when they have a problem – not their tutor, but Lin and her colleagues’, who would offer support, guidance, information, advice and experience. All of course well above the call of duty and nowhere listed on any job specification.
I’d feel a lot more happy about social work studies, training and research if it would pay a lot more attention to the crucial underpinning role of people - and let’s be honest - it’s mainly women – like Lin.
These are the people who in a very real sense not only keep the show on the road, but also play a crucial part in making the substantive learning culture what it is – or isn’t.
We have begun to realise how important reception and related staff are in health and social care to make service users’ experience a good or a bad one. It is now time to celebrate the key front of house women like Lin working in social work and social care education.
I am going to miss Lin a lot. We have also lost Ronnie. Thank god we have still got Beveley, Gloria and others is all I can say.
They are fonts of wisdom that many tutors and lecturers couldn’t lay claim to. I’d like to see a few more articles about the role of these key stakeholders in the British Journal of Social Work and the like – if we are serious about developing holistic critiques and understandings of social work activities and endeavours. All good luck for the future, Lin.
This year marks an important anniversary for me. It is the anniversary of the death of my friend, Julian Linton. Julian was 21 when he died.
We were friends at college together. Before we met, Julian had had his leg amputated from the hip to try to stop the cancer which had been diagnosed from spreading. Even at our tender ages, I’d known other deaths – my father when I was four, my grandparents as a child, other relations and friends of my mother.
But he was the first friend, the first contemporary who died.
I learned a lot from Julian. He introduced me to rhythm and blues and to fast driving.
He was keen on both. I’ve always stayed with motorbikes and still can’t drive a car. He did come on the back of my bike once after clicking his artificial leg in place and holding tight – and happily we both survived!
Our college made positive arrangements for Julian to ensure he had the access he needed. He was given a ground floor room. He was allowed to drive his converted car and park it nearby because public transport wasn’t accessible.
I remember some days when he had pain and terrible soreness where his artificial leg was strapped to his body. I remember one morning when he told us he woke and his pillow was stained with blood. His cancer had come back.
He went to hospital for surgery. A few years later in one of life’s strange coincidences, I learned that the sister of my then girl friend had nursed him at that time in hospital. She had fond memories of Julian She said they opened him up, found the cancer was everywhere and stitched him up again.
She talked about how hard it was for young people to die.
I had a letter from Julian not long before he died. He’d drawn a picture of himself as a matchstick man sitting up in bed and written, ‘I sometimes wonder if I’ll ever get out of here again’.
That was the last I heard from him. I was travelling through France and Italy with friends when he died and a mutual friend wrote to tell me the sad news and that Julian had been worried how I’d manage on our badly organised expedition!
Most of all though, I learned early lessons from Julian about disability in our society and the discrimination that goes with it; the inane comments that people make, the looks you get.
Once in the early hours, finishing off an assignment, I heard students through an open window talking on the path below, pointing at Julian’s room – ‘Oh that’s where that cripple lives’. On another occasion, on a demonstration, a policeman shouted at us to move on, because Julian couldn’t keep up with the other marchers.
You’re a long time dead, but I can still see Julian as clearly now as when we were chatting over coffee or heading for his car for a drive somewhere.
I’ve learned a lot more about disability since then, from my own experience and the helpful insights that people like Mike Oliver, Colin Barnes, Jenny Morris, Allan Sutherland and Vic Finklestein have offered. But my first lessons came from knowing Julian, from the barriers he faced and the way he dealt with them and I continue to be grateful to have had the chance to know him.
One of our neighbours has just died.
Allan lived on the top floor and we’re in the semi-basement below. We’ve known Allan a very long time, as long as we’ve lived in our flat. There was a knock at the door in the early evening and his partner had come down to tell us.
He’d had surgery for cancer, but it wasn’t successful and he died just two weeks later. Suzy, my partner had seen him on the street just a little while before.
You could see the effort Allan’s partner was making to hold in her tears.
What seemed to upset her most had been the promise of six to eight months of life after the operation – but it hadn’t happened. I really felt for her and for Allan. She shook hands as she left and this simple action conveyed enormous feeling and emotion.
She next had to empty the flat and told me she was planning to put all the black bags at different points along the street, so that it wouldn’t look as if too many came from them and the privatised dustmen would refuse to take the rubbish. Such is the stuff of modern life.
We first got to know Allan when all us tenants were struggling to get repairs and renovations done to our privately rented flats – without a lot of success.
Through the years our contact was little more than an ‘Hello’ and ‘How are you’. We’d see Allan in the street, going to work. He was a regular at the pub on the corner nearby and we’d see him there when we went for our annual Christmas drink.
But although our contact could be said to be limited and superficial, I realise now that for me it was an important part of the fabric of my local life. This has been whittled away over the years as the street where we live has changed from a mixed neighbourhood with children and older people, to one of high price housing, transient owner occupiers and bought to lets. You never really get to know anybody.
You tend only to see them taking the few steps between their front door and their car.
I am sure that the landlord will be determined to get Allan’s flat now to sell it for some vast profit. I hope, if his partner wants to, that she will be able to stay.
Allan never succeeded in getting his repairs done. The roof continued to leak. But we can be sure that his flat will get a good going over now if Allan’s partner has to leave and the landlord can get it on the market.
We have seen the same thing happen time after time, bodies barely cold before the builders are moved in after years of neglect and delay. What a requiem for another friendly neighbour. What a statement about treating housing as a commodity rather than a social service and community resource ( ).
Newspapers fascinate me – not least because of their potential to be awful. I sometimes think I couldn’t make up their news values. I’ve watched with special interest in recent years the way that tabloid agendas have increasingly been exported to the so-called ‘quality’ press.
Often the only difference between the Sun, the Mail and the old broadsheets is that you can read the rubbish sooner and in more detail in the former. I am probably such an indiscriminate reader of newspapers because I spend a lot of time in cafes, where there tend to be rich pickings of cast-off dailies. Nowadays I am more surprised at how similar the Guardian and the Telegraph or the Times and the Sun are, rather than how different.
On Tuesday 13th June, it was the Daily Telegraph that caught my eye. This time, though it was less media news values that got my attention and more current political priorities. Page one was true to form; a large photo of England football wives and partners out shopping in Germany.
Then on page seven there was an interesting advert – for Veterans Day, 27 June Organised by the this ‘celebrates the contribution made by veterans of all ages; highlighting the help available to those who need it. To be honest, I am not a great one for ‘days’ and I’d also have preferred we use our own language rather than import the Americans ‘veterans’. But these are minor objections and anything which pays attention to the men, women and children who suffer in war (whether in uniform or out) seems a good thing to me.
It was the juxtaposition of the lead news story on page six that really made me pause: Elderly in private care ‘denied human rights’. This reported serious concerns expressed by the at their annual conference about the treatment of older people in private care homes. There are 400,000 older people in care homes in England, most of whom are in private provision.
The Telegraph reported that the human rights of care home residents are frequently ignored with frail and vulnerable people going unfed, unwashed and facing physical abuse. The Chair of the Association described the situation as a national scandal. Relatives spoke of neglect and appalling conditions.
Gillian Dalley, Chief Exec asked: ‘Who is going to protect the 95 year old with dementia when she is left lying unwashed in bed and being shouted at for being ‘naughty’’.
There are some important points to make about this story. First three cheers and well done Relatives’ And Residents’ Association for keeping banging the drum on this issue – and managing to get some coverage for it.
Second, this is hardly a new story. It is not long since we had a report from the highlighting problems facing older people in the social care system. No one can say that facts like this aren’t known.
We might also ask in an age where community care has long been proclaimed just why so many older people are living in institutions. The penny also drops these residents are likely closely to overlap with the ‘veterans’ whose contribution we are meant to be ‘celebrating’ rather than whose human and civil rights are being denied at the end of their lives. We can also expect that since women live longer than men, we are probably not only seeing age discrimination here, but also the devaluing of women in later life.
But the point for me is, how is it that such an important issue can command so little political priority. According to the Telegraph, people in private provision who pay for their own care aren’t adequately protected by the Human Rights Act. A 10-Minute Rule Bill seeking to rectify this is unlikely to become law.
We have no reason to expect things to change.
As children we were taught in our story books that when evils were identified they would be put right. Right!
! How come in a society whose politicians boast of its wealth, that a relatively simple problem to correct like this, is likely to remain a continuing blot on the public policy landscape? Isn’t there one major politician who will champion this cause effectively?
What is there about prevailing political, media and public values that so little gets done? If England can mobilise the amount of energy and interest that been shown in the two dreary and boring football matches so far played in Germany, you’d have thought we could do just a bit more for those we owe our lives to.
War and welfare tend to be placed in very different mental compartments.
But the brutal truth is that when the flagwaving and tabloid patriotism are over, many of the consequence of war arrive at the door of social care and other welfare services. They are expected to pick up the pieces. As the Great War poet wrote, what starts with ringing of bells, ends with wringing of hands.
And by the time chauvinistic headlines have long been lost as fish and chips wrappers, social care agencies - worthy, boring, dull and underfunding - are what are expected to get on and help sort things out for people.
Two things have focused my mind on this subject over the last few days. First was the programme exploring the experience of three members of the British armed forces, wounded physically and mentally and now back from Iraq medically discharged.
Second, of course, is the massacre in Haditha, where 24 civilians are now known to have been killed by US forces. This was indiscriminate killing in its crudest sense. Old and young, men and women, from a wheel chair user to a two year old, were among the victims.
One of the three British soldiers featured in the BBC programme, said that his regiment and the had been brilliant. But the hadn’t been interested. They come down hard if you do something wrong, he said, but with something like this, you are ‘just a number’.
A sergeant who lost a leg above the knee and had now determinedly created a new life for himself, talked about getting the standard letter from the MoD saying that they did not accept a ‘duty of care’ for him. As he commented, who would fight for their country if they knew that was the deal? All had been profoundly changed by their experience.
All had needed enormous help from family, friends and health and social services.
One of the big questions that has been asked following the news of the Haditha massacre is ‘how could the (American) soldiers have behaved this way?’ (The Independent, 3 June, p3) Another is what will happen to them afterwards?
We may never get a definitive answer to the first question. But what we probably can say is that if a society like the USA, still overshadowed by its own internal racist divisions sends young men to war in what it seems to see as alien nations, then the likelihood is that a number of those young men are likely to behave badly and be degraded by the experience. All bear some responsibility in such circumstances, but the leaders of such societies bear particular responsibility, even though they can seldom be held accountable.
The most developed discussion I have seen of such a situation was offered by Christopher Browning in his book ‘Ordinary Men’*. He systematically researched the history of a German reserve police battalion in the second world war. He tells a story of how an unremarkable group of men became mass murderers in the holocaust.
Expected to shoot Jews, men women and children by the thousand, some responded with enthusiasm; others just got on with the job. Most interestingly, none of those who did not comply was punished, but still the greater number of Mr Averages acted as murderous monsters. from Iraq now give a sense of the feelings of some US frontliners placed at the sharp end of today’s moral and military battleground.
We can only imagine what help and support they will need to re-enter life on the same psychological, moral and spiritual terms that they left it to fight ‘the war on terror’. Social care in the UK as well as across the Atlantic will need to pay increasing attention to such issues as more and more of us are sucked in different ways into this conflict. It’s also another reason why the work of organizations like the to address disasters and emergencies – and their consequences - is likely to be of increasing importance.
* Christopher R. Browning, (2001), Ordinary Men: Reserve police battalion 101 and the final solution in Poland, London, Penguin Books.
There’s a word for enjoying the misfortune and pratfalls of others.
It’s Schadenfreude. To the best of my knowledge there doesn’t seem to be an equivalent term for enjoying their good fortune! What does this say about us all?
Maybe such unselfishness is just too difficult for mere mortals. Most of us have seen the TV cameras sweeping over the nominees’ faces at Oscar, Bafta and other award ceremonies. We’ve watched carefully to see the reactions of the losers when the prizes are announced.
These are generally much more interesting than the cheesy speeches, tears and endless acknowledgements of the winners. There are probably celebrity courses now in how to handle your body language in such situations; how to move past the fixed smile, grimly determined ‘spontaneous applause’ and insincere pecks and pats on more successful colleagues. I must say I’ve always admired that minority of losers whose faces couldn’t disguise the fact that their primary emotion was disappointment that they hadn’t won.
Awards often don’t go to the people who should really get them. But last week was a pleasant exception. I can’t think of anyone who more deserved to be the winner of .
In Mind’s 60th anniversary year this was intended to celebrate the achievement of the person thought to have made the greatest contribution over the last year to challenging stigma and improving the lives of those affected by mental distress.
…And the winner was Peter Campbell, the survivor poet, activist and writer. You could say that I am biased because I’ve known Peter almost twenty years.
Founding member of Survivors Speak Out, his latest volume of poems, Brown Linoleum, Green Lawns is now available from . I can’t count how many mental health service users/survivors I have met who have said that meeting Peter Campbell or hearing him speak inspired them. I am proud to have worked with him.
Peter has been a quiet but important influence in the survivor movement and mental health field over the years. It is no accident that this recognition has come from the grassroots; from members of Mind’s networks, readers of its magazine, and its 210 local Mind associations. This is a real case of a well done for Peter being a well done for all of us.
I’ve just been looking at the programme for this year’s . Community Care Live fascinates me. I’ve been lucky enough to be able to go every year for some time.
Its particular combination of crowds of social care workers and students, private sector organisations with their cutting edge trade stands and freebies, plus the hubbub of publishers, big voluntary organisations and professional bodies, always leaves me wondering what, if anything we all actually have in common.
What amazes me about CC Live’s programme is how wide a range of issues and groups social care embraces. Crime, justice, housing, health, sexuality, sexual abuse, smoking, play, safety, substance misuse, planning, placements, inspection, evidence and evaluation, are all there.
So are older people, children, young people, people with learning difficulties, mental health service users, disabled people, families, carers, black and minority ethnic groups, police and more. It really is like the old strap line of the News of the World - ‘All human life is there’.
Community Care Live brings all these different overlapping groups of people together.
Yet curiously social care itself seems almost determined in its operation to separate them all one from another. The tendency of years of reorganisations and restructurings has been to separate adults from children, families from people with learning difficulties and people with different impairments from each other. Now social care service users have to relate to yet another government department – the – and who can feel confident this will make matters easier?
A similar pattern of separation has developed as service users have got together and organised. Generally this has been along the lines of particular impairment groups – older people, disabled people, mental health service users, people living with HIV/AIDS and so on. This has probably simply followed from the way services are organised and service users are categorised.
But it is hardly helpful. People just don’t fit into neat boxes, in the way that policy planners would like them to. Our identities are complex.
We aren’t just one thing. Disabled people are also parents and children, may use mental health services and so on.
That’s why , the user controlled organisation which I am part of made a deliberate decision to work across the wide range of user groups and involve all groups of service users in what we do.
We recently began work on a new national project, supported by the , Beyond The Usual Suspects: Developing diversity in involvement. We know that there are some groups of service users who face particular exclusions and to make matters worst, are also likely to face particular barriers if they want to get involved. The aim of the project is to challenge such barriers and exclusions.
The work has already made us focus our minds on the subtleties and complexities of service user identity. One conclusion that we are coming to is that while there are many things that differentiate us as service users, there is still one which sadly unites us. This is the fact that we routinely face barriers, exclusions and oppressions by virtue of our experience and who we are.
What binds us together may be a negative, but we aim to use it as a strength – and occasions like Community Care Live provide one more opportunity for people to come together to do something about it.
It took two world wars and terrible inter-war poverty and depression to create the British welfare state. It took Mrs Thatcher and the discredited politics of the New Right to undermine and destabilise it a generation later.
Now we are inheriting the consequences. These consequences include state and employment pension schemes in disarray, a national health service in a state of financial and organisational meltdown, despite having had more money thrown at it probably than ever before and a social care system that offers less and less to fewer and fewer people at increasing cost.
It’s not the current horror stories about pensions, NHS and social care that have focused my mind on what increasingly looks like a crisis in social policy.
Instead it has been events across the channel at Normandy 62 years ago. Last Friday I was off to Norwich for a break. As I waited at Liverpool Street Station for the (privatised) train – delayed yet again – but still calling itself ‘First’, I came across three old soldiers, raising money for the annual appeal to help Normandy veterans and their loved ones to commemorate D Day on June 6th.
The three men I met had been a gunner, an infantryman and a chauffeur to Field Marshall Montgomery of desert rats fame.
I feel a great debt to men and women like them, who helped save this country and the wider world from the horrors of fascism. Unlike most charities, theirs is a cause I feel proud to be associated with (although I still think that the state who sent conscripts like them off to fight, should meet the costs of them returning to where many of their comrades died).
As someone involved in the service user movement, I’d be the last person to say that the post-war welfare state was perfect and beyond reproach.
Speak to any service user who experienced its segregating, inferior and frequently impoverishing services and you’ll know different. But compared with the poor law and the free for all of the market, where you had to pay to see a GP, had to rely on charity hospitals and were likely to have zero social security if you were old, sick or disabled, it must have seemed like manna from heaven after the war.
Hardly surprising that people thought it was worth fighting for.
No wonder that the 1942 Beveridge Report was a best seller. No surprise that some people still remember that Britain’s first wartime victory, El Alemein, won by the same Viscount Montgomery, took place in the very week that the Beveridge Report was published. Easy to sea why Winston Churchill, while feted as a war leader, was immediately voted out for a Labour government when peace was declared.
People desperately wanted something better – and the welfare state offered a real promise of that. They remembered only too well how bad things had been before.
Turning to the market for our welfare, the route that Mrs Thatcher set us all on, seems slightly foolish, to say the least.
After all, the welfare state was first set up to compensate for the brutal inequalities and hardships of a market economy. But public memory is short and people who weren’t around in the first half of the twentieth century clearly never had any direct experience of just how harsh it could be. How else could anyone ever imagine that large private corporations would ever put people’s wellbeing first, or that nifty accounting schemes like the private finance initiative (PFI) would ever do more than enhance the bottom line of commercial companies, while running up huge public debts?
Of course, the welfare state needed to be reformed. Nothing is perfect and everything needs to adapt with circumstances.
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