Inclusion Now Articles Issue 20
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Still Invisible? Disabled children in literature
NUT Votes for Inclusion
Inclusion Training Pathway
Acting on Inclusion- David Proud
Championing Inclusive Education in South Africa
A Deadly Issue - The Need for Status
Young People's Disability Capital
Blue Sky July - Book review
Back in 1995 a joint conference was held by Save the Children and the Integration Alliance (now the Alliance for Inclusive Education). The conference was called 'Invisible Children' and it's aim was to bring together children's image makers - authors, illustrators, publishers, TV and film makers, advertisers, etc, - with disabled people to challenge the portrayal of negative stereotypes of disabled adults and children so often found within literature and the media and to set a new agenda of inclusion.
Ten years on, SCOPE took some inspiration from that Conference and set up 'In The Picture' - a project which set out in 2005 to raise the profile of the 770,000 disabled children in the UK who still had virtually no role models in literature.
The focus is on Early Years picture books as they contain the first powerful messages children get to help them make sense of the world. The absence of images of disabled children reinforces the sense of isolation they often experience and affects the attitude of non disabled children too. Research has shown that perception of disability is formed early in a child's development and children are more likely to accept disability if they see images of disabled people at an early age.
Popular children's illustrator Jane Ray attended the original
'Invisible Children' conference and subsequently became involved with 'In
The Picture'. The following excerpts are from her interview for the project
"In 1995 I attended a conference organised by Save the Children and The Integration Alliance called 'Invisible Children'. Its purpose was to address the reasons why children with disabilities of any kind were so rarely included in TV and radio drama, theatre, film, and books. Ten years on it seems that, with a few honourable exceptions, little has changed.
I can't answer for film makers and playwrights but as an illustrator, who was genuinely inspired by that conference, I want to look at why I personally still don't feel I've addressed this issue satisfactorily and why, generally speaking, there are so few positive images of disabled children in picture books.
I have made a few attempts to include disabled children in my illustrations but they often feel self-conscious and clumsy and too often get ditched somewhere in the lengthy process of a book's development. I suspect this is also the case for other illustrators, many of whom were also at that conference.
I do try to be aware of my audience when illustrating a story. I'm aware of the rich racial and social mix of the average classroom and am anxious for all those children to see and imagine themselves as princesses and villains, heroes, magicians and witches, both in the background and foreground of their books.
I try to represent children of different ethnicities, heights, weights, colours and religions. Representing disability, however, seems to give rise to a whole raft of different problems. And because of these problems (rather than because of any lack of interest or concern amongst illustrators), the child with any kind of disability so rarely sees him or herself represented.
So what are the problems? Why do my attempts so often stumble at the first hurdle? And what can we do to change things?
I think part of the problem is that we are paralysed by the fear of causing offence, of somehow making it worse. But what could possibly be worse for a child than not being included, being ignored, having your very existence denied?
It is also important to realise that, even if what you have done in your picture may seem to go unnoticed, the child directly (or indirectly) affected by it may very well have recognised something of themselves, which is, after all, the point.
I think generally speaking what is needed is casual and incidental inclusion. So that a picture book is not necessarily all about Ben who uses a wheelchair (although it might sometimes be) but that there are children like Ben in the playground, in the street, friends, neighbours, teachers, parents etc who are disabled and are just simply part of the story.
While images like these continue to be so rare, any inclusion
of Ben in his wheelchair becomes the centre of attention - editors and readers
alike will ask 'Why is he there? Why is he in a wheelchair?' The story then
becomes about the disability rather than being about the child.
And there can't ever be one book or series of books that 'does it all' - there should be such a wealth of different books that include references to disability that whether they are there or not ceases to be an issue.
At the moment the main types of books in this area are of the 'Jasmine Gets Hearing Aids' variety. This type of clear information book is very important of course and they are often very well done, but they run the risk of simply drawing attention to difference if there are no other books available. They are 'specialist books' when what is needed are 'ordinary books'.
There need to be story books, myths and legends, fairy tales and fantasy, a wealth of imagery and language that include disabled children, not necessarily as heroes and heroines, not being cured or showing their strength of character over adversity, not as sinister, or monstrous, or as props to make non-disabled characters look good, but just because they are there.
Another point, raised by several illustrators I have talked to, is that this issue must be tackled across the board by the whole publishing industry. It's no use the illustrator depicting a character with a disability if the editor doesn't see the relevance, and then the sales team questions it and suggests it will somehow hinder sales - the end result is that the illustrator gives up.
So any change has to be taken on board by everyone in the process of publishing a book and decisions to include such imagery must be supported and encouraged at every level. There is always a fear that anything like this becomes another `ism` - another strand of Politically Correct thinking to tie us down and inhibit creativity.
But with an open hearted, informed and sensitive approach any inclusion would be enriching for everybody. It would be nice to think that it won't take another ten years for children with any kind of disability to be able to see themselves 'in the picture' along with everyone else."
The project, now in its third year, has developed a 190 page website packed with tools, resources and information to support the book world but now also inspiring nurseries, schools and other early years settings to provide a more inclusive service to all children. The project's 'Ten Guiding Principles' are based in part on materials that came out of the original 'Invisible Children' Conference. (available as an A4 Poster: www.childreninthepicture.org.uk/au_10guide.htm)
The website also includes:
A demonstration image bank of illustrations and photographs which aims to inspire children's illustrators and show what is possible. These can be used with children to facilitate discussions around disability equality in a bright and lively way.
Booklists of recently published children's books that demonstrate good practice around the inclusion of disabled characters. Over 50 books have been added since the beginning of the project.
A series of art based session plans to use with children of all ages, to encourage them to learn something about how we fit in society in a fun way.
A series of entertaining, realistic and empowering stories for children to enjoy - some are animated and interactive.
Information sheets to assist inclusive practice and give ideas about how to make stories more accessible to all children.
A fun way to introduce the Social Model of Disability using Valerie Thomas and Korky Paul's 'Winnie The Witch' story.
A children's section with inclusive colouring pictures to download and a gallery showing work sent in to the project by youngsters from around the country (more needed!).
The 'In The Picture' project would like to hear from you.
For more information visit: http://www.childreninthepicture.org.uk
or email: firstname.lastname@example.org
Leo is a seven year old boy who attends St Lawrence Primary School in Alton, Hampshire. Leo is a happy boy with an enormous amount of energy. He loves playing outside, being chased by his classmates and is an amazingly accurate basketball shooter. Leo has a diagnosis of autism and has been included at St Lawrence's for the last 3 years.
Having now taught Leo for two years, in year 1 and year 2, I will hold my hand up and say there were times when I found his behaviour, particularly in the year 1 class, difficult, tiring and frustrating. Leo could get angry and throw things, his concentration span was minimal and he was likely to run off suddenly for what seemed to be an unexplained reason. When he ran he was very fast and because he was fearless there were safety issues.
When I stood back and evaluated the reasons for Leo's behaviour I knew that due to his communication difficulties he found it hard to communicate his needs and the school day must have been very confusing to him.
Leo's speech is mainly echoed speech, repeating words or short sentences copied from an adult. We decided to use a visual timetable with Leo. Photographs would be shown to Leo of a task or activity that he was to do and this would give him a visual picture, a visual clue, of what was needed to take place. Because Leo would sprint off suddenly, photographs of a door with a red cross through it would represent no going out through the door. These were stuck on exit doors in the classroom and also held up as a quick prompt or reminder. We did, however, have to remember to remove them from the door and then replace them when Leo legitimately had to exit. We had to make sure we were very clear with the message we wanted to give him.
When we all moved into Year 2 last September we extended the visual timetable and visual prompts. It now shows an order of events for the morning and another for the afternoon. It clearly shows what events and activities will take place and in a sequential order. It presents the abstract concept of time in a clear concrete form.
I am fortunate to have two committed inclusion assistants, Mandie and Karen who support Leo in the morning and afternoon respectively. It took a while for Leo to use the timetable and respond to it but with Mandie and Karen's ongoing enthusiasm and consistent approach it has been successful. Mandie and Karen have included Leo in the making of the timetable from the taking of digital photographs to laminating the photos for durability and sticking velcro on the back for ease of use. Leo now has a bank of photographs including photos of staff he will encounter, different areas of the school, inside and out, maths, literacy, science, art, bikes, balls, coat peg and many, many more. Mandie, Karen and Leo can be very creative in finding a suitable photograph to fit a wide range of activities and events that take place in a busy classroom.
Leo has his own seat and work area alongside other children. On this identified table is his timetable and bank of resource photos. First thing in the morning Leo will now go to his work area and begin to stick on the photos ready for the morning. Some mornings his mum will help him make up his timetable, she plays a big supportive role in the classroom and with Leo's learning and the timetable provides an important link with home as to what is taking place during the day. Other days the inclusion assistant will help Leo set up the timetable, or very willing children will help him.
The timetable is set up on a card from left to right, one for the morning and one to be completed at the beginning of the afternoon. Leo and his helper will consult the class board where I have written the order of the day for the whole class. Together as a class at 9:00 and 1:00 after the register we read through the order of the morning or afternoon and Leo and his assistant refer to his timetable of photographs. Leo's may also have a few additional activities which are individual to him. There are also photos of the toilet and his own drink bottle close at hand which can be used as an immediate source of communication.
The timetables have become very much a part of the classroom routine. They are referred to during the day giving structure to the day and taking away uncertainty, not only for Leo but all the children in the class. It has promoted independence and increased Leo's confidence. One morning when Mandie was busy out of the classroom on another important task, Leo stood up and put his library book under his arm and swiftly marched out of the classroom. Slightly baffled, the rest of the children in the class looked at his timetable and said "Oh ..it's his library time." They were right. According to his timetable that's where he should have been. He has also been known to move things on the timetable, removing unwanted tasks with a "no thank you" and adding additional photos, especially the bikes!
We are delighted that Leo is taking such an active role in
the use of his visual timetable. It's his means of communication and has successfully
decreased challenging behaviour and has promoted the inclusion of him into
the class. We have seen it to be a very positive tool and it will continue
to evolve and be personal to Leo. Redundant photographs are already being
recycled for other children's timetables.
Personal thanks to Mandie, Karen, Leo and his Mum.
Year 2 class teacher and Inclusion Co-ordinator
St Lawrence C of E Primary School.
A refreshing change at the annual round of teacher union Easter Conferences was that the National Union of Teachers, the largest teaching union in Europe, voted for two motions supporting inclusive education.
In recent years inclusive education had become a favourite
target of teachers disgruntled by excessive pupil testing, workload, large
classes and poor pay & conditions. However, moving the motion on inclusive
education Fran Postlethwaite of Barnsley said:
"After the closing of many special schools what we got was children - but no funding as promised. This wasn't real inclusion. Real inclusion demands a change in the way we organise and teach in our schools, a flexible approach to the curriculum, child-friendly education."
Seconding the motion, Ray Sirotkin of Lambeth stated that children on the SEN register are still nine times more likely to be excluded than non-disabled children. He asked "How can this be justified?" and spoke about the need for positive and differentiated school behaviour policies.
The inclusive education motion was carried on a card vote with a majority of over 8,000. The motion gives a clear strategy for the Union's new left leaning Executive to support and implement Article 24 of the UN Convention on the rights of people with disabilities.
A raft of training and policies are called for which allow for a differentiated behaviour policy. Such measures include circles of friends; developing emotional literacy programmes; time out and anger management. They are in line with the duty on schools to make reasonable adjustments for disabled pupils whose impairments manifest themselves as difficult behaviour. Earlier a motion on pupil behaviour had been passed which says the growing difficulty with behaviour is rooted in society and excessive testing. It sought to end the demonization of young people who find growing up difficult, replacing it with a much more pupil friendly approach.
The second part of the motion concerned conditions of service and has a policy of reducing class sizes by 5 where there are one or more pupils with a statement or on school action plus. The union agreed at the same conference to work progressively towards class sizes of 20 by 2020 (current limits are 30 for Years 1&2 only). This would mean classes of 15 eventually where there are disabled pupils. This sounds pie in the sky until you realise that in Austria and Italy ordinary class sizes have been at 20 where there are disabled children for some years. The motion also called for a national scale of non-teaching time for SENCO's graduated by the number of disabled pupils.
The third part of the motion dealt with the implementation of the Duty to Promote Disability Equality in Schools, calling for the setting up of a Unit at HQ to ensure adequate training, sharing best practice, giving advice and to campaign for an extra training day for all teachers on the Duty.
Such motions are only an aspiration and expression of policy,
but they do give means to local teacher activists, parents and the National
Union to push for the more effective inclusion of disabled children as a human
NUT Conference Delegate
For ten years Parents for Inclusion has offered a flexible training course to parents of disabled children. The course gives parents disability equality training and the skills, knowledge and support to facilitate inclusive lives for their young people. Parents learn how to take a lead in building inclusive communities.
Through an apprenticeship (learning by doing) parents build their skills and confidence to work on the 'Getting a Life' helpline, facilitate inclusion groups in schools or to become a trainer of our workshops and courses.
Our 'graduates' tell us that the Inclusion Training Pathway has changed their lives and that of their children as a consequence. At Parents for Inclusion we know just how much the parents who have trained with us have learnt and achieved: What brilliant allies they have become to their young people, to disabled people as well as to other parents and what changes - big and small - they have effected in their families and communities.
One parent, who started on the Inclusion Training Pathway last autumn to become an inclusion group facilitator, says:
"The most important thing I took away from the training
with Parents for Inclusion is this: When I look at my son now I think 'yes,
you are my child! The problems you and we encounter are the problems of the
world and of other people. Together we can find solutions, which work for
you and which respect you.' I have also learnt to deal with issues, particularly
regarding my son's education more positively. The training gave me the knowledge
to address what was not right and gave me the confidence to stand up for my
son in a constructive way. Meeting other parents and linking up with each
other is the best cure for feeling alone and isolated - always."
We are now in a position to take the Inclusion Training Pathway through an accreditation process with the Open College Network, so that the participants will be formally recognised for their achievements.
The first accredited Inclusion Training Pathway course will
start in September 2008 and will end in spring 2009 (18 months). You will
be attending training days, learn skills by becoming an apprentice with the
current Parents for Inclusion facilitators, do some study in your own time
and plan your own project. Allow 6-8 hours per week during term time for this
course. You will be supported in your learning in small mentor groups. The
training days will be held in London.
You will gain credits for your efforts, which in turn will be nationally recognised by employers and further education training providers.
To ALL parents of disabled children: APPLY NOW!
For further and more detailed information write to: email@example.com
or call 020 7735 7735 and ask for Pam Hall or Cornelia Broesskamp
This project is funded by City Bridge Trust.
It wasn't until the age of five that the doctors actually agreed that I had been born with a condition called Spina Bifida. My mum and dad had taken me to hospitals all around the country but everyone seemed to say something different. My early childhood was relatively normal and despite doctors telling my mum and dad that I would never walk, I did. I still to this day seem to baffle and defy many doctors. Being told that I can't do something seems to make me more and more determined. My mum and dad were, and continue to be very supportive of me and made sure that I had everything needed to live a normal life.
I attended a mainstream primary school and was able to participate in most activities including football, although I was usually in goal. I do remember having to wear plastic leg splints and asking the headmaster if I could tell everyone in the school about them in assembly so no one would take the micky. I explained about them to my entire school and everyone was really good about it. It wasn't until secondary school that my disability meant that I would need to use a wheelchair. I remember being asked if I wanted to go to a secondary school "more suited for my needs" and refusing as I wanted to go where all my mates where going and my sister was. I got my way and attended our local secondary school.
I refused to let an Occupational Therapist who had not even met me assess the school for my needs and instead arranged to have a look around myself discussing with the lady who was going to be my year tutor what I would need. I was then given a statement and allocated a certain number of hours of learning support assistance. The only exclusion I really felt was during Physical Education where I was basically left to keep myself entertained with my Teaching Assistant who played basketball and tennis and other sports with me. I do remember when she was not available two female A level students filling in for her so I never really minded the exclusion. I had two major spine operations during my school years and I remember the school being so accommodating and flexible with helping me out during time off and so supportive when I returned to school. I dropped a GSCE subject to have time to catch up with my other subjects and left school with 1A, 7B's, and 1C at GSCE and 2 grade D's at A level. Achieving those grades despite health problems is still to date one of my proudest achievements.
I was one of the first disabled students at my school and since I left the size of the learning support department has doubled. Many wheelchair users have been there since and there is even a young lad with severe autism who goes there at the moment who has a mixture of normal lessons and one to one lessons. My mum started working as a Teaching Assistant when I was at the school and is still there today. The school now has lifts and ramps and is fully accessible and is keen to accommodate anyone regardless of physical limitations.
I didn't go to University to study drama although I wanted
to as I did not think I could ever have a career in drama. Instead I worked
for the government for four and a half years administering benefits on behalf
of the Department of Work and Pensions. I left that job just under two years
ago to pursue a career in acting after landing a leading role in a CBBC Drama
After the show went out on BBC1 I secured a mainstream agent and have been acting ever since. When not acting I am studying for a psychology degree at the Open University as it compliments my acting very well.
I am very proud of what I have achieved and very grateful
for the support given to me over the years by my parents and also the staff
at the school I went to. I would advise any young student who has a disability
to really think about what they want. If the school is willing to help to
overcome any problems that occur then really anything is achievable. Good
teachers really can make all the difference. I am still in contact with my
year leader who was also my Drama Teacher. She has recently retired but it
is nice for me to keep her updated on what I am doing as it was her hard work
that made it possible.
Desperados is a 10 part children's drama series following
a wheelchair basketball team, created and written by Paul Smith and shown
on CBBC and BBC1 during 2007.
Following the training we wrote about in the last issue (Volume 19), DEE was invited by the South African Government to go on a tour of the provinces to deliver seminars on developing inclusive education and to visit schools to make a training film. We were keen to see what progress was being made since our first visit.
Bukhosibeftu Primary school is a designated full service school
serving a deprived rural area in Mpumalanga Province. It has 996 pupils and
31 teachers. It enrols a wide range of disabled children including children
with Downs Syndrome, epilepsy and wheelchair users. We were astounded by the
joy and inclusive nature of our welcome. Traditional dancers, cheer leaders
and drummers were all linked up to welcome us and effort was taken to include
disabled children in this process.
Despite some difficulty among the teachers on how to differentiate lessons whilst having time to teach their large classes, we were introduced to a whole range of classes where disabled pupils were progressing with appropriate work given.
Bukhosibeftu was one of 10 pilot inclusive schools in the province which were part of a Finnish Government project. By 2007 inclusion had spread to 80 schools and this year it is developing in 140 out of 2000 schools in the province.
Elizabeth Nkosi, Chair of the parent governing body, talked about the fears parents originally had - both the parents of disabled children whose feelings of shame had to be broken down, and the parents of non-disabled children who did not want their children to mix. Now inclusion is seen as a good thing - "Education after all is the key to life and independence for all children."
Since 1994 all children have been entitled to attend state schools but it is taking a long time for the social geography of apartheid to break down. All schools are funded on the same formula with extra for schools in deprived areas. We visited township schools in Mdistane (former Transkei) and Mamalodi in the Eastern Rand which generally varied in class size from 45 to 80. In contrast Norkem Park in a middle class suburb manages through parental contributions and sponsorship to have classes of 30 or less and have a full time counsellor dealing with death through HIV and abuse and a language enrichment teacher. Interestingly enough here ADHD seemed a bigger problem, perhaps linked to the frequent visits to MacDonalds and other fast foods affordable in the middle class lifestyle.
Springvale and Valhalla Primary schools in the suburbs of Pretoria were able to include a range of children with Downs Syndrome, epilepsy and hearing impairment, but again had classes under 30.
The most inclusive school in terms of pedagogy we came across was an Afrikaner speaking school in Boksburg-Boontreaker. Here 10 years ago a parent of a child with Downs Syndrome approached them and they took him and now there are disabled children in every class. This was the whitest school we visited, but with a strong sense of community and love of the children.
Inclusion is happening in these Full Service Schools, but there is a great deal to do. High schools have not been included in the programme. There is an increased budget for inclusion this year, but inclusive teaching methods needs much greater support. The class sizes need reducing in township and rural schools. We saw some really skilled teaching, but little use of peer support, though where it occurred it made a big difference.
In all these schools the School Based Support Group helped develop inclusive education. With representatives from each Grade and a coordinator these groups meet weekly or fortnightly to identify any issues and barriers for learners.
By 2019 the Government has said it will fully implement the
UN Convention on the Rights of People with Disabilities. To achieve this is
going to take a huge effort just for Article 24. What is needed now is consistent
support from donors and a higher political priority within South Africa.
About a week ago, in my local recreation ground, a boy was airlifted out of the football court having been stabbed after a row broke out during a football game. Watching the scene were a crowd of children and young people, mainly from the adjacent and recently modernised children's playground.
The playground has become very popular since it's makeover, a tarmac sign on the ground proclaiming 'Welcome to Thornton Heath' greets you at the entrance. I wonder how many children will be happily playing there this weekend?
With daily accounts of child stabbings and killings in the media, we are apparently in the midst of an 'epidemic' here in London and I have to admit it's beginning to feel that way. Is this just because it's moving closer to home? On my own turf, literally. And are we becoming immune to the seriousness of what's happening? These days the old adage 'age ain't nothing but a number' seems less apt than 'death ain't nothing but a number'. The tabloids appear to almost delight in their grisly body count: '27 teenage murders in London alone last year'. We saw the New Year in with the count returning to 1 and already we have a total of '14 so far'. So far, because of course there will be more.
But these are not numbers. They are young people. Children killing children. And all victims - the killed, though we are encouraged to feel only for the 'innocent' of those - others are written off, however subtly (for 'gangmember' read 'low-life', for 'known to police' read 'don't waste your sympathy'...) - and the killers, however much the press want to demonise them, are children too, although of course 'cold-blooded'. Is there really such a thing? Do we really believe in our hearts that children enjoy killing each other? That they feel happy and secure living with a culture of 'kill or be killed'?
One senior policeman has declared 'Enough is enough'. Well, I agree with the sentiment, although I think most of us felt that back when Damilola Taylor died cradled in the arms of a caring neighbour in a stairwell in Peckham. But is heavier policing the right response? Bringing back the horror days of racist, classist 'Stop and Search' which bred mistrust on all sides - at a time when police are asking communities to come forward, to trust them and work with them?
It is so clear to me that this is an issue of STATUS. Everyone needs to belong, feel valued, needed, have a sense of achievement, of purpose and 'worth'. These are human needs and we will seek them out wherever we can find them. A child who society sees as nobody and treats as nobody, who is a victim of racism, classism, poverty and sometimes neglect and abuse, will crave these things more, not less than anyone else. They will gladly take whatever 'worth' they can get.
I was in a gang when I was a teenager. Most housing estates
in my area had one. Sometimes, not very often, we'd fight each other (harmless
scraps in comparison); more often we'd just threaten to. We got into small-time
crime, nothing sinister, mostly we just hung out, had a laugh, tried to outrun
police, that kind of thing. I earned my 'badges' by evading arrest, covering
for people, being 'dared' to do dangerous, stupid things. I feel very lucky
that I didn't have to gain my 'status' by stabbing another teenager.
Being in a gang gave me a sense of belonging that I hadn't encountered elsewhere. Not at home or at school. I felt I 'mattered'. My mates looked out for me and I looked out for them. We had loyalty and we didn't let each other down. They were my family in effect, I felt 'at home' when I was with them. It was how I got to feel 'good' about myself and it enabled me to survive everything else. So I really feel for young people today caught up in a much tougher, less innocent gang culture, still needing the sense of belonging and 'worth' it provides in order to survive but so often, ironically, not surviving it's harsh code of conduct.
As usual, inclusion is a large and vital part of the solution. In inclusive schools where inspiring Headteachers see the school community and the community beyond as their responsibility, fantastic work is being done, to promote 'worth' and belonging, to value all young people and build self esteem where there is none. Tuckswood School is a great example that was recently highlighted in Inclusion Now, with, among other things, it's nurture room for any child in need of extra 'love'.
Tools such as Restorative Justice and Peer Mediation are being
used more and more frequently to give young people the skills to resolve conflict
themselves. The Head at George Green's School identified the 'gangleaders'
within the school and community beyond and invited them to attend a 'conflict
resolution' course in Northern Ireland. They returned to the school as trained
Mediators and commanded the same, if not more, respect from their peers -
a perfect example of exchanging negative 'status' for positive.
Set up in many schools now, School Councils are empowering children and giving them genuine roles of responsibility. Philosophy classes give respect to young people's thinking and ideas. Doors are being opened more readily, with parents being invited in to be an integral part of the school community. Links are forged with community groups and leaders beyond the school walls. And some Headteachers take the courage to implement 'no exclusions' policies as they understand that sending children away not only rejects them but places them in difficult or dangerous circumstances with little or no support.
Outside of school, in the wider community, people are out
there, doing things to combat the 'epidemic'. So often it is the families,
friends and loved ones of the victims, who organise marches, public meetings,
awareness- raising benefits, design t-shirts, record songs, write poems, set
up websites, helplines, and generally make their voices heard. This is all
very heartening and really I think it is how it should be - the re-building
of community by the community. So I have to ask myself, if I feel this passionately
about it, when will I get out there and join them? And when will you?
See Inclusion Now Vol 18 for article on Tuckswood School and Vol 10 for article on George Green's School
Back in March the Alliance for Inclusive Education, in partnership with the HEYA collective, hosted the first Young People's Disability Capital event at City Hall for the Mayor of London.
The event aimed to consult with young disabled people across London. Friends and siblings were also welcomed. The parents of the young disabled people also took part in their own workshop led by Micheline Mason.
The day was facilitated by disabled and non-disabled young adults who specialise in using music, poetry, theatre and visual media as tools for participation. We wanted to know how the young people felt about where they lived and hung out, where they went to school, their friendships, their aspirations and the things that most concern them. We wanted to hear their ideas for change.
The Children and Young Peoples Unit at the GLA and Dave Morris
- Mayor's Senior Advisor on Disability - were keen to develop a strategy for
long term support for the empowerment of young disabled people and the inclusion
movement from within City Hall. We'll have to now see what the future holds
on that one. It also seems that it would be incredibly useful if the parents
were given continual support to meet.
Outcomes and the key issues we identified
From the young people:
It's important to create more opportunities for young disabled people to meet their peers and make friends with children in their local areas.
It's important for politicians and policy makers to support the best interests of disabled children and young people and back the movement for inclusive education.
To acknowledge that inclusive schools not only benefit young disabled people but also their siblings and non disabled peers - helping to foster good equal relationships and to provide a more child-centred and round environment for all children to learn in.
Many of the young people felt concerned about their safety within the local community. More work needs to be done to properly identify the factors that lead to young disabled people feeling vulnerable.
Most of the young people had not been exposed to Social Model thinking, information about their rights or been provided with access to positive role models, either at school, or within the media.
Most children and families had not heard much about disability history.
More needs to be done to properly involve young disabled people with non traditional forms of communication.
Creative solutions need to be found in order to bridge the gap that arises due to lack of physical and financial resources that would enable us to provide adult support workers who are skilled at providing facilitated communication, Makaton and BSL.
Young disabled people need more information and support to gain direct payments. Massive reform is needed to promote Social Model thinking in the NHS and Social and Children's services.
Young disabled people are full of ideas and solutions. All
were keen to continue to meet, make friends and work towards building a more
inclusive society for all young people.
From the parents:
Many parents still feel a deep sense of isolation.
Many parents struggle to find support from a Social Model perspective.
Much more positive Early Years support is needed.
Parents found having a meeting space and interaction with empowered disabled adults very valuable.
More needs to be done to understand and tackle the impact that having multiple marginalised identities has on a family or disabled child, for example the combination of disability oppression and racism, or disability and poverty.
The day was hugely enjoyable, creative and informative. I'm
not sure the GLA had ever seen anything like it. It was amazingly raucous.
The young people wrote lyrics and music, made a huge amount of noise and paraded
the halls. The event was filmed and the young people also interviewed each
other on camera. The day finished with a showcase of songs, poems, speeches
and skits performed in front of GLA staff and the parents of the young people.
Lucy Mason and Dzifa Afonu
Every now and then there comes a book that leads us quietly to an understanding we know we'll cherish for the rest of our lives. 'Blue Sky July' by Nia Wyn is just one of those books. It charts a mother's journey in Wales from the euphoria of giving birth to a 'perfect baby boy' - "If we could only ever keep one feeling from the whole of our lives, I'd choose this one" she says. But, not long after, the family's world starts unravelling as baby Joe is diagnosed with cerebral palsy and they are pitted into another world, a world that seems to exist in the dark recesses of society.
From the rawness of her first emotions - " . . . and I feel like my arms have been amputated", the author deftly moves us on, exploring the powerful emotional connections in their lives and magically weaving a web with the reader, making this book difficult for any reader to put down. Every facet of Joe's and her life are explored in assured lyrical and poetic narrative style - the extreme exhaustion, the physical disorder, the despair, the comaraderie with other parents and the professional chauvinism of some of the experts who have influence over their lives. Metaphors and quirky details abound in this book and some, like the saxophone player, are carried through to the end. Connecting it all is the omnipresent weather - the sun, the clouds, the wind and the blue sky, every shift in the weather signalling a change in their delicately balanced lives.
For parents like myself who have made similar journeys with our disabled child, the book resonates with authenticity. However, at times I did wish that the family received good quality co-ordinated support from health, social and educational professionals. This would have spared them the desperate search in the fog for healing and from so many different 'therapeutic' approaches. Like many parents, this mother too struggles for a right for Joe to be included into a mainstream school, her fears and anxieties palpable. But it is eventually the blossoming of her love for Joe, and Joe blossoming as an individual, that rises above all the mayhem and the madness and makes this book a must read for all parents and professionals. So moved was I by this book that I purchased it for my close friend who had brought up her disabled son. "Aaah . . ." she said when I mentioned the forthcoming present, "I've got the same for you!". And so we exchanged our presents, fully embracing our shared experience.
However, the book's redemptive message, its lyrical and assured
storytelling makes its appeal wider - in classrooms, families, conferences
and religious places - wherever we choose to open ourselves to the breadth
and depth of human experience.
Seren Books 2007