Articles

The following articles first appeared in Community Care magazine on the Opinion pages:

Friends not Fortune
Human Rights: Transforming services?
It takes a village to raise a child
Those who think they know
Let's not talk about Kevin
Whose Benefit?

FRIENDS NOT FORTUNE

A gale of fresh air blew out of my television and nearly knocked me over. I was busy fending off the desire to scream as I ploughed through my ‘In’ tray of parking fines, tax returns, and insurance renewal forms when the BBC announced that it had been scientifically proved that money does not make us happy. A large piece of national research has shown that Britons are less happy than in the 1950s despite being three times wealthier as a nation.* Apparently, after reaching an average wage of about £10,000 a year, more wealth becomes irrelevant on the happiness stakes. Money can bring us short term pleasure, but it is ‘social capital’, ie. the sum total of our connections and trust in other people which brings about a lasting sense of well being.

One statistic in the research really surprised me. They asked how many close friends people spoke to on average every week. Despite their assertion that friendship is crucial to happiness, 6 out of 10 people said they spoke to four or less, and 1 in 25 said none at all. Is this isolation linked to our economic system? I think so. We are constantly persuaded to replace human contact with material possessions or bought services, and our need for closeness and connection is the hook which clever salespeople use to get us.

I remember when my daughter was just five or six and ‘My Little Pony’ was all the craze. She wanted not just one, but several. My rather right-on friends were confused and a bit disapproving of my apparent indulgence in her materialism, as they saw it. But I was aware that it wasn’t the ponies she wanted, it was the sense of belonging to the group who were collecting them. They were the currency of friendship at school. Her wheelchair already made her different. The ponies gave her something in common to talk about, play with, exchange or give as welcome presents. I made the same decision about the Trolls and the Trainers. I felt myself trapped by the force of the market upon us families, all buying things we did not need and could not afford in order to try and protect our children from being lonely. Of course, in the end it does not work, as the polls proved. It does not lead to real friendships, but it would have taken all of us parents and teachers to unite in solidarity to create a different culture within the school – something we are not very good at.

Yet I do not think it is apathy and greed on the part of ordinary people which is the main problem. I suspect it is this deep seated fear of exclusion, planted and fed in our earliest days by corporate greed (another story) which drives us to collude with a system in which few of us believe. This issue strikes me as very serious when the World Health Organisation is predicting that depression (unhappiness) will soon be Europe’s number one disabling condition.

As someone who has never been married, or even lived with a partner, friendship has meant everything to me. Friends help me to think, share my life, teach me things, hug me when I need it, laugh and cry with me. Sometimes they give me practical assistance, and sometimes they accept all these things from me. They give me a sense of connection and purpose. My achievements have been in direct proportion to the range and depth of friends in my life.

I think friendship should be an educational goal at school. There should be rituals, anniversaries, national friendship days to celebrate these relationships which often outlive family bonds. Perhaps if we were all much more secure in our connections with each other we would find it easier to say “I have enough”, to stop seeking more and better possessions and to start to build a better, happier world.

May 2006

* Research for a series on BBC2 called ‘The Happiness Formula’ started May 3rd 2006

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HUMAN RIGHTS: TRANSFORMING SERVICES?

It was the question mark at the end of the title which caught my interest.

A big conference held by SCIE (The Social Care Institute for Excellence) together with the Disability Rights Commission aimed to look at the effectiveness of the Human Rights Act as reflected in the policies and practices of four main services – Health, Education, Social Care and Justice. I had gone to the conference in order to present a ‘set piece’ on the human rights of disabled children within the education system, but as I sat listening to the keynote speakers, and looked at the brightly illuminated power-point question mark, I began to think a bit differently. Can human rights be delivered through statutory services or are the current form of services only necessary because we don’t have our human rights upheld?

Mr Justice Munby reminded me of the shocking realization which I had had a few months before, that the whole debate about Human Rights does not include the issue of the worlds resources. The inconvenient fact of the massive and growing ecomomic inequality between people is not up for discussion:

“ Although it is well arguable that human rights include the right to a minimum standard of living, without which many of the other rights would be a mockery… the human rights protected by the Convention… certainly do not include the right to a fair distribution of resources or fair treatment in economic terms – in other words distributive justice. Of course distributive justice is a good thing, but it is not a fundamental human right”*

All the Human rights we do have are subject to the availability of resources in each country and state. I find it difficult to see how this could ever lead to meeting the human rights of poor people – the majority population. It certainly doesn’t now.

I then began to think about whether ‘education’ is a service at all, and if it is, who are the ‘client’ group. You tend to think of a service as something you want which is helpful to you. But education in the UK is compulsory. If your kids don’t go to school the police come knocking at your door. This doesn’t feel like a service to me – more like a duty. Children do not have the smallest say in this ‘service’. For them it is like forced unpaid labour in a place not of their choosing, at a pace set by others, with a curriculum drawn up and delivered by people who may or may not frighten them. Often they cannot even choose what they wear and they always have the threat of exclusion, especially if they are poor, black or disabled. So who is the service for? The Government? Parents? Employers?

I remember in my earlier, more naive days of campaigning for inclusive education, asking lawyers to think about how disabled children could have at least the same rights as non-disabled children in school. They rather embarrassedly told me that that wouldn’t be difficult because no children have absolute rights within the education system.

I also thought about what it felt like for me and many other disabled children to be left out, excluded from school - how lonely it was and how I longed to be part of the crowd, to have friends to play with. However difficult school could be, it still seemed preferable to be inside rather than to be kept outside.

In my prepared talk I had gathered together some examples of inclusive education in which friendship between children, across barriers of class, race and ability were seen as fundamental to any useful process of learning. I read out a quote from some children in one such school. They are aged about six and are talking about a boy who has no verbal communication and cannot move or sit up without assistance:

“What we enjoy most at playtime is when we push William up the hill in his wheelchair and come down really fast – we run down all holding on because we must not let go or he will roll off and get hurt. We hold on really tight in case he gets frightened. We enjoy reading with William. We hold two books and he looks at the one he wants. We follow his eyes. He likes Kipper books. Lucy and Vita hold the book and turn the pages. Natasha reads the words. When he is out of his wheelchair he lies down to take part in activities and we lie down with him. The best thing about having William in the class is his hugging and giving big cuddles.”*

I noticed there were tears in the eyes of quite a few listeners. That magic place had been touched where we get to remember how simple our needs really are and yet how difficult it is to meet them in a world confused by competition and greed.

It would be great to ask about the services people would create for themselves - children, disabled people, people with unmet emotional needs, ill people, elderly people, asylum seekers - that would really empower them and help them to feel they deserved and had the unconditional right to be treated well. I somehow feel they would look very different to the ones we currently have.

Micheline Mason

April 2006 (First published in Community Care Magazine)

* Lord Hoffmann in Matthews Ministry of Defence (2003)

* See ‘Snapshots of Possibility’ published by the Alliance for Inclusive Education

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IT TAKES A VILLAGE TO RAISE A CHILD

My Mum is not known for her left-wing political correctness, or a passionate sense of injustice, but both seem to have been fanned from some fading embers as she thrust an article torn from the Daily Mail into my hands and said “It’s so cruel! Can’t you write a letter or something?” Not liking to shatter her faith in the omnipotence of my letter-writing powers, I read the article quietly, folded it up and took it home to think about. It told the story of a couple described as having low IQs whose children were taken into care on the basis that their parents were ‘Too Slow’ to care for them.

The story left me feeling very disturbed. I thought first about me and my Mum fifty five years ago, when doctors told her that I had an incurable physical condition from which I would probably soon die. They told both my parents that nurses could care for me better than they could. They said I would be safer alone in a hospital cot than in their loving arms. The long-lasting harm done to me and my family by this separation has never been assessed, measured, recorded or recompensed. It is barely understood. There is a primordial bond between children and their birth parents which we break at our peril. Perhaps her still remembered pain was the fading ember fanned by the story.

Then there is the question of the level of scrutiny and judgement laid upon people with learning difficulties, based on a prejudice which is not applied to others. Competence is as much to do with self confidence as it is to do with levels of skill. When I took my driving test and sat next to the silent and inscrutable driving tester, complete with his clipboard, I can remember how my heart raced, my sense of myself as a good driver shrivelled, and the thought of three point turns and emergency stops seemed terrifying. Despite having driven for years, I could barely remember how to get the key into the ignition. Very few of us are at our best when called to prove ourselves to people who do not appear to believe in us. It seems to me that people with learning difficulties live almost entirely in a world of people who do not believe in them and who, hypocritically, demand standards of them which many people without such labels would never achieve. I am never surprised when such victims finally explode, hit out and shout threats and abuse at people in authority who have the power to take from them everything they hold dear.

And parenting – whoever said it is a job for just one or two people, alone in a house with no support and a world waiting to judge us when it all goes pear-shaped? It is not the model of human existence which has sustained us for the thousands of years when it was recognised that it takes a whole village to raise a child. Because of today’s economic pressures, most families now must be supplemented by services and paid or unpaid carers – extended schools and play-schemes, grandparents, child minders, au pairs and nannies - in order to manage. Working class families, as highlighted by the Daily Mail, who cannot afford to buy-in their support systems sometimes cannot cope in this climate. Forcibly removing children from such under-resourced families to be placed with better resourced families is punishing people for their inequality, and is not addressing the real problem.

The two things which can help families in need are money and support – real support based on respect and compassion. People with learning difficulties have been fighting for both of these things in the form of Direct Payments to buy-in practical assistance, and person-centred planning rather than service-led planning. This mobilises the natural relationships in the community to build circles of support and empowerment around vulnerable people. These principles are not yet practised in every local authority, but are recommended in the Government’s ‘Valuing People’ strategy for people with learning difficulties. They seem to have been forgotten in this debate.

But maybe the bigger question is to do with the change in society which is making the raising of children harder and lonelier for everyone. Perhaps the struggles of this family to stay together is a timely reminder that parenting is a relationship, not a job, and that resources are best put to supporting that relationship rather than trying to replace it. I guess my Mum knew this.

Micheline Mason. September 2005

(First published in Community Care Magazine)

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THOSE WHO THINK THEY KNOW

I did not choose to become an advocate for disabled and disadvantaged people. It just happened that when I heard people around me talking from a position of complete ignorance, I just couldn’t keep my mouth shut. I remember at the tender age of about nineteen, being at a conference about disabled people and personal relationships. A day centre manager proudly told us that he didn’t allow his ‘patients’ to start or develop romantic or sexual relationships and I exploded with indignation. These were adults he was talking about, not small children! He did not much appreciate my outburst, but many members of the group did - so much so that I was hugged by a doctor who told me, tearfully, that I had completely changed her thinking. I was amazed. I didn’t know doctors did hugging.

It seemed to me that my big mouth could be useful because so many of my disabled friends and comrades had been so intimidated that they found it very difficult to express their thinking in public, so I have continued to speak up wherever it made sense. However, something has continuously happened since I first started challenging the non-disabled world which is that I get told ‘It is alright for me – I am clever, articulate, only physically disabled etc. etc.’ It always comes from the mouths of non-disabled people who are claiming to represent the interests of all those others who cannot speak for themselves. This interest usually means continuing to ‘protect’ them in segregated schools and services. There is little that can make me as angry as that particular accusation and I have tried to think why.

Firstly it is the assumption that everything I know or care about comes only from my own individual experience and that I know nothing outside of it. In reality I have had more personal relationships with disabled people than any able-bodied person I know. From the age of three I was hospitalised with them, sent to special school with them, been a member of the disability movement with them, worked alongside them. I have heard story after story of struggle, laughed and cried, thrashed out ideas, listened to hopes and fears, agreed on common goals and fought collectively for them. I have known people of all ages, types and levels of impairments, social and ethnic backgrounds. From this rich community many of us are trying to communicate what we have learnt to those who still hold a great deal of power over our lives.

Many of us get dismissed in similar ways. People with Learning Difficulties at last manage to form their own organisation ‘People First’ and start to be powerful self advocates for real change, and what do people say? “Are, but they are the most able, they are not like ours”.

There is a second wider issue. Throughout history each oppressed group has had to self-organise and learn how to represent their group in public, to challenge unjust laws and practices. Women have done it. Black people have done it. Gay and lesbian people have done it. Working class people and many other groups have done it. When each group begins to organise it is inevitable that the first leaders will be those most able and best resourced from within the group. The suffragettes were led by owning class white women. Black people by well educated middle class black men. The disability movement was largely initiated by white, middle class males who acquired their impairments as adults. They had grown up as able-bodied young people, had access to an ordinary family life, an education, expectations, relationships, and experience of organising. How could it be otherwise? This doesn’t mean that their own struggles were not relevant, or they had not done their homework. It does not mean they could not make a platform for each successive ‘layer’ of their group, or that they had not already listened to and taken into account many different voices before they became spokespeople. In fact without the trust and support of the wider group, no one remains a leader very long.

Of course it is true that some people in every oppressed group still do not have the means or resources to directly tell us what they need. It seems to me a fair bet however that their needs will be more like their close but slightly more able comrades who have experienced 90% of the same things, than the imagined needs and consequent services dreamed up by people who have, by definition never experienced anything else than the role of provider, carer or oppressor, and whose position led each group to protest in the first place.

Micheline Mason

August 2006

(First published in Community Care Magazine)

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LET’S NOT TALK ABOUT KEVIN

I love reading. It has always seemed a wonderful thing to me that I can pick up a wad of paper covered in printed words and enter into the mind of someone else. I can learn from their research, experiences, insights and imagination without ever meeting them. Yet for the first time I have put down a finished novel and thought that I would have done better not to have read it. I thought it should have a health warning stamped across it.

The book was “We Need to Talk About Kevin” by Lionel Shriver. It is the story of a child who kills, told entirely from the point of view of his mother through the literary device of letters to her estranged husband. It is a well written exploration of her attempt to understand the reasons why it happened, and the possible role she may have played in the tragedy. It is very compelling, drawing you into her soul searching, relating uncomfortably to many of her feelings. So what is my problem? My problem is that it feels real, but it isn’t real. It is a novel, not based on a real life exposure of the events which might lead to such dangerous and bizarre behaviour, but simply the imagination of one woman speculating about something which happens and mystifies people. Because it is so well written, we can easily believe we have learnt something useful from the book, but to my mind it just adds to our prejudices and confusions. Given that we already seem to have a difficulty separating fact from fantasy – just think of all those cards and gifts sent to television soap stars when a screen marriage occurs – it seems that we really need help to know which is what.

How different this book is to the searing story which emerged from Michael Moore’s investigative film documentary ‘Bowling for Columbine’, or reading the biographical details of the lives of Mary Bell, or the two boys imprisoned for murdering Jamie Bulgar. In reality we discover the devastating consequences on the lives of young children of lies, loss, bereavement, abuse, neglect, poverty, loneliness, chaos in a world which would rather turn its back than support parents who are struggling to cope. We do not want to know how children suffer in this world we have created. We would rather blame them, blame parents, issue them with threats, ASBOs and lock-ups, or of having their children taken into ‘care’. We would rather do this than use our intelligence to work out cause and effect and act accordingly.

As a counsellor with 30 years experience of listening to people trying to face and heal the hurts inflicted upon them when young, - hurts which continue to shape our feelings and behaviours into our adult lives - I know that when the entire situation is known and understood, everyone’s behaviour makes sense. There is always a reason. This includes paedophiles and murderers and other people we love to call ‘bad’ and dismiss as inhuman. I am not saying that consequently all behaviours should be ‘allowed’, but I am saying that if we want to prevent more people following their path, we need to find ways to help people tell their own stories, and learn to listen to them.

We need these stories to be the basis of our responses because they tell us something about the human condition and, ultimately, ourselves. It is hard for these stories to get told, written, published and publicised or given any status. I remember once asking twelve Educational Psychologists if they had ever read a book written by a disabled person and they just looked at me with bewilderment. When I asked who, then, taught them about disabled people, given that they were asked to make decisions every day about the lives of disabled children, they said “We teach each other…” I think this is the problem we need to solve.

Micheline Mason

(First published in Community Care Magazine – Title changed)

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WHOSE BENEFIT?

The Government wants to save the Tax Payer money by co-ercing thousands of people to come off Incapacity Benefit and get into work. But is a policy of full employment a dangerous proposition for society?

It seems to me there are two separate but related issues which need to be explored. They are both to do with Time. I have noticed, that the effort to create a rise in our standard of living has come at a huge cost. The cost is the pressure on our time which prevents us from paying attention to our emotional needs and those of others. A large number of people on incapacity benefit identify as having mental health problems. Many more people are struggling to keep it together by using drugs – alcohol and tobacco, marijuana, anti-depressants or worse. Thousands of school children are being ‘calmed down’ with Ritalin. Half my family believe they are ill and in need of medication because they keep having feelings of deep sadness and despair. Everyone seems to know someone who is in emotional crisis and needing help they cannot get.

This strange modern world of technology leads us to live half our lives in cyberspace, deluding ourselves that we are in contact with human beings whilst actually we are in a deep relationship with a machine. Even the culture of work which once answered peoples need for companionship, solidarity and emotional support has increasingly been replaced by a culture of staring at computer screens or working alone.

We all need time for rest, healing, and reflection. We all need time from other people to listen to us while we deal with our hurts and confusions. We need to laugh and joke and get things in proportion. We have less and less of this in our over busy lives and without it we become unhappy, our behaviour becomes less rational, and we are less able to solve problems and think clearly. Depression can make us unable to function, so it seems likely to me that the Governments idea that there are thousands of wimpish and unimaginative malingerers who would be cured by a hard day’s graft is just not true. I think our lifestyle creates many casualties. After all, it is not easy to get onto incapacity benefit. There has to be a serious breakdown of our capacity to work before a claim is successful. Filling in the required forms can be a major challenge to our sanity in themselves. No one does this lightly.

A second issue is highlighted by disabled people who find the pace and conditions of conventional employment too difficult to manage. They are part of a very important, if unrecognised group of people. It includes retired people, artists poets and writers, full-time parents, young adults not in full time education, carers and people who have simply decided to offer their labour on a voluntary basis – including many people on incapacity benefit. Together these people do over 50% of all child-care in this country, they hold together communities, care for adults who are ill, bereaved or in crisis, join committees and become trustees, make and tend gardens, participate in local politics and pressure groups, study travel and learn, take time to think alone and in collaboration with others, make art, drama and music. They generally carry out a multitude of activities which are based on rational human needs rather than the drive to accumulate wealth. They are people who give time to others. I believe this creates an essential balance in our lives and one which should be valued and supported. Instead it is being eroded slowly and quietly like acid rain falling on our trees.

The wealth of our nation has always been created by a combination of paid and unpaid labour. Upsetting this balance seems to create a new form of emotional deprivation in the midst of material and intellectual over-load. Let us not threaten the most vulnerable with economic deprivation as well. People who are entitled to Incapacity Benefit are also entitled to Housing Benefit. It is often the fear of losing Housing Benefit and the consequent loss of one’s home, rather than the loss of Incapacity Benefit or Income Support, which creates the ‘perverse incentive’ to not take the risk of coming off benefits when you do not know if your capacity to work, or the job itself will last. My solution is simple – let disabled people, including those with mental health problems or learning difficulties do whatever work they can get and manage without losing their paltry benefits, especially Housing Benefit. The benefits bill will remain unchanged, but more people with be paying taxes to offset the outlay. Everybody will gain and there will be no ‘perverse incentive’ to refuse work for fear of loss of security.

Micheline Mason

January 2006

(First Published in Community Care Magazine)

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