A voice for the Inclusion Movement in the UK
to the latest issue of Inclusion
Inclusion at Tuckswood
Creating Circles of Friends
Now We are all Middle Class
least within the field of inclusive education.
Visions of a Demon Race
A mountain of reports, guidelines,
One for All
consultation documents, white papers, green
Listening to the Asian Community
papers and action plans have poured out of
the DfES, yet there is an uncomfortable sense
No More League Tables
Every Child Matters
GCSE - poem
The World I Want to Live In
challenge the system that still insists on ‘its’
right to exclude. Disabled people have a
particularly strong and uncompromising voice
and we hope readers will enjoy hearing what
Who We Are
is being said.
Cover photo of Tuckswood School pupils celebrating the end of the School Council Election
Now. I am writing this as many
members of our families and organisations are gathering in London to protest about the £5 million state visit of George Bush to the UK. This year seems to have been one of political disillusionment in many areas, not
of retreat from the true principles of inclusion. This issue of Inclusion Now reflects a growing energy in the grass roots to fight back, to defend their right to speak, and to
Micheline Mason Editor
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Inclusion at Tuckswood Community First School UCKSWOOD Community First School serves an area of socio-economic deprivation - lots of unemployment, free school meals and single families etc. However - none of that really describes our community! The people (adults and children) are honest and 'sparky' and have a big say in the running of our school.
Basic skill groups and have a Light Sensory Room, one to one counselling for children who need it and try to offer one to one teaching for as many children as possible - very difficult at the moment with the funding crisis, but not impossible with a bit of creative thought. We also do lots of work in various ways with our parents.
â€œWe are For the past eight years we have been working hard to develop the school as an inclusive learning organisation - a Community of Enquiry. At the heart of our curriculum (which we have redesigned, more or less within the requirements of Curriculum 2000) is the development of the ability to think as effectively and creatively as possible - again, adults and children.
We run weekly Philosophy for Children sessions and encourage a Socratic enquiry approach to learning; much of the curriculum is taught through drama using Mantle of the Expert strategies; School Council and Council Committees help with the decision making process of school; work in biodiversity and using the environment enhances what we do. We also teach the children to read, write and do their sums!! We run a Nurture Group,
In terms of inclusion we simply want to provide an opportunity for every child to show us what they are able to do. We work in a way which is 'needs led' and often relook at what we provide to see if we can make it better. I guess we are unashamedly child-centred! They are, after all, at the centre of what we do. Children have their needs met anywhere within the school and the outside environment that is appropriate - we don't see inclusion as having to keep children in the immediate classroom if that is not going to be effective for them. Thus inclusion for us means inclusion within the school community. We have lots of visits out to access community and natural environments for the children. We also have lots of visitors in to school and different people sharing their skills and passions with the children.
We try hard to encompass all intelligences and learning styles, looking to develop each child's ability to use as much of their whole brain as possible. We have never done the Literacy hour, Drama although we use some of the strategies. The way our curriculum is organised enables every child to take part in their own way. It's quite hard to precis what the school is all about without sounding glib!! Nurture Group
There are many things we do with particular regard to inclusion. Readers might find it useful to have a look at our website:
www.tuckswoodfirst.norfolk.sch.uk Sue Eagle Headteacher
CREATING CIRCLES OF FRIENDS A peer support and inclusion workbook by Colin Newton and Derek Wilson This excellent book produced by Inclusive Solutions has been updated and now includes a chapter on Secondary Schools. Vanessa's Story is taken from that new chapter.
"I use this book in my teaching of future teachers, when I work with parents, and when I interact with government and other decision-m makers whose mandate is to support people with disabilities in achieving their potential. It is amazing how much powerful thought and creativity is packed within the pages of this slim volume" Gary Bunch, Principal Investigator, Faculty of Education, York University, Toronto "Colin and Derek of 'Inclusive Solutions' have worked with a number of key groups here in Oxfordshire, including Teachers, Officers and Members.They have been exceptionally skilled at helping us to clarify and develop our vision for inclusion. Their passionate belief in the human value of inclusion is underpinned by a thorough understanding of the common constraints and a solid experience of the successful practice that can work in finding imaginative solutions. Circle of Friends is a powerful technique; it has been used extensively, with great success." Chris Sey, Principal Educational Psychologist, Oxfordshire
Vanessa’s Story Vanessa was a year 10 pupil attending an innercity secondary school. Over the previous two terms, her life had become, in her words, “a living nightmare” as a result of the bullying and victimisation she was experiencing. Vanessa reported herself close to suicide. Her self-esteem and confidence were at rock bottom. She no longer believed that she had any real friends or that anyone really trusted or valued her. As a result she trusted no one. Carol had been making her life extremely difficult. Carol had been interviewed by school staff and the police in connection with anonymous phone calls, intimidating letters, vicious mobile phone texting to Vanessa and for threats and bullying carried out by groups of girls with Carol at the centre. The head teacher of the comprehensive school, frustrated by his attempts to tackle this complex web of relationships, asked for some help in setting up a circle of friends for Vanessa. Eight volunteers were gathered together by the form tutor and a meeting was held with Colin as the outside facilitator. This initial meeting was extremely powerful. Each of the volunteers explained clearly to Vanessa that she was: ●
A good friend
Someone they trusted
Someone who was always there for them when they had a problem
Someone they cared a lot about
The eighth volunteer simply hugged Vanessa when asked why she had volunteered with the simple expression, “she’s my mate ain’t she!”
Strategies agreed were relatively simple and centred on the theme of ‘being there’ for Vanessa and of encouraging her to speak to circle members about her concerns and worries rather than to bottle these up. The volunteers made it clear that they would help Vanessa work through the dilemmas she was facing and that the regular circle meetings would form an initial structure for this dialogue. The affirmation of positive regard along with the clear statement of friendship from these individuals must have been extremely powerful for Vanessa. The messages of support, trust and acceptance plus the willingness to work with her on difficult social issues were impressive. Vanessa had not been able to hear any of this up to this point. In fact one of the circle members actually described Vanessa as having “words going in one ear and out the other” because she was so preoccupied with her own problems. On the day of the initial meeting Vanessa heard. She will always be stronger for that moment in time. The memory of those expressions of friendship from her peers is unlikely ever to be forgotten.
s r . e .. t t e
My name is Scott, I’m 24 and have Cerebral Palsy. I was the first child with a disability to leave “Special Education” and enter “Mainstream Education” at the age of 6. I am a firm believer of integration within the education system. I do think however, it should start from the earliest stage; nursery (pre school as I guess it’s now called). The younger children are, the more open, perceptive and inquisitive they are without being a product of a social environment, i.e. society says you’re different therefore you must be so we’ll stick a label on you, etc. etc. Also, many “Special Schools” (and I used quotes because the education with these schools are crap to put it frankly, or were when I was there) are often miles away from the individuals homes, so little social integration can take place with peers outside of school time. I remember going around my “Special School” seeing 1000’s if not 100’s of 1000’s of pounds worth of equipment just being stored in corridors collecting dust, not being used from one year to the next. This to me is a sick injustice and a total miss appropriation of funds that could be far better used elsewhere. My feelings on this matter is to pull the plug on all “Special Education” establishments and plough the money into mainstream education. Make school accessible, give the teachers and students the resources that they need to become fully integrated. Then, finally Joe Bloggs who leaves school with an ambition to become the next Richard Branson, starts a huge national transportation service, he won’t need a law to make him make his service accessible, he’ll do it automatically because he grew up in such an environment access and disability issues won’t be issues! Anyway, that’s my rant over. Good luck. Scott Routledge
Now We Are All Middle Class Ten A-C’s Preferably with stars That is the only way to be Successful now, It’s the only point of school The stiff competition In the global market Makes it necessary you see To raise the standards To such a degree That we can all be free Of the need To be working class No, we won’t need houses Hospitals or schools. Buildings are now unnecessary And so are tools. No bricks will need laying No pipes to be plumbed, No wood to join, No tiles to be laid, No walls to be plastered, No sockets to be wired. No roads, no rails, No phone lines, cables or masts. All that is in the past now We are no longer working class
No more oil rigs, No more gas, No more wind power Turbines, generators or grids No more electricity, Petrol at the pumps, No more servicing or maintenance No more mechanics for our cars, No more clothes to be sewn No more washing, ironing or putting away, No more hair to be cut. Nothing will need making, And nothing will ever break, All that is in the past now We are no longer working class No more babies to be cuddled, No more patients to be healed, No more Home Care, Child Care or Meals on wheels, No more sadness to be noticed, No more messes to be cleaned, No more food to be farmed, No more meals to be cooked No more heat, no more light, No more fires to be put out No more deaths to be grieved The future is in the City Now that we are all middle class
Micheline Mason November 2003
HIDDEN Nbeottweseefnrodmisaablecodnsspueltcaiatilosnchmoeoel tsinugrvihvoerlds VOICES and representatives of the DfES, July 2003 The Government have published their report of the Working Party on the Future Role of Special Schools. This report recommended the continued existence of special schools as a ‘valuable part of an Inclusive Education System’. Disabled people, especially those who have experienced segregated education, were angry that they had not been consulted in any formal way about proposals which will affect a whole new generation of young disabled people. After much pressure, representatives of the DfES agreed to meet a group of disabled people and to accept their contribution as part of their consultation process. The following excerpts come from a full report of this meeting. Simone Aspis: “There is no place for special schools in inclusive education. The more we segregate children from mainstream into special schools it doesn’t reflect real life – an artificial environment for children of the same class, ability. I strongly believe you should rip it up and start the whole thing again, from mainstream schools.” Haq Ismail: “I’m a special school survivor, visually impaired. From being in the mainstream, I was given the choice between going away to special school or staying at home – no choice really. There was no cultural awareness – I was separated from family and friends – the first four years were traumatic, I cried myself to sleep every night – I can’t believe the government will entertain the idea of carrying on with special schools – I’d have them burnt or pulled down – I will fight this as hard as I can.” Anya Souza: “When I was 5 at one special school and there was one nursery
nurse teacher doing this stuff and I took them home to my mother and said I didn’t do these – brown rabbits and things – what’s the point of teachers doing the work for you? Special schools should be dumped. They’re out of fashion nowadays.”
Paul Adeline: “In special school you’re encouraged to think inside a narrow field.” Liz Thomson: “I’m a special school survivor and system survivor. I was in one in Durham from age 9 to 16 which took all I needed to know about life and living away from me – skills, everything. It was dehumanising. I couldn’t function even in a day centre. The only route available was a day centre. That whole journey was 40 years. How can we advocate for continuation of special schools? The agenda needs to be led by special school survivors, not teachers. I want to make a few points - (1) Parents choosing special schools – no-one chooses
special schools – parents don’t know other options, they’re not in touch with positive role models of disabled children and adults – it isn’t choice. (2) Special school teachers leading the mainstream – no way! The whole system is corrupt and medicalised – do we want that taken into the mainstream?”
Angela Brockwell: “I’m a special school survivor, from age 7 to 12 in a special school in Oxford. I had no formal education – I educated myself when I left school at 16. Our son is 7. He went to mainstream to start with and it didn’t work. At the SEN tribunal we felt as if we were pushed into a corner between a special school or home education, and I couldn’t stand that so I had to send him to special school.” Dzifa Afonu (young ally): “I feel really angry that the government chose who I should be educated with and have as my first friends. Everyone in society misses out, the arguments are weak for having special schools – the argument is that mainstream schools are not good enough. So let’s improve mainstream schools” Lucy Mason: “I’m the youngest here so the most recently out of the system. There is nothing more damaging that you can do to young people than separate them. It is the cause of all conflict between young people all over the world. I was in mainstream until 16/17. I got 10 AC GCSEs. Did 5 AS levels then left to do performing arts. I was advised through Connexions to go to this super ‘inclusive’ college in Coventry – but actually it was a segregated institution with no
contact with the college next door. Supposed to be the most inclusive place! The only included students were NVQ Care students. They suggested I did 1 AS over 2 years and then work towards sheltered employment! The problem is not lack of resources but the resources put in the wrong place.”
Michelle Daley: “I went to Elizabeth Fry school in Newham. Went to segregated school because no option – I was told I was ‘too fragile’ for mainstream – even in the special school I wasn’t allowed to do PE or woodwork. We got the reject teachers. People from the mainstream next door come in and see you playing music for the day – ‘how wonderful!’ These things are not cool. I came out with no friends. You feel like a nerd on the street, begging for a friend. Not able to communicate with non-disabled people. In school – I spent time in rehab, not learning or having fun.” Tara Flood: “I went to special school at two and a half. I saw physical and mental abuse every day. We were fully institutionalised, nowhere to go – being controlled not educated. In a class of eight – I was the only one with a small number of O levels, which made me isolated – no one to talk to about exams. I left despising myself, my impairments and other disabled people. Then I went to mainstream college and met these alien non-disabled people. Nothing in school prepared us for this. Twenty years down the line people are experiencing the same oppression. They don’t have a place in a civilised society. Your
understanding of inclusion is not mine.”
Simon Gardner: “When I left school in 1979 when the Tories came in I went to a day centre for 6 months, because I had nothing to do. I wasn’t educated properly for life at all. The education system let me down, has discriminated against me from living a normal life. I’ve had to fight for my rights.... I work at a college. Most of my education was self-taught.” Diana Simpson: “My daughter is 18 and is one of those people who the government thinks special schools should be kept for. To enter a hostile world, to find role models is difficult – that is the legacy of segregation. Parents are in the most difficult position – you want to love your child and do your best but are trapped in a corner. Going to special school is not a real choice – it happens after assessment and statementing – they’re not open door institutions – you are sent there. There’s a lack of reality. People have created their own sense of wonderfulness by being carers. The special school heads lobby must be examined for motives for retaining the place of special schools. Creating two parallel worlds has got to stop.” Micheline Mason: “I feel extra frustration that the word ‘inclusion’ has been taken and redefined to mean segregation – it’s corrupted the point of our struggles – the dream of relationships is inclusion, it’s about the world changing.”
Summary The main points to come out of the meeting were:
Contrary to public opinion, the move to inclusive education is already very slow. Adult ex - users of special education have the benefit of hindsight and are a vital voice in the debate about the future of education for children with special educational needs. This voice is not being recognised or heard. All the survivors present felt segregation had been harmful and limiting to them. Non-d disabled young people have a right to be educated with the full diversity of people with whom they will live as adults. There is no argument for the continuation of segregated education. There is only an argument for improving mainstream education until it becomes inclusive. Special schools have no expertise in inclusion. Successful inclusive schools are the resource which is needed by trainee teachers and anxious Heads. Parents do not choose special schools unless forced by the lack of trustworthy alternatives.
Visions of a Demon Race BY
think that to have an education system that leaves out some of its young people, hidden away in the so called care of special people, is to create a “demon race” that can’t be handled by ordinary people. This “demon race” will in turn be surrounded by a mystique, which sanctifies those who “care” for them, and creates a separate class of crazy subhuman beings who can’t have ordinary friends and make ordinary mistakes in learning how to live.
negotiating where time and energy would be most profitably used.
The more elite we get, in making a cream of academic young people, who are pushed through a system of circus hoops to get a recognition they should have anyway, the more there will be people who, the system will think, are too much trouble or beyond the pale.
We are looking at a future, not making past mistakes invisible with a pretence that they weren’t made.
How can we reap the good thinking of those who don’t fit the present system, if we make them into outsiders? Do we really want the world to stay the same, with its horrendous discrimination and fear of impairment? Resources now going into eliminating impairment, could be put into assisting those of us, who need help to express our thinking. Our world could then move on to a place, where it could see the craziness of backing war and destruction, when our children have no opportunity of making relationships with people who have different needs from their own, or of
Maybe it is worth trying to reduce the crime on our streets by making people feel they are a success. By putting energy into helping people make friends, we would learn to care with skills that very few people dare to look at learning, enabling the world to see that people’s worth is not in what they can do.
I am a Special School Survivor. Mistakes were made with me. It was ordinary teachers and ordinary young people who had the confidence to listen to me. Yes, we need expertise. I needed an unusual speech therapist, who had had to leave her job in the system so she could gain the skills she needed to help me. We need the expertise in the context of real inclusion, not added on to an already selective system of who is worth teaching and who is not. I was not considered worth teaching. I want to give to the world. I watch, listen, and think. I am not distracted by endless things “to do”, as I can’t do them. I need help to express myself, as I can’t talk on my own, and if I didn’t have physical help I
would die. I can still give. The experience of being hidden away, with the assumption that I was worthless, still haunts me with a terror I canâ€™t describe. Nobody should be put through that. Yet there are hundreds forcibly excluded from life everyday.
Listen to us, we can teach you. I think if you donâ€™t, the world is truly on its way to destruction. Maresa MacKeith,
'One for All' are a consultation group who can offer a variety of friendly, informative equality training workshops and meetings, like no other training organisation to date! We have some of the leading disability training organisations in the country such as Disability Equality in Education, Inclusive Solutions and EQuality Training supporting our work. Fundamentally we have experience - the key to understanding these issues and more importantly we are part of the evolving education system in mainstream today. Our aim is to promote the social model of disability, which sees society's systems and attitudes as the problem, not an individual's impairment. We are not seeking to place blame or find 'quick fixes' but instead find long term solutions. Ultimately we are the proof that inclusion does work! "My name is Lindsey Wallace. I am a non-disabled young person who met Maresa at school. She taught me Who are 'One for All'? a lot about disability issues so I feel inspired by her to promote inclusion and understand the benefits it will have to the non-disabled community. I am currently studying for my A' Levels at "My name is Lucy Fisher and I too have Cerebral High Pavement Sixth Form College." Palsy. I am also studying for my A' Levels at Clarendon College where I met Maresa. Whilst I was accepted into mainstream education I discovered many barriers and think it is important for me to share my experience to stamp out discrimination." "My name is Maresa MacKeith. I have Cerebral Palsy and no speech. As a result I was denied access to mainstream education for many years but I am now studying for my A'Levels at Clarendon College. I have a passion for inclusion as I believe other disabled young people should not miss out on the benefits of mainstream education and schools should not miss out on getting to know disabled young people."
One for All can be contacted at: PO Box 7612, Nottingham, NG8 3ZY Phone 0115 9297526 Email: firstname.lastname@example.org
Photo courtesy of Nottingham Evening Post
Listening to the Asian Community A report on a day conference run by Disability Equality in Education The work in this project has focussed on North West London with visits to Mosques, Gunwara’s and Temples, appearances on Desi Local Radio and a number of meetings with local community groups culminating in ‘An Equal Education For All’ Day held at the Asian People with Disabilities Alliance in Brent on 17th May 2003. Krishna Birdy, the DEE worker in this area put in a great deal of work to make the day a success, aided by four other DEE trainers some 20 parents and 10 young people attended. The young people had their own workshop and activities including identifying their dreams and the barriers, a drumming workshop and presentations to parents. The parents did a more detailed path.
Some of the issues identified in the Asian community, prior to the day: A very high proportion of Asian disabled children attend special schools. Parents were not aware of the options available to them with regards mainstreaming. Parents were not happy with transition options at post-16. Parents did not feel confident to question the decisions of ‘professionals’. Parents were not aware of the support agencies that exist.
Parents were not aware of the statutory process of statementing. In many cases parents had not been involved in Annual Reviews. Overall, parents felt very isolated and unsupported. When the young people reported back, one young man felt his parents did not like him and said his "dream was to play cricket with his dad". Later on his father came over and said " I never thought of playing cricket with my son." This was something he intended to do. Another theme that came out strongly from the day was of how much the young people felt their lives had been wasted in special schools. Sapna Ramnani who has significant Cerebral Palsy, a special school survivor until she was 17, who transferred by accident to mainstream school and then went on to university and has
Research recently completed her MA said. "My teachers thought I did not understand anything. Its not that special schools have low expectations of you, its that they have no expectations."
To provide more opportunities for young disabled people to express their dreams and hopes for the future; give them space to talk and take control of aspects of their lives; have an opportunity to form new friendships.
The Way Forward:
Disability Equality in Education (DEE) have been commissioned by the Department for Education and Skills and the Disability Rights Commission to produce a practical guide for teachers, which will help schools to make reasonable adjustments for their disabled pupils and prospective pupils (as detailed in Part IV of the Disability Discrimination Act 1995). As part of the project, DEE will be asking schools across England to self-nominate their examples of good practice. We want schools who have made adjustments for the first time as well as those who have more experience in making reasonable adjustments to tell us about what they have done and how they did it. The nomination questionnaires, and more information about the project, are available on the Department's SEN website:
www.teachernet.gov.uk/accessibleschools Alternatively you can ring 020 7359 2855 to request a paper copy of the nomination questionnaire. Please bring this article to the attention of your Head Teacher if you wish the school to be considered for this project. We would like to receive nominations by Tuesday 25th November, but would welcome any submissions after this date. The guide will be produced in Spring 2005.
EXAMPLES OF REASONABLE ADJUSTMENTS TAKEN FROM THE DRC C ODE OF PRACTICE 2002:
A large secondary school is opening a special unit for pupils with speech and language impairments. They plan to include the pupils from the unit in mainstream lessons. One of the challenges is how to enable the children from the unit to follow the timetable. They might otherwise be at a substantial disadvantage. The school has an established ‘buddy system’ as part of its antibullying policy. After discussions with pupils, parents and the speech and language specialist teacher, the school extends its buddy system. It provides training for additional volunteer buddies to guide the disabled pupils from class to class. This is likely to be a reasonable step that the school should take
A school operates a policy of not permitting staff to volunteer to administer medicines to pupils in any circumstances. The school reviews its policy. Following assurances that staff are indemnified by the education authority's insurance policy, the school changes its policy to permit suitably trained staff to volunteer. This is likely to be a reasonable step that the school should take
The report of the Conference is available from DEE for £2.
To provide more opportunities for parents to meet and discuss their concerns about their disabled children.
To make a video for the Asian community showing how inclusion can work.
NO MORE LEAGUE TABLES DISABLED PEOPLE AND PARENTS PLEDGE SUPPORT FOR THE CAMPAIGN AGAINST SATS AND LEAGUE TABLES INITIATED BY THE NATIONAL UNION OF TEACHERS "Well over 90% of these mass testings could be killed instantly with no loss whatsoever. The most valuable form of testing for pupils and teachers is informal diagnostic tests, revealing what has and has not been learned and on which children are given feedback." Ted Wragg, Professor of Education The Alliance for Inclusive Education has issued a press release acknowledging that the existence of SATs and the publication of National League Tables in England have, and continue to, work against the principles and practice of Inclusive Education. The latest Audit Commission report, ‘SEN - a Mainstream Issue’, relates yet again how teachers and head teachers are unwilling to include children with SEN into their schools because of the perceived lowering of standards as measured by such narrowly defined academic targets: "Almost every head teacher interviewed raised the issue of ‘league tables’ of school performance. This lay behind the reluctance of some to admit children with SEN for fear they would ‘drag down’ the school’s position; and could have a damaging impact on staff morale; failing to reflect the considerable achievements of some of the hardest to teach children and their teachers. This was seen (by the Audit Commission) as perhaps the key issue the Government in England needed to address if committed to pursuing its policy of greater inclusion". SEN – A mainstream issue, Audit Commission 2002 We also acknowledge that in a ‘British Social Attitudes’ survey of parents carried out in November 2002 only 1% of 20,000 said that they thought exam results were a reliable measure of a good school. Parents of children with special educational needs or disabilities are particularly clear about the detrimental effect of the inflexibility of the ‘Standards Agenda’ on their children.
Parents for Inclusion, a leading educational charity says: “We know from our helpline and inclusion groups in schools that SATs and the league tables are the biggest barrier to teachers being able to throw themselves wholeheartedly into welcoming our children.” In this light, the Alliance for Inclusive Education has resolved to lend support to the campaign initiated by the National Union of Teachers to abolish SATs and The National League Tables in England, and to promote instead broader measures of success based on ‘value-added’ and inclusion. Zelda McCollum, a parent and head teacher says: "I am a nursery teacher and I believe strongly that National Curriculum Testing should be abolished. The desire for good results could motivate schools to teach to the test and not respond to particular learning styles, frustrating the learning potential of many children. This could then lead to poor selfesteem and exacerbate behavioural problems." Micheline Mason, Director of the Alliance says: "Standardised teaching and testing disadvantages non-sstandard children. What we need is to celebrate creativity, innovation and flexibility in the classroom and to reward teachers for those things instead."
THE GREEN PAPER -
EVERY CHILD MATTERS
"The time for a major turnaround in disabled children's services is long overdue" states the Audit Commission Report, ‘Services for Disabled Children’. The Green Paper consultation however does not readily address the needs of disabled children with it's five headings - ‘Being Healthy’, ‘Staying Safe’, ‘Enjoying and Achieving’, ‘Making a Positive Contribution’ and ‘Economic Well-Being’. However it is really worth spending a bit of time responding to put disabled children at the centre of the consultation. Whether it be Sure Start, inclusive education, support with direct payments being used to pay for personal assistance at school, inclusive play, closure of segregated services, effective transition or the development of extended day and multi-service support centred on schools, there are many opportunities to champion the rights of disabled children:
http://www.dfes.gov.uk/ everychildmatters/ consultations.html
If every child matters then challenge New Labours utilitarianism by supporting the NUT boycott on compulsory testing. All parents and disabled people should be supporting the struggle against SATs and the struggle for more child centred education with a core emphasis on the development of emotional intelligence. Recent (2003)GCSE results for children in special schools show Yr 11 do over 50 times less well than children in mainstream schools(0.9%-52.6% 5 A-C) Even the measure of percentage getting 1A*-G has dropped since last year (37.2%-32%). This is an argument for a system based on valuing all young peoples achievements rather than normative tests and an argument for closing all special schools by 2020 so not only will every child matter, but also be a valued part of the community.
Gene Certif ral Segre icate of Educa gated tion
Dear Teacher, Why don’t you mark me
I’m not Norm,
While I’m waiting
My way is as good as
For my education
I label you with
Or Norm’s way
Who is he anyway
It’s just a different way
And why should we all
Nothing to be scared of
Be like him?
Plenty to be proud of
The World I Want To Live In A B BY
his is a terrifying world to live in, if you, like me, are autistic right now. So-called autism experts write papers about us, detailing all of the dysfunctions and deficits we are supposed to have. Doctors recommend that we be medicated, confined, or subjected to behaviour modification therapy, all with the goal of making us less expensive, more manageable, and less autistic-looking. Genetic research is carried out to see if we can be eliminated or prevented.
Parents write messages on the Internet saying they wish they had a normal child — one who speaks more “normally”, or has more “normal” social relations, or who doesn’t do such “odd” things as flapping hands, rocking, or lining up toys. We are portrayed as something disordered that needs fixing, some tragedy that deserves mourning, some sort of monsters who came into our parents’ lives and ruined them. We are portrayed as lacking such “human” qualities as empathy, compassion, and
love. We are portrayed as dysfunctional, impaired, and damaged. People spend vast amounts of money to try to remove harmless traits that are common and normal, if you happen to be autistic. The depth of pain that this causes an autistic reader is inexpressible. It is a deep denial of who we are, and a rejection by the same people who say they love us and want to help us. It effectively tells us, “You do not deserve to exist. Your existence causes pain. You should be someone different.” Parents are portrayed as some sort of heroes for dealing with us, and we are not portrayed as any sort of heroes unless we emulate normality, and confirm the current theories about autism. At that point, we are paraded around as having “recovered” from autism. I think it is heroic for an autistic to survive into adulthood, subjected to daily bombardment from an incomprehensible world that does not accept autistics. It is
heroic for an autistic to exist in this world at all. This is a world where autism is considered a disorder, and autistics are expected to submit to being “repaired”. This is a world where autistics are subjected to abuse, ridicule, and punishment for being who we are. This is a world where autistics are given dangerous psychiatric drugs, and treatments which attempt to force neurotypical behaviour on autistics. This is a world where autistics who manage to mimic neurotypical behaviour enough to “get by in the world” are often plagued by deep emotional and self-image problems because of the discrepancy between who they are and what they appear to be.
This is a world where autistics are considered, and treated, as something less than human, and are denied our basic human rights. This is a world where autistics are punished every day for being real, and rewarded for being false. This is not the world I want to live in. I want to live in a world where it is okay, even admirable, to be autistic. I want to live in a world where autism is known to be the unique and beautiful thing that it is. I want to live in a world where I can be sure that autistics will be loved and respected as who we are, not drugged or forced to behave as something we are not. I want to live in a world where I can say “I am autistic” and not be expected to be a bundle of abnormalities and deficits. I want the word “Autism” to provoke not a mental defective or something that needs “fixing”, but an image of a wonderful and unique person with a wonderful and unique way of being and experiencing the world. I want to live in a world where autistics are celebrated, not degraded. I want to stop being afraid for all of the autistics who have brain damage or impaired cognitive functioning because
of medications that they should have never been given in the first place. I want to stop being afraid for all of the autistics who are told effectively, “Who you are does not exist” or “Who you are is not good enough”, and forced to emulate neurotypical behaviour “to get on in the world”. I want to stop being afraid for all of the autistics who are forced to live in institutions or on the streets because of an inability to “get on in the world”. I want to stop being afraid for all of the autistics who are arrested for “bizarre” or “suspicious” behaviour, or for failure to communicate. I want to stop being afraid for all of the autistics who are abused, taken advantage of, and discriminated against, for being autistic, and who are denied the help they need to survive. I want to stop being afraid that these things will happen to me, especially because most of them already have. I want autistics to be told, “It is good to be autistic.” I want the choices, boundaries, brains, and emotions of autistics to be respected. I want parents, upon finding out their child is autistic, to be as joyful as I would be to have another autistic in the world. I want to see parents and teachers learning the delight and beauty of autism.
I want doctors and scientists to stop theorising about what is wrong with autistics, and start theorising about what is so right with autistics that there is this whole other kind of unique person in the world. I want those autistics who are incapable of working to still be able to live a dignified life the way they want to live it. I want autistics to have access to the help they may need to communicate, to understand things, and to live in the world. I want autistics to always have access to the information that they are not the only one like them in the world. I want autistics to be raised to be proud and confident that who they are is unique and beautiful. That is the world I want to live in. I know that it is possible. I also know that that is not the world I live in now. Currently, I can find exactly one printed book which tells me what I know to be true — it is okay, even beautiful, to be autistic. The book is ‘Through the Eyes of Aliens’, by Jasmine Lee O’Neill. I carry a copy of this book everywhere, and even sleep with a copy of it. It is the only concrete and lasting object I own that tells me, directly, “It is okay to be you.” Someday, I hope there will be more.
Amanda Baggs, Autistic
Direct Action PEOPLE WITH DOWN’S SYNDROME DISRUPT SCREENING CONFERENCE AND
A NYA S OUZA
Source: Human Genetics Alert, May 2003
ON MAY 19TH, a group of people with year’s conference with proper Down’s Syndrome and their supporters representation of disabled people with disrupted the International Down’s learning difficulties. This should be the Syndrome Screening Conference at start of a national debate on prenatal Regents College in London. This is the first screening. time people with Down’s Syndrome have “I can’t get rid of my Down’s Syndrome but made such a protest and is a major new you can’t get rid of my happiness. You can’t step in the debate about genetics, eugenics get rid of the happiness I give others either. and the rights of disabled people. As a It’s doctors like you that want to test result of the protest, the conference pregnant women and stop people like me organisers allowed Anya Souza to speak being born. Together with my family and from the platform. Ms Souza, who is a friends I have fought to prevent my trustee of the Down Syndrome Association, separation from normal society. I have fought told the doctors that she opposes Down’s for my rights…. I have the right to a job, to Syndrome screening and that people with services when necessary, to a decent Down’s Syndrome are people not medical standard of living, to know about my medical problems. Her speech was warmly problems, to speak my mind, to make applauded by the conference delegates choices about my friends, whether to have The protesters consisted of three people sex, and so on. To do this you have to be with Down’s Syndrome, another disabled independent when you grow up and not get person with learning disabilities and their segregated from society…. I may have Down’s Syndrome, but I am a person first”. families and supporters. They had written Excerpt from Anya’s speech to the conference organisers in advance and asked to speak, but were refused by the main organiser. It is unacceptable that doctors discuss better ways of preventing people with Down’s Syndrome being born, whilst excluding their voices from the debate. This runs directly counter to one of the main demands of disabled people: ‘Nothing about us without us’. The protesters expect that their action will persuade the Woman with Down’s syndrome tells doctors: conference organisers to ensure a full debate at next
‘I am a person, not a disease’
Photo courtesy of Disability Now
B Y S IMONE A SPIS
Kitty Gilbert also attended the demonstration. She had this to say: “I enjoyed watching the conference although I was a bit scared of what the conference people were saying. I think Anya’s speech was brilliant and she said it all so well. I think she’s wonderful. I think screening pregnant mothers with Down’s Syndrome babies is wrong. They are wanting their offspring to be able to enjoy their world around them and have endless happiness. I for one gave my mum pride and joy and I will continue to do so. I think that we should be treated fairly and equally, not being getting rid of because there is so much more in life that we can do. We are what we are and ask our opinion.”
HANDS OFF OUR GENES FREE Disabled People’s Conference
A CELEBRATION OF DIVERSITY 24th January 2004 NEWCASTLE
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Winter 2003 edition of Inclusion Now, the magazine of the Inclusion Movement in the UK