Inclusion Now Articles Volume 11
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Inclusion at West Bridgford Junior School
All On One Leg - Poem by Asma Bhol
Young Pioneer - Anthony Ford takes disability equality
to his college
The Welcome Project - A new resource from Pi
Why Love Matters - Book Review
Touch - Our First Language by Micheline Mason
Exam Boards Fail the Test - Joint Council for Qualifications
changes guidance
The Long View - Article by Colin Newton
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:
(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:
"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 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
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
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".
"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 name-called 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 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:
"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.
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)
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'.
Inclusion Now readers are invited to participate and check out their own understanding
but time yourself - you have only ten minutes.
Question 1:
In this photo (picture of Anthony in the middle of three girls) which is his
PA?
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?
ANSWERS:
Q1: 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!
Q2:
Medical Model - 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.
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
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 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.
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, Paediatricians,
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"
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.
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 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.
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.
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.
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 is possible. However: The early relationship
and stress patterns do set us up on a likely path through life. The more ingrained
a habit the harder it is to kick it. In the second part of the book Sue Gerhardt
traces the links between early child hood experiences and mental health problems
in 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 given right at the start to parents when a new baby is born.
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.
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.
"So the first 'higher' brain capacities to develop are social, and they
develop in response to social experience. Rather than holding up flashcards
to a baby, it would be more appropriate to the baby's stage of development
to simply hold him and enjoy him." (p38)
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
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 well-meaning 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 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.
I can still feel the withdrawal of the world from me. The stepping back. Grief
replaced delight, fear replaced intelligence. The white-coated 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 misunderstanding, 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?
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 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 child-care 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 life-skill,
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:
"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."
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
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?
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…
(picture of Colin with Nanny Warren and baby sister Jane, 1959)
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 extraordinary
over the space between us. Unconditional love.
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
fulfilling 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 fulfilling 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 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 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