nclusion ow
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A voice for the Inclusion Movement in the UK
Volume 19
Spring 2008
Contents 2
Editorial
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Developing Inclusive Education in Southern Africa Richard Rieser reflects on a recent trip
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Inclusion UK Launch Plus keynote speech from Baroness Jane Campbell
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The Education & Skills Bill New sanctions - No new rights
10 Listen to Me 1Voice ‘Communicating Together’ teenage project
12 Teams for Inclusion Exploring the importance of teamwork
14 Celebrating Sameness Micheline Mason challenges the importance of ‘difference’
16 A Place for Us Bandbazi Company theatre review
18 Freaks, Geeks & Asperger Syndrome Book review
19 Subscriptions Form 19 Helpline info
Editorial In this edition of Inclusion Now, Jane Campbell, our very dear Dame, re- raises the question that has been in all our minds for a very long time: How do we find the new and additional energy that needs to be injected into the challenge of realising the vision of Article 24 of the Convention on Human Rights and taking disabled children into the education system as equal partners? And this is quite a challenge because as we all know, once in a while that energy flags and our feelings of isolation increase. Well, one answer is to read the varied pieces in this edition of IN because here you will find an essential tool-kit to help revive the passion, courage and creativity we all need in order to move onwards and upwards in our aim of inclusion for all our children. The articles and poems here remind us that both at home and across the world, new alliances are being built. Once in a while, even when you think you've thought it all through, you'll hear a simple phrase, a few words that make it all much clearer. Some years ago at a meeting I heard Micheline say that 'friendship is an educational goal'. And I thought of all the children I know and of myself as a child and as a teacher and understood how much friendship gets to the heart of the matter, not least because loneliness is such a barrier to learning. In this edition the statement that works for me in the same way is a reminder to ask myself and to remind others to ask the simplest of questions: 'Would it be alright to do this if the child was not disabled?' Would it?
Lois Keith Cover: Pupils at Kamagugu School, Nelspruit, South Africa
DON’T FORGET This is YOUR magazine. Send us your news, views, stories, furies, elations, etc.
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Inclusion Now Editorial Board Member
Inclusion Now is also available on tape, disc and via email. See subscription form on page 19
Global Perspective
DEVELOPING INCLUSIVE EDUCATION IN SOUTHERN AFRICA UN Declaration on the Rights of People with T heDisabilities (UNCPD) is creating great
opportunities for the development of inclusive education around the world. Here Richard Rieser, Director of Disability Equality in Education examines the barriers to inclusive education in Africa, recounts some good policies and practices found on a recent trip and explains a recent training course. Disability Equality in Education (DEE) has developed and delivered a pilot training project on implementing Article 24 - ‘Education of the Convention - Inclusive Education’, with the Southern African Federation of the Disabled (SAFOD). This is the regional organisation of disabled people in 10 countries in Southern Africa. The work was funded by the UK Department for International Development (DFID). This is the first time two disabled led organisations have been supported by Government to develop inclusive education. UNESCO identify at least 35 million children in Sub-Saharan Africa not attending primary school. FAMOD - Forum of Associations of Disabled People Mozambique has identified that with the big push for Education For All, with a particular focus on getting girl children to complete their primary education, that nearly all the children not attending school are disabled children or those having special educational needs. The biggest impact on this issue has been the introduction of free education. While there are a few African countries where still large numbers of children are not enrolled in school, it would seem, increasingly, that the largest group not attending school are disabled children. We know in the Republic of South Africa that at least 300,000 disabled children are not attending school. Unless something is done urgently African countries will not
meet Millennium Development Goal (MDG) 2, set by the world, 'to get all children completing primary education by 2015'. Bearing in mind MDG2 and Article 24 of the Convention, which requires that all disabled children attend education to develop their potential, within an inclusive system, where reasonable accommodations are made and appropriate support provided, DEE negotiated with DFID and SAFOD the funding and cooperation to pilot a training course to develop advocates for inclusive education in the 10 Southern African countries. The course was designed to give participants an understanding of the rights contained in the UNCPD and how to campaign for them; examine different models of disability and how these can be applied to education; develop an understanding of how inclusive education can work in different contexts around the world; examine the barriers and solutions for inclusive education and the actions necessary at national, regional and school level to bring about inclusion and to design a country wide action plan. There were participants from 8 countries:- Botswana, Lesotho, Malawi, Mozambique, Namibia, Swaziland, Zambia and Zimbabwe comprising disabled activists and leaders(18) parents(11) and 3 government representatives. The style of workshop with 2 experienced UK trainers was interactive and participative through lots of activities and group work. We were surprised about how much of our thinking developed in the UK was applicable when adjusted for the poverty and cultural contexts. Many participants changed their thinking over the 5 day course, including seven blind and deaf participants who had been educated in special schools. All the countries present now want national training and to develop inclusive education in their countries and each country’s representatives produced national implementation plans to take to their governments.
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Global Perspective One of the most interesting things to emerge from the workshop were the wide range of traditional views of disabled people that existed in these countries, many based on superstition or misguided beliefs which act as a major barrier to inclusion. Demon Possessed
Disgusting to family members
Bewitched/a curse Shameful You have a child with a disability as a punishment Mother blamed for having a disabled child - has been unfaithful to husband
As part of the project I visited some schools with inclusive practice. Under Apartheid white disabled pupils went to well resourced special schools Disabled black children generally did not go to school. This has led to a huge imbalance of resources. The South African Government has adopted a strong inclusion policy in White Paper No 6.(2001) Improving special schools in black areas while turning them outwards to act as resource centres in the surrounding schools. The designation of 30 full service mainstream schools and the development of district support teams.
Disability is a result of incest Punishment from God for evil deeds They believe that they are AIDS carriers
Less of a human being They do not have sex HIV Carriers believe that disabled person will cure them of the virus Useless to the society
If you point at a grave yard you get a paralysed arm Albino's do not die, but they disappear Disability is contagious
Naughty Discussion focused on ways of countering such ideas with a human rights approach. "I appreciate the inclusive nature of the course, and this kept me feeling the idea of realism towards changing attitudes of society in favour of inclusive education. I go back home quite convinced that inclusive education is a basic element of good governance." Course participant "All participants found the course valuable and extremely helpful....As SAFOD we urge DFID to please release more funding so that with the help of DEE we can really get inclusive education under way in Southern Africa" Alexander Phiri, Director General SAFOD
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Pupils at Leselie School, Lesotho
In the pilot schools there has been amazing progress to inclusion addressing issues of poverty and linguistic diversity as well as disability. However there is considerable resistance outside the pilot areas from teachers, parents and medical professionals. Now South Africa has ratified the UN Convention the Government will really need to step up training, school development and the development of support teams. There is a strong temptation, where the only alternative is no education, for parents to support special schools. They key is to build alliances of disabled people, parents and education professionals to push inclusion forward. Mahlubi High School in the Escourt area of Kwa Zulu Natal is one of a number of pilot inclusive schools in this area. Mr P.M. Madlala, the Principal said that out of their 986 students 3% were disabled. They had made the adjustments necessary for physically disabled pupils to fully
The task now is to find ways of helping the transformation to inclusive education. The training of advocates is a beginning. From here we will need to get funding for courses in each country followed up by ‘training the trainer’ courses to develop capacity in each Southern African country. In parallel with Kamagugu in Nelspruit District of this there is an urgent need to Mpumalanga is a resourced work with Governments, special school that is turning teachers, Universities which itself into an inclusive school. provide teacher training on The school takes disabled and developing inclusive non-disabled pupils including classrooms. A massive those with intellectual Pupils at Kamagugu School, Nelspruit increase in teachers is needed impairments. The pupils on the and this will require an improvement in their pay vocational courses get paid for their work and the and status. A huge increase in school building is school places pupils on work placements. The needed and a big push to make existing schools school has a strong inclusive ethos and a separate accessible. Work needs to be done in the class for deaf children who use sign language. townships and rural areas to convince families to enrol their disabled children in school. participate. They also had a wheelchair using teacher who felt he was a good model for all the students. In this district there has been an Inclusion District Support Team supporting 17 schools and Kwazamokukle Special School next door is a designated resource school.
Across all of this there is the need for an inclusive response to HIV/AIDS. Up to 20% of children in some parts of the region have been orphaned by AIDS and teachers are significantly affected by the pandemic, but inclusive approaches to education which mobilise the community provide the only way forward here as well. Richard Rieser In all the schools we visited there is a domination by grades and those who fail to progress academically are placed in basic skills and vocational classes, where they may stay for some years. Although a new National Curriculum has been introduced allowing for students to progress at their own pace, there is little evidence of differentiation and mixed ability teaching even in the schools committed to developing inclusion and schools lack inclusive resources and equipment. That said there is enormous energy and joy of learning to be found which puts UK schools to shame.
The Signing class at Kamagugu
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Working together
INCLUSION UK LAUNCH last edition of IN we announced the arrival I noftheInclusion UK - a collaborative partnership between ALLFIE, Centre for Studies on Inclusive Education, Disability Equality in Education and Parents for Inclusion to build a stronger, more effective voice in support of inclusive education. To celebrate our closer relationship we decided to hold a launch event on International Children's Rights Day - 20th November. The event was very well attended by teachers, LA staff, young people and long time supporters of the work of each of the Inclusion UK partners. The enthusiasm on the day was definitely added to by the buzz of having the event at South Camden Community School which has a well established commitment to inclusion. We were delighted that disabled and non-disabled members of the School Council were represented at the event. Inclusion UK also launched it's leaflet for schools promoting the new UN Convention on the Rights of Persons with Disabilities: Article 24 on Education. The leaflet opens out into a brightly coloured poster that we hope schools will put up on their walls so that staff and pupils can find out more about this new global commitment to inclusion for ALL learners. (Copies available from the Alliance office)
Tara with Rob Williams of 11Million
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We were very lucky to have Baroness Jane Campbell, Chair of the Equality & Human Rights Commission Disability Committee, special school survivor and a long time supporter of inclusive education headlining the event (see her speech below). 11Million - Office of the Children's Commissioner were also present and it was great to hear Rob Williams, 11Million's Chief Executive, speak so strongly in support of inclusion. We will keep you updated with what Inclusion UK is doing in future issues of IN. As for now I will leave you to soak up the inspirational words of our favourite peer of the realm and great ally to the inclusion movement, Baroness Jane Campbell. Tara Flood
Inclusion: The Way Forward Thank you - and thank you again for making me a bill header today! I must confess to not having a finely-honed speech, but of course this is as a result of Tara ringing me up three months ago and saying: "Would you mind popping over and helping celebrate Inclusion UK, who will be marking Universal Children's Day by shining a spotlight on Article 24 of the UN Convention?" "Sure", I said. "I have got a conference that day, but I'll pop round‌.." I should have known‌. When I picked up the paperwork at the weekend, I saw to my horror that I was the guest speaker! So here I am, unprepared but filled with the same passion that I had when I was ten years old:
passion to be part of other children's games; part of Assembly, giggling and chatting with friends of all shapes and sizes; part of the young world.
essence that gives campaigns their energy and inspires passion and creativity - in other words: things happen.
Of course, at ten, eleven, and twelve onwards, I wasn't part of that young world. I was part of another small world, segregated and out of mind: special school - but it doesn't hold very special memories!
And where do we look for these new alliances; for fresh and different ideas? We must go to places we wouldn't normally have gone before. We have to set aside some of our preconceptions about who people are and how they might be. So, on the Commission, for example, we have people from religious groups who would not ordinarily find themselves sitting beside gay and lesbian groups. Both hold diametrically opposed ideas on some issues, but we are all determined to build a society based on fairness, respect and inclusion.
It would be nice to think that separate schools were a thing of the past, and that inclusive childhood was part of the present. But we still have a long way to go. Sure, now there are thousands more disabled children playing, learning and growing with their non-disabled friends - but it is still a struggle to reach that harmony. It is still a struggle for parents to gain this harmony for their children; and there are still so many left out altogether. I feel we are at something of an impasse. New and additional energy needs to be injected into making inclusion happen, if we are to realise the vision of Article 24 and take disabled children into the State education system as equal participants. This will never happen while we campaign in our separate organisations. We may all be committed to furthering inclusive education of disabled young people but if we do not join together, wheels will be re-invented and our vision will lack coherence. At worst, we will end up competing with each other for scarce resources. The exciting thing about the new consortium, Inclusion UK, is that organisational boundaries will be removed in the quest to re-assert the right of every child to join in. As Chair of the Commission for Equality and Human Rights Disability Committee, I too am tasked with giving leadership to doing this very thing - joining up the dots. Unless I can show that the Disability Committee's projects embrace all aspects of diversity, I will be seen to fail. It makes perfect sense to me, therefore, that the Inclusion UK approach is the only way to proceed. Finding allies and building new alliances is the very
Inclusion leads to equality but equality does not mean treating everyone the same. It means our humanity is valued and our life chances are equally supported. This is what Article 24 of the UN Convention says to me: An inclusive childhood is a prerequisite for an equal society. All disabled children have equal value and should be part of an education system that says each belongs. So congratulations on bringing together this Consortium of four organisations - which I hope will develop into six, and then eight, and so on. And that inclusion is seen as the only way forward for disabled young people.
Baroness Jane Campbell Commissioner and Disability Committee Chair, EHRC Keynote Speech 20 November 2007 South Camden Community School
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Legislation
THE EDUCATION AND SKILLS BILL New Sanctions - No New Rights
The New Bill
Tara Flood looks at the dangers for disabled people within this new legislation
Based on these recommendations the Government published the new Education and Skills Bill, key aspects of which include:
Background The Government has described the recently published Education and Skills Bill as the 'biggest reform to education, training and skills in a generation'. The Government is telling us that the Bill will set the framework of new education provision and support available to young people and adults to meet the ambition set out in the Leitch Review.
Raising the age of compulsory education or training participation to 17 by 2013, and 18 by 2015. Giving new duties to the Learning and Skills Council to ensure the provision of free courses for basic literacy and numeracy leading to a full level 2 qualification.
In December 2006 the Leitch Review of Skills concluded that: "Unless the UK can build on reforms to schools, colleges and universities and make its skills base one of its strengths, UK businesses will find it very difficult to compete".
Free full level 3 courses for 19 - 25 year olds.
Leitch believes that this means becoming 'world class' by doubling attainment at most levels. He recommended to Government that this transformation must happen within adult education and workplace learning because that is where most 'workers' are. He stated clearly that the emphasis in adult education must be on employment related skills.
A new role for employers to provide apprenticeships and other work related learning
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Additional powers of the QCA to recognise and accredit a wider range of awarding bodies
Independent schools will no longer need to apply separately to become an approved special school The extension of an existing power for Governing bodies to exclude a student to receive provision to improve their behaviour The Bill's proposals do not to get to the heart of the current education system which fails so many of our young disabled people, in fact the Bill could be very easily seen as a cynical
move to addressing the large numbers of disabled young people who are not in education, employment or training, rather than genuinely wanting to support disabled young people to learn new skills.
forced to remain in the same disempowering environment. However, to really accomplish this the Government will need to radically rethink the way in which young people have their educational outcomes tested or accredited.
Disabled people aged 16-18 are twice as likely as non-disabled peers to be not in education, employment or training. By 26, disabled young people are far more likely than their peers to feel that there is nothing they can do to change their lives.
Changes Necessary for Inclusion
Although the Alliance supports the Government's desire to for young people in England and Wales to achieve 'world class' skills by 2020, we are deeply concerned by the narrow 'work-focused' definition of 'world class'. The Alliance believes achieving 'world class' skills should mean that ALL young people will have the right to develop existing skills and learn new skills and for those achievements to be recognised as having equal value. 'World class' skills should enable disabled young people to seek out opportunities to contribute to their communities and to have equality of life chances alongside their non disabled peers. For example, there is nothing in the Bill that supports the need for any new provision to be inclusive or education and training provision that promotes equality. Many disabled young people, particularly young people with learning difficulties or differences, and those segregated into special schools, have had a negative experience of what the current education system can offer. Without the Bill giving more enforceable rights to 'person-centred' and inclusive support across all aspects of post 16 learning, it is difficult to see how the low aspirations for disabled young people fostered in special school settings will be tackled after 16 if the young person is
The Alliance will be working with other organisations to make the following changes to the Education & Skills Bill: Remove the possibility of sanctions for non participation Recognition that support should also be made available to those young people who have not reached a Level 1 qualification Guaranteed support for disabled young people accessing inclusive post 16 education and training A right for young people to have access to accessible information about what their options are for post 16 education and training A duty on schools, colleges and other education and training institutions to removing the barriers to learning for disabled learners Please contact Tara Flood at the Alliance for Inclusive Education if you want to be part of the campaign. We are very keen to hear from disabled young people who have stories about their experiences of education and training courses after they have left school. Tara can be contacted on: 020 7735 5277 or email: tara.flood@allfie.org.uk
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Young Voices Their work started months beforehand, programming their communication aids with introductions, interests, achievements, likes and dislikes, their experiences of being listened to, how they would like to be listened to, their top 5 tips, the most important messages they would like to get across on DVD, and their ideas of what the DVD might look and sound like, in preparation for being interviewed. The teenagers were also asked to provide in advance any object, photograph or drawing that they felt represented them, and any other LISTEN TO ME is a new DVD from a group of young people who use alternative ways of communicating.
Beth Moulam
These disabled teenagers, members of the 1 Voice Communicating Together Teenage Project, have come up with their Top Tips on how to make sure they are listened to and consulted with. The teenagers worked closely with a team of facilitators to write the lyrics to what is a cool musical DVD. You can have a look at their track on YouTube: http://www.youtube.com/watch?v=w5ZlUnU8Oeo
The DVD, all about life with a communication aid, has three parts - a music track composed by the teenagers, a documentary about their communicating with AAC, and a PR section promoting the 1 Voice group. The teenagers were involved at every stage of production - scripting, song lyrics, music composition, shooting and editing.
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pictures they wanted to use or have seen on screen, and to share any ideas they had for animation scenes, special effects. The DVD was shown at a large Parliamentary reception attended by 1 Voice teenagers and their families on 14 November when Scope’s 'No Voice, No Choice' campaign was launched. John Bercow, MP for Buckingham, gave a speech about his review of speech and language therapy throughout the UK.
1 Voice teenager Nadia Clarke introduced the DVD and gave a talk about what AAC means to her:
Clare Messider
WITH AND WITHOUT Without a voice I feel lonely With a voice I can make friends Without a voice I am vulnerable With a voice I am safe Without a voice I have no life now or in the future With a voice I can enjoy and achieve Without a voice I am excluded With a voice I can be included in my community Without a voice people think I am stupid With a voice I can go to school and learn Without a voice I would be so bored and frustrated With a voice I feel good about who I am Without the right aid, support and training for me and all those who work with me It would feel like death Nadia Clarke
Copies of the DVD are available from 1 Voice for ÂŁ8 or a donation. E-mail: info@1voice.info or phone Katie Clarke on 0845 330 7862 'LISTEN TO ME' has been produced by the 1 Voice - Communicating Together Teenage Project. The project was funded with prize money that 1 Voice received as winners of the Guardian Charity Awards 2006 and funding from Awards for All. Many children and adults have plenty to say, but are unable to control their mouth muscles to speak clearly. They can use aids such as pictures, written words and technology to communicate. This is known as AAC (alternative or augmentative communication). 1 Voice takes a family and social perspective on communication and recognises the great need for adult role models to inspire children and families alike. 1 Voice promotes families supporting each other to overcome the isolation that being unable to speak can bring.
www.1voice.info Nadia observing Rosie Vachat on keyboards
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TEAMS FOR INCLUSION
‘Never dive alone’ International Scuba Divers Law
‘When in doubt build a team’ hen the going gets tough and the inclusion of a child or young person is beginning to seem extremely difficult, if not impossible, many will conclude that the child should no longer be present. We would like to challenge this. Why do we move so quickly to assuming the child is in the wrong place?
W
Surely the real question should not be 'do they belong here?' - but rather - 'what team support is needed here for this to work?' Or even more fundamental, 'Who needs a team around them at this time?' Who needs the team? Who is struggling with the inclusion most? The young person, their practitioner or teacher, their parent or even a member of the local support services? Whatever the answer, a team may need to be built,
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rallied or reformed. The nature of and number in that team will depend upon the nature of the situation. Diversity of membership will most surely be important to strengthen the quality of the support and of the ideas generated. Creating effective teams for inclusion requires a courageous capacity for understanding and nurturing change both within the team and with those who the team work with. There are many busy activities that any team member could engage in, but what essential or important actions will an inclusive team engage in? We need to be clear about what a team will and will not be doing. It's too easy to just add tasks to already overburdened people. Let us be clear. The following table (Nottingham Inclusion Facilitation Team 2002) illustrates what we think an inclusive team should and should not be doing:
Some things Teams for Inclusion SHOULD be doing
What Teams for Inclusion should NOT be doing
Enshrining JOINT WORKING as the team's modus operandi. Dedicating time to team building and recognising that this is a 'time hungry' but essential task
Allocating patches that are the 'sole' responsibility of the individual team member. They should not be encouraging the 'myth of the expert'
Recognising that inclusion is about human rights, social justice and having insight into the disability equality issues that underpin the inclusion movement
Focusing solely on working out what is wrong with the child and identifying and meeting special needs
Using everyday language and making sense
Inventing and valuing jargon that only one person in a thousand understands
Having high expectations Being comfortable with saying ‘I don't know what to do in these circumstances but together we can work it out'
Predicting long term limits and plateaux; inviting low aspirations from others
Asking 'Would it be alright to do this if the child was not disabled?'
Handing over responsibility to someone else
Valuing individual team member’s strengths and gifts and supporting them to become even better at what they already do well
Seeking to recreate special school systems and structures in mainstream settings - e.g. establishing 'inclusion rooms'
Reaching out and empowering parents (particularly from socially disadvantaged groups) to become advocates for their child within the peer group and the wider community
Establishing hierarchies by profession and salary
Continually asking 'what is inclusion?' and developing an understanding that inclusion is a process, not a fixed point to be reached Identifying potential leaders for inclusion within mainstream settings and investing substantially in their development Using 'only as special as necessary' as a key guide to the planning of support Recognising and developing the role of typical peers in the inclusion process, having insights into the benefits for all
The above gives some idea of what an inclusive team might be doing. What will such a team actually look like? We think teams who see inclusion as a central part of their work will probably not be dominated by experts but will be made up of a diverse range of practitioners with a range of skills, talents and experiences. Diversity and creativity will be their strength. A range of different thinking and learning styles will need to be present. The team will need strong leaders, influential 'people people', thinkers, system changers, reflectors, problem solvers, and deeply creative types! Let us not forget those who will be there because they care passionately or those who are living daily with the experience and
Having little or no involvement with parents of children they are supporting Being comfortable with and investing in the status quo. Not accepting that change is inevitable and resisting becoming active agents for change Allocating strictly equal shares of team time to each of the schools they serve Viewing more as better. Multiple referrals create further barriers to belonging Visiting schools only to see pupils on a caseload in isolation from their peers and classes
challenges of exclusion and inclusion. “People only support what they create. Life insists on its freedom to participate and can never be coerced into accepting someone else's plans”. (Margaret Wheatley)
So opening up participation, community engagement, focusing on capacity with maximal and inclusive involvement beyond the team members themselves are the processes crucial to building a team that shares a vision of full inclusion. Edited excerpts from a forthcoming book / podcast by Colin Newton and Derek Wilson www.inclusive-solutions.com
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Opinion
CELEBRATING SAMENESS watched with horror the television I recently film called 'Bulgaria's Abandoned Children' (BBC 2). It showed the day to day suffering of
children in a large state institution whose parents had rejected them because they were said to have impairments. Like all who saw it, including the film maker Kate Blewett, I found it almost impossible to understand the lack of human response to the children from the adults around them, to the point of cruelty. It made me question, as I have so many times before, what is it that has happened to those adults to so shut down their normal intelligence and emotional capacity in relation to people they perceive to be disabled, whilst they might go home and be perfectly good parents to their own children. The film made it clear that the phenomenon is widespread and culturally condoned in Eastern Europe. Maybe that is the first thing we must understand - what are the mechanisms used to create these cultures of exclusion. One thing that struck me very forcibly was that the adults could only see the 'difference', or impairment, and as such had no sense of commonality or empathy for their charges. They were like animal keepers in a zoo, and not even a very good one. The children might as well have been lizards. They fed and watered them. They changed their bedding and occasionally took them to the 'vet' (hospital) if they looked seriously ill. Every cry or move the children made they attributed to their incurable
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diseases. Even the fact that they were starved of nutrition was seen as a result of their inability to feed themselves rather than their appalling diet. We in Western Europe were outraged by these scenes and demanded that they change, but in truth we have not left behind our own similar cultural attitudes, treating disabled children very differently to their so called 'normal' peers. These lingering ideas can be seen for example even within inclusive schools. We put up posters which call for us to 'Celebrate Difference', or variations on this theme. This is a good attempt to try and say that we should not fear and hate or look down on people who seem different to the majority - because of their skin colour or sexual preference for example, but I wonder if we are missing the point. We have already been heavily conditioned to think of disabled people in particular as so different that they are barely the same species, belong in different places, don't feel or want or need the same things, and have nothing of any value to give or share with their fellow citizens. Like the children at Mogilino, their inhumane treatment has led the children to react in ways which made them look, sound and behave in very untypical ways, appearing to prove the point. The point however that Kate Blewett made so powerfully in the film was that all the children's reactions were normal - any child would behave in the same ways under the same conditions. Why could she see that and their staff couldn't?
Our culture is slowly changing in the West as more 'excluded' people are fighting for, and getting, a voice in society. Having a voice allows other people to see the human being behind the 'differences', leading to greater connection and empathy. Consequently more enlightened policies are put in place leading to greater inclusion and more voices being heard - an upward spiral. This made me think that in order to promote inclusion we need to be helping each other see what we have in common - always much more than our differences. We all need love, food, warmth, stimulation, fun. We can all feel happy, sad, lonely, afraid, angry, jealous, excited, embarrassed, proud - there is not a single human emotion felt by one group of people and not by another. The differences which do exist are usually of detail - some people eat meat whilst others are vegetarian, but we all enjoy food, or degree - we all dislike some sounds, smells or tastes but someone with autism may find these dislikes so strong that they are unbearable. We all have struggles around new skills and co-ordination - think of learning to ride a bike or skate on ice, but someone with cerebral palsy may find the same level of
difficulty learning to hold a pen and write. Some of us may be able to speak, and some might not, but we all know what it is like to have something to say and no one listening. Or in the wise words of my brother in law, having listened to my defensive daughter (who has an impairment) and realising he had heard it all before from his own two non-disabled daughters: "It doesn't matter what size, shape or colour they are, all children have the same excuses for not doing their homework". If we were to pick any two people who, at first glance look as if they have nothing in common, and ask them to write a list of similarities e.g. do you like chocolate, hate the smell of vomit, enjoy playing games, hate going to the dentist, like your Mum, look forward to your holidays, sleep in a bed, watch the TV? etc, it would be so long you could wrap each other up in it. But a list of real differences would be very short, and interesting. I am not saying that we should ignore these real differences. They are of vital importance. If someone is allergic to peanuts or needs insulin twice a day, then everyone needs to know that and accommodate it. We also have different ethnic backgrounds, faiths, histories and experience of life, and these stories need to be told. But they do not make us fundamentally different as human beings and that is where we have been deeply confused. This confusion has been, and continues to be deadly serious for many children and adults. It seems to me that the first step towards inclusion is the reconnection of separated people, discovering and recognising commonalities whilst accommodating individuality. Let us celebrate sameness! Micheline Mason
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Review
A PLACE FOR US Cornelia Broesskamp you know this lovely feeling when you witness D osomething that is 'just right', because it is truthful, sincere and beautiful? When I took my son to the first rehearsal of the youth theatre and circus group BandBazi I had only a very vague idea about the group, the particular project, the people. My son Luc and his friend Jamie had wanted to do something together, that would work for both: For Luc, who prefers structured situations, and for Jamie, who likes going with the flow. They had agreed to try this theatre project together, as both love acting and their shared language since being toddlers together is 'fooling around physically'. I had a very brief conversation with the directors at the beginning of the first rehearsal and left, trusting that the boys would tell me if it really wasn't working for them. Well, it did. Both wanted to continue and take part in the show. This meant 3 weeks of intense rehearsals. I am not able to comment at all on the process of creating the show and rehearsing it, because I simply was not there. I take it as read that the creation of the show was not without challenges. But I I am able to tell you about what I saw and experienced on the night of the performance. 'A Place for Us' tells the stories of a family on their journey across countries seeking refuge in a western country and that of a Brighton family dealing with the separation of the parents. Can there be a meeting place for the young people from both families? The whole company is present on stage during the whole performance. Every actor takes part in the scenes of the flight and in the Brighton scenes. On the stage they experience both lives and move between them within seconds. By the end of the performance I truly had the sense that the young people had become so familiar with each other's stories and had learnt so much about each other that they were able to welcome each other in 'a place for us' with open arms indeed. What a beautiful demonstration of the power of theatre!
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The theatre was packed. The story was mostly told through movements and actions; beautiful images were created in the interplay of moving bodies, lighting and huge pieces of fabric. The audience followed every move, gesture, and every emotion: laughing and crying, being frightened, being angry, being hopeful and being hopeless, being playful and having fun, being desperate and being joyful.
Phillippa Vafadari, one of the directors, writes:
Luc, one of the actors, dictates:
“I was slightly dreading the first day of rehearsals with the Youth Circus Theatre. The group was so diverse I wasn't sure how they would all gel together. My apprehension was unfounded. There was an amazing interest from all the young people to find out about each other and 'communicate' in some way - not an easy thing when 5 languages including BSL were being used at any one time!
“I have a friend. I shoot my friend. He is my friend. Riding a horse I am acting. I am doing cowboy. I am a soldier in the army. I am a refugee. And then I am a cowboy riding a horse. Breakdance is fun. Hip hop is fun. Rapping: Mohammed is cool like me.”
The rehearsal period was intense - 3 weeks solid and stressful. The group worked really hard despite some of them having quite chaotic lifestyles - a combination of being teenagers and some being refugees without a family support network in Brighton. The experience of the creative team, John Binnie and myself as directors, Alex Poulter, choreographer and Tariq Hussain, Lighting Designer, meant that we were able to react to situations and deal with them as they arose. For example, 2 participants decided on the evening of the show that they didn't want to go on stage!”
“I personally think that people were quite excited about what they saw in "A place for us". We also used good visuals and body language to make the audience laugh and cry which was the only thing that we tried to achieve and which mattered.
Amelia, 11 years old, was the youngest actress in the show: “I've never really taken acting seriously before, I didn't know how to do it or why other people did it. I only really started banbazi because of the trapeze.
Samare Bakhtiar, one of the actresses, writes:
It is often thought that each time you do a performance it would improve and eventually it will become great and powerful as an enormous tree which was just a seed first and then becomes thunder.” 'A Place For Us' was a sell out success at The Pavilion Theatre, Brighton, as part of the year of celebrations to mark the bicentenary of the transatlantic slave trade. It is hopefully going to be performed again in June 2008. BANDBAZI (Farsi:Trapeze) is an awardwinning Brighton-based multicultural performing arts company and charity that gives a voice to disenfranchised groups, and challenges stereotypes through its productions, education workshops and community projects. www.bandbazi.co.uk
Photos: David Churchill
But then when we started on the acting because the others were so good at it it made you feel what you were acting. When we were running away in some of the refugee scenes I felt like I was actually being chased. I really enjoyed signing with Toby, as everyone knew different languages to me and it felt good to share a private one with somebody else. It was quite a lot to deal with but I loved the show.”
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Book Review
FREAKS, GEEKS & ASPERGER SYNDROME A User Guide to Adolescence reaks, Geeks and Asperger Syndrome is one of those books I feel should be compulsory reading for everyone.
F
There are two very distinct views of autism that held by people who have autism, and that held by people looking on. This book is a breath of fresh air because it is written by a young boy of thirteen who has the diagnosis of Asperger's Syndrome. Luke Jackson wrote the book to shed some light on the inner world of people like him primarily for other young people who may feel like 'outsiders', and their parents, although it is of great interest to all professionals and others who wish to be better allies to people with autism. Luke comes from a large family where three of the six children have various neurological differences, some of which are also shared by his mother. He uses himself and the experiences within his family to explore all kinds of issues, e.g. when and how to tell someone about the diagnosis; the feelings which lead to unusual behaviours and compulsions; the benefits of diet; friendship and dating; school and homework, and identity. His style is light and chirpy with a very positive view of autism: "I have what some people would call a disability but I call a gift". At the same time it has extraordinary depth and insight, guiding people along without a trace of arrogance or being simplistic. I cannot recommend this book enough. Micheline Mason Published by Jessica Kingsley ISBN 1-84310-098-3
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“
The best advice I would give to parents that have found out that their child has AS is just to accept them as they are. Preconceived ideas are never a good thing. To be on the autistic spectrum is not the same as being on death row - it is not a death sentence, it is not terminal, it is merely a name for a lifelong set of behaviours. Yours and your child's life may now take a different course than you would have expected, but it is just as important and may even be more fascinating and enlightening. Reading books and learning lots about it is good (I wouldn't bother writing one otherwise), but don't think that they have somehow changed because they have a name for their behaviours. Your kid is still your kid regardless of his or her label.
“
By Luke Jackson
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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: 1 Winchester House, Kennington Park Business Centre, Cranmer Road, London SW9 6EJ Tel: 020 7735 5277 Fax: 020 7735 3828 Email: info@allfie.org.uk Website: www.allfie.org.uk Funders: Platinum Trust, City Parochial Foundation, Glimmer of Hope
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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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