Inclusion Now Volume 11

nclusion ow

ÂŁ1

A voice for the Inclusion Movement in the UK

Welcome to the New Year

Volume 11

Winter 2004/5

Contents Editorial

2

Editorial

3

Inclusion at West Bridgford Interview with Inclusive Head Teacher Wendy Daley

6

All On One Leg Poem by Asma Bhol

7

Young Pioneer Anthony Ford takes disability equality to his college

8

The Welcome Project A new resource from Parents for Inclusion

10 Why Love Matters Thoughts on a new publication

12 Touch - Our First Language Micheline Mason explores the importance of touch

15 Exam Boards Fail the Test Joint Council for Qualifications changes guidance

16 The Long View Colin Newton questions decisions made when planning futures for disabled children

19 News, Info and Events 19 Helpline Details 20 Who We Are Cover photo of Karen and Eve courtesy of Parents for Inclusion.

Inclusion Now is also available on tape, disc and via email. Contact the Alliance for Inclusive Education for details (address on back page)

2

Inclusion is much more than an issue about which kind of school is best. It is about the fundamental needs of human beings - the need to be loved, to be touched, to be made welcome.

This issue of Inclusion Now has a rich collection of contributions from disabled people, teachers, parents and allies, all looking at different aspects of these core concerns. It will be of particular interest to parents and early years workers in all areas of childcare.

Inclusion Now is very privileged to be able to publish this radical thinking from voices too often ignored or silenced.

Let 2005 be the year in which everyone sees how our humanity will be expanded and developed by following to road to inclusion.

Micheline Mason Editor

DON’T FORGET This is YOUR magazine.

Send us your news, views, stories, furies, elations, etc.

If you would like to receive Inclusion Now regularly, join the Alliance for Inclusive Education and you will receive every issue free as part of your membership. There is no subscription service for the magazine so this is the only way to guarantee it falling onto your doormat once a term!

Schools

INCLUSION AT WEST BRIDGFORD West Bridgford Junior School in Nottinghamshire has 340 pupils and is distinctive in that person centred planning tools and pupil empowerment are developed as key aspects of this inclusive school.

More than 40 PALS groups or circles of friends run at the school for pupils who are vulnerable to exclusion. Each member of staff facilitates at least one group and the head runs 20 groups. The School Council runs an assembly every Thursday where pupils bring up their concerns and these are dealt with by the pupils. Problems in the playground are also dealt with largely by pupils trained in peer mediation. A simple MAPS (Making Action Plans) process is engaged in with new parents to ensure the right information goes into the Individual Education Plan.

One of our team went to interview Wendy Daley, Head Teacher:

look for the person who has the empathetic soul. That sounds a bit, you know, passionate and emotional, but it's true.

What I've always done here is never recruited the role of the expert, but to the role of the person who's excited about

“I think the key word for me that I look for in staff when I appoint them is humility; I don't look for the expert”

(interview taken from tape transcription)

"We've been impressed at the way in which the children have been empowered to care for each other. What are the key things to bring about that culture in a school?”

Wendy:

School Council Assembly

"Well I think the key word for me that I look for in staff when I appoint them is humility, I don't look for the expert. I think you have to

learning, who can acknowledge that they don't know but they want to get into process because that's the creative thinker. That's the person who doesn't mind if it all goes wrong because things are redeemable and we have to see that in children. I don't like the label of failure and I think a lot of kiddies have had that stuck to them for years in the past.

Today I may not get it right, tomorrow I probably will and then there's something

3

Schools else I can learn. There's this constant wonderful energy once you relieve the pressure of the arrogance of being the expert. I think wonderful empowerment comes with humility because that is the total learner mentality and that is what all the staff were recruited to here and it has to be if their philosophy has any integrity, it has to be something that is relevant for the whole.

If it isn't, it's condescending and it's patronising and children soon pick up on patronage and the sense of hypocrisy, but here there is total equality and that does mean within the big and the little people totally."

“In the school assembly, you were the only adult there with 340 Juniors. How does that come about?”

Wendy:

"I think the essence again of a created arts philosophy or a caring philosophy is risk. If the children recognise that they can only make decisions up to a point because, they know that their decision making has a ceiling on it.

But we actually say, ‘Yeah, ok, make the decision’ and then we look as if, or give body language that it looks as if we're totally disinterested and move away and you can see their Adams apples going up and down like, 'she meant it' so we have to take this seriously. Often when I'm doing training on the School Council and the cynics amongst the profession say ‘Oh no, children will take the rise out of this situation. They'll give 6 months holiday every year'. They don't, because you're not there and your presence often inflames that kind of ‘let's be flippant’ confrontation, but because you're not involved, the children know it is theirs. They have to have credibility and they sustain that credibility. What always impresses me too is their assemblies are the most silent of all of the assemblies, because it's the children's and you can see there the tangible essence and the quality of ownership. It's incredible, I'm very moved by it and I've been doing School Council here for over 12 years but that ability and capacity of the children to do that, to give me that gift of their trust.

They're trusting me not to intervene and because of that they take it totally 100% seriously".

Year 4-6 PALS Group

“It’s like sometimes you fall out of the boat into the ocean and you’re floating around. We’re your lifejackets. All you have to do is reach out and put us on” Quote from a child in the PALS group, explaining to his friend who had been having difficulties getting along with others.

(Quote taken from Snapshots of Possibility.)

4

“Do you think this ethos helps include the range of disabled children you have here?”

Wendy:

"Yes I do. I think it's very condescending if you suddenly say, 'I'm being inclusive, look I've got an accessible toilet because I've got a child that needs it'. I don't want that. I want a school that says, 'Everybody come here and isn't that great, we've got an accessible toilet, that will be great for so-and-so, won’t it’.

I don't want an appendage of physical inclusion to be attached to a child. So what we do here has to be right for everyone, otherwise it's very condescending and it's also demeaning of the children. I remember once at a School Council meeting one of the children was talking about being namecalled and another child got up at the back who had Prader-Willi Syndrome and she said with totally wonderful confidence and clarity, 'I know how that feels, to be at the butt of people's name calling'. She said, 'Talk to me and I'll show you how to be strong and just learn to love each other because that's what it's done for me'. Now I can't script that to

Class 1 signing

happen, it can only happen if that child feels equity rather than, ‘Right would you like to say something Rosie, would you like to stand up and say your experiences’, I mean immediately that puts me in this awful benefactor role. I want to step back because in the end the world is for the children. I have to give them the skills to know it is their world, they have the entitlement just as much as Fred, James, Hillary, whom so ever, so what we have here is for all of us".

“How do you ensure that all the support is there for pupils who need it and yet they feel empowered?”

Wendy:

Mrs Jamal and Wendy Daley doing MAPS

"The strong structure of systems I see as absolutely emphatic. We made sure when I first came into this school, we did an audit right across the school to ensure that all systems are consistent. I think that if you have that, it doesn't become boring conveyor belt education, but it actually frees staff to then be creative thinkers and enactors because they know that the system of support is there. Our expectation of behaviour is very high here because we constantly jack it up. The children have that expectation too, that there will be that constant reassessment of systems. That gives them that safety net.

5

Young Voices ALL ON ONE LEG She gives bless ness birth to four lions, Shows them the paths of life, Warns them of all the bad signs, She’d wrap them in her arms, So they’d never feel neglected, All on one leg.

She would walk day after day, She would even throw her dreams away, She would hold her breath and slowly die, If it meant her cubs would smile instead of cry, All on one leg.

One’s travelling to build a family of his own, All the happiness a woman gains when her child is fully grown, Feeling distressed and worried if the decision is right, Is the future going to be bright?

This is where she slides down the rainbow, This is where her dreams start to grow, All on one leg.

A devil awakens to fight, But she still doesn’t let them out of her sight, She still holds onto the line, Which is still feeding, she entharsysis an anchor, A ball of fire gets thrown at her, She stands up to cancer, All on one leg.

Now as she’s fine She lets go of the line, Allowing them to fall or fly.

She lives her life without pity and sympathy, I don’t know about you, but I’d put her down in history.

Asma Bhol (16) (written about her mother)

6

Young Voices

YOUNG PIONEER Like most 17 year olds, Anthony Ford is aspiring to get a batch of good grades at his A level college, St Dominic’s, in Harrow. But, unlike other teenagers, he has other responsibilities too.

Anthony is the first physically disabled pupil at the A-Level college and recently was invited by the college to help the staff and other pupils understand what disability equality was all about. Being something of a computer aficionado, Anthony lost no time in getting a slick powerpoint presentation up and running.

And, not to outdo the standards set by teachers at the college, he set about making his audience think seriously about solutions to practical situations involving disabled people.

‘It was really motivating’, said Caroline Davies, 17, another A-level pupil at the college. ‘The best thing was him - telling it himself’.

Question 2: Imagine this scenario: A high school English teacher who works on the second floor of the school breaks her back in a bicycle accident while on holiday in Australia. She wishes to continue teaching at the school as a wheelchair user. The school does not have a lift and is not due to get one for several years.

What is the ‘medical model’ answer?

What is the ‘social model’ answer?

Medical Model

Social Model

St Dominic’s was so impressed with Anthony’s engaging and thought-provoking approach that they were inspired to compile their own diversity guide which includes Anthony’s contributions. Now, a new talk by Anthony is planned in 2005 for governors at the college.

Preethi Manuel ANSWERS: Q1:

Inclusion Now readers are invited to participate and check out their own understanding but time yourself - you have only ten minutes.

Anthony says: You don’t see my PA here! He’s around somewhere if I need him, but I think I can manage this situation on my own!

Question 1:

Q2: Medical Model

In this photo, with Anthony in the middle, which is his PA?

Sorry but it is not possible for you to work in this school any more.

We cannot relocate classrooms There is no way of getting you up stairs.

It is not reasonable for you to expect to continue as a teacher when you are in a wheelchair.

Social Model You are a valued teacher and we will do everything necessary to keep you on our staff.

We can relocate classrooms so you work on the ground floor. Staff meetings will be held downstairs.

There is no need for you to go up stairs.

We will ask the local authority to provide an access programme for the school.

7

New Resources The

WELCOME PROJECT For most people their birth and their first few months are the time in their life when the world is most delighted in them. Babies lie there and are adored simply for being alive.

This welcome creates a positive foundation which helps them to withstand the inevitable difficulties, rejections and criticisms which come our way as they grow up. But for many babies born with an impairment this welcome does not happen. The worry and fear, the medical interventions and the reaction from a world conditioned to think negatively about disabled people can instead surround the child with sadness, disappointment and anxiety. This will also create an emotional response in the baby, but one in which very damaging messages can be internalised.

Rather than feeling a source of joy to people, they can feel they are a source of pain, a burden, unwelcome.

Many parents who are part of the inclusion movement have struggled to combat this negativity as their child grew up. They have realised it needs to be challenged right from the start of life, or at the point of

8

diagnosis. Under the umbrella of Parents for Inclusion and in collaboration with the Alliance for Inclusive Education, they have launched the Welcome Project. “This project has come from the heart and soul of parents who have been subjected to the medicalisation of our disabled babies and disabled children - parents who wish that we had known then what we know now - that our babies and children are brilliant stars and have a right to belong�.

Together with disabled adults they have written a letter, addressed to the baby, reminding her or him of the truth about her/his value. The letter inspired a welcome song, written and sung by an ally, Alan Sprung, and recorded onto a CD. Parents for Inclusion designed a leaflet that encourages any new parent to contact their help-line at which some specially trained

volunteers will be able to answer calls and hopefully feed the families into a network of hope. Part of this would include information about PI’s training course for parents called ‘Planning Positive Futures’. May parents have already said that this course changed their lives and helped them to become true allies to their disabled children.

The letter, the CD and the leaflet were brought together into a pack which can be given to a family just when they need it most, usually in those early days in hospital when all the news seems to be bad.

Using the information gathered from this local pilot, Parents for Inclusion are fundraising in order to launch the Welcome project nationally next year.

For more information please contact Parents for Inclusion, details on the back page.

The Lambeth Early Years and Childcare Partnership (Lambeth SureStart) has funded Parents for Inclusion to run a pilot project in Lambeth. 3000 packs have been produced and work has begun to get them into the hands of people who might have contact with such families – Midwives, Health Visitors, Pediatricians, G.P.s, Early Years Workers.

On November 17th 2004 over 80 parents and professionals came to the launch of this pilot scheme. The day was a great success. Many were moved by the letter and the song.

Workshops were held which asked people to think about their own welcome into the world, how different people are welcomed according to their status in society, and simple ways in which we can change our behaviour in order to make the world a warmer and safer place for every child.

“ “

Excellent. Hit the spot...... everybody should have it

”

Very eye catching and puts its point across. It will help to change things

” 9

Review

why love matters In this new book Sue Gerhardt brings together scientific evidence to show how babies need to be touched and loved in order for their brains to completely develop. Cornelia Broesskamp reflects on the new book and its implications for inclusion at the beginning of life.

Sue Gerhardt uses research from neuroscience, biochemistry, psychology and psychotherapy, arguing that the early experiences a baby has with the people, who care and look after him/her, will hugely influence the way the young person will deal with its emotions, deal with future relationships, and fundamentally deal with life.

What Sue Gerhardt says in brief: Human beings are social beings. They need each other. That is why they need to learn how to relate to one another. In the womb the baby is already responding to the world. Once born, this interaction between the environment (people who are closest) and the baby continues.

When mother (father, primary carer) takes delight in the baby, baby gets ‘hooked’ on the pleasures of relating. So much so, that when babies are held and smiled at, cuddled and gently rocked, certain parts of their brains develop and grow. (the orbito frontal cortex in particular).

Why should this be particularly important?

This part of the brain allows us to become social beings, making sense of our feelings and emotions and those of others. Some social pleasures are registered here too, particularly the flavours of food, the pleasures of touch, the recognition of beauty.

When a baby is distressed and cries, it needs a person to understand and respond and deal with the situation, because the small baby is not yet able to deal with its own stress.

There seems to be one particularly important

10

chemical, called cortisol, which is released when the baby is experiencing stress. Within the first six months the baby sets up a ‘cortisol baseline’, which translates into something like: This is how much cortisol I am expecting to release into my brain and this is how much stress I am expecting to deal with.

The right balance of cortisol is important because it helps build and wire the front part of the brain.

However, if this cortisol gets released too often the brain becomes flooded. The baby will continue to produce too much of the stuff in the future and will develop a tendency to do it frequently. Too much cortisol is associated with fearfulness, depression and anxiety. It links into a weakening of the immune system. It also affects memory and learning. This flooding may also be responsible for an unexplained shutting down of cortisol. production leaving the person with too little. They will tend to be more emotionally detached,

generally suppress their own feelings and have a tendency to act aggressively.

given right at the start to parents when a new baby is born.

Our emotional behaviour is learnt as a response to others. Mostly through our mothers (or primary care-giver) we learn how to relate to our own emotions and to those of others. If s/he is responsive to our needs we grow to feel confident, trust that our needs can be met, learn that emotions are important indicators of what goes on for us and that other people are a vital and welcome part of our world.

I wish that all policy makers and practitioners, particularly in education, healthcare and social services read this book!

I wish that all intensive care baby and children units will undergo radical reorganisation as a result. That babies will not only be supplied with oxygen and medical life support, but with touch and holding as essential parts of the treatment. I wish that the offer of 1:1 care in early years all day nurseries will become norm and be affordable.

If babies are neglected, like the Romanian orphans have been, the necessary part of the brain literally does not grow and the children will probably never know how to relate well to others and themselves.

Equipped with ‘Why Love matters’ we can promote the ‘Welcome Project’ (see p8) with even more conviction. The book gives us the scientific back up to help us demonstrate just how vital this work is. Although not written with disabled babies in mind, I have no doubt that the arguments hold.

‘Why Love matters’ allows us to question even more firmly the impact of intense therapies and treatments, which ignore the emotional self of the young disabled person.

I deeply appreciate Sue Gerhardt’s efforts and care to avoid any argument, which closes the doors of opportunities for a person. She maintains that humans remain ‘open systems’. Feedback and readjustment take place all the time on all levels of our functioning. Change “So the first ‘higher’ brain capacities to is possible. However: The early relationship and stress patterns develop are social, and they develop in do set us up on a likely path through life. The more ingrained a response to social experience. Rather habit the harder it is to kick it. In than holding up flashcards to a baby, it the second part of the book Sue Gerhardt traces the links between would be more appropriate to the early child hood experiences and baby’s stage of development to simply mental health problems in hold him and enjoy him.” (p38) adulthood.

Sue Gerhardt is quite aware of how little support parents are receiving, how easily they get blamed for when things go ‘wrong’. How destructive the great division between work and home is, which forces parents into choices, which they do not really want to make or are good for their and all their family members’ emotional well being.

She asks whether society can afford to let early childcare be a purely private affair. There is so much at stake! The effects of antisocial behaviour are seen and felt by all, for example. There is no doubt that the most effective support would be

My one concern is that most of the research quoted in the book is probably done with non disabled children. Some of the findings will need to be revisited. I am thinking particularly of the studies about the importance of vision and language in the early stages of relationship building.

Cornelia Broesskamp Why Love Matters by Sue Gerhardt Published by Brunner-Routledge ISBN 1-58391-817-5

11

Feature playmate. Pain made me want to stay still and not be moved. I screamed each time I was lifted or nappies were changed. After four days of this my parent’s anxiety took them and me back to hospital. X-rays, a diagnosis, and everything in my short life changed.

TOUCH Our First Language

by Micheline Mason My bones broke like glass, but no one knew, so being born caused me much pain. Clumsy but wellmeaning people pulled me out of my mother and maybe slapped me to start me breathing. Two broken legs, a slap, but still I knew I was loved. I knew because I was given to my delighted parents who saw only my shock of red hair, my tiny nails, my button nose, all those things that parents wonder over each time the miracle of life occurs.

They showed me their delight by holding me close, stroking my face, letting me grasp their fingers, smiling at me with joy on their faces I must have been in great discomfort, but still I felt safe as I was taken home to be shown off to my older sister waiting for her new

12

I can still feel the withdrawal of the world from me. The stepping back. Grief replaced delight, fear replaced intelligence. The whitecoated professionals seem to take ownership of me on behalf of the State. I was placed in a cot. My parents were sent home. Nurses were instructed not to handle me for fear of causing further injuries to my bones. They did not consider injuries to my heart, my soul.

Touch is our first language. Loving hands are made to hold their own infants. Warm bodies meant to provide safety. Soft breasts meant to provide sustenance. All else is distant – sounds, sights; our newborn brains still have to learn to make sense of them, but touch we already know. Its comfort is instant. From that solid foundation we start to piece together the information flooding in from our other senses. We learn where we end and the world begins. We learn who is there for us. We learn where we fit in. We can learn to survive hunger, pain and fear without long-lasting damage, if held in a healing embrace.

What did I learn lying all alone in my cot, in the false safety created by my isolation? Something had gone terribly wrong and I had to be punished. Everything I needed was taken away. Warmth, closeness, love, the sensation of skin upon skin. The world had stopped communicating with me.

I can remember only darkness and a sense of danger. My physical pain I could no longer locate as coming from within. It seemed to flood me from the outside as soon as I moved with no holding restraint. My cries brought nothing but anger from overwrought staff. I learnt to keep quiet. That was the only way to survive. Still and quiet was safe.

A habit of a lifetime was set in.

A grim beginning but punctuated with golden moments in which the human instincts won through. The nurses who forgot the rules and made their caring fun. A flurry of talcum powder and giggles. Visits from my parents growing increasingly confident that I was not all bad news. My Dads sparkling green eyes seeming to say that it would be alright, he would return for me, and eventually he did.

Human beings need to be touched, not only when we are small babies, but all through our lives. It is a rational need. My early deprivation has only partially healed, and the healing has occurred through human contact. Living at home with little technological support, I had to be carried everywhere. I loved it. My best memories were of riding on my Dads’ shoulders, or tucked on his arm as we went off to the library, or the shops, or to the swings.

There are many kinds of touch stroking, caressing, massaging, washing, drying, hugging, carrying, wrestling, a whole language of which we are barely aware. I remember when I had my own daughter and she, having the same impairment as myself, also suffered the unavoidable pain of broken bones. She was not hospitalised. Instead of any medical intervention she demanded a warm hand placed firmly over the part of her body which had been injured. With this touch she was visibly able to relax and to sleep the healing sleep she needed. The hand had to remain in place all day and all night. The

instant I thought I would try and move she would go tense and her wail would start. We had to recruit and train volunteers to share this vigil from our circle of close friends.

I was surprised at how many seemed to instinctively understand why this was so important. As a result my daughter has never learnt to connect pain with isolation and fear, and our friends have learned how their hands can help a child to heal. Her recoveries were always remarkably fast.

It seems to me that this instinctive knowledge is being smothered under a weight of misunderstand-

ing, fear and exploitation. The massive profits to be made out of our needs have fuelled the development of vast industries the sex industry, the beautification industry, the ‘health and fitness’ industry, and the fashion industry to name but a few. All these have served to corrupt the language of physicality, to rob it of its original meaning. Everyday we are bombarded with images that link sexuality with almost everything we can buy. This is deeply confusing to us. It is rare to see images of physical closeness outside of this context and so the world has no framework to explain or validate the many ways we could have of using our bodies to bring comfort or healing to each other.

From a very early age we are conditioned to believe that the only way to give and receive physical closeness is in a sexual relationship. I recently overheard my six year-old great niece being taunted by an adult about her ‘boyfriend’ at school, whilst she became increasingly upset.

Already her innocent friendships are being distorted by the unawareness of adults.

The fear of sexual abuse from adults has greatly added to this.

No one now can touch a child, except their own parents, without feeling the world is questioning their motives. If a child is not receiving all the physical touch they need at home, and many are not, it is becoming increasingly rare for that need to be met elsewhere. A friend of mine who was a primary school teacher in the 1960s told me that everyday before playtime she would tell all the children who wanted a hug to line up before they went out. She always had a queue and often the first in line would run back and

join the end in order to get another.

“This” she said “Would never be allowed nowadays”.

Partly because of this, men are an endangered species in early years provision, and what a loss. Absent fathers are already painful realities for many children and for them the chance to make positive relationships with men in settings outside the home should be one of the main advantages of going to playgroup, nursery or school. In the UK only 1% of early years workers are men. What is this teaching young children? All the love and care, fun and energy that men can bring into the lives of young children is being denied to them. Men’s physical strength can be the promise of safety for so many children. Their rough and tumble games can be the only place for some children to test out their boundaries, take risks, or feel there is anyone there. How will boys learn to be gentle and caring if they see these roles only ever performed by women? How is it affecting both girls and boys to be raised in a culture which sees men as predatory, as potentially dangerous?

13

Disabled children as always are at the sharp edge of this changing culture. Although my story may seem extreme, and certainly conditions for children in hospital have changed quite dramatically over the last twenty years, many disabled children still suffer from the loss of physical closeness from others. The impairments themselves, if they reduce the child’s ability to move independently, may make initiating physical contact difficult, or impossible. Any contact will have to be initiated by the ‘other’, if at all.

(Take a moment to imagine what this would mean in your life now.)

Then disabled children may be subjected to physical touch, which is unpleasant or painful, such as the stretching exercises common in physiotherapy, or all the medical interventions involved in surgery.

The memory of these experiences can leave fear and confusion which get in the way of welcoming any kind of physical closeness.

Children with high-level support needs may have these met by several different people, none of whom love the child and none of who have been chosen by the child.

This is very different to having those intimate tasks done by someone who is trusted by the child – someone who is part of their emotional life. And when this all happens out of sight, in separate isolated and segregated settings, the potential for abuse becomes very real. Just as for all children in ‘Care’, institutional life is never safe.

Even when disabled children are not segregated, when they are living at home and going to their local mainstream schools or clubs, new waves of fear seem to

14

endlessly attack the human relationships for which we are fighting so hard. One of the latest cruelties to sweep the country is the widespread implementation of ‘No Lifting’ policies for children who cannot move themselves – even very little ones. A directive from the National Health and Safety Executive designed for manual workers lifting heavy weights at work has been translated into policies in all childcare settings. The need for ‘manual handling’ must be reduced to a minimum and done using mechanical hoists and equipment where possible. Living, breathing children have become ‘loads’. Already deprived of human contact, even this small avenue for closeness has been cut off in the name of ‘risk management’.

When my daughter was growing up, I couldn’t lift her myself. I had to teach many people how to lift her, and she became a true expert at this herself from a very young age. With the added complication

of brittle bones, her safety depended upon it. We both learned that there are people who cannot lift because of their own impairments, and people who cannot be trusted to lift because they did not know how to listen to a child’s instructions. But we also learned that most people are only too willing to be useful in this way.

Some even went to gyms to strengthen their bodies so they could manage the very precise lifts that had to be done when she had a fracture. I was surprised at how many people had to be taught how to lift safely, without hurting their backs, and how little thought they had ever given the subject. How great it would have been if lifting was considered a necessary lifeskill, taught at school alongside first aid and cooking. How much better even, if people were taught how important it could be to carry a child out into the world, or into your own living room.

If you met me now, you probably would not suspect how my early life began. You would have to know me very well to know that after more than fifty years, I am still not sure the danger is over, where I end and the world begins, if there is any thinking person alive on the planet except myself, if any important relationship will last, or whether I dare let even those who love me most hear me cry. It is still not easy to write this down or even admit it to myself. The long-term effects of the loss of giving or receiving human touch can affect your mind forever.

We need to start to think about reclaiming the language of touch, and reclaiming our bodies as the wonderful resource they can be to each other as we struggle to be fully human. © Micheline Mason

March 2004

EXAM BOARDS FAIL THE TEST The Joint Council for Qualifications (JCQ) has changed the guidance1 to exam boards about disabled students. This is cause for alarm because the changes are making it harder than before for such students to take practical examinations:

D E IL

“We have experienced difficulties with (The qualification board) about GCSE Dance for one of our students who, due to her impairment, is not able to jump. The board have said that she will not be able to gain higher than a ‘B’ grade and that they will be keeping strictly to their criteria.”

FA

Harrow School.

The JCQ state in the introduction to the new guidance:

“The changes to the Regulations and Guidance seek to enhance access for people with disabilities and other difficulties to the qualifications without compromising the assessment of skills, knowledge, understanding or competence being measured.”

This narrow interpretation is already preventing GCSE students with impairments being entered for examinations.

The exam boards are saying. ‘They can do the course but not enter the examination’ for a physically disabled student wanting to do GCSE Art, or ‘The rules for this year have been set and there can be no exceptions’. Statements such as this seem to go against the Disability Discrimination Act, which says adjustments should be made where students are at a substantial disadvantage and the adjustment must be material to their particular circumstances.

The JCQ state they do not believe their exams are covered by the amendments for trade and professional qualifications, but they then say they will operate the DDA. The problem is that they are interpreting it in such a rigid way that many more disabled students are being disadvantaged than previously.

It is true that at present public bodies such as the Joint Qualification Council and the exam Boards they represent in England and Wales are not apparently covered by the DDA. That is one of the reasons why the Government have introduced a Draft Disability Bill which will extend the DDA to cover all organisations carrying out a public duty and establish a new duty to promote disability equality for all public bodies.

You can read more of these discriminatory regulations on the exam boards website or www.jcgq.org.uk and e-mail your complaints.

Richard Rieser 1 JCGO Regulations and Guidance Relating to Candidates with Particular Requirements

15

THE LONG VIEW

by Colin Newton We so often take a very short sighted view when planning for the education of very challenging or disabled children. What is happening today, this week, this term or at best this year is the dominant preoccupation in the UK education system and elsewhere.

‘Darren has head butted the Teaching Assistant…this has gone on too long already, he has to go….’

The incident with Darren can preoccupy a meeting set to plan for meeting his individual educational needs. Yet a decision to change school placement will affect his whole life as well as that of the community in which he is a member.

‘What do you want to be when you grow up’?

How often have you heard this question asked of typical children? What was your own answer as a child to this question?

Colin with Nanny Warren and baby sister Jane 1959

However we so often will not ask this same question of disabled children and families will often say ‘we dare not think beyond today’ let alone into the long term future. So we go about planning for children with complex impairments as if they did not really have a long-term future and adulthood. We make major decisions such as placement in a special school or unit without having regard for the long term implications of such a move. The child when they do become an adult are greatly at risk of vulnerability and isolation from the wider community into which they find themselves a part, or not a part. We live in a society that does not have special shops or special bus stops….

Yet when we really take the long view backwards as well as forwards we can be truly amazed and can learn much to inform our planning. Lets start by looking back…

This is my mum’s mum, my maternal grandmother, my Nanny Warren. This wonderful lady was passionate about life, loved singing, playing the piano and photography. At 16 she played piano at the Crystal palace with a full orchestra. She played piano for the local Coop Juniors for many years. For most of the years I knew her she was largely house bound. When visiting Nanny Warren you would be regaled with stories of the war, of past musical concerts and people she had known. Deep into my adolescence and then on into my early 20s I would visit and absorb all of this. I would then be required to sing ‘ Amazing Grace’ at the old piano before departing. What drew me perhaps even more powerfully than all of this was Nanny Warren’s gift of being able to communicate something extraodinary over the space between us.

Unconditional love.

16

This was communicated largely non-verbally through the twinkle of an eye, a special smile a connection we both knew was present. Words to spell this out were few. Possibly ‘ You lovely boy’, might punctuate what was largely achieved silently. No special programme was needed between us to boost my self esteem, just unconditional love and acceptance readily received by me.

In fact the essential ingredients for inclusion were present in our relationship. Nanny gave me all I needed to be truly present. Complete acceptance, love and someone who would always listen to me.

I belonged.

Nanny Warren has been dead some 30 years, but of course she is alive in my heart, my mind and my soul. Part of her lives through me as it always does when we are well included by someone, their gift flows through us, stays with us and others benefit later. What a message of hope. We can do this today for someone. You are already doing this without realising it.

You may not have a Nanny Warren in your life, but you will have known someone, however painful, shadowy or dark your life has been so far, who stepped forward from the shadows and was there for you. Someone believed in you, reached out to you, helped you at a crucial point in your life or simply opened a door.

Remember them.

What was it about the relationship that made them so special? What did they bring? They may have been a teacher, parent, brother, friend, community person, or even a partner in more recent years. Recall them. What did they give you?

Reflect on people in your own life then ask others.

This is a key question, who do you remember who was there for you? What was it about the relationship that worked so well? These are the ingredients for inclusion. Here lays all the information we need to create more inclusive families, schools and communities. We have listened to hundreds of these amazingly magical

stories over the years and are constantly moved by the simplicity and wonder of inclusive relationship.

‘Just being there… accepting me for who I was whatever I did… encouraging… unconditional support… wanted more for me…saw something special in me… treated me as if I was part of their family…opened the door to their culture…made a special effort for me…’ The words go on…

These stories of love and connection are directly linked to the long view as people are there in our pasts there we are for others in the present.

The Worst Disability Some people like to haunt themselves with the question: What is the worst disability? We have no doubt that it is loneliness. That is the enemy. As you read this you will know of children that are pushing the system, that are very likely to be excluded or segregated. What you do in that child’s life can make all the difference to whether they exist within a network of fulfiling relationships or whether they become isolated adults. Anything you can do to ‘hold’ that young person within their mainstream community will help maximise their opportunities for longer term fulfiling relationships.

So this is where we return to the child who is hard to include and decisions we take about them now.

Imagine you are a child at school with a boy called Aaron. We can decide that Aaron is too difficult. He is aggressive, he keeps strangling Linda, he keeps having tantrums, thrashing around on the floor. He barely uses any expressive language and does not seem to be learning much. What to do? Is he just too hard to include?

We can go two ways….

We can decide that he is too hard to include. Let us send him off to a unit or special school.

We can decide that we will hang on to Aaron. We will work on understanding his behaviour and his relationship with Linda and others. Some days it will not be easy. We will include him.

When we roll the clock forward into the long view we see the full implications for our early decisions.

There we are on a bus 20 years on… we see a

17

large man throw himself onto the floor and begin thrashing around. Who is he? He seems weird and dangerous. Surely the worst excesses of a care in the community policy done on the cheap…This man should not be out on his own. No one knows him.

Or the same scenario, but this time you know him, it’s Aaron surely. You stand and lean over him ‘Aaron have you still got that cat?’ The man leaps to his feet with a smile on his face. You know him.

No, he still does not have much language, but he still loves cats and recognises your voice.

The prizes of inclusion over the long term are great and varied. Maybe many more people will recognise Aaron’s face and quite a few will know his name. A number may have learned of his interests and his gifts. A few may have active relationships going on with him still. He may have friends, he may even have a partner.

Michael Rutter’s (1982) famous Fifteen Thousand Hours: Secondary Schools and Their Effects on Children reported that a group of girls brought up in care interviewed as part of the long term aspect of his research reported that they could all remember someone who had made a huge difference to them in their lives. The person was often a teacher. What was particularly interesting was that when the researchers tracked back there was no indication of any change in the girl’s behaviour at the time. It was only years later that the full impact of these relationships emerged.

This is encouragement to take the long view however challenging pupils may be that we are working with.

Just holding in there, keeping the faith, believing in the possibility of change and in the value of the person, simply bearing witness or connecting in one of the amazing ways we explored earlier may be massively beneficial to the child involved.

If you wish to go further to ground the idea of the long view further what can you do?

Well it is possible to build long view questions into planning from the Early Years on. A key question

18

was well caught by John O’Brien in his work on transforming attempts to ‘assess’ into attempts to create portraiture:

‘What will it take for this person to have employment and real relationships as an adult? Who do we need to involve now in the person’s life to fulfil this?’

We may be asking these questions around a child who is aged 3 years… the long view will influence the answers.

We may also be exploring Herb Lovett’s wonderful question that he saved up for really complex case conferences full of all kinds of professionals gathered around an individuals challenging behaviour:

‘Who loves this person’?

Whatever the reply, Herb’s advice was that this was where you should begin.

In the context of the long view the implications are even more obvious. We may need to radically reach out to the unsung heroes of family and community life quietly holding the capacity to provide love and friendship in abundance if invited. We will return to the practical implications of this when we explore the keys of teams and the intentional building of relationships.

We will know when we have really worked on getting the long view right when in our work we can confidently ask disabled and challenging children:

‘What do you want to be when you grow up?’

Colin Newton Inclusive Solutions www.inclusive-solutions.com 0115 955 6045

Info and Events

A FREE Mentoring Scheme for Young Disabled People If you live in or around Chelmsford in Essex, are between the ages of 11 and 25 and would like to have a mentor I would like to hear from you.

The mentor will be a disabled person who can relate to the issues affecting young disabled people.

S/he will be trained in mentoring skills and be a positive role model, helping you to make choices about your future, talking about topics that are important to you and discussing what you want to achieve in your life.

Also, if you are a disabled person and would like to volunteer as a mentor, able to give between 4 – 8 hours of your time each month, please contact me.

Margaret Shea, Mentoring Co-ordinator Tel: 01245 392311 Text phone 01245 392302, Fax: 01245 392301

SCOPE SUPPORTS The 2020 Campaign SCOPE, the national charity for people with Cerebral Palsy may be the first major disability organisation to support the campaign to close all segregated schools by the year 2020. At a meeting held at the end of December 2004, SCOPE invited many leaders from the Disability Movement to help them design a workable strategy to relocate their services for disabled children from their special schools to the mainstream. They have issued a public statement saying that they support the 2020 campaign in principle. More news to follow.

Inclusion Helpline

0800 652 3145 Tuesday, Wednesday and Thursday 10 - 12am and 1 - 3pm

YOU CAN NOW CALL THE HELPLINE FOR FREE!

Textphone: 020 7582 5333 Calls taken by trained and experienced parents.

19

This magazine is published by: The Alliance for Inclusive Education is a national campaigning organisation led by disabled people. The Alliance works to change laws, practices and procedures which discriminate against disabled young people and prevent inclusion. The Alliance works together with allies to build a social climate in which everyone has a valued place.

ALLFIE: Unit 2, 70 South Lambeth Road, London SW8 1RL Tel: 020 7735 5277 Fax: 020 7735 3828 Email: info@allfie.org.uk Website: www.allfie.org.uk Funders: Barrow Cadbury Trust, Platinum Trust, DfES, Comic Relief

In collaboration with: Disability Equality in Education delivers Inset Training on Disability Equality and Inclusion to schools and training and consultancy to Local Education Authorities. Training is provided by disabled people who are skilled presenters and trainers. The training network is supported by the Director, Richard Rieser, and the Training Co-ordinator, Chris O’Mahony.

DEE: Unit GL, Leroy House, 436 Essex Road, London N1 3QP. Tel: 020 7359 2855 Fax: 020 7354 3372 Email: info@diseed.org.uk Website: www.diseed.org.uk Funders: Platinum Trust, DfES, Barrow Cadbury Trust, Comic Relief

Parents for Inclusion is a national organisation of parents of disabled young people. Pi runs a telephone helpline, and holds workshops for parents and professionals. Working at grassroot level Pi supports parents in 23 schools in S. W. London through the setting up of inclusion groups. This model is to be developed regionally.

Pi: Unit 2, 70 South Lambeth Road, London SW8 1RL. Tel: 020 7735 7735 Fax: 020 7735 3828 Email: info@parentsforinclusion.org Website: www.parentsforinclusion.org Helpline: 0800 652 3145 Tues, Wed, Thurs: 10 -12am & 1 - 3pm.

Calls are taken by trained and experienced parents.

Funders: Esmee Fairbairn Foundation, Platinum Trust, Paul Hamlyn Foundation, Association of London Government, Lambeth Business Partnership, Lambeth EYDCP, SureStart Kennington,

DISABLED PEOPLE, PARENTS OF DISABLED YOUNG PEOPLE AND ALLIES, WORKING TOGETHER We are working together to educate, facilitate and empower everyone who wants to be part of the growing inclusion movement. Together we want to bring down the barriers so all young people can learn, make friends and have a voice in ordinary school and throughout life. For each and every young person, this is an essential human right.

“ALL OUR CHILDREN BELONG TOGETHER”