Inclusion Now Articles Issue 3
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Black Parents Unite - workshop run by Pi
Thinking about Empowerment - by Micheline Mason
Young People Empowered - PAs Workshop
School as an International Community - interview with Head
teacher Chris Searle
Breathing Hope - A parent reflects on the 'Not in My
Name' March for Peace
CASTLE - An organisation that helps schools to include young
people with high-level support needs
Stuck in Neutral - Book Review
My daughter Rosie was born a wonderful, bright, sociable,
humorous, inquisitive little girl. She is also a child with high-level support
needs. When she was very young I took her to the Hornsey Centre in North London
where she received one-to-one support. Her therapist advised me to keep her
with a lively peer group and from that time I have been determined that Rosie
should receive a mainstream education.
The first mainstream school I tried was quite positive but said that Rosie could only come when she had the right equipment, including a powered wheelchair and a communication system. Rosie's first statement did not name this primary school but instead recommended a full time trial place at a special school in order to be assessed for therapy and appropriate aids. My big mistake was agreeing to this.
Once in the special school everyone argued against my desire for her to be transferred to the mainstream. I lost my first tribunal on the grounds that Rosie's inclusion would be an 'inefficient use of resources'. They told me instead that the special school was relocating to a shared site with a mainstream school into which Rosie could be integrated as appropriate. I had no choice but to agree to this.
When I asked how much time Rosie was spending in the mainstream school they said an hour a week. As I continued to question this, they upped it to two, and then when literacy hour was introduced it went up to five. They said they only had two Learning Support Assistants to seven children in the special school and this was all the time they could be spared. My request for Rosie to have her own assistant was considered unreasonably demanding. Rosie was also only receiving two 50-minute sessions a week on a computer, which is her only means of communicating or doing her work.
Still determined, I approached my local junior school and, at last, enough of the staff were supportive of me and Rosie that the head teacher agreed to accept us into her school. A full-time assistant was recruited and spent three weeks working with Rosie in her special school. The LEA are also honouring Rosie's statement for the first time by paying independent therapists I recommended and trust.
They all began together at the new school last term and, despite many hiccups yet to be solved, our dream is beginning to come true. The other children in the school are thrilled to be at school with Rosie. Mums are saying that she is all they talk about when they come home. She has gone to her first party. Her dad takes her to school in the car in the morning but we come home on an ordinary 'low floor' bus in the afternoon with all the other mums, dads and children. Sometimes we get off the bus and pop in to play with Rosie's cousins who live near us. At weekends and evenings Rosie does not have to be lonely any more because she has friends we can call up and invite round.
Rosie is finding it a bit difficult adjusting to the much higher expectations of her in mainstream school. She does tire more quickly than other kids because she has to put a lot of physical effort and concentration into everything she does, but one thing Rosie always has is a great deal of energy for play and now she has the opportunities and is learning the language of her peers, what is cool and what's wicked.
I would of course like to thank the new mainstream school, kids and staff, for giving Rosie this opportunity in education and in life, and hope that they realise how very important it is to us all.
In the last issue we outlined the historic and far reaching changes that the bringing of education under the Disability Discrimination Act will have for schools. In this issue we examine the implications for post-schools education, think about some of the problems of definition and think about some good practice responses.
Chapter 2 of Part II of the SEN and Disability Act 2001 covers post school provision including Sixth Form Colleges, Further Education Colleges, Universities and all Institutes of Higher Education, Adult and Community Education and Youth Services.
The Act comes in to force from September 2002 and
a.. makes it unlawful to discriminate against disabled students and prospective students in admissions, in education and associated services and in exclusions;
b.. sets out a duty on colleges and universities not to treat disabled students less favourably than non-disabled students;
c.. sets out a duty on colleges and universities to take reasonable steps to ensure that they don't put disabled students at a substantial disadvantage;
d.. provides for remedy through the County Court/ Sheriff Court in Scotland, with a remit to hear disability discrimination cases and to award financial compensation and make orders to change practice;
e.. requires the post-16 sector to make physical changes to their premises to improve access and to provide extra support and services for disabled pupils on an anticipatory basis;
f.. requires, from September 2003, the post 16 sector to provide aids and services for disabled students
g.. requires, from September 2005, the altering or removal of features in Post-16 education where disabled students are placed at a substantial disadvantage.
In a number of ways the legislation is clearer than for schools. Because there is no clear entitlement to Special Educational Needs support in the Post Schools sector the provision to make aids and services available to disabled students will have a bigger impact than in schools where the new duties have to intermesh with the existing SEN provision.
In addition the direct duty to remove or alter features such as stairs, narrow doors or inaccessible libraries, laboratories and lecture theatres will have a big impact on the physical environment on campus. Separate money has been made available as a grant of £172m for 2002-04 for the Access works.
FE: £20m 2002/3 & £46m 2003/04
HE: £15m in 2002/3 and £41m in 2003/4
Adult and Community: £11m in 2002/3 and £24m in 2003/4
Youth Service: £7m in 2002/3 and £8m in 2003/4
This is a good start but much more will be needed as it will in schools to make education buildings accessible. Nevertheless this money will focus thinking about removing physical and communication barriers by 1st September 2005.
Many who work in the sector are unaware that they are preventing people with learning difficulties getting onto Level 1,2,3, 4 courses by normative assessment techniques which have echoes of the eugenicist past of education. For real equality there will need to be a change in how teaching and learning are viewed and what constitutes educational achievement. People with learning difficulties should be able to access higher level courses that lead to employment and these courses need re- designing top accommodate different styles and paces of learning. Some progress has been made but notions of academic excellence often hide elitist assumptions which form a real barrier to achievement for all.
Who is a disabled person under the ACT?
To qualify one has to have "a physical or mental impairment, which has an effect on his or her ability to carry out normal day to day activities. That effect must be substantial (not trivial or minor), adverse and long term". In schools this definition is complicated by the dual definition of Special Educational Needs because the lines between the two are very fluid and would be individual to the student concerned, especially as some students have more than one impairment. The good practice approach is to treat all these pupils as disabled in planning and providing policies, practices and procedures, rather than get into definitions.
Parents for Inclusion has its office in Lambeth, an area rich
in black and ethnic minorities and also the second most segregated LEA in
England and Wales.
It was very clear that the high proportion of young black people in special schools and EBD units in Lambeth is the result of a double oppression: institutionalised racism and disablism. A group of black parents met regularly to work out what to do about this. They had a day using the PATH* planning tool which led to Parents for Inclusion getting a grant from the Health Action Zone - Lambeth to fund a project for six months. This was to research and develop a proposal for a full-time development worker to address this issue. The group continued to meet for the six months during which time the co-ordinator, Maureen Johnson, organised a wonderful race equality day for all staff at Parents for Inclusion. She also organised a workshop for parents called 'All Our Children Belong - A workshop for black and minority ethnic parents of disabled children celebrating diversity'
"I celebrate life, my life, all life and triumph over all barriers"
"I celebrate who my children are, including and because of their disabilities"
"I celebrate the strength to fight for our children's rights"
"I celebrate the joy my child brings into my life, her beauty, affection and caring"
The theme of the workshop was celebration - celebrating their
children, celebrating themselves, celebrating their achievements and making
plans for the future. These included:
a.. To bring in more people, to network and to improve communication with the black community
b.. To write up their stories for Inclusion Now magazine
c.. To help parents listen to their children more
d.. To design and produce their own publicity materials
e.. To connect with DEE's black and ethnic minority trainers and to get more Disability Equality Training in their schools
f.. To train the professionals who serve them
g.. To organise inclusive after school clubs and holiday play centres
h.. To fundraise for a development worker for Parents for Inclusion (Parents for Inclusion is now fundraising for this post)
*PATH stands for Planning Alternative Tomorrows with Hope. It is a structured day led by two trained facilitators to help groups dream together and to make more detailed plans to move towards their goals.
"Why Inclusion? What else should I seek? A separate existence
in any sense different or apart from our family is not something any of us
would automatically choose. That choice was made for us. We agreed to a separate
school to her siblings, and away from home, as it was cruel to keep her at
home all day, every day and no provision was made for her in our area. The
consequences however have been devastating for our family. It has been impossible
to have joint family activities without elaborate and extensive preparations,
which may even then clash with her school arrangements. We rarely get to meet
with her friends or their families, therefore home visits and overnight stays
are out of the question. Her siblings are not conversant with her communication,
social and access needs and either leave her out of activities or politely
attempt to include her as one might a stranger"
Quote from a parent taken from the 'Black and Minority Ethnic Parents Group Report' to be published by Parents for Inclusion in 2002.
We all talk about the need to empower young people, but what
does that word mean? Is it something that can be taught like history? Is it
some sort of psychological medicine that can cure crushed spirits and create
an extrovert from a wallflower?
My belief is that we are born powerful. I think the task is not to give people power, but to stop taking it away. I have been thinking about how I set about trying to protect my own disabled child from losing hers and suggest that there are three essential components to empowerment.
The first is self-confidence. How did I attempt to nurture self-confidence in that tiny 'brittle' baby I bought home from Hospital on a foam mattress? Looking back I can see that it was a full time job. Gentle touches, body massages, smiling, looking at her with a delighted (not worried) expression, responding to her signals, allowing her to teach me what she needed. (This was quite easy as I knew nothing about babies). I chose friends who would be equally delighted with her to me my helpers in those early days. I avoided talking negatively about her in her earshot even when she was too young to understand speech. I shared any worries and frustrations in another room. I did not even let doctors describe her in anything other than positive language to her face. They were surprisingly good about this, but how much this was because I had the same impairment I will never know.
I had noticed how adults unawarely laugh at young children, and humiliate them when they get things wrong or say 'funny' things. I always tried not to do this, and to stop others doing it because I was sure that this is one of the ways we become unsure of ourselves and afraid to be ourselves.
I had also noticed how adults lie to young children by giving them silly explanations or half-truths when they ask questions. (I have a burning memory from my childhood of a parent leaving her two year old in hospital by telling her she was going to get her a drink of orange, walking our of the ward and going home. The child was still standing in her cot crying inconsolably two hours later, staring at the door, waiting for her Mummy with her drink. I vowed then that I would never do anything like that. How could that child trust adults ever again?)
Praise not punishment, a thousand pieces of positive feedback, clear explanations of boundaries and expectations, all this creates a person who feels loved and alright about themselves. There is no substitute other than at least one adult in a parental role who can bestow this daily upon a child. No one does well without it and it is why I am against institutional provision for children, disabled or not.
The second component is information. We in the inclusion movement spend much of our time explaining that impairment is not a cause if unhappiness in itself. It is the way people are treated that is the problem we all need to address. To hold out to a disabled child that they are not the problem, that they don't need to be cured to be valuable, and that they have much to offer the world is essential if that child is to keep their self-confidence in the face of the oppression which will inevitably come their way. This information can be taught in courses, workshops, through the media and by friends and advocates. It is a form of political education which has helped many disabled people to make sense if things.
The last component is resources. My daughter's first resources were my friends. I truly believe that it was those people who came and allowed themselves to be her arms and legs whilst she steered them around our flat by voice control, going to things she wanted to explore - taps, ornaments, food, toys, water, which led her to believe that she could rely on other human beings to co-operate with her ideas and bring them to fruition. I am sure this has helped her hugely with the task of directing her personal assistants and other people whose help she has needed. Later she invented mental scripts for endless pretend games in which everyone had a part. I was always amazed at how other children would submit to this directorship, and come back for more.
As well as this vital human resource, we soon started the long miserable battles for material resources - wheelchairs. transport, bath hoists, and for facilitators at school and at home. Here my empowerment was so important as we were forced to engage in bureaucratic battles of marathon proportions. Yet without these resources even the most self-confident and well informed disabled people like us, are trapped and powerless. With the right resources our lives can be transformed.
SELF-CONFIDENCE + INFORMATION + RESOURCES = EMPOWERMENT
Our fight for inclusion is a fight for empowered parents, empowered teachers and empowered young people. What an attractive goal to have!
I have been using personal assistants socially since I was 11 years old. (I am lucky to have funds from a medical negligence claim.) During my teens (I am now 17) personal assistance from people my own age has been essential in enabling me to lead a very normal (and at times abnormal!) life. Without assistants, I would be bored out of my pants (and probably labelled EBD) and my mum would have conked out by now. I took one of my PAs, Anna Morgan, with me on a residential course run by and for communication aid users. While there, we thought it would be a good idea to run something similar for young people wanting to learn about using and being a personal assistant. Over the next few months, we kept thinking and talking about it and the idea became something we really wanted to do.
We needed two things to make it happen - more people to help and money. So we enlisted a group of friends (disabled and non-disabled; we were determined it would be an inclusive course) and a mentor and applied for a "Give it a Go" Millennium grant via Scope. I had become very friendly with Lucia Bellini at Chicken Shed Theatre and she had taught me an awful lot about access and inclusion for her particular impairment (she is blind). She is also passionate and fiery about inclusion, like me, so was an obvious person to ask to help. We asked Anna Spivack, who had vast experience as the sibling of two autistic brothers and as a playworker at our local inclusive play centre. Also involved was my very dear friend Becca Young who had befriended and stuck by me through my awful experience at mainstream secondary school. She had often acted as my PA on a voluntary basis and had acquired an impairment herself, so was ideal for the course. We asked Nick French, who was then working for Circles Network, to be our mentor. Besides all his experience in work around inclusion, he was the ripe old age of 29 and could act as "responsible adult" if, in our enthusiasm, we got carried away. As the Millennium Awards were only granted to disabled people, Lucia and I made the application, greatly assisted by Vicky Keeping and Caz Greenwell of Scope (who also happened to be the mum of my friend Wendy who came on the weekend as my personal PA - that's networking for you folks!). We began meeting up regularly on Sunday evenings and I have to admit we were all a bit gobsmacked when we finally heard we had been awarded an £8,000 grant. In fact, sheer panic set in - we really had to do it!
Two of my hobbies are computer graphics and writing, so I enjoyed producing a poster and leaflet for the course and writing a press release (which our local paper managed to screw up by adding the headline "Youngsters' Scheme to Help the Disabled" ugh!). We mailed the poster all over the place and were thrilled when the first application came via email. Despite our initial fears that no-one would apply, we ended up with 10 disabled young people and 10 non-disabled young people, together with our "management team" and a group of back-up paid PAs. We booked the Youth Hostel in Rotherhithe (the only wheelchair accessible one in London) for 3 days and 2 nights in August. We were determined that the weekend would be inclusive and were particularly pleased that two young men with learning difficulties and a wheelchair user applied to come on the course to learn how to be a PA. No stereotypes on our course!
We then had to plan the activities and workshops, all the time trying to ensure that they were inclusive, accessible to everyone and, most of all, fun. We wanted the two groups of people to enjoy each other's company. The workshops we ran included Disability Equality, hiring, firing and use of PAs, protection from abuse, Direct Payments etc. We also had trips out using public transport and generally having a good time together. Sian Vasey from National Centre for Independent Living also came to talk to us and gave us some really useful publications and advice. We decided to give everyone who came a certificate, writing each one separately detailing what they had achieved, as everyone did achieve something whatever their ability.
Judging from the feedback forms, the weekend was a success! Of course, there were some minor (and major) hiccups. One of our paid PAs managed to lose a whole group of people on a "short cut" back from the cinema and poor Gemma, who was so looking forward to the weekend, was rushed off to hospital with a major seizure (not totally unexpected) and I, in my usual style, lost it a few times under all the stress and blew my top! However, some of the quotes were:
"Social inclusion in action"
"Andy came as Peter's nanny, went home as his mate"
"I've never been anywhere else which I would call total inclusion"
"We made pigs fly"
"Learned well, played hard, had fun!"
"Before this, learning has never been so fun!"
The young people who came were a fantastic group of people and everyone got on well. I can honestly say that whether or not you were disabled made no difference whatsoever, we were all young people enjoying ourselves and learning new things. Some of the trainee PAs had never spent time with disabled people before and we had no trouble accommodating the wide range of impairments, including severe learning difficulties, physical and sensory impairments. We even managed a bit of matchmaking and two of the young people are now "an item".
Lucia, I and the rest of the team feel really proud of ourselves and are already planning Empower 2002! Who would have thought two 17 year old crips could pull it off!
For further information on Empower 2002, contact Lucia Bellini or Katie Caryer on Empower2001@hotmail.com
21a Muswell Road, London N10 2BJ
020 8444 2866 (phone & fax)
PS to Polly Toynbee. What a good job we weren't aborted before birth!
(Polly Toynbee angered many disabled people and their allies when she wrote a controversial article in August 2001, 'Rights are for the Living', saying: "For a woman to choose not to have a disabled child but to have another one instead is entirely rational".)
If anything good is to come from the events on September 11th,
it is to make us all realise how dangerous it is for we humans to know so
little about each other.
Inclusion means refusing to stay ignorant about people whose lives are different to our own, even if that learning includes painful truths about ourselves and our pasts. The following two articles begin to look at how we can respond to this challenge.
"In the hearts of our inner cities are classrooms of
the world, and the world beats in our classrooms" Chris Searle, from
'Living Community, Living School' Chris Searle was a headteacher for five
years at an inner city school in Sheffield called Earl Marshal School. It
was just before the 1993 Education Act the introduction of the National Curriculum.
During this time the school published a series of anthologies written by the
young people about their lives and their community*. Inclusion Now interviewed
Chris Searle about his work and his vision for our education system.
Q: Who is school for?
A: School is for everyone who works within it. It is for students, to validate their lives, open up meaning, see what their struggles and their families struggles have been, and to equip them for the future. It is for teachers to exercise their imaginative and pedagogical skills, to allow them to learn from students and their families, and to create a dialogue in the classroom. It is to empower them and their communities.
Q: When you were a headteacher in Sheffield, how did you put these beliefs into action? A: I believe students should feel that school belongs to them. They should be directly involved in control through democratic forums. But it was more than this. We found all kinds of ways for the students to show and be proud of their own cultures and languages and the important things in their lives. They initiated all sorts of fundraising projects for flood victims, refugees and involved themselves in other internationalist issues which were important to them. The English children got involved in all that. We did 'herstory' projects in which the girls, their mothers and grandmothers told their stories. For example, during the Gulf War,Yemeni parents came in and gave in-service training to our teachers so they could help conduct informed debates about the reality of the Arab world. Young people learnt so much about the world in great detail through their classmates and their families. We did oral history projects and wrote and published the anthologies. They loved it.
Q: How did the white English young people feel about this? A: They were completely involved. They told about their parents and grandparents and documented a living working class history. What we found was all the similarities between workers round the world and women round the world.
Q: Do you think it helped to challenge racism? A: It did because it created an internationalist culture where the young people were comparing and contrasting instead of competing. We created our own curriculum through the publications.
Q: They must have felt very proud of that? A: They were, and so were their families.
Q: Were you able to turn that into recognised academic achievements? A: We could then. We brought it into the GCSE Mode 3 humanities curriculum and the English curriculum and it was accredited as parts of their courses. It is very difficult to gain examination status for this kind of work any more. Racism can flourish again partly because the National Curriculum is culturally exclusive.
Q: One of the reasons we believe in inclusion rather than integration is that integration for disabled children does nothing to teach young people about our struggles and histories as disabled people. What do you think about this?
A: It think it would be a deeply motivating project in schools to explore the history of disabled people all over the world and to tell of their struggles as a people.
Q: What do you feel about what is currently happening in the education system?
A: Well I have just written a new book called 'An Exclusive Education'** which sums up my impressions of the current school system. I know from teaching teachers at Goldsmiths College that young creative teachers are getting fed up and leaving education. Young people too, are often compelled to learn facts which bear no relationship to their experiences or cultures or anything which holds their lives together. More and more, they are losing interest in learning, becoming alienated.
Q: What should we be doing about it? A: Teachers and young people in schools must keep challenging the system. They must keep in mind who school is for and what really matters. I would like to see a culture of defiance in schools where they take on the fight for a creative, internationalist curriculum against those who are stifling it. Teachers should struggle for and alongside their students.
*See 'Valley of Words' published by Earl Marshal School and 'Living Community, Living School' published by Tufnel Press
**'An Exclusive Education' by Chris Searle is published by Lawrence and Wishart
My Two Countries
I was born in Britain
In the town of Sheffield.
Sheffield is the city where I learned
Everything I know,
Sheffield is the city for me.
Her cold air is in me, no matter where I go
My mind, my heart won't leave the place,
The place is so dear to me.
I would love to go to Yemen
The country of my ancestors,
To breathe the sweet, warm air
And taste the freshly picked fruit.
I am so proud to be a Yemeni,
I won't change that for the whole wide world!
I want to be part of building a better
And brighter future for the whole world
In which the people
Great and small
Rich and poor
Black and white
Live in a happy and healthy world.
But deep, deep down inside
Sheffield is the place I long to stay!
Nadia Saleh, fromValley of Words
It's only a pencil
Here I am looking at something that holds my whole life.
If I let it go my whole life will be gone.
Not only my life, but my family's as well.
But who cares? After all, it's only a pencil.
It's only a pencil, but look what I can do with it.
I can write a letter for help with it.
I can learn at school with it.
I can teach my family with it -
If only we had more pencils and less guns.
Joe Carlisle, Living Community, Living School
by Preethi Manuel
The walkway was a neat design of this much space for horses and walkers and, with a bold white line demarcation, a smaller space for cyclists and rollerbladers who were criss-crossing each other at what appeared to be at dangerously high speed. The 20 degrees Celsius for the middle of October certainly made this walk in Hyde Park quite unusual, the sudden warmth arriving after a spell of cold, wet weather when all you wanted to do was
sit at home with a hot cuppa. Today it felt as if you'd had your birthday and enjoyed it all, only to discover another gift arriving unexpectedly. So my footsteps had that little lilt to them. The wheelchair before me rolled on effortlessly, now and then being manoeuvred by Parvez, the temporary Care Assistant.
The two Somalian girls in our group looked around 16, dressed in loose black clothes, not fully Muslim or fully western, something in between. They had watched me negotiate my daughter's wheelchair out of the 328 bus at the end of Kensington High Street. I was protecting my furled placard stuck onto two bamboo sticks and complaining to Parvez on how we were never meant to come this way, how rude the 139 driver had been at West Hampstead by refusing to board us and humiliating my daughter in front of all the other passengers and for my impulsive decision to take the next bus, which just happened to be the 328. That's when the girls had stopped gazing and come rushing towards me from the pavement which was teaming with shoppers and asked excitedly "Are you going to the march? Which way is it?" "Just come with us" I had said, happy for the extra company. It was their first march and their anticipation was infectious.
We discovered what a mixed bunch we were - there was my daughter Zahrah, 14 years old and half Jamaican and half Indian, there was me, Indian, there were the two Somalian young girls and then Parvez who was half Persian and half English.
We joked and laughed and just as we were beginning to build up a bit of sweat, we saw them. Crowds of them. In unison, we stopped chattering. I felt as if my lungs were suddenly being filled with a different air, something more heady and powerful. Immediately before us was a wave of placards jostling in the teeming crowd. For a while we couldn't see the people carrying the placards because they were obscured by the concrete enforcements to the underpass but as they turned the corner leading towards Piccadilly, they were clearly visible. A pumping mass of human energy most in casual trousers and T-shirt but some dressed in fancy wear - party dresses or white boiler suits, chanting, whistling, shouting, megaphones, a cacophony of sounds, and beyond it all, the droning sound of a helicopter circling above. 'Stop the War' 'No to Revenge Attacks' 'Socialist Workers Alliance' 'Stop this bloody war' 'Peace Now' hounded the placards in bold letters.
"My goodness how did they all get placards?" I thought because I had carefully brought my own and unfurled it. 'Not In My Name' it read, the placard I had saved from the march outside Downing Street which I had attended the day after the USA had started bombing Afghanistan. I had watched the recent events through television, like millions around the world: the attack on the twin towers in New York, the connections made with Bin Laden and the angry Taliban groups, the preparations for retaliation and then the flames erupting in Afghanistan. My heart had sunk, knowing even then that I was witness to an event that would forever turn world history - a potent cocktail of hate and rage, terror and sorrow, an intoxicating mix of the most powerful nation in the world pitted against a poor nation with an enraged and infested leadership, the in-between nations like Pakistan sitting nervously on the side and then us, ordinary people, powerless spectators in this ghastly fiasco. The death knells rung in my head - the 50,000 killed in Vietnam by the CIA, the 17,500 killed in Israel's invasion of Lebanon in 1982, the deaths in Chile and Nicaragua, the one million killed in Indonesia in the mid 1960s, half a million dead children in Iraq, the continuing arms trade, the 6,000 dead in New York, hundreds dying in the Afghan War grandiosely named Operation Enduring Freedom . . . I knew I couldn't watch it any more, I had to be here. Somewhere. Somewhere that breathed hope. I wouldn't care where.
When I looked up, there were throngs of people, tens and thousands of them, as far as your eye could see, which was to the end of Piccadilly circus by which time we had found a crossing, near the Ritz to be exact, when we could join the protestors. We were welcomed in, people clearing a space so that the wheelchair could be accommodated. As I paused to put Zahrah's shoe back on, the part of the crowd we had joined overtook us and with it were swallowed our two Somalian companions. "Never mind" I said, "they were so excited, we wouldn't have been able to stop them".
I breathed the air - it smelt of resistance and subdued solidarity as the drums rolled behind us and hundreds of feet shuffled before us, adjusting to the ebb and flow of the human traffic. Despite the noise, it was a quiet, caring humanity surrounding us. It felt safe. Safe to be here. Away from the political war mongering, away from journalists and newscasters on TV churning out soundbites, away from desperate leaders engaging in desperate acts. Some day perhaps we will make more sense of this mayhem, this turning point in our history. But for now, it just felt good to belong in this shuffling small space, amongst a crowd of absolute strangers.
One of the founder members of the Alliance for Inclusive Education
now runs an organisation for schools and LEAs to help them include children
with high-level support needs.
Marion Stanton is a trained teacher who became a parent of a child with high-level support needs. Believing deeply in inclusion she fought for her son to be educated in the mainstream. Witnessing the fear this challenge created in mainstream teachers, Marion decided to develop a specialism in teaching such children. At first she got paid by working privately for parents whose children were at home, or who needed an advisory teacher to support an inclusive placement. Eventually there were enough clients that she was able to start her own organisation, CASTLE: Communicative and Supportive Teaching / Learning Environment. As CASTLE became established it became easier for Marion to fund CASTLE services through LEAs and schools rather than individual parents.
CASTLE offers help to mainstream schools in learning how to include a particular child with 'severe' or 'complex' impairments. They can:
a.. Help assess a child's communication needs and help obtain the right technology.
b.. Train the child and staff in their use.
c.. Advise on access to the curriculum and how to develop learning and thinking skills.
d.. Train children and supporters in Facilitated Communication and each year run a conference led by Rosemary Crossley, the initiator of this method.
e.. Help schools to use the 'Index for Inclusion', a long-term tool for change. "Without this kind of support, schools are tempted to miss out the whole thing about changing the school culture, one of the most important bits", Marion said.
As well as assessments and training, CASTLE also provides on going support to schools. Her services are now so in demand that Marion employs 4 teachers who she has trained to do the work. This number is rapidly growing and a Northern branch is being set up with the support of RADAR and the Bolton Institute. CASTLE still works for individual families, offering advocacy, free of charge, to parents to help them access the services they need.
Working alongside Marion at CASTLE is Rose Parnis. Rose runs a Youth Club in Islington, the focus of which is young people who are disabled or in danger of social exclusion. Young people come from the local estate, from Pupil Referral Units and from Marion's list of young people she assists. Fun is the point of the Youth Club, and a chance for all the young people to work collaboratively on projects they really enjoy such as DJ workshops, Animation, making sound tracks and computer graphics. Rose has just got a 'soundbeam', a piece of equipment that enables young people with very little controlled movement to make a controlled input to electronic music. Experimenting with what is possible is one of the strengths of CASTLE.
The relationships between the young people are great and for the disabled young people who have not experienced life-long inclusion, it is an opportunity to really be part of mainstream youth culture. Marion and Rose are determined to show that inclusion is possible for all. What they are discovering at the CASTLE Youth Club they wish to see influence all mainstream youth services.
If you wish to contact CASTLE email firstname.lastname@example.org or write to CASTLE, Scholefield Road, London N19 3ES Tel and Fax: 020 7686 2405
"Not being able to talk doesn't mean you have nothing to say".
More Money for Communication Aids for Disabled Children
£10 million has been secured by the DfES for a project designed to help provide communication aids for disabled children. The two main aims of the project are:
a.. To use information and communication technology (ICT) to help pupils with communication difficulties to increase their access to the curriculum
a.. To use ICT to help ease the transition of such pupils to employment or further / higher education thereby helping to ensure equality of opportunity
The project will be managed by BECTA on behalf of the DfES. Some organisations may be offered a seat on the steering group or other forms of involvement.
1 Voice is a voluntary organisation seeking to build a network of information and support so that families can support each other to obtain and learn to use a communication aid.
If you are interested, contact Tamsin Crothers, Secretary, 1 Voice, PO Box 599, Halifax, HX1 2XT
Stuck in Neutral by Terry Trueman, Hodder Children's Books.
Review by Lois Keith.
Earlier this year, I received a preview copy of book from the editor of Books for Keeps, an excellent monthly magazine about children's literature. I think I must be their unofficial 'disability correspondent', they often send new titles with a 'disability theme' my way. Some fall into old bad habits of using a disabled character to play 'second fiddle' (e.g. Bobby, disturbed by his parents divorce/ in trouble with the law/coping with death in the family etc. meets a disabled character called Billy and after a while, knowing Billy turns Bobby into a better person). Some writers are well meaning but lazy in their research (e.g. Samantha is an independent wheelchair user, capable of careering round the streets and rescuing her brother from a dangerous gang but is incapable of pushing herself to the lift and has to wait for the school bully at the end of lessons). But some new books for children have interesting young disabled characters and imaginative story lines.
Then I received Stuck in Neutral. The quote from 'Amazon Editorial Reviews on the back cover (these are usually written by the publisher) tells us that 'Stuck in Neutral' is 'a truly unique journey into the mind of a truly unique character.' My own response was to find this book so unpleasant and disturbing that I rang the editor with the warning that although I had submitted my review, he may well prefer not to publish it. I knew that my view was likely to be a minority one. In my published review in Books for Keeps, I wrote. 'No doubt other reviewers will call this a brave and moving account or something similar but I would be very reluctant to put this book into the hands of young readers just as I would not give them a racist book or one which told the story of how terrible it is to grow up gay or lesbian.' However, even I was unprepared for the following response. Choosing Stuck in Neutral as her Book of the Month, Lyn Gardner (The Guardian, Off the Shelf, July 25) described it as a 'seriously good book that cuts to the heart of issues concerning disability' and praises the novel's 'clever, unresolved, thriller-element.' What she spectacularly fails to mention is that the 'unresolved element' at the end of this story is whether or not the father is going to murder his disabled son, whose life the reader is asked to believe, is so damaged by his impairment that it might well not be worth living.
To back-track a little. Stuck in Neutral is the story of fourteen year old Shawn who has cerebral palsy and is unable to communicate his thoughts in any way. The book is written in the first person and Shawn describes himself as a kind of genius with perfect, total recall, although to the rest of the world he is a 'retard', totally dependent on others for his care. His frequent seizures provide a rather cliched metaphor for freedom; they allow him to 'soar' and 'fly free' and be 'released' from the 'prison' of his body. In the Author's Note, the writer explains that his intention is to 'invent .how the world might be for a character based on what life might be like for my son Sheehan,' who also has cerebral palsy. Although I don't normally feel it is the business of the reviewer to bring the author's own life into focus, this comment gives some hint to why Shawn's voice in the story often feels unconvincing and off-key. A more honest book, the one Terry Trueman needed to write, might have been one written from the point of view of what it is like to be the father of a child who 'has been diagnosed as being profoundly developmentally delayed' and from whom you are estranged. (The 'Notes' also tell us that the author is at present living with his second son, Jesse).
The most worrying feature of this book, the one the Guardian's review failed to mention, is its justification for killing disabled children. The father in the story is a journalist and writer who left the family home years earlier. On an Oprah Winfrey type TV programme, he argues the case for the killing of a two-year-old disabled child by his own father, and the reader is asked to share his view that the motivation was love. At the end of the book, the father bluffs his way into the house by sweet talking the baby sitter and sits by Shawn's bedside with a pillow in his hand, telling his son he loves him. We do not know whether he is about to use it to smother his son, but are asked to believe that Shawn will happily accept the murder if it comes. Feeling the 'crackle, crackle' of a seizure about to begin, he says. 'Whatever it is, in another moment I'll be flying free. Either way, whatever he does, I'll be soaring.'
The book develops the idea that since we do not always know what someone like Shawn might be thinking, it is reasonable to assume that a disabled person might be happier being dead and that some lives are too 'damaged' to be worth living. I can only assume that for Lyn Gardner this view is unproblematic, not worthy of comment, but for me and I expect, from many readers of Inclusion Now, it is deeply disturbing. As I said in my (not surprisingly, unpublished) letter to The Guardian,
'It is the business of children's literature to deal with difficult and demanding issues but (this book) is not one I would choose to put in the hands of young readers without a lot of preliminary talk about human rights. And that, surely, defeats the purpose of a book'.
Writing a completely negative review is difficult for reviewers like me who are also writers. I try to be as generous as possible in the (usually vain) hope that reviewers of my work might feel the same, but I found it very hard to say anything good about this one.