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Inclusion Now Articles Issue 24

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Apprenticeships - Minister's visit is a big hit

Obama Signs Up - The President's speech on signing the UNCRPD

Salamance Conference- Resolution renews global commitment

Curriculum Concerns - Ensuring the school curriculum includes disabled people

The Big Red Bus- Supporting inclusion by building teams around children

An Interview with Robin Hill - a young person reflects on school

London Autism Rights Movement - Roderick Cobley, Chair, gives his views on inclusion

Mind Your Language #2 - Lois Keith unpicks the term 'carer'

Promoting Emotional Education - Book review

Aiming High for Disabled Children - Parent focus group look at Short Breaks

Pi's Inclusion Training Pathway

The London Eye Mystery - Book Review



Apprenticeships - Minister is a big hit!

Hertfordshire PASS's WorkABILITY* has three apprentices - myself (Katie Fraser, Support Co-ordinator), Patrick Fitzgerald (Placements Co-ordinator) and Andrew Bird (Access Co-ordinator). We had a visit from the minister for apprenticeships, Lord Young who came to listen to our stories about being an apprentice.

We talked a lot about the benefit trap, support and equipment that we needed, longer time needed to complete our Business Administration NVQ and the Government's proposals to require 5 GCSEs to get an apprenticeship placement.

We then had a session with Lord Young to showcase our work which we were most proud of. Andrew showed him a Big Lottery Fund's newsletter article on the Summer Job Forum. I showed Lord Young the photos, a folder of agendas and evaluation forms of the Summer Job forum that I ran with Mat Fraser, a disabled actor. Patrick showed Lord Young the students, job vacancies and company databases.
I think the visit was really good and a hit because we felt that our opinions were being heard and listened to. I hope Lord Young will share with Government what he has found out by visiting us and hearing our stories of being an apprentice. We want Government to change the Apprenticeships, Skills, Children and Learning Bill so that all young people can have an equal chance to do their apprenticeships.

*WorkABILITY is a project run by Hertfordshire PASS which helps young disabled people with a physical or learning disabilities. Hertfordshire PASS is a user-lead driven organisation which enables disabled people to "overcome barriers to work".

Alliance for Inclusive Education organised the event with Hertfordshire PASS. This was part of ALLFIE's campaign to get an inclusive apprenticeship scheme where everyone can work and learn together. See ALLFIE's briefings at www.allfie.org.uk
Katie Fraser

 

Obama Signs Up
Excerpts from President Obama's speech on signing the U.N. Convention on the Rights of Persons with Disabilities Proclamation, July 24 2009

"Nineteen years ago this weekend, Democrats and Republicans, advocates and ordinary Americans, came together here at the White House to watch President George H.W. Bush sign the ADA into law. Folks travelled from all across America to witness a milestone in the long march to achieve equal opportunity for all.

But like all great movements, this one did not begin or end in Washington, D.C. It began in small towns and big cities across this country. It began with people like Fraser Robinson showing that they can be full contributors to society regardless of the lack of awareness of others. It began when people refused to accept a second-class status in America. It began when they not only refused to accept the way the world saw them, but also the way they had seen themselves.

And when quiet acts of persistence and perseverance were coupled with vocal acts of advocacy, a movement grew, and people marched and organized and testified. And parents of children with disabilities asked why their children, who had the same hopes and dreams as children everywhere else, were left out and left behind. And wounded veterans came home from war only to find that, despite their sacrifice for America, they now felt excluded from America's promise.

Those experiences could have just been internalized and people could have felt doubt, but instead it became a source of strength. And step by step, progress was won. Laws were changed. Americans with disabilities were finally guaranteed the right to vote -- a right that only carries real meaning when you can enter the voting booth to cast that vote. Folks were extended certain protections from discrimination, and given the needed rehabilitation and training to go to the job. And even though we still have a long way to go with regard to education, children with disabilities were no longer excluded, no longer kept separate, and then no longer denied the opportunity to learn the same skills in the same classroom as other children.

Now, even two decades ago, too many barriers still stood. Too many Americans suffered under segregation and discrimination. Americans with disabilities were still measured by what folks thought they couldn't do -- not by what can. Employers often assumed disabled meant unable. Millions of Americans with disabilities were eager to work, but couldn't find a job. An employer could have told a person with a disability, "No, we don't hire your kind." That person then could have tried to find recourse at the courthouse, only to find that she couldn't enter the building -- and wouldn't find a receptive audience even if she did.

What was needed was a bill of rights for persons with disabilities, and that's what the ADA was. It was a formal acknowledgment that Americans with disabilities are Americans first, and they are entitled to the same rights and freedoms as everybody else: a right to belong and participate fully in the American experience; a right to dignity and respect in the workplace and beyond; the freedom to make of our lives what we will.

In a time when so many doubted that people with disabilities could participate in our society, contribute to our economy, or support their families, the ADA assumed they could. Americans with disabilities didn't ask for charity or demand special treatment -- they only wanted a fair shot at opportunity. They didn't want to be isolated, they wanted to be integrated; not dependent, but independent. And allowing all Americans to engage in our society and our economy is in our national interest, especially now, when we all have a part to play to build a new foundation for America's lasting prosperity.

So the ADA showed the world our full commitment to the rights of people with disabilities -- and now we have an opportunity to live up to that commitment. Today, 650 million people -- 10 percent of the world's population -- live with a disability. In developing countries, 90 percent of children with disabilities don't attend school. Women and girls with disabilities are too often subject to deep discrimination.

Disability rights aren't just civil rights to be enforced here at home; they're universal rights to be recognized and promoted around the world. And that's why I'm proud to announce that next week, the United States of America will join 140 other nations in signing the United Nations Convention on the Rights of Persons with Disabilities -- the first new human rights convention of the 21st century.

This extraordinary treaty calls on all nations to guarantee rights like those afforded under the ADA. It urges equal protection and equal benefits before the law for all citizens; reaffirms the inherent dignity and worth and independence of all persons with disabilities worldwide. I've instructed Ambassador Susan Rice to formally sign the Convention at the United Nations in New York next week, and I hope that the Senate can give swift consideration and approval to the Convention once I submit it for their advice and consent.

So I'm proud of the progress we've made. But I'm not satisfied, and I know you aren't either. Until every American with a disability can learn in their local public school in the manner best for them, until they can apply for a job without fear of discrimination, and live and work independently in their communities if that's what they choose, we've got more work to do. As long as we as a people still too easily succumb to casual discrimination or fear of the unfamiliar, we've still got more work to do.

As we continue that work, we should remember just who it was that the ADA was all about. It was about the young girl with cerebral palsy who just wanted to see a movie at her local theater, but was turned away. It was about the Vietnam veteran who returned home paralyzed and said he felt like he'd fought for everyone but himself. It was about the thousands of people with disabilities who showed up at public hearings all across the country to share their stories of exclusion and injustice -- and the millions more they spoke up for.

Every morning, I walk along the Colonnade that connects this house to the Oval Office. And there's something you might not notice unless you're really paying attention -- and I'll be honest, when I take that walk, I usually have a lot on my mind. (Laughter.) But there's a gentle slope at the end of that Colonnade, a ramp that was installed during a renovation of the West Wing 75 years ago, making it much easier for one of my predecessors to get to work.

Back then, fear and prejudice towards Americans with disabilities was the norm, but most Americans didn't even know that President Roosevelt had a disability. That means that what most Americans also didn't know was that President Roosevelt's disability made absolutely no difference to his ability to renew our confidence, or rescue our economy, and mobilize our greatest generation to save our way of life.

Let me correct that -- I actually think it did make a difference in a positive way. What he told us was that "further progress must of necessity depend on a deeper understanding on the part of every man and woman in the United States." I believe we're getting there. And today, because more than one in five Americans live with a disability -- and chances are, the rest of us love somebody with one -- we remember our obligation to ensuring their every chance to pursue the American Dream. We celebrate the courage and commitment of those who brought us to this point. And we recommit ourselves to building a world free of unnecessary barriers and full of that deeper understanding.

So thank you, all, for being here. Let's sign this bill."
(The proclamation is signed)


Salamanca Conference - Resolution renews global commitment

Salamanca Conference Resolution October 2009
"We the undersigned participants in the Global Conference on Inclusive Education- 'Confronting the Gap: Rights, Rhetoric, Reality? Return to Salamanca' held at the University of Salamanca, Salamanca, Spain

1. Reaffirm the commitment of the Salamanca Statement (1994) and commit to develop an inclusive education system in every country of the world. We welcome the UN Convention on the Rights of People with Disabilities (UNCRPD) and in particular Article 24 which gives new impetus to the Human Right of inclusive education for all people with disabilities.

2. We understand inclusive education to be a process where mainstream schools and early years settings are transformed so that all children/students are supported to meet their academic and social potential and involves removing barriers in environment, attitudes, communication, curriculum, teaching, socialisation and assessment at all levels.

3. We call on all Governments to ratify the UNCRPD and to develop and implement concrete plans to ensure the development of inclusive education for all. In addition we call on international agencies such as UNESCO, UNICEF and The World Bank to increase and prioritize their efforts to support the development of inclusive education.

4. We commit ourselves to form an alliance to transform global efforts to achieve Education for All creating better education for all through the development of inclusive education and hereby launch INITIATIVE 24 as a vehicle to achieve our goal."



Curriculum Concerns

It is time that the school curriculum fully reflected the lives of disabled people.

Have you ever thought why it is that the lives and experience of people with long term physical and mental impairments do not feature in the deemed useful knowledge, skills and understanding that make up the National Curriculum, that children in England are expected to learn in order to demonstrate that they have received an education?

We may now number 24% of the population or 14 million, but this does not ensure disabled people a place in the school curriculum. Our invisibility is nothing surprising. But since December 2006 schools and Local Authorities and the DCSF and it's band of QUANGOs such as OFSTED, QCA and TDA have been under a legal duty to promote positive attitudes to disabled people.

The problem is deep seated. In education, as in society, the 'normal' and the ordinary are our focus. The 'different' are the exceptions, that is until you do the Maths and find out the ordinary are in a distinct minority. Women, ethnic minorities, refugees, disabled people, people with alternative sexual orientations, working class people are in a distinct majority.

The other day I was giving a lesson in a year 4 class on disabled people who have made a difference to this world we live in. Julius Caesar (Epilepsy), Milton (Blind), Goya and Beethoven (Deaf), George Couthon (wheelchair using French Revolutionary), Toulouse Lautrec, Monet, Manet, Van Gogh (disabled artists), Claire Blanchard and Frida Kahlo (disabled women artists), C20th revolutionaries Gramsci and Che Guevara (short stature and chronic asthma), Musicians Stevie Wonder and Ray Charles (Blind), Evelyn Glennie (Deaf), Ian Dury (Post polio), Franklin D Roosevelt - 4 times elected president USA (Wheelchair user-polio both legs), Albert Einstein (Aspergers), Stephen Hawking (Motor Neuron), David Blunkett and Gordon Brown (visually impaired politicians) to name but a few.

There's an old German proverb 'The cripple always leads the dance' and this certainly bears examination. Of course the word 'cripple' is now viewed as offensive as are words like 'idiot', 'handicapped' and 'invalid'. But each has its historical meaning and reflects the attitudes of its time. Unpacking the meaning and its historical significance is a suitable case for curriculum study. The various words used for disabled people in any language can be the focus of a modern languages lesson.

Our English literature is full of disabled characters usually with a disability stereotype attached: Shakespeare's Richard III or The Tempest, Charles Dickens' Christmas Carol or the Old Curiosity Shop, Heidi, Secret Garden or What Katy Did, To Kill a Mockingbird, Of Mice and Men, Brave New World and many others.

Following literature, film, since its inception has exaggerated impairment to impute characterisation and unnecessary plot twists.
(see www.bfi.org.uk/disablingimagery)

From Treasure Island to the X-men, from the Phantom of the Opera to James Bond, disabled people have been used to create atmosphere, fear and freakdom.

When looking at number, why not measure the gradient to ramp the school safely or measure door widths and turning circles; or look at the 6 pattern of a dice and work out how many combinations are possible - the basis of Braille.

In geography, why not map the accessibility around the school or look at the geographic variation in the distribution of disabled people in USA or your local town using census data.

History has no shortage of areas - Greek and Roman negative attitudes to disabled people, the witch hunts of 1480 to 1680, Eugenics, First and 2nd World War and the treatment of disabled veterans, the rise of the modern disability movement.

In ICT, check out IT accessibility, how many websites comply; examine alternative forms of communication.
In science, examine the full diversity of the human form, examine genetics and the associated moral issues and the use of false science such as eugenics.

One disabled student, after studying how Frida Kahlo brought her impairments into her art, completed a piece showing her scoliosis for her GCE Art, gaining top marks.

In music, examine the lives of disabled performers or composers and examine the story line and musical interpretation in Rigoletto or Porgy and Bess.

There is certainly no shortage of curriculum material and we have not even examined positive portrayals in books, film and drama.

Ed Balls, Secretary of State, in his report in December 2008 on the impact of the Duty to Promote Disability Equality, rightly identified a gap and commissioned the Qualification and Curriculum Authority (QCA) to carry out a project to exemplify best practice in how schools could promote disability equality in the curriculum.

I have been asked to conduct this work and am interested in hearing from schools that have tried bringing disability equality into their curriculum. If you would like to try out lessons there are many more ideas on my website:
www.worldofinclusion.com

If you would like to try these out and then write up what you did, how you did it and its impact on pupils, or if you already have a scheme of work you would be happy to share please contact me at: richardrieser@worldofinclusion.com
Richard Rieser



The Big Red Bus - Supporting inclusion by building teams around children

The Big Red Bus is a set of easy to use materials designed to identify a group of adults within a school who have special significance to a child in difficulty and who are willing to work together over a short period to offer some additional support to that child.

The materials are designed for use with pupils across the age range but are probably most appropriate for those in Key Stages 2 and 3.

HOW DOES IT WORK? The materials are divided into two stages. The first is an interactive assessment in which the child is asked to identify a group of adults within the school who are in some way significant to them. These are the adults who will be 'going on the Big Red Bus' and who will form a team on behalf of the child. The second stage involves holding a meeting with these adults which uses a needs focussed and group-led framework to identify possible roles and tasks which the group members are willing to volunteer for.

HOW IS IT DIFFERENT? The basic principle running through the materials is that it is primarily people who make the difference and not the strategy employed. To this end the Big Red Bus incorporates a number of unique features:

The child identifies who he or she wants to be in their 'team', often including people who nobody would have predicted e.g. they might choose someone who supported them in reception even though they are now in Year 6, or they might choose the school secretary who is the only one who says hello to them each morning. The important thing is that it is their choice. Most adults find it highly motivating to be told that they have been chosen by the child.

After the child has identified who they want to be on their 'Bus' each person is invited to attend a meeting. This meeting usually takes about 45 minutes. It is led by an outside facilitator who explains that the meeting will try and identify ways in which as a group we can work together to support the child over a fixed period, usually about 6 weeks. The team work together to share thoughts about what the child is telling us about their needs.

After a list of possible needs has been generated, the group is asked to think of some roles which the team could play to try and meet these needs. The specific tasks and roles are chosen by team members and not imposed from outside. One role which came up in a meeting was 'escapologist' which was in response to 'a need to escape' (this was a youngster who was going through a terrible time at home and just needed some periods when he could forget about all his problems).

Each role and task is subjected to the 'Five minute a Day' rule. This makes any commitment seem manageable and it also allows for flexibility since someone could save up the 5 minutes and offer 25 minutes a week. Either way it fits with the principle that even a small amount of additional input can make a huge difference. Examples of roles and the actions have included:

Touchstone - Greet first thing and allow James to return at other times during the day
Praiser - See Sarah twice weekly with work she is proud of
Job Giver - Give David jobs at lunchtime to help diffuse situations
Listener - Meet Andrew and listen to his views
Interpreter - Meet Craig weekly to help him better understand the behaviours of the other children towards him

This approach is particularly helpful to the class teacher who often feels over-burdened by and responsible for the range and complexity of needs which a youngster displays. By knowing that other people are trying to support the child it can enable the class teacher to relax more and concentrate on some of the basics within the classroom. Also, as with Circle of Friends, it can have the effect of changing the predominant perceptions about the pupil and increasing the amount of good will towards them.

Planning Sheet Example:
JAMES'S BIG RED BUS TEAM

The Team is: Mrs Brown, Mrs Smith, Mr Owen, Mrs Howey

1. What thoughts have we had about what James is telling us by his behaviour?
A need for attention, a need to be first, a need to be different/noticed, a need to know that you are still there, a need to be better understood by the other children, a need for physical contact, a need to escape.

2. What roles do we need to play to help and support James?
An Explainer, an Interpreter, an Escapologist, an Educator, a Play Partner, a Touchstone, a Rewarder, a Fan.

3. Team Grid
NAME: Mrs Brown
ROLE: Coordinator
HOW: Check daily with each member of the team

NAME: Mrs Brown
ROLE: Escapologist
HOW: Read special stories to James
HOW OFTEN: 2/3 times a week

NAME: Mrs Smith
ROLE: Interpreter
HOW: Explain the behaviours of the other children to James
HOW OFTEN: when needed

NAME: Mrs Howey
ROLE: Touchstone
HOW: Greet James first thing in morning and touch base with him at other times
HOW OFTEN: Daily

NAME: Mr Owen
ROLE: Play Partner
HOW: Spend time playing football with James
HOW OFTEN: Weekly

For the full version of The Big Red Bus, including materials you are free to use and copy, please go to: http://www.inclusive-solutions.com/ideas.asp



An Interview with Robin Hill

What kind of school did you go to?
I went to Dunraven School. It is a Comprehensive Secondary school for boys and girls.

What was school like for you?
Mostly it was great. I had some lovely teachers and LSAs and as I got further up the school I made some good friends too.

What did you enjoy?
I like most things, but specially science, IT, Music Art Drama and English and talking to my friends and friendly members of staff.

What didn't work?
My first term at the school was dreadful. I hadn't been prepared for the change due to not being accepted until the last minute (the day before term started!) and as I am on the Autistic Spectrum change is always an issue for me and I need lots of preparation for new things. I was excluded four times in the first three weeks. This was because not only was I not prepared for the change, the school were not prepared for me either. My mum had to make a big fuss and have meetings and things to stop them excluding me and start them finding ways to help me settle in.

What helped?
When I got to know the place and what was expected of me. When I got to know people and they got to know me. Things like visual time tables helped in the first year or two. Also each year after the first one I went into school for a couple of hours the day before term started in Sept to walk round any new rooms I had to use and to meet any new staff and to get my timetable and stuff sorted out so the first few days were not too stressful.

I also went to talk to a Psychologist who helped me to find ways of dealing with the stress I felt in situations, specially at school. Then the Psychologist talked to the school so that they knew why I was doing certain things, like breathing and closing my eyes and rubbing my knees.. which was all part of the relaxation techniques she had taught me. The Psychologist helped the school understand how I was feeling better too.

What didn't help?
When people (staff and students) who didn't know me would shout when I didn't do what they wanted.

What is your best memory?
Oh I have so many.. like being nominated to be Prom King, like the night of the Prom when I had 8 of my friends in the stretch limo my mum got for us.. and we had such a great time... like the first time I realised I really had friends.. when people started calling on the phone and coming round to my house without being invited! Best of all though has to be The Final Prize giving when the Head teacher stood on the platform to say why I had got my prize.. and said "the school was a better place for having had me in it". My mum was so happy that night that she cried!

What is your worst memory?
Being excluded 4 times in three weeks for things I couldn't help as I was so stressed on account of all the change.

What could have been different?
I should have had proper preparation for the change of school and the school should have been better prepared for meeting my needs.

What would you say to teachers who are including young people like yourself now?
Well first I would say.. thank you so much to all the wonderful staff and students in Dunraven who in the end made my school life very happy and productive.

To other teachers I would say..well my mum would say.. and does say to everyone she meets.. read Tony Atwood's book on Aspergers... and Luke Jackson's book.. (I read that one and it is good!) Freeks, Geeks and Aspergers. Then get the leaflets from the National Autistic Society designed for teachers etc.. and then listen to the child's parents.. they have been living with him a long time and have some good ideas about what helps and what doesn't.. and take any opportunities that come along to get additional training.. or to have people in for teacher training sessions in school. Also use local special schools who have experience which may help you. We used to have a lady from Larkhall come to our school and she was great.

Most of all.. remember that inclusion doesn't mean sometimes, it means always.. all children should have full access to the full curriculum changed as necessary to make it suitable for them.

Most important of all.. work on the social issues for children.. help them and the other children to understand one another and try to help one another.. not turn away from some children because they are different.

Teachers all need to set the standard for Inclusion.. not just the staff in the special needs department. This is how the atmosphere in school changes and everyone starts to treat one another better. But it has to start with ALL the staff from the head to the cook!



London Autistic Rights Movement - Roderick Cobley, Chair, gives his views on inclusion

LARM is fully behind the principle of inclusive education - we are against segregating autistic children in special schools and believe they should be educated in a mainstream setting. We would, I think, place some special emphasis on the measures needed to ensure that the education system, including higher and further education, is fully accessible to autistic children and young people.

There are two key strands to this in my view. One is the multiple and related issues of sensory/ metabolic sensitivities that many of us on the spectrum - and which is shared to a greater or lesser extent by other neurodiverse groups including some people with head injuries for example. Many experience some sort of sensory difference (over sensitivity or under-sensitivity), for example to sounds, touch, tastes, smells, light, temperature or colours. These sensitivities combined with anxieties around social interactions can cause real difficulties that may prevent children and adults learning effectively.

So we have argued that regulations take into account the specific needs of people with a physical disability; they should also take into account the needs of people with autism. We are aware that the Commission for Architecture and the Built Environment (CABE) is currently looking at this and we welcome this development. Furthermore, many existing schools could be renovated - cheap and easy things like getting rid of reflective surfaces, patterned walls and also installing adjustable lighting would be a great help. Also, installing quiet rooms so autistic students could retreat there to avoid meltdowns.

We would also argue that writing materials should include coloured paper, for example, due to frequent intolerance of black on white script by many neurodiverse people. Finally, there should be available at school, college and university canteens caseine and gluten free foods that are not more expensive for the individual student than normal equivalent food would be.

The second strand is the communication and social needs of students. This means that training for school and college staff, not just teachers, should include awareness of the different ways that autistic people communicate and interact with the world. For example, why autistic children stim, often avoid eye contact, see things literally, and so on. It's important that the right to be different is respected - some educational approaches seek to stamp out autistic behaviours, and we feel this is wrong unless certain specific behaviours are genuinely destructive e.g. violence. Bullying is also an important issue and ways should be found to teach other students and pupils about autism, particularly if an autistic student is going to be at their school.

Most importantly in my view, schools and universities should have as a key research Alternative Communication Technologies such as PECS, Dynawriters or other communication aids which are particularly important for autistics who struggle with verbal communication. It's important to banish forever the idea that if an autistic person cannot speak then that means they have no communication ability - one that is unfortunately still all too common.

I think the final and perhaps the most important aspect is the kind of education that autistic children receive. Many of the techniques used today are really designed to be therapies, and see autism as something to be alleviated. For instance, Applied Behavourial Analysis, which seeks to build skills in autistic children by breaking everything down into small steps and teaching it repeatedly until the child gets it. Although sometimes useful, there is also too much of trying to make the child 'normal' and according to some testimonies it can lead to such techniques as trying to teach children how to sit still or hold a knife and fork "normally" and so on. Some key researchers in the field, such as Michelle Dawson or Morton Ann Gernsbacher, have argued that what really needs to happen is the development of educational techniques that match the ways that autistic children learn naturally, and programmes such as More Than Words have been developed on that basis.

LARM would be in favour of the idea of individualised learning, which recognises that all children, whether autistic/ neurodiverse or not, learns in different ways. That way, we will not have a situation where autistic children are being placed in specialised programmes which could become a new form of "special school" type arrangement but formally occurring in a mainstream setting.
Roderick Cobley, Chair, LARM

The London Autistic Rights Movement (LARM) is a civil rights organisation representing the interests of autistic people to wider society.

The aims of the group are:
To campaign for the civic and human rights of people on the autistic spectrum.

To promote a positive autistic identity and oppose negative stereotypes.

To promote the social model of disability.

To promote the principle "Nothing about aUtiSm without aUtiStics"

You can contact the group by
Email: larm2008@gmail.com
Or phone: 0759 457 8152



Mind Your Language #2

'Are you her carer?' This is a question that the people who happen to be with me when I go about my business are asked on a regular basis and it's hard for me to describe quite how much I hate it.

The general public continues to be confused and disturbed at the sight of the obviously disabled person who goes about their business without a 'carer' in sight. They ask if you need help. They assume that anyone with you must be your carer. When my children were younger, this caused all kinds of confusion. Here I was, in my wheelchair and the people by my side were a pair of small girls. 'Are you good girls who take care of mummy?' They were occasionally asked, once it had been established that there was no other adult around. They would turn to me in confusion. 'No,' I'd reply, stating the obvious. 'They are my children and I am their mother.'

What is it with the world that they look at a disabled person and assume that they can't go anywhere on their own or that the person with them is not their mother, lover, daughter or friend but their 'carer' who must be looking after them, taking responsibility, making the decisions?

This week was a case in point. I went to the cinema with one of my daughters and presented my nice blue Cinema Exhibitors' Association Card with my photo on it to the ticket person along with the money for the two-for the-price-of-one concession that this ticket gives you. Out came the ticket person's clipboard and sheet to sign, but this was handed not to me but to my daughter. Against my objections, the ticket person was insistent: it couldn't be signed by me, it had to be signed by my 'carer'.
Now in days gone by I would have argued the toss, making it clear that 'carer' was not a suitable word. But these days I seem to have lost the energy for the fight, not least because you're often arguing with the wrong person. Instead, the lovely daughter and I addressed the problem by turning for comfort to Ben and Jerry. With extra nuts and chocolate sauce.

We seem to be in a state of going backwards. Comic Relief, which for a while broke the mould by making fund raising films which showed lively, young disabled people in the pursuit of independence, now show only stories of the plight of the 'young carer' with the burden of looking after their disabled parents. This is a complicated issue, I'm not arguing that it isn't, but I am concerned that this now seems to be the sole focus for Comic Relief's funding in the broad area of 'disability' related projects.

In some museums, theatres, cinemas, theme parks etc, concession policies have moved from seeing the discount as something offered to a disabled person because we are less likely to be in employment and might like or need to have someone with us, to a focus on the 'carer'. Some public places, even stylishly new, publically funded ones now operate a pricing policy where not only does the carer get the discount, but they have to somehow 'prove' they are the carer before being presented with a ticket with the word 'carer' stamped on it.

In this view of the world, the 'carer' is seen as the person who needs compensating for the onerous burden of accompanying a disabled person. It doesn't happen everywhere and it doesn't happen in organisations and venues where there is a culture of disability confidence. But it does happen far too often and if you challenge it, you can see the person behind the desk squirm in confusion and discomfort. It's not a comfortable or happy position for anyone.
Lois Keith



Promoting Emotional Education - Engaging Children and Young People with Social, Emotional and Behavioural Difficulties

Edited by Carmel Cefai and Paul Cooper
Published by Jessica Kingsley 2009
ISBN 978-1-84310-996-9

The carpet bombing of curriculum initiatives into the education service continues unabated, and with an election looming political parties are reloading with new policies and promises. In this climate it is useful to take a pause to consider what might be the important themes for the next stages of development in education and in that sense this book is timely.

Costly curriculum programmes such as the National Literacy and Numeracy Strategies have produced some increases in test scores, but not the step change in standards hoped for. Could it be that Emotional Education for both pupils and teachers could provide the missing link in motivation and engagement?

The book is subtitled 'Engaging Children and Young People with Social, Emotional and Behavioural Difficulties' but like most of the best resources there are lessons here that will have value across the spectrum. Carmel Cefai and Paul Cooper have gathered together case histories and current research into the social development and engagement of young people. Most crucially many of these accounts are directly taken from young people, so we hear their voices and honour their potential as our teachers and guides.

There are useful accounts here of student experiences of the special education system and the strategies used to develop their social skills, the engagement of students as peer supporters to resolve difficulty without the intervention of an authority figure and evidence of the efficacy of strategies that create time and space for direct communication about feelings and needs. Most remarkably in the conclusion the editors make an impassioned plea for a reaction against a culture that identifies children as a burden and a limitation on adults ability to fully benefit from consumer society, that children emphasise our interdependence and draws us away from the immature preoccupation with meeting only our own needs. This pinning down of the current tendency to frame young people as burden rather than our guides towards fulfilling our potential as fully human is radical and powerful, and will have resonance beyond the world of educational professionals.

This book points the way forward towards relationship based practice in schools which will enable the inclusion of young people who struggle with the scope and persistence of negative feelings. The challenge will be to get these tools into the hands of the school staff who really need them, and ensuring that they have the emotional skills and maturity to use them effectively.
Review by Peter Keane



Pi - Aiming High for Disabled Children

Lambeth AHDC (Aiming High for Disabled Children) Transformation Programme now has a strong and committed group of parents, namely the Short Break Parents and Carer Group, who are eager to put their views and recommendations forward to Lambeth AHDC Steering Group, Lambeth Parents Forum, locally based parent forums and other relevant and interested parent groups.

This committed group of 16 parents, brought together by Parents for Inclusion and Angie Northwood as the project leader and funded by Lambeth AHDC reached the consensus that short break service provision in Lambeth (historically and currently) must dramatically change.
The group believes that the transformation is achievable by having social model perspective groups and organisations taking a lead in both grass roots delivery of short break provision and strategic planning.

For the recommendations to become reality the group wants to also work with the Lambeth Youth Forum, Lambeth Inclusive Youth Forum and locally based youth groups.

During four meetings and training sessions the parents explored the value of child led play, inclusive provision for play and leisure and of child centred family support. Micheline Mason and Lucy Mason inspired the parents to think afresh about 'short breaks'. Particularly Lucy's experiences as a member of a team of inclusive playworkers in Hackney made everyone enthusiastic about how real change is possible and within grasp.

These are the core recommendations:

1. A 'bank' of trained and inspiring inclusion workers will be created, contactable through a database so that they will be available to be employed directly by parents, carers, organisations and schools.

These workers will be able to be both: a safe relationship for individual children so that they may take courage to explore and reach out and an advisor and supporter to an organisation on how to become more accessible and welcoming.

To create this group of inclusion workers will rely on allocating 'short break' funding for work force development. In addition it will be necessary to ensure that all disabled children and young people receive Direct Payments. With Short Break funding and Direct Payments being accessed by all disabled children and young people, families will be enabled to enjoy weekend, holiday and family time.

2. All existing play and leisure services to become accessible and inclusive.

The inclusion workers from the 'bank' will play a role in making this happen as well as training current workers in disability equality and inclusive child centred play. Recruitment panels for new workers to include disabled children and their parents.

3. Help in the home and during holidays at home and away parents and carers available through the inclusion workers from the 'bank'.

"Having an inclusion worker come to the house say for an hour (or two!) a day would give me time to spend with my other children, helping with home work for example. Or all of us going to the park with no stress as someone is there to help out would be such a treat!"

"We want to go on holidays together. But often holidays are only holidays for the children and not for the adults…for them it's the same as being at home, just in a different place. To have an extra pair of hands and eyes and ears would make all the difference."

4. Lambeth fund the development of an inclusive family holiday site, using inclusion workers from bank to provide support where needed.

"We don't want our children being sent away to residential homes."

5. Training and Support

Disability Equality Training is provided and available for all youth groups, youth council, youth forums and parent forums - including the Lambeth Parents Forum.

For this training also to be open to individuals who wish to welcome disabled children and young people into their organisations, settings, communities and homes.

There were more recommendations - not least that the LA becomes accountable to this Short Breaks Parent and Carer's Group - more ideas, and more details. Clearly more questions will have to be worked out - not least the one: What shall we call ourselves?..Read the next Inclusion Now for a progress report on these recommendations.
Cornelia Broesskamp

 

Pi's Inclusion Training Pathway

On January 20th 2009 the Accredited Inclusion Training Pathway - a leadership course for parents of disabled children - got off with a blazing start and a room full of 30 people!

We are now in the third term of the course which will end in July 2010 (after 5 terms). Parents made a commitment of 4 hours a week of learning and studying, which may take the form of supporting each other.

We have had 8 training days with different themes and trainers, like Micheline Mason, Richard Rieser, Saadia Neilson and of course the PI team of trainers, development workers and learning mentors. We have also facilitated 8 mentor sessions, where the parents on the course meet in smaller local groups to get to know one another better, to recap, to practise what has been learnt and to keep up with the accredited element of the course.

The parents who enrolled come from many different parts of London, and some from even further afield.

The main goal of the course is to nurture confident parent allies.
I think we might need to redefine this goal and describe the training as a launching pad for unstoppable forces for equality and inclusion!

I am absolutely loving this course and my role in it because of every single person who has become part of it. It fills me with great hope for the future even though many individuals face the most outrageous discrimination and injustice right now as parents of disabled children or as disabled people themselves.
I hope that the course participants will let you know about their experiences themselves in the next Inclusion Now.
Cornelia Broesskamp, Course Manager



The London Eye Mystery

by Siobhan Dowd
Published by David Fickling Books 2007
ISBN: 978-0385612661

Amongst the many wonderful things I learnt and experienced that sunny day at the Newham Bookshop, a fabulous novel for teenagers was recommended to us by the bookshop owner called 'The London Eye Mystery'.

Neither Chloe nor I are teenagers, but we both love riding the London Eye and this appealed to us. (Although Chloe is not an independent reader she loves listening to novels being read).

We were both hooked from the start. It begins by Ted telling us that his cousin Salim, went up for a flight on the Eye and "vanished off the face of the earth". Ted, the narrator describes himself as "having a funny brain that runs on a different operating system from other peoples", and that's how he figures out what has happened to his cousin.

The story unfolds touching on a myriad of issues such as bullying, dual heritage backgrounds, racial prejudice, marriage break-ups, sibling relationships, disability just to name a few. The pace is swift and gripping. (I so wanted to finish it on my own, but had great fortitude to wait for our reading sessions together).

Ted is a meteorologist, knowing about clouds and weather conditions and changes. His favourite radio programme is the shipping forecast. His teacher at his secondary school is helping him read body language and facial expressions. He and his older sister, who he doesn't always get along with, collaborate together to solve the mystery of his cousin's disappearance. I don't want to give any more away but just to say it's a great read; and fantastic to have the narrator be someone who happens to be a disabled person, which is just part of who he is without the story focussing on that fact. Chloe says it's a good book with some funny and some sad bits with a surprise ending. We both highly recommend it.
Review by Zelda and Chloe McCollum