nclusion ow
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A voice for the Inclusion Movement in the UK
Volume 14
Spring 2006
Contents 2
Editorial
Editorial
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Free New Resource Pack
This issue of the magazine reflects the
Implementing the Disability Discrimination Act
extraordinary situation we are in with regard to
New Director for the Alliance
inclusive education and, indeed, the shape of
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Tara Flood introduces herself
education itself. There are stories of the
Building the Movement
disadvantaged young people, ranging from murder
Creating local groups for Alliance members
to rebuilding ghettos ('Trailblazer' special schools).
Special College A teacher gives us an inside view
10 UN Moves in the Right Direction Disabled young people have their say
12 The Education & Inspections Bill Richard Rieser calls for opposition
14 The Right to Live Lois Keith reflects on a recent judge’s ruling. Plus Not Dead Yet UK network info.
continued attack on the lives of disabled or
These are counteracted by stories of progressive legislation, new training resources and wonderful examples of inclusion working with young disabled people from all over the world starting to become their own spokespeople. We know that the progressive forces will eventually win the day, but there is no doubt the struggle is becoming sharper. For myself, I am taking a sideways step away from my desk at the Alliance and, hopefully, into a new phase of creativity and effectiveness as a freelance worker and world changer. I am
15 Poem: When is murder not murder?
remaining involved with the production of this
16 Some thoughts about care
will now be supporting the leadership of our new
A parent examines the role of ‘care-giving’
18 The Inclusion Training Pathway Parents for Inclusion delivers empowerment training
magazine as I couldn't quite tear myself away. I director Tara Flood as I am sure all of you will too. Micheline Mason Editor
19 Helpline details 20 Who We Are
DON’T FORGET
Cover photo of Cameron at College Gardens Nursery
This is YOUR magazine. Send us your news, views, stories, furies, elations, etc.
Inclusion Now is also available on tape, disc and via email. Contact the Alliance for Inclusive Education for details (address on back page)
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If you would like to receive Inclusion Now regularly, we now offer a subscription service. Alternatively, you can join the Alliance for Inclusive Education and receive every issue FREE as part of your membership! Contact the Alliance office for more information on both options.
Resources
FREE NEW RESOURCE PACK Implementing the Disability Discrimination Act in Schools and Early Years Settings fter three years of hard work an important new pack 'Implementing the Disability Discrimination Act in Schools and Early Years Settings' will be available to schools and early years in England free of charge from May 2006. This important new pack consists of a multi-media resource with 3 DVD's, a CD Rom with text and lots of training resources, and a ring binder in 6 sections.
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Chris using Dragon Dictate at Hall Green School
Sections include: What the Disability Equality Duties are for schools, with text, Powerpoint presentations and training activities on the duties and definition. Access Planning Project for Schools. Timely templates for schools who have to produce new access plans this spring ( April 2006). Access Planning for Local Authorities. These templates were trailed with 6 LEA's Bath and North East Somerset, Blackburn with Darwen, Doncaster, Havering, Norfolk, Tower Hamlets. They contain a wealth of information and examples of good practice. Access Planning for Early Years - similar materials to support Early Years Development and Childcare Partnership to plan for meeting the needs of disabled children under 5 and in play. The Reasonable Adjustment Project based on filming, observation and interviews in 41 schools. Following a questionnaire, over 400 schools indicated their willingness to share their good practice at making reasonable adjustments for disabled pupils. The result is 3 'inspiring DVD's' covering all aspects of school life with pupils with the full range of impairments being successfully included. The Duty to Promote Disability Equality in Schools and Local Authorities.
Dean and Samar, PE at Hall Green
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Resources
The pack will help schools get ready for implementing the new Duty to Promote Disability Equality. This duty will be applicable to all schools and PRUs in 'England and Wales by the end of 2007. Order your pack from DfES publications: 0845 600 9506 Or e-mail: publications.online@dfes.gsi.gov.uk
Heather in Science at Filsham Valley
The Duty to promote disability equality will require schools to have due regard to the following in the operation of their organisation to: Promote equality of opportunity between disabled and non-disabled persons; Eliminate discrimination that is unlawful under the Act; Eliminate harassment of disabled persons that is related to their impairments; Promote positive attitudes towards disabled people; Encourage participation by disabled persons in public life; Take steps to take account of disabled persons' impairments, even where that involves treating the disabled person more favourably than other persons. Disability Discrimination Amendment Act 2005
TRAINING Disability Equality in Education will be running a series of one day training courses and supplying a training manual to participants. This covers all the essential ingredients of developing a Disability Equality Scheme. Contact us if you need training or help.
Mathew in French at Glossopdale
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www.diseed.org.uk info@diseed.org.uk 0207 359 2855.
Dear
Readers
I would like to take this opportunity to say "Hello" to all of you. I am still very new in post and just beginning to get to grips with the day to day stuff so, I will say more about my hopes and plans for Alliance's future campaigning work, in the next edition of Inclusion Now. As some of you may already know I have been a member of Alliance's National Council since 2004. I am a disabled person and a special school survivor and therefore an energetic member of the 2020 Campaign. My background is in disability rights activism at a local, national and international level and I hope I bring with me to the Alliance, my passion for an inclusive future for all of us. One of the things that excites me most about working for the Alliance is its 100% commitment to building the capacity at the grassroots, to support local campaigning on inclusion issues.
TARA FLOOD new Director of the Alliance for Inclusive Education, introduces herself.
The Alliance's success will be determined by our ability to create a bigger, stronger and more unified force of disabled children, young people and adults and our allies, all committed to our shared struggle for the kind of social and political change that will deliver real and lasting inclusion for all our children. I look forward to sharing the challenge with you! In Solidarity
Tara Flood Director Alliance for Inclusive Education tara.flood@allfie.org.uk
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Networks
BUILDING THE
Naomi and Tom in Brighton
MOVEMENT of us who believe in inclusion are feeling M any that the pendulum of public support has swung away from us. The Government seem to think we are an obstacle to their standards / privatisation agenda (good!) and the media are busy exploiting the popular myth that the problem with schools are the type of children who go there. Consequently funding streams are drying up for our organisations and this is making it harder to keep up the fight. We know however that the only real road to defeat is giving up too soon, and the only reason we would do this is because we become overwhelmed with isolation and discouragement. For this reason the Alliance for Inclusive Education has made it a priority to try and link together people who are committed to the values and practice of inclusive education through the formation of local groups. So far we have set up five such groups. For each we identified a small group of people to convene an inaugural meeting. Micheline went to each one to speak alongside other members of the Alliance. Each event was unique. The smallest (London) had seven participants. The largest (Bristol) had over sixty. All of them had that magic that only seems to happen when we bring together the diversity which is the hall-mark of the Alliance - young people; disabled
people; parents and allies, all sharing a common dream and all determined to make it a reality. Each group has set up a contact and e-mail list so they can be in touch with each other easily and quickly. Many identified key issues around which they want to gather support. Two groups wanted to set up young people's forums, and one wanted to become the Alliances first constituted local branch. Although it had the largest constituency, the London group was the hardest to mobilise. The fact that many potential 'leaders' of such a group are already involved in the work of the National Office in Lambeth was identified as a problem. Also the overfull diaries of activists and the difficulty in physically travelling across London were also seen as barriers to be overcome. This led to a useful insight - that the main reason to have a group is to support us to do the things we are already doing in isolation, not to cook up a whole heap of new activities to add to our exhaustion (unless of course that is what someone wants‌). With this in mind the group were enthusiastic about meeting again to plan how to help set up lots of small really local groups and/or groups meeting around a topic or campaign. It was clear from these meetings that the grass-roots inclusion movement is still alive and kicking. It is vital that we stay in as close connection to each other as possible, and constantly draw in more people. This will keep us thinking and moving forward together. The pendulum will swing back again. It is only a matter of time.
Rowen, Anne and Chrissie in Bristol
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To join one of these groups or if you would like to start one, please contact the Alliance Office (details on back page)
Le
s . . r . e t t
Dear The meeting of the Yorkshire and the North West region of the Alliance was lively and inspiring. I particularly noticed that parents of older children and young people told stories of difficult struggles for inclusion, struggles that I have not come across with my 9 year old daughter. Even allowing for regional variations this gives a strong indication that what we are doing is working, that we should not underestimate our power. For the first time in my experience, we talked about the impact of class issues on the inclusion movement. The strong belief in paper qualifications as a measure of worth is a real middle class thing. Growing up in a family where both parents left school at 14, Dad to work as a porter at a train station, and Mum 'in service' meant that academically at least, my brother's learning difficulties were not a problem to the family. To my family's puzzlement, I enjoyed school and went on to university, and they were duly proud, but perhaps not as proud as the fact that their son could read the TV Times. Now with two children of my own I am quite clear that their worth is not measured in GCSE's. I have one confident and academically able son who is simply not interested in working for exams, and many puzzled friends and acquaintances who can't understand why I am not worried, disappointed, angry etc. that he is ditching A levels for a plumbing apprenticeship. My daughter is grappling with reading, writing and maths in her own good time. GCSE passes are extremely unlikely, but so what! I don't believe in inclusion so that she can get qualifications and all that brings, but so she can have friends, a community and a sense of belonging. Of course all children should have the opportunity to do as well as they choose at school, and that is clearly the right route for many disabled children. The Yorkshire and North West Alliance
But I wonder, does the inclusion movement's apparent focus on the academic outputs of mainstream schooling exclude many working class families? Do we need to re-brand inclusion to clearly mean inclusion in family, community and school life - as a route to a safer, happier adult life? If we are going to make our movement more inclusive, this uncomfortable debate is one we need to have - please join it. Liz Wilson
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Feature
SPECIAL COLLEGE... PREPARING FOR A LIFE THAT NEVER BEGINS One teacher gives us a view of life on the inside of a residential college as a teacher in a residential college for i work young adults with a variety of learning disabilities. Students can spend up to ten years here ostensibly being prepared for "independent living", although to my mind, those responsible for providing this training simply do not comprehend its meaning and thus fail. The whole place is steeped in an old fashioned boarding school type of atmosphere, which I believe crushes rather than nurtures self belief. Much emphasis is placed on "breaking 'em into a routine". The students success and even value are measured according to how well they comply with the college routine. Teaching is confused with controlling and learning is confused with obeying.
Group activity: Identify correct day of the week, reinforce individual and group aims using signs and symbol cards, collect instruments from unfamiliar places (around the room) , identify instruments by matching flash cards to real objects. Student Aims: Miss A: About the size of an eight year old, confined to wheelchair, frequently needs oxygen; student aims include; take turns to speak when working in group, co operate by not being distractive to others and respond appropriately during group activity.
As part of my ongoing training I recently had to Mr I: observe and write a review of a lesson delivered Mr I's list of student aims begins by stating that by a colleague, it is reproduced here in an he should use his personal communication book adapted form and I believe is a good illustration to help him make choices and requests. And to of the points I am making. It was a music lesson actively participate for ten minutes in this two and consisted of a group of about six students hour lesson. The communications book consists and three staff sat round a large table examining a small collection of ethnic instruments. I will describe the lesson overall, and also look at TEACHING IS CONFUSED WITH individual students and their "learning goals". CONTROLLING AND LEARNING IS The whole lesson had a definite nursery school feel to it and all CONFUSED WITH OBEYING those present must have been sitting through stuff like this since they were five. of simple drawings mostly of his favourite foods All the students and also the classroom assistant and activities plus a few things like shower and had a bored glazed over look about them and it bed. He definitely understands that it is a means was obvious all were there under sufferance. of making requests, and when he had the book Some looked at their feet or out of the window. at first used to show staff members pictures of So here we go.
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what he wanted in the belief that it would then be granted to him, which of course it never was. Unsurprisingly it is becoming increasingly difficult to get him to use this book. Although present in the bodily sense throughout the lesson, Mr I did his best to remain elsewhere in his mind, and sat facing away from the group delicately colouring a picture with felt tips.
department, selects the one she wanted, and holds it up saying "Me want this one". Monday morning back in class, Miss P's "learning goal" for a lesson lasting most of the morning: "Find familiar instruments in unfamiliar places." which she reluctantly does after a lot of prompting. The reluctance is treated as part of her problem and any compliance as a teaching triumph. Unable or unwilling to verbalise their disinterest and unlikely to be heeded even if they did, they go off to lessons that for the greater part hold no interest, meaning or relevance to them.
Mr M: The most compliant member of the group, small, shy, and with a general air of being hen pecked, he switches several times a day from exuberance to despondency and then back usually for obscure reasons. THE GOALS FOR THE MOST Even to someone meeting him PART WILL NEVER BE ACHIEVED for the first time, it is immediately apparent which of AND OF COURSE NO NEW ONES these moods he is in and, it has to be said, little that can be CAN BE SET done to change it. Rather curiously then, Mr M's first student aim is to use speech, The goals for the most part will never be signing or flash card, to tell staff if he is feeling achieved, and of course no new ones can be set angry or unhappy, and to ask for help if needed. until present ones have been attained. So there The next goal is "To make eye contact when they sit, doomed to go on re-enacting their first speaking following a prompt" (add your own year at school probably for the rest of their lives, comments) being kept artificially immature and incapable, and prepared for life in the outside world by Miss P: having their experience of it restricted. Saturday afternoon, Matalan, Miss P has gone there with care staff to buy a bag she saw a week or more ago, at the entrance, she confidently marches off through the crowd on her own, despite her tiny stature, and after a detour to look at some dresses, goes to the bag
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Young Voices Left: The young people outside the UN (left to right) Nancy, Rubel, Nazma,Lucia,Yao and Shi (Photo:K.Turner)
UN MOVES IN THE RIGHT DIRECTION The United Nations, a body set up at the end of the Second World War and now representing 191 countries, has a powerful role to play in not only promoting peace but also on economic and social development, human rights and programs to end world poverty. Implicit in the work of the UN is an understanding that gaining basic human rights for all individuals, particularly for the less powerful, lays a strong foundation for world peace. So it was an influential platform the six young people shared.
here are moves at the United Nations that can make disabled young people go ‘Wow!’ Being given a chance to speak and make public the concerns of disabled young people was just one of them. At the Ad Hoc Committee set up to draft the UN Convention on the Human Rights of People with Disabilities in New York in January this year, six young disabled people on behalf of ‘Save the Children’ had their say.
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Together, Rubel and Nazma (from Bangladesh), Shi and Yao (from China), Lucia and Nancy (from the UK), identified several issues relating to disabled children that they wished to have addressed. These ranged from ending violence against disabled children, promoting inclusion, not sending disabled children to institutions, consulting and sharing information with them and supporting their families.
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Nazma said how one of her friends, a domestic worker who has polio, was punished by being burnt with a hot spoon. She pleaded for an end to violence against disabled children. Shi said that she had missed out on many opportunities in life because her disability had caused economic and psychological distress to her family. Had her family been provided for financially by the government and given support and information, she would have had a better role in society. Yao spoke of the real need for an inclusive policy. He himself had been denied a proper education and was harassed by his classmates. Eventually he moved to another school and found a teacher who helped him, thus leading to his acceptance by his peers. He said how a disabled child’s whole outlook on the world is shaped by the treatment the child receives. The importance of inclusive education was also highlighted by Lucia. She said a survey in the UK showed that disabled children educated in special schools were less likely to get into higher education or work than those who attended mainstream schools. They were also more likely to be socially excluded and be placed in the mental health system. Lucia was in special school only till the age of 8 and compared to these classmates,
was the only one who attended university. She now teaches English in France. She said that many disabled children who attended segregated schools lacked the confidence to live independently or take control of their lives. Finally, it was up to Nancy to echo the words of the disabled people’s movement when she said “Nothing about us without us!” The Chair, Ambassador McKay, from New Zealand thanked the young people. “Your eloquence and personal experience will have had a great impact on delegations today” he said.
The Convention is busy drafting Article 24 which is to do with education. Inclusive education is embedded in this Article but it was by no means an easy gain. At one point it appeared that ‘choice’ of special or mainstream schooling was the overriding principle but it was deftly argued out because ‘choice’ would encourage the development of special schools. This is not what most people present wanted. The working draft can be accessed on: http://www.un.org/esa/socdev/enable/rights/ahc 7ann2rep.htm.
In a separate fringe meeting at the convention, two other young people - Lucy Mason and Tom Minor from HEYA (Helping Empower Young Activists) called for “360 degree inclusion” and the need for urgency. “The longer we wait to implement human rights, the less those rights can shape the life of a person. Without radical changes made within the lives of disabled children, the lives of disabled adults will always be negatively affected by a legacy of social exclusion” they said. Nancy speaking Yao speaking
“Nothing about us without us!” There will be another UN Ad Hoc Committee in August this year. At the end of this, the agreed Convention will be put before the General Assembly of the United Nations. It will then serve as a legal framework to ensure the rights and freedoms of disabled people worldwide. For young disabled people struggling for inclusion in isolated or populous places around the globe, there will at last be a document which says in clear letters that inclusive education is a basic human right and the foundation for a better life for all.
Preethi Manuel
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Report THE EDUCATION AND INSPECTIONS BILL 2006: A MAJOR ATTACK ON INCLUSIVE EDUCATION he Education and Inspections Bill currently making its way through Parliament needs to be opposed by all those who support inclusive education and a state education system. The Bill opens the way for the wholesale privatisation of the education system.
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The Bill will allow governors of all schools primary, special and secondary to turn the school into a 'foundation' run by business and religious sponsors without even consulting the parents, staff or pupils of the school. The sponsors will have a majority on the governing body and can use this to narrow the curriculum, set their pay and conditions for staff. Already by law the only qualified teacher in the school has to be the Headteacher.
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Bill will allow all such foundation schools 2 The primary and secondary - to have control of their admissions leading to even more overt and covert selection making the further segregation of disabled and disadvantaged children in poor 'sink' schools much more likely. Bill allows for the wholesale asset stripping 3 The of school buildings and grounds as the new trusts get ownership of these publicly owned assets. is promoting more streaming by ability even 4 Itthough the research commissioned by the Government shows that mixed ability teaching supports lower achieving pupils, including disabled pupils to achieve much more than in streamed classes. Bill transforms 14-19 year old curriculum and 5 The will deny many young people access to subjects such as history, geography, art, drama, music and languages and instead put them on vocational courses narrowing their opportunities in life.
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Bill allows for OFSTED to recommend the 6 The closure of any school which fails to improve in just one year. It will only be allowed to reopen as a foundation/trust school. Bill increases the role of special schools 7 The setting up 50 trailblazer special schools. Bill removes all parents from the new 8 The foundation governing bodies and is based on the false idea of parental choice. Authorities will only be able to open new 9 Local community schools with the permission of the secretary of state. Authorities are being pushed to 10 Local become commissioners of education rather than providers of education. SEN support services and specialist teachers who support inclusion are all threatened. Why is this attack on state education occurring? The Government would have us believe that this is to raise standards and promote parental choice. Nothing could be further from the truth. The World Trade Organisation backed by big business is trying to get its hands on the very substantial amount of money spent on education. This is happening everywhere around the world. It is about profit and privatisation. If you value free comprehensive primary and secondary state education now is the time to take a stand. Already the Government has had to back track. But the essential elements of their plan are all still in place. Standards in our schools have gone up every year for the last 20 years. Disabled pupils in mainstream schools do 7 x better in their GCSE than disabled pupils in special schools. But most parents want their children to achieve and be happy at school. Parents want a good local school
for their children to attend, not to have to compete for schools to choose their child which is the reality. In an increasingly competitive situation of school choice due to disabilism disabled children will lose out. If schools have more choice in who they admit why will they admit pupils with special educational needs? New Labour are infatuated with City Academies and are using these as a model for the new part privatised state system they want to see. Academies don't have to teach the national curriculum and can pay their staff what they like. Already creationism is on the curriculum in some. Academies do not have to accept statemented pupils that the Local Authority or even SENDIST place there. There is evidence of high rates of exclusion of disabled pupils. Despite the lack of any evidence of their effectiveness the Government is pushing all schools to move
foundation status. Already funding bribes are being used alongside threats to push schools in this direction. Over Easter the largest teachers union the NUT voted unanimously to oppose the Bill. Many Local authorities are opposed to it. If enough of us say NO! it can be stopped. Look what happened in France. Much progress has been made in developing inclusive education in our comprehensive primary and secondary schools don't let this be sacrificed on New Labours ideological altar of privatisation.
If you think this should not be happening contact your local MP urgently. Organise a meeting of parents and staff at your school and begin to fight back!
Richard Rieser
OPPORTUNITY TO INFLUENCE TORY EDUCATION POLICY The Conservative Minister with the disability portfolio, Jeremy Hunt MP, is organising a series of seminars on a range of issues - Health & Social Care, Transport, Housing and Education. The Alliance has an invite to the Education Seminar on the 4th July and will be putting forward our case for inclusive early years and education provision for ALL disabled children. As we know, since the arrival of David Cameron as Tory Leader, the Conservative party policy on education has drifted towards a position of greater parental choice but, in reality this can only mean disabled children and their families being forced into segregation choices, not what is undoubtedly in the best interests of their child Inclusion. See our September edition for a full report.
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Issue
THE RIGHT TO LIVE ssues of assisted suicide, or 'voluntary euthanasia' get a lot of news coverage. And this coverage almost always takes the view that the vast majority of the population supports the idea that to allow chronically ill or disabled people to die before their natural time must be 'good and merciful'.
Lois Keith
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Unless of course you are disabled yourself or love some-one who is, in which case the whole argument becomes a lot more complicated and a lot more personal. As the 10 year old disabled daughter of a friend of mine put it a few years ago, when listening to one radio interviewee after another say how important it was for Diane Pretty's husband to be legally allowed to hasten her death. 'Why do they all want us to die, mummy?' Out of the mouths of babes, as they say. So it came as a welcome piece of news last month when, Mr Justice Holman ruled that a 19 month old baby boy with a severe form of muscular atrophy should be kept alive. 'Baby MB' as he has to be known, has lived in a high dependency unit since he was seven weeks old. At the hearing, 14 medics, including two independent doctors called by the parents, told the hearing that his quality of life was so poor that he should be allowed to die. Yet despite this, the judge said that he felt that the child gained enough pleasure from life to outweigh
the medical evidence of his condition. He argued that Baby MB could probably see, hear and feel, taking pleasure from the eight or nine hours he spent with his family each day. He added. "No court has yet been asked to approve, against the will of the parents, the withdrawal of life support with the inevitable and immediate death of a conscious child with sensory awareness and cognition, and no significant evidence of brain damage." This does not signify the end of the matter and the judgement does not mean that the doctors would have to give Baby MB treatment in any future situation that may occur. However, for those campaigning for the rights of life for disabled people, the words of the family's solicitor should give some encouragement. 'The court has agreed with the assessment of Baby MB's quality of life by those people who know him best." And those people are his family.
Not Dead Yet UK (NDYUK) is a network of disabled people in the UK who have joined a growing international alliance of disabled people, who oppose the legalisation of killing of disabled people. All those involved are disabled people including people with physical and sensory impairments, learning difficulties, and mental distress. Founded in 2006, NDYUK was convened by Jane Campbell, a disabled person with direct personal as well as professional experience of the issues. NDYUK is responding to an increasing number of well co-ordinated campaigns aimed at legitimising the killing of terminally ill and disabled people, which would inevitably result from the removal of legal barriers and the promotion of social acceptance of voluntary euthanasia and assisted suicide. To find out more go to: www.livingwithdignity.info
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Poem
Q: When is murder not murder? A few short paragraphs towards the back of the Saturday newspaper tells me about Patrick, aged 37, DEAD. Killed by his mother, they say very little about him. His personality, his life, his story, Are summed up by two short words Down's Syndrome. These two words explain why a woman described by her neighbours as 'quiet', 'pleasant', 'a lovely lady', Could commit a crime so dreadful, the murder of her son, And receive sympathy not disgust. The article explains; Patrick stopped going to the day centre a year or so ago. (I wonder why?) Patrick needed his mum in the night, every night. (Ever heard of Direct Payments, P.A's?) A loving mother snapped. (Is it just me that calls it murder?) She was not found guilty of murder. She did not go to prison. Patrick, you were born into a world that never wanted you. Some of us are working to change that, and as for me, The little bit I know about your life, your death, Gives me the strength to carry on.
A: when you kill a disabled person! Liz Wilson
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SOME THOUGHTS ABOUT ‘CARE’ by Caroline Mac Keith element of care in the process of inclusion T he has been taxing me for some time. I've been asking myself why we are so frightened of needing to give or receive care. It seems to me that in a rational world the giving and receiving of care would be the highest honour with the highest status. In our society now, those who are paid to give 'care' are paid minimum wages with the lowest status, making it a job often done quickly with little attention to detail, leaving the recipient sometimes feeling physically and emotionally uncomfortable. This is not the fault of the person in this role, as with such low pay, jobs have to be rushed as a survival strategy. Those in an unpaid role are seen as doing nothing. It seems to me that 'independence' is such an obsession, that anyone in a role of assisting a 'dependent' person takes the brunt of that obsession along with that 'dependent' person. We have to counteract this!!! To move towards real inclusion we have to build a culture which values the skills of 'care' and 'assistance'. They have to be recognised as skills needing learning and support over many years, in the same way that teachers or health care workers need ongoing training. To help us think about who and what we are looking for, I now see assistance in layers or levels.
Somebody with this knowledge and awareness needs to be 'on tap' all the time, even if only 'on call' and not actually there. Level 2 - Assistance This level is carrying out the decisions the disabled person has made about what she wants to do, which makes life worth living e.g ● ● ● ● ● ● ● ● ●
Here different activities will need people with different skills e.g. reading or studying needs somebody who enjoys, and is good at these things, and tends to be structured time, whereas socialising needs different skills. Level 3 - Enabling This is being able to act as mediator or advocate to make life good e.g ●
Level 1 - Care This level is the assistance needed to stay alive e.g ●
● ●
●
Understanding and knowledge of health care needs, e.g.diabetes. Eating All aspects of personal care, e.g. getting up, washing and dressing. Basic level of communication.
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How personal care should be carried out. Transport- driving or other transport Handling the wheelchair, electric or manual Going out Reading Studying/research Administration e.g. letters etc Socialising Communication- various levels depending on activity
● ●
● ●
In the world, e.g. to make friends Taking part in the wider community Communication, either 'hands on' facilitation or as an ally paving the way. Dialogue/experiments/ discussion Dreaming and thinking
This is the level of pushing forward, and finding and making allies. This level needs a real understanding about how the discrimination
From my experience as a parent of a young person needing high levels of support.
works with its institutional fear, however covert, and needs the skills in mediation to deal with that. These levels, of course, overlap, e.g. care enables, and there are levels of care and attention to detail, but thinking like this has helped me to understand what is lacking sometimes and why it is so difficult to get it right. Assistance and enabling are intermingled, e.g. there might be two people with different skills needed at a meeting where there is dialogue and decision making. There are times when it is difficult to know if it is appropriate to prompt (enable), or stay silent and let something go because the assistance hasn't been asked for. We need to recognise and debrief to enhance our assistance skills.
We have reasonably high status for planning/ intervention, but the realisation of the 24 hour process of carrying out the plan has very low status. These thoughts are based on the Social Model of disability: That it is normal to have an impairment and it is our environment and attitudes which disable, not the impairment itself. I would like these thoughts to be a starting point for discussion with other people's insights and good and bad experiences Caroline Mac Keith Contact Caroline on: caroline@mackeith.net
To get good quality level 2 we have to have input on level 3, e.g. to get assistance with study, and be in control of where to research and what to read, without being able to browse, needs dialogue and experimenting. On all 3 levels, for a good quality of life, there has to be some love and attention, but at the same time input on all three levels can be bought in. It is all a fine balance. We cannot have inclusion without these three levels and: â—?
All 3 levels are highly skilled in their own way
â—?
It is doubtful that anybody has all the skills needed for all the levels
â—?
The status for 24 hour input is very low
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Training
The Inclusion Training Pathway How parents are part of changing the world The Inclusion Training Pathway is empowerment training for parents of disabled children, which equips them with the skills and knowledge to be excellent allies to their young people. It also offers the opportunity to take part in Parents for Inclusion's work, reaching more parents. Apprentices can learn how to facilitate inclusion groups, lead training or work on the helpline. The Pathway is very flexible, designed to fit in with busy and unpredictable lives of parents. It combines a mixture of attending workshops, including a three day ‘Planning Positive Futures’, with distance learning in your own time, and supervised practice out in the field. On March 21st, as part of Parents for Inclusion's AGM, we celebrated the graduation of 10 parents from different parts of the country. These are some of their reflections given at their final interview:
"The more I heard about children with high support needs being included in mainstream schools the more I became convinced that there is always a way to adapt and change a situation around the child." "For me being an ally to my daughter I had to see myself as a world changer. I couldn't have done that without disabled people and other parents who understand that things cannot change overnight." "What I found was a language for my feelings and thoughts, I found an explanation for what I wanted for my son, it gave me information on how to support him well. Because my thinking changed from 'fitting him in' to 'here are access issues that need to be resolved'. I feel empowered to talk about inclusion as a human rights issue." "One of the highlights for me in becoming a Pi trainer was to recognise the power of the training, watching participants change and develop." What did you learn? "I learnt about the concepts of allies and the internalised oppression. Only quite recently I understood where my own expectations of my son come from." "I learnt to listen."
What did you gain from doing the Pathway? "It helped me decide that my daughter was not going to be institutionalised for ever and all her life. It gave me a vision of her independent life in the community which is now a reality." "It was a wonderful moment to find someone who thinks the same as me."
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Graduates of 2006
"When supporting parents in their dealings with professionals I will bring the focus always back to the young person, I will insist that the child's view is heard" What will you do next? "I want to set up inclusion groups for parents in my LEA and mentor training at the local schools. I want to create a community for my son which includes other disabled people, a community of equals who are not the same."
A trainer graduates
"The wonderful techniques Pi uses: your child is a brilliant star, getting parents to face their fears as well as to reconnect with a child without the 'problem' labels, inclusion groups in schools for parents, helping parents to identify small practical steps in a framework of on-going support and a big vision. The importance for trainers of practising in a supported environment." "For me as a parent and DET trainer it was a novel idea to have parents of disabled young people and disabled adults working as allies." How will you use the skills and insights you have gained? "I can make a big difference to parents and how they see their child by bringing more positive thoughts to their relationships, by inviting them to dream ‌. Parents can feel very empowered if I model listening and being an ally, and often transfer this to their young person."
"I want to write up my experiences of being an ally to my daughter. I am doing an analysis of what I have spent my life doing and this is important, as it is unrecognised."
If you are a parent and you are interested in taking part in the Inclusion Training Pathway, or you would like to know more about it please contact Parents for Inclusion's training team (Cornelia, Pam and Linda) on 020 7735 7735 Cornelia Broesskamp
Cornelia brings the cake
Inclusion Helpline
0800 652 3145 Monday and Thursday 10 - 12am and 1 - 3pm Textphone: 020 7582 5333
YOU CAN NOW CALL THE HELPLINE FOR FREE!
Calls taken by trained and experienced parents.
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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: Platinum Trust, DfES, Comic Relief
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 of 160 trainers is supported by the Director, Richard Rieser, and the clerical support team. DEE: Unit 1M, 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
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 Mon and Thurs: 10 - 12am & 1 - 3pm. Calls are taken by trained and experienced parents. Funders: Platinum Trust, Paul Hamlyn Foundation, Association of London Government, Lambeth EYDCP, SureStart Kennington, Bridge House Estates, City Parochial Foundation, Lloyds TSB.
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.
“ALL OUR CHILDREN BELONG TOGETHER�