Inclusion Now Volume 8 by ALLFIE

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A voice for the Inclusion Movement in the UK

Volume 8

Spring 2004

Contents

Editorial

In this issue we have been lucky enough to

Rowland Hill Centre for Childhood

receive contributions from people spanning

Report from an Inclusive Nursery

Games - poem

Removing Barriers to Achievement Latest publication from the DfES

Outing the Prejudice Making the least dangerous assumption

10 Are We Nearly There Yet? Inclusion research project

12 On the Road with RAP

several different generations.

The poem ‘Games’ on page six is written by someone who has been working for equality for 82 years. The project ‘Are We Nearly There Yet?’ on page ten is the work of someone who is just 16. And there are many in between.

Reasonable Adjustments Project report

14 Lee Wins His Case Buniak versus Jenny Hammond School

15 Breaking Barriers to Inclusion Stories from the Pi Helpline

16 Drugs, Alcohol & Inclusion

Diversity gives a richness to our magazine, as it gives a richness to our communities. No one seems more or less important than another.

Thoughts by Maresa Mackeith

18 Out of Place - Book Review Latest publication by Lois Keith

19 Projects, Events 19 Helpline details 20 Who We Are

We hope you enjoy this issue and will think about adding your own voice to the next.

Micheline Mason Editor

Cover photo of Rowland Hill Centre for Childhood.

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

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

R OW L A N D H I L L CENTRE

T HE ROWLAND H ILL C ENTRE was originally two separate nurseries, one of which was a specialist nursery for children with Special Educational Needs located on a hospital site. It provided very special medical provision and catered for children with complex needs for two days a week and children on the ASD spectrum for three days a week. In April 1997 Julie Vaggers became Head teacher at Rowland Hill Day Nursery. The SEN nursery had been relocated opposite this day nursery, with wasteland and a car park separating the two and very little access between the two buildings. In the autumn of the same year Haringey council decided to merge the two nurseries. The SEN nursery team were devastated, having experienced several moves and poor communication regarding their future. Julie took over as Head of both staff teams.

FOR

There were significant differences between the two staff teams. The SEN team were primarily concerned with ‘care’ and the mainstream nursery team were concerned primarily with ‘education’. Julie’s response to this was: “If I’m not welcoming and caring, children won’t learn, therefore you can’t separate the two”. The merge initially began with swaps between buildings by staff and young people visiting. This raised the question ‘was it right that children could look

CHILDHOOD

In September of 1998 the children from the SEN nursery finally moved into the mainstream nursery. By 1999 the nursery had become a Centre for Early Excellence and received funding for an advisory teacher post to develop inclusion in other nurseries so that children could attend their community nursery. The mini bus started to drop children off at other settings. Julie began her post as head of a team of six people and now has 35 staff, due to increase to 40 by March 2004.

“IF I’M NOT WELCOMING AND CARING, CHILDREN WON’T LEARN, THEREFORE YOU CAN’T SEPARATE THE TWO” out of the window and see but not be able to join in?’ There was a very successful two-day staff training by the Disabled Play Association, staff shared what could be done and there were frank and honest exchanges of views. Julie commented: “How we work with children is what we need to know – how they learn, grow and develop. Theories of child development and learning are applicable to every single child”.

The nursery also runs support groups, currently know as Toddler Opportunity Parent Support (TOPS), which caters for 2-3 year olds. These are totally inclusive groups supporting children with a whole range of needs and giving support to parents about the choice of educational placement. Baby Opportunity Parent Support (BOPS) has also started and aims to support parents right from birth when struggling with medical assessments.

Schools Links with health professionals are now good, following initial battles about withdrawal – no child is withdrawn for Occupational Therapy or Physiotherapy, or for Speech and Language Therapy - all support is now provided in the nursery environment. Speech and Language therapists attend team meetings and explain what support a child needs and the nursery team then include this in their planning. Physiotherapists demonstrate to staff what exercises are needed and the team then plan these into the pattern of the school day, i.e. through the music and movement sessions.

Julie says:

“The experience of running a Special Language group was critical to the development of inclusion in the nursery. Speech and Language therapists would refer children to the group which was being run by them in a separate room. The children in this group did not want to go into this separate room, they were not being given a choice – it was a children’s rights versus health needs issue. Health professionals ethics can be very different – choice is not often considered and this needs debating. Nursery staff wanted the language group children to be included in the nursery all the time and the Speech and Language Team was asked, ‘Where do you think the children will do best, in the nursery with friends where they are relaxed, safe and happy, or in a room with a stranger?’ We told them, ‘We need you to empower staff to see what you do’. This began to break down the myths of magic occurring in the separate room. A separate Language Group no longer takes place”

Quotes from Staff: “At the beginning I was apprehensive and said, ‘Can’t the SEN children just come for visits?’ I don’t feel like that now”.

“Lifting a child was scary – ‘Am I doing it right? How do I know if I’m hurting him?’ We learnt from each other, for example the SEN staff could tell us if food was the right consistency for tube feeding. It was good to have someone to check this out with and ask ‘Is this okay?’ They would show us, ‘This is another way you can lift him’”.

“It was a challenge – how to involve all of the children so they could learn how to communicate, to look for signs of how the child was speaking – with their body or their eyes. The other children would watch me carefully and copy my actions in their play. Adults have the baggage, children just get on with it”. “You come to realise that the way we have always done things is not always the best way – it’s staring you in the face half the time but you might not see it. It takes time and reflective practice”. “Now we don’t think about a child as having SEN anymore – we take them for who they are – their all round needs”. “We don’t know how it’s going to work at times. We do make mistakes – it’s a journey, an attitude – ‘We’re going to give this a go’”.

“The sense of inclusion and valuing each child is embedded in the fabric. All children feel ‘I have a place here’ and have a sense of themselves. A totally committed Head – someone so strong, no compromise, with a clear sense of direction and clarity – gave me strength to see more clearly”.

Parents: “Initially, the parents of the children with SEN did not want them to mix and asked ‘Are they going to get enough attention? Are the other children going to walk over them?’ We don’t get this anymore”. Julie One parent has said: “You know what? You’ve made the dark times in my life light”. On another occasion a mother came in with her son and saw a girl with complex needs in a wheelchair and said to her son, “I didn’t know you had such sick children here”. Her son replied, “Mummy, she’s not sick, that’s Julie and she’s my friend”.

Games The wickets chalked on the wall have gone Jacks and Hollies no longer fun The whip and top has lost its lure The paper football no longer there Watching sport is now the game Glued to the telly but it’s not the same It’s all in the past, no more today Lost forever to privatised play Gone is the world of make believe To high tech games of self deceive Played alone in a darkened room Only a screen to relieve the gloom No longer a need for a mate or team Individual skill against a machine Not a single friendly face in sight Just a soul-destroying megabyte Life is different, all is new From politics to microwave stew History is bunk and pushed aside As off we go on a short-term ride All eyes glued to the Internet Communicating with folk that we’ve never met Leaving a trail of shattered dreams Scattered in the path of time machines

Jack Sprung

No letters for this issue!

DON’T FORGET This is YOUR magazine. Send us your news, views, stories, furies, elations, etc.

News

REMOVING BARRIERS TO ACHIEVEMENT: THE GOVERNMENT’S STRATEGY FOR SEN

he latest publication from the Government brings a mixed message to teachers and families.

“This new strategy says in the same breath that the Government is backing Inclusive Education and the development of special schools” says CSIE, the Centre for Studies on Inclusive Education, who have been promoting inclusion into mainstream schools for over 20 years. They continue, “This mixed message is perpetuating discrimination and inequality”. Richard Rieser of Disability Equality in Education (DEE) believes there are things to be welcomed in the strategy which, he points out, identifies the removal of barriers to achievement as the way forward for children with SEN: “The emphasis on building the capacity of mainstream schools to include, co-o ordinated early intervention, the Inclusion Development Programme, increased emphasis on delegation and monitoring from more accountable central teams, staff being more involved with classroom teaching and less with form filling” are all cited by Richard as positive moves. DEE and CSIE are in agreement that the outdated ‘medical model’ of disability is still enshrined in the concept of the continuing role of segregated schools for children with the most complex impairments:

“Many parents of children with this label have campaigned long and hard to get their children into mainstream precisely because their children need to grow up as part of the whole community” Richard Rieser “This will allow reluctant mainstream head teachers to continue to rely on special schools to ‘soak up’ the children they don’t want. What is needed are targets to reduce and phase out segregated education altogether by the year 2020” CSIE

OUTING THE PREJUDICE M AKING

THE

L EAST D ANGEROUS A SSUMPTION

By Zach Rossetti and Carol Tashie, Institute on Disability, University of New Hampshire, USA

eople with disabilities are people first. Because of the presence of a disability, a person may act, get around, look, dance, smile, read, learn, show what she knows, or communicate differently. The key here is that this is a difference and not a deficiency. As humans, we are all alike only in that we are all different. The fact that society tends to create a hierarchy of these differences, by labelling some of them deficiencies, is a manifestation of an out-dated paradigm plagued by prejudice. This inherent prejudice against people with disabilities means that some differences will be defined as deficiencies and looked down upon by all of those “higher up” on the social ladder. What makes this even worse is that most people do not even recognise this prejudice. It is disguised as compassion and justified as “help”. The segregation of people with disabilities into “special” classrooms and separate lives is justified by this paradigm of deficiency. Too many people continue to believe that, “since they do not look or act like us, they must not be as good as us”. This way of thinking needs to be outed, challenged, and changed in order for all people to be valued just as they are. Anne Donnellan, in her book ‘Movement Differences and Diversity in Autism-Mental Retardation: Appreciations and

Accommodations People With Communications and Behaviour Challenges (1994)’, identified why this old paradigm was not sufficient and needed to be replaced by a more humanistic and respectful one. The key to the new paradigm is the concept of the Least Dangerous Assumption”. “L “Least dangerous assumption” states that in the absence of absolute evidence, it is essential to make the assumption that if proven to be false, would be least dangerous to the individual. She continues by explaining that the “absence of evidence can never be absolute evidence of absence,” and as such, it is always safest and most respectful to make the “least dangerous assumption.” Consider it this way. If I were to go fishing for a week and not catch any fish, there would be two assumptions that could be made. First, I could say “there are no fish in the lake since I did not catch any, and I know what I am doing.” Or, second, I could say simply that “I did not catch any fish that week, and I will keep on trying.” The first assumption seems rather arrogant, while the second one is more realistic and respectful. The same holds true for students with disabilities. Imagine a child who does not talk with the spoken word and moves around using

a wheelchair. Her teachers have worked with her for a month and have not yet seen any evidence of what she understands. In fact, they wonder if she knows or is aware of anything at all. These teachers can make one of two assumptions. They can assume that “what you see is what you get” and that this child does not know anything, that her brain is as empty as that lake. As such, they can educate her in a way that reflects those assumptions (perhaps segregated classes or regular classes with low or no expectations). Now imagine her as she graduates and uses a communication device to say, “Why did you treat me so poorly? I am smart and you wasted twelve years of my life!” A very dangerous assumption was made, with results that none of us would desire. Now, consider the second assumption. These same teachers can recognise that her movement differences are differences and not deficiencies. They can assume that she knows lots and just isn’t currently able to show what she knows. Her brain is as full of knowledge and potential as that lake is of fish, but they just have not been able to reel anything in yet. As such, her schooling would reflect these high expectations and she would be considered and respected as a valued member of her school and classes.

But consider a third scenario as well. What if we never come up with a way for this young woman to communicate her intelligence? What if, after twelve years as a valued and respected student in all general education classes, we still do not know exactly what she has learned and knows? What harm was done? What was lost? Nothing. And that truly is the least dangerous assumption. All people are people first. Everyone belongs to this wonderful life. No one should have to conform to someone else’s standards before they are told that they are “good.” We all belong. We all have strengths and weaknesses and our own individual potential to be great people and to live the lives we want. We can all lead happy and fulfiling lives, supported by those around us to be successful adults. It is up to all of us to examine our own core beliefs and to spread the word of the least dangerous assumption. We can no longer allow the justification of a prejudice that is so dangerous. Now is definitely the time to believe that all people are valued individuals with limitless potential. Keep on fishing - the lake is overflowing!!!! Zach Rossetti & Carol Tashie A longer version of this piece can be read at: www.inclusive-solutions.com

Now again, imagine her twelve years later at graduation, using her communication device to say, “Thank you from the bottom of my heart to all of my teachers who believed in me and made me feel as if I truly belonged and treated me like all of my classmates.” This is the least dangerous assumption, one that results in a young woman who can celebrate her full and fulfiling life.

Young Voices

A RE W E N EARLY T HERE Y ET ? By Eleni Burgess I was born with Spina Bifida and I use a wheelchair. I started out with a dream that if I identified the difficulties for disabled pupils I could effect change and that one day every school could be staffed with teachers that include disabled pupils in school trips, timetable our lessons in rooms we can reach, provide us with opportunities for sport. Schoolbooks would include examples of the achievements of people with disabilities. We would travel to school on accessible buses and we would be able to get through the automatic doors around school without help. That dream is certainly a lot nearer now that so many people have been startled by the views expressed by young people all over the UK and seem committed to bringing about change. I applied for a millennium award through Whizz Kidz in 2001, when I was fourteen. My project, ‘Are We Nearly There Yet?’ set out to answer the question: Do teenage wheelchair users think integration has been achieved in Secondary schools in the UK? I myself had to fight to be allowed to go to the local secondary school and knew quite a number of other young people who were wheelchair users who were having a difficult time in school because of a whole variety of obstacles. It seemed to me that it was time that young people shared their views and tried to make themselves heard. Individually they were unable to change anything and they were expected to feel grateful that they had been allowed to attend a mainstream school and not complain if they were unable to enjoy the facilities offered to young people that did not have difficulty walking.

Over 80 teenagers responded to my interviews and questionnaires. They were delighted to have the opportunity to set out their experiences. A thousand copies of the report and an action card, that suggested how an audit could be conducted and improvements made, were initially published and I wrote to every LEA and government minister involved in education in an effort to get them to listen to teenage wheelchair users. Following a half page article in the Guardian and the issue of copies to LEAs all 1000 copies were gone within two weeks of publication. The response has been completely amazing – beyond my wildest hopes. The phone has not stopped ringing and over 500 emails have poured in from all over the UK requesting copies of the report. Following publicity in the local paper Connexions and the Youth Service have agreed to sponsor another thousand copies and these have been printed. A considerable number of LEAs have bought in bulk, the biggest order being for 500 copies and several conferences are being run on the basis of the reports findings. One of the findings of my research was that there was a complete absence of role models in school and that 84% of secondary school pupils have never seen any reference to disability in a school textbook. My plans for the future include seeking out material for schools to address this issue and talking to publishers and those responsible for the national curriculum to ensure that disabled people do not remain invisible.

Here are the main findings from the project:

Too many pupils still have a major battle getting a place at their local school. 35% of pupils that want to go to their local school find that it is not accessible. Pupils spend too long getting to school. Journey times are too long and three quarters of those that use special transport arrive late every day. Special transport is not flexible. Pupils cannot join classmates in after-school activities because accessible transport and adult help is not available. Access in school is still poor. 70% of pupils miss part of each class because of the difficulties getting around school.

There is little inclusion of wheelchair users in sports/PE lessons and a lack of equipment. Teenage wheelchair users that are keen to keep fit presently have to undertake sport out of school. Sex education is not tailored for pupils with disabilities and is often taught insensitively. There are almost no role models in the form of teachers who use wheelchairs, or positive images of disability in school textbooks. Many wheelchair users have specific learning difficulties and are placed in the lowest set, with pupils who are disruptive. This hinders their ability to learn and means that a large proportion of them leave school without qualifications.

School trips are a major problem area. 80% of pupils that cannot stand miss school trips because of lack of early planning by the school.

Assistants, who help pupils get around in school, are not teachers but are often expected to teach disabled pupils. More learning support is needed.

Wheelchair users that cannot walk are never able go on school trips abroad. (Unless parents go too)

Staff at all levels in school, including the SENCO, need more training about disability and integration.

Poor provision of equipment in school hinders independence. Safety is overemphasised in schools at the expense of independence.

Copies of the Are We Nearly There Yet? 31 page report and an action card, price ÂŁ3, can be ordered from: arewenearlythereyet@btopenworld.com Or phone/fax 0161 449 9631 Cheques payable to: Eleni Burgess, 58 Lower Fold, Marple Bridge, Stockport, SK6 5DU

Research O N T H E R OA D W I T H R A P (R EASONABLE A DJUSTMENTS P ROJECT ) Richard Rieser, Director of Disability Equality in Education (DEE), reports on some of the early experiences of carrying out the Reasonable Adjustments Project for the DfES. DEE has been commissioned by the DfES to find out how schools in England are meeting the Reasonable Adjustment Duty towards disabled pupils. The project is described in Removing Barriers to Achievement (DfES Feb 2004) in the following terms: “Draw on effective practice to provide a resource bank of practical ideas, strategies and training materials for schools to help them make reasonable adjustments to their polices and practices to prevent discrimination against disabled pupils”. We asked schools to nominate themselves for the project. Nomination forms were sent to 9000 schools and we also put it on the internet. We are still taking nominations up until Easter:

www.teachernet.gov.uk/ accessibleschools We have been pleasantly surprised by the interest in the project. All five Teacher Associations are supporting it as is NASEN and over 500 schools and nurseries have put themselves forward as

exemplars of good practice. Through a series of phone interviews, we aim to select and visit a range of 50 schools in the country, suburbs and inner city, including nursery, primary, secondary and examine effective outreach from special schools. Redweather Films are coming with us on the visits and are filming what we find. The whole project will be published as a report and DVD early in 2005 by the DfES.

the adjustments we have found are just general good practice. For example a school trips policy where (at Coteford Juniors, Hillingdon) no school visits are undertaken that all pupils can’t access and pre-visits are made by staff to ensure that there is full access.

So far we have been to 12 schools and what follows are some ‘snap shots’ of the good practice we have found. What seems common to all the schools we have visited is a ‘can do’ attitude. The willingness to enroll disabled pupils, as part of the diversity of the local community, and then make the adjustments that are necessary for them to participate as fully as possible in every thing that happens in and around school. As schools have developed their experience of including disabled pupils, they codify their good practice in policies which explicitly include the adjustments necessary. Most of

Administering drugs has been a particular thorny problem in schools. However, we have found systems in place where staff have had adequate training, from a nurse and this is repeated every year; where no staff have opted out of administering rectal valium in emergencies to children with epileptic seizures, and all staff are trained in the use of epi-pens for acute allergies. In St Bridgets RC primary in West Cumbria we found twins in Year 1 who had 30-40 seizures a day,

but were fully included with adjustments to allow them to have a sleep after lunch on bean bags in the medical room. In the staff room with parental permission were photos of all the children with medical needs in the school and a description of their needs so all staff, including supply would know.

Twins, Year 1, St. Bridgets

In the same school three sisters with brittle bones were taking part in PE. They run round in the centre of the hall so they don’t bump into other children, but they avoid jumping. Their father, who had the same condition, told us he had chosen the school because of its ethos and strong anti-bullying policy. This was in stark contrast to his own experience at school where he had been constantly bullied and no adjustments had been made.

St. Bridgets Guided Reading Group, made possible by resources for the inclusion of Hailey and Mathew

In a Year 5 class with two children with learning difficulties (Downs Syndrome) they ran a

‘Circle of Friends’ to socially support the children at break and lunchtime. The additional staff the school had as a result of the statements, allowed for very effective guided reading, where the class could be split into four groups each with an adult discussing the meaning of the text. Such adjustments clearly benefit all pupils.

A reasonable adjustment or an accident waiting to happen? Liam and Jack, Year 8, Glossopdale College

At Bowness Primary in Bolton, the whole school was now doing brain gym which had initially been introduced by the physiotherapists for Stephanie a girl with Downs Syndrome and Cerebral Palsy in Yr 6. Connecting the right and left side of the brain by doing particular physical activities (e.g. the Macarena), was accelerating learning and had had a marked effect on the learning of children with dyspraxia and dyslexia. Here we also saw a PE lesson in Reception which featured floor work to include a child with Cerebral Palsy.

At William de Ferrers in Essex the sixth formers and year 10’s in this 1300 pupil community comprehensive are trained in mentoring to sort out bullying and three trained Councillors work with the pupils to help children with emotional problems. Whilst at Granby High in Harrogate a homework club, computer club and game club run at lunchtime in the Learning Support Department are very popular and give great support to all pupils especially those with learning difficulties.

At Glossopdale College in Derbyshire, with nearly 2000 students and 80 disabled students the last lesson on a Friday has been dropped to allow for timetabled planning/ meeting time for the 140 teaching staff with Support Teachers linked to each year and faculty and the 28 ECO’s(Education Care Officers).

We are looking forward to gathering much more information and examples of schools ensuring disabled pupils are not discriminated against.

All this is in sharp contrast to the high profile Tribunal case in a Waltham Forest primary school who had not made adjustments so a 5 yr old with learning difficulties could take part in class activities or the nativity play (see story on page 14).

If you want to take part in the project contact Linda Pryor on 0207 359 2855 or submit on the DEE website (details on back page).

News

LEE WINS HIS CASE BUNIAK

THE JENNY HAMMOND PRIMARY SCHOOL

David Ruebain, head of Levenes Solicitors specialist department in Education and Disability Law, was funded by the Disability Rights Commission (DRC) to bring the case of Ms Buniak against the Jenny Hammond Primary School. This case is a landmark case for families who are fighting for inclusion. David writes: Lee is a child with Global Developmental delay who was subject to serious discrimination because of his disability. He was prevented from being involved in the school Christmas play and other activities â&#x20AC;&#x201C; including even making a card for his mother; he was excluded from a school trip and was even not invited to be in the class photo. In an appeal brought to the Special Educational Needs and Disability Tribunal, the Tribunal found that the school had acted unlawfully in discriminating against Lee in all of these ways. However, the Tribunal also decided a point in favour of Ms Buniak which was not clearly reflected in the Press coverage but which has important consequences for other disabled children:

They held that a failure by the school to secure adequate staffing arrangements for Lee, when his statement of special educational needs required that he receive support from a learning support assistant, was also discrimination, even though it was provision contained within his statement.

Lee and his mother (courtesy of the DRC)

Since the Special Educational Needs and Disability Act 2001 amended the Disability Discrimination Act 1995 to bring education within the Anti-Discrimination provisions of the DDA, practitioners have generally thought that the discrimination arrangements would exclude provision which would ordinarily be secured through a statement of special educational needs. However, in this case, the Tribunal held that where a statement provides for support, if that support is not being delivered, it might fall within the antidiscrimination arrangements (if it meets the definition of discrimination). Accordingly, it might now be possible to bring discrimination complaints in respect of non-provision in statements, if it can be shown that the reason why provision is not being made is discriminatory.

David Ruebain

BREAKING BARRIERS TO INCLUSION PI INCLUSION HELPLINE A letter from our post bag and our response: Dear Parents for Inclusion We were told earlier in the year that our disabled daughter would be going to her to a local mainstream primary school. This was our dream, as we have always been determined that this should happen. Our daughter was thrilled, as it would mean she would go up into primary school with most of her friends from her nursery school. However come September Ist we were told that even though the school had plenty of time to prepare for this new admission the accessible toilets and hoist were not ready, and consequently she was unable to start school. The LEA named a special school on the statement without any consultation with us. We have appealed to the LEA against its decision, and there is a SENDIST application outstanding. We have consulted with the local MP who is supporting us and has suggested an ombudsman’s appeal. We have decided to send our daughter to special school while access needs are being assessed. She is very frustrated because she cannot go to school with her friends. We have tried to contact the DRC helpline but found it difficult to get through. We have a solicitor who is helping, but we are very concerned about the delays in hearing from SENDIST and DRC. We feel we need an independent advocate to support us at SENDIST. Please could you advise?

This family reached a Parents for Inclusion helpline worker when they had already gone a long way in campaigning for their daughter’s rights. The helpline worker telephoned to speak to the parent directly. She suggested that it would be worth persisting with phoning the DRC helpline (08457 622 633) as that can be very useful, and the DRC need to know the level of noncompliance out there in schools. A source of independent advocate support is the Independent Panel for Special Educational Advisers (IPSEA) and their contact number was passed on (01394 380 518). Of course the urgent practical issues were explored too. Had all avenues been attempted, i.e. writing to the Headteacher, Director of Education, asking for meetings etc.? Did the parents have any allies who could campaign on their behalf? Is there a disability organisation in their area that could take up this case? Is there an independent parental supporter (IPS) in her area? – all LEAs are meant to have them. Meanwhile what about this young person? What is the impact of this discrimination having on the young person and the relationship with her parent(s) and family? What about her friendship circle and has the family managed to keep that going? What help do they think they need? By listening closely to the issues as they come up the

helpline worker helps the parents devise an action plan. This helps the parent feel a bit more in control of the excruciating situation and more likely to get things moving and also to feel less alone with it all. The parent was encouraged to call back, keep in touch and talk through things at any stage. Is there anybody out there who can add any insights or experiences that might move things forward? Another letter – over to you – how would you respond?

Dear Parents for Inclusion At Secondary Transfer, the LEA offered my son a dual placement only. This means 2 days at mainstream secondary school, and three days at special school. This means he has to travel to and from special school involving 2 hrs 40 mins travel each day. He is “desperate” to attend mainstream school full time or even for another day as a compromise, so that he can be with his friends. Please can you let us know if there is a time limit on the actual time a dual placement has to be in place, before a decision is made. How we can encourage the mainstream school to take him fulltime? Please give us some ideas. At the moment we have nobody supporting us, and we feel deeply isolated and very angry. We feel so sad and upset for our son. Please can you advise us? Thank you.

For full details of the Parents for Inclusion Helpline, please see page 19

YOUNG PEOPLE DRUGS ALCOHOL & INCLUSION Thoughts by Maresa Mackeith At a weekend for young Quakers, I was part of a discussion group. In the group, it came up why people started smoking and drinking. As the discussion went on, it seemed to me that when people became more confident in themselves, and were prepared to show their real selves, they wanted to stop either smoking or getting drunk. This made me think of my experience of not being allowed into school because of my impairments. Of being forcibly excluded from being allowed to learn about other young people’s lives, and just being part of ordinary life. It made me feel I would have done anything to be allowed into their lives. If I could have been accepted by starting to smoke, drink or anything else, I would have done it. When I hear about the lives of young people who seemingly throw their lives away by truanting, taking drugs, or even knifing other people in the name of asserting their identity, a bit of me knows how they feel. Being excluded or being made to feel useless is the worst thing I

have experienced. The fact I have no control over my movement, including not being able to speak, is not a problem for me in comparison with not being wanted for who I am. If we are serious about peace, equality and justice, we have to look at why our institutions involved in the rearing of children, are so afraid of difference. Why do we spend so much on screening in pregnancy, reinforcing a mother’s fear of a child with an impairment? If this child were to be welcomed into the world with confidence, and then included in everything young children and their families do, women wouldn’t be so frightened of having a child with an impairment.

we all have qualities. To feel good, we need to have the security that we will be appreciated and wanted by our friends and families. To do this, friends and families need the support of nurseries, schools and religious institutions, in which everyone is assumed to belong, and allowed to be themselves. To make this possible we need to restructure our life, and the training of the public services. The history of conformity in how we look, how we function, our cultures and our thoughts, is a chequered one. We are not all the same, to be the same would be the nightmare. So why do we hurt each other to the extent that young people have to deaden their feeling and thinking ability, in order to conform, so as to belong?

As with poverty and emotional deprivation, when we don’t have our basic needs met, we violate ourselves and other people in an attempt to get those needs met, however misguided.

I think this is what inclusion is about in the wider sense, and if we don’t address it, substance abuse and violence will continue in our world.

We all have a basic need to feel good about ourselves, whatever our qualities are, and

First printed in ‘QAAD - Quaker Action on Alcohol and Drugs’ magazine.

Maresa Mac Keith

Review

Lois Keith Review by Chrissie Wilson Read Lois Keith’s accomplished and moving new novel Out of Place and you won’t be disappointed! I was so caught up in the gripping tale of Susi and Eva’s flight from Austria at the outbreak of World War II and their subsequent attempts to live a new life as British citizens in 1940’s London that I read the whole 377 pages in three sittings. But the story is so much more than escape from abject terror to relative safety. Against the larger historical canvas of pre-war Vienna and the postwar London Jewish community, Lois explores more intimate questions about the nature of family, identity and how secrecy and duplicity are sometimes a necessary strategy to survive both the formidable and petty tyrannies that political and social systems impose. Through her two central characters Lois courageously explores some of the most shameful episodes in the history of the 20th century – the Nazi persecution of the Jews and their eugenics programme which murdered thousands of disabled children in the name of ‘racial purification’. Using a series of flashbacks, diary entries, first and third person narratives, she unfolds the story of Susi Rosen a sixteen year old Jewish girl and Eva Hofer, the disabled infant daughter of her mother’s nonJewish maid, Maria. Lois’ meticulous research and her use of authentic period detail poignantly evoke the everyday life in

middle class Viennese Jewish households – you can smell the coffee and taste the delicate pastries. But she also skillfully documents the brutal shattering of their cosy stability by the escalating persecution meted out by the Nazis, whilst revealing Maria’s horrified realisation that the ‘doctor’ her Wehrmacht husband wants her to take Eva to visit has no intention of ‘curing’ her. By pretending that Eva is Jewish and Susi’s baby cousin, the two girls get seats on the Kindertransport – a scheme that enabled hundreds of refugee Jewish children to leave Austria, Germany and Czechoslovakia by train for England just before the war began. Arriving in England is by no means the end of the story. Eva finds herself in long-stay children’s hospital where she endures the mixture of cruelty and kindness that many of us who were hospitalised as children during the 1940s and 50s can readily recognise. Meanwhile, Susi puts her skills as dressmaker to work to create a new life for them both.

There are plenty of struggles and triumphs yet to come, but to reveal more of the plot would be unfair except that I can guarantee enough heartstopping twists and turns to keep you completely engaged as Eva tries to find her place as a disabled woman in 50’s and 60’s London. Yet again, Lois’ story-telling skills, her lightness of touch and compassion for her characters take readers through some pretty disturbing and distressing territory. But she keeps us with her all the way because she makes us care about the characters too. The search for a home, identity, acceptance and independence are universal

CALL FOR EVIDENCE

themes that touch everyone. When they are explored with emotional truth in a convincing historical arena you can’t help but be swept along. Chrissie Wilson Out of Place can be ordered direct from Crocus Books by sending a cheque for £7.99 plus £1.50 post and package made payable to Commonword Ltd to: Commonword, 6 Mount Street, Manchester M2 5NS. Or you can order it from your local bookshop. Crocus Books 2003 ISBN 0-946745 47-1

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For more information please contact Micheline Mason at the Alliance for Inclusive Education (contact details on back page)

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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

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.

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