Inclusion Now Articles Issue 16
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Sterre is 15 years old and is enjoying her secondary school in London. She participates in quite a lot of subjects and activities and has the opportunity to learn from that. She is a confident and happy teenager. To achieve this we've had to move from The Netherlands to England in September 2005.
Sterre as a little child
When Sterre was two years old we, her parents, were told that Sterre would not be able to learn and that she wouldn't be able to attend any school. We visited then the places which the professionals were convinced would be suitable for her, day care centres, where the children experienced hardly any challenge from each other or the adults who were only qualified to care. We then promised each other that Sterre should receive proper education alongside her peers.
Sterre at primary school
Sterre attended a regular crèche and after being rejected at all the primary schools in Amsterdam we found a school in a small town near Amsterdam. We noticed that Sterre enjoyed very much being with other children who talk and play with each other and with her. She made friends with whom we could arrange play - and even sleepovers. When after two years Sterre's impairment didn't appear to disappear, the school decided it was not the right place for Sterre, despite the fact that Sterre loved school and her classmates loved her. In this way the children got the message that apparently it is considered legitimate to exclude a child because it is different and has more difficulties with learning than they themselves would have. She should go to a special school, the primary school decided. The special school didn't admit Sterre because of her learning difficulties. After much insisting the special school admitted Sterre in a pilot for children who were unable (in the school's view) to attend schools. With very much effort we achieved that Sterre could attend the primary school for 2 hours each week.
With other parents we started a pressure group for inclusive education and organised a conference with international speakers about inclusion. Two of them were parents from Newham, London, Linda Jordan and Chris Goodey. They came and told how they succeeded in closing almost all special schools in their borough.
The same conference led to the establishment of a school whose mission was to include all children in the area of the school and Sterre attended that school, the Archipel in the town Almere, for the last 4 years of primary school. Those were the happiest years of her school life in the Netherlands.
Unsuccessful Struggle for access
At the age of 14 by law Sterre was no longer allowed to attend a primary school. Unfortunately no secondary school adopted the same mission of inclusive education and after contacting all school authorities in the Netherlands and after several lawsuits against school bodies we found that no secondary school would accept her. We considered that a special school was not an option. Special education would hinder Sterre's development and would only prepare her for an existence in an institution and would therefore be out of the question.
Moving to England
The only solution we saw for us was to flee from the education system in The Netherlands and to seek educative asylum in Newham, the first borough to adopt fully inclusion and inclusive education in its official policy. Despite the fact that Sterre couldn't understand or speak a word in English, she was at ease immediately because her secondary school accepted her without any condition or reserve. And now after 15 months in England she understands a lot of English and she asks for school in holiday breaks.
In an article in the weekly U.S.newspaper, Education Week (September 27, 2006), Professor Julian Weissglass cites research that the USA is leading the way in using antipsychotic drugs to manage the behaviour of children. Between 1991 and 1999 sales of Ritalin and other brand name drugs increased by 500% and amphetamines by 2,000%. Weissglass believes that young people need a different solution:
Are educators, parents, and citizens aware of, or concerned about this tremendous increase in prescribing psychiatric drugs for young people?
The situation is not simple. Has there been an increase in the set of behaviours that are labelled as ADHD? If so, what are the reasons? Some possible causes might include the following:
- Changes in children's diets (more sugar, fat, and chemical additives, for example)
- Environmental pollution or maternal ingestion of legal or illegal drugs that may be affecting youngsters' nervous systems.
- Increased pressure on children from schools and families to conform to unrealistic expectations and to perform well on standardized tests.
- A decrease in opportunities in school for creativity, for children to think for themselves, to play, and to exercise.
- Fewer opportunities, away from school, for children to be in the natural world.
- Increasing student alienation from school.
- An increase in the amount of time young people spend in front of electronic devices.
- On the other hand, perhaps young people's behaviour has not changed very much. In that case, the increase in prescriptions might be explained by any or all of the following:
- Greater public awareness of the possibility of suppressing unwanted behaviour with drugs.
- Economic or other societal pressures that result in adults having less patience with and attention for the energy and emotions that are normal in young people.
- Marketing campaigns by pharmaceutical companies aimed at increasing profits.
- A desire for easy solutions to complex social and psychological situations that make us uncomfortable.
Whatever its explanation, the phenomenon raises a question of the rights and freedom of young people. Though I am not a lawyer, I doubt that children have the right to refuse to take the drugs. Yet there are known and unknown risks to taking psychiatric medications.
I am reminded of the children's book The Big Box, by the Nobel Prize-winning author Toni Morrison and her son. She writes about three youngsters who are confined to an attractive and well-supplied room (the box) by adults who cannot handle the youngsters' freedom. Each says a variant of the following:
"If owls can scream
And rabbits hop
And beavers chew trees when they need 'em,
Why can't I be a kid like me
Who doesn't have to handle his freedom?
I know you are smart
and I know that you think
You're doing what is best for me.
But if freedom is handled just your way,
Then it's not my freedom, or free."
My belief is that much of the increase in prescriptions of
psychiatric drugs is because children's behaviour and emotions are difficult
for adults to handle. This is impossible to prove, but if even one child is
because of adults' discomfort with his or her behaviour, it is a grave injustice. Children have the right to be themselves as they grow up, to be loved and supported, and to have their emotions attended to by caring adults. If they are acting in ways that are inconvenient or difficult for adults to handle, then it would be wise to give the adults emotional support, so that they can constructively handle the young people's behaviour, rather than resort to drugging them.
When such large numbers of children have to be drugged to cope in school, we should consider changing schools, so that they are better places for young people. We could well begin by asking what kind of school will assist young people to have full, meaningful lives, rather than measuring the success of schools by students' performance on standardized tests.
I am not saying that parents and educators are purposely acting in ways harmful to young people. Parents and educators are good people who need better support systems and the information that will enable them to think of better solutions than drugs. Neither am I saying that young people don't act in disruptive and irrational ways. They do. But much of such behavior, I believe, is caused by institutional rigidities or painful emotions from hurtful experiences that have not been healed.
Although educators are not therapists, there is much that they do that affects the emotional health of their students. Repressing children's natural physiological processes of releasing emotions is harmful. Perhaps the best insight comes from the 13th-century Persian poet Jalaluddin Rumi:
The cloud weeps, and then the garden sprouts.
The baby cries, and the mother's milk flows.
The nurse of creation has said, let them cry a lot.
This rain-weeping and sun-burning twine together to make us grow.
Keep your intelligence white-hot and your grief
Glistening, so your life will stay fresh.
Cry easily like a little child.
Rumi knew about the relationship between crying and intelligence almost eight centuries ago. Yet, in the very institutions assigned the responsibility of developing children's intelligence, crying and other forms of emotional release are often repressed or ridiculed. This should change.
When children are hurt, they cry; when they are scared, they tremble or laugh (if it is only a little scary or embarrassing); when they are frustrated, they may have a tantrum. No one teaches a child to cry, shake, laugh, or have a tantrum. It is a natural response to distressing experiences. If children were allowed to release their emotions as much as they needed to, they would recover from the distress. They would have more attention for learning. In our society, however, the natural recovery processes are rarely allowed to take place, and so the damage accumulates.
What can educators do to reverse the trends toward increasing prescription-drug use and growing alienation from school? Here are some suggestions:
- Support parents to resist resorting to drugs for their children. Help them learn to play with their children and attend to their emotions.
- Work in professional and political organizations to change
national, state, and district policies that are leading to schools becoming
less enjoyable places for young people.
Decrease the emphasis on testing and test scores as a measure of educational quality.
- Be sure that the curriculum includes choices (such as art, music, technology) for students to pursue their creative interests.
- Include plenty of time for informal and spontaneous activities and conversations (recess) and opportunities for enjoyable (no pressure to win) sports.
- Increase opportunities for young people to be in the natural world.
- Support teachers to create classrooms where children have the freedom to be themselves.
- Provide emotional support to young people, teachers, and parents so that they can realize their full energy and creativity.
- Educate parents and yourself about the dangers of drugs, keeping in mind that marketing campaigns may avoid disclosing the negative effects of using them.
- Respect young people completely as full human beings with intelligence, knowledge, and emotions. Most importantly, understand that part of being human is having emotions and releasing them when you are hurt.
Providing complete respect for young people will require a
drastic reordering of our policies and priorities. Let us begin.
Professor Julian Weissglass
Edited from Julian Weissglasss original article which is available at the web site of the National Coalition for Equity in Education: http://ncee.education.ucsb.edu/articlesonline.htm.
Julian Weissglass is a professor in the department of education
at the University of
California, Santa Barbara, and the director of the National Coalition for Equity in Education.
© 2006 Editorial Projects in Education
In Inclusion Now 14, Liz Wilson wrote a very insightful article concluding that the examination system is classist, favouring students coming from a middle class background. As a disabled woman I would also argue that using examination results is a very disablist argument, in particular for promoting the inclusion of disabled learners with learning difficulties labels in mainstream educational settings. The whole exam system is based upon learning strategies, outcomes and classroom structures for non disabled young people. Grading is based on how well a learner, including disabled learner, does against intellectual standards set by non disabled people.
Let's take the most common form of assessment, the GCSE. Grades A - G are roughly equivalent to what an 11 - 18 year old non disabled learner is expected to achieve. The Entry Level, (certificate of achievements) Bronze, Silver and Gold qualifications are equivalent to what non disabled 7, 9 and 11 year old learners are expected to achieve. Whilst A levels and Degree examiners have not illustrated their grading in the same way, nevertheless they use intellectual standards set by non disabled people. As a result, disabled learners are being 'graded' against what non disabled learners should achieve. The grade and certificate awarded will be documentary evidence of how well the disabled learner compares to the intellectual achievements expected by non disabled learners.
Instead of 'buying into' the exam system, if we want to really promote inclusive education and accreditation then we need to ask why disabled learners should get a 'low grade' or a lower level qualification simply because they may attain less knowledge and skills than what is expected from non disabled learners? Why should some knowledge and skills be worth more or less than others by the grade or certificate awarded? If we are going to really talk about inclusive education then an accreditation and assessment system must acknowledge every learner's different achievements equally without making comparisons against non disabled learner's intellectual standards.
After all we would not argue for the inclusion of disabled
sports people into mainstream sports and leisure facilities based on how well
they perform against non disabled people's physical attainment. We would see
that the aim of inclusive sports and leisure activities is not to make disabled
people with physical impairments run and swim as fast as non disabled people
as there is an acceptance that disabled and non disabled sports people are
different physically. So why can we not appreciate that disabled and non disabled
learners achieve differently intellectually?
Sarah Cassandro, a deaf teacher at Jubilee School, an inclusive primary school which has enhanced resources for Deaf children, tells her story.
I would like to share with you my experiences growing up as a profoundly deaf child in a hearing family, my schooling and where I am now.
My parents are hearing and I have one sister, Joanne who is fifteen months younger than me and she is severely deaf. I was born in the 1970's in the North East of England. At that time oralism (using speech and residual hearing) was the only method of communication on offer.
I went to a deaf school until I was six years old. Then I joined a hearing impairment unit in a primary school until I was nine. Sign language in both was forbidden!!!! I was travelling in a taxi an hour each way and I remember feeling really tired after a long day of lip-reading.
My sister, who had more hearing than me, was actually in a mainstream school without a unit just five minutes away from home. She was making progress although it was hard. My mother wanted me to go to her school but the local authorities refused. After a battle they agreed, but only on a trial period. I did stay though, and was really pleased to be going to school with my sister and near home, but I also remember the bewilderment of being in a school with no deaf children. I remember feeling sad. I also remember a wave of determination building up inside me. I wanted to prove everyone wrong. I didn't want to be seen as different, but I felt different. A peripatetic teacher of the deaf would take me out of lesson to spend an hour with me going over school work. I disliked that because it made me feel so conspicuous to leave the classroom in front of my hearing peers.
My mother devoted all her time to working with Joanne and myself. The emphasis was always on language and developing speech. I didn't like speech therapy. I gave my therapists a hard time and when I was in my early teens I would hide the appointment cards behind the washing machine and stopped going. I found it a humiliating experience.
My mother and sister started going to sign language classes when I was fourteen years old. I was horrified!! I had not accepted myself as a deaf person. In fact I didn't know who I was. I didn't have an identity. I was at a hearing school with hearing friends and becoming more and more defensive. I didn't need my mother and sister signing - it was embarrassing. Then one day I was watching television when suddenly there was this deaf boy using sign language on Dallas and I was mesmerised. I felt a connection and felt proud that deafness was in the limelight and being shown in a positive way. I was intrigued and ended up going to classes and loving every minute of it.
My early mainstream secondary school memories are vague, but one thing stands out - I was definitely NOT part of the class. I did not have interpreters. The teacher read to the class while I sat alone.
Of radio aids, I was embarrassed and self conscious. I found that the hardest thing to deal with at mainstream school with no other deaf children except my sister. I was in my teens and into the boys and vanity took place where I would take the hearing aid out of my left ear so the boys would see I only needed one. It was silly as the boys knew I was deaf anyway, but it sort of reassured me. I still don't wear a hearing aid in my left ear to this day. I think if there had been other deaf children at school it would have been different.
I loved the social aspect of school but I also remember struggling in the classroom - sitting up front and utilising every bit of hearing I had, straining to lip read and hear the teachers. Some were harder than others, e.g. those with a beard or moustache covering their mouths, or who just didn't speak clearly. I realise with hindsight that they had had no deaf awareness training.
I could not hear what went on around me in the classroom. If anyone beside the teacher spoke I was lost. That is when I felt like a ghost, spinning round in my seat trying and straining to understand the other pupils. Without notetakers and interpreters it was impossible for me to understand.
I learned to minimise my asking of and answering questions because inevitably I would ask or answer a question too late and sometimes the teachers got annoyed and embarrassed me.
I missed out on many of the things that make a classroom a small community, such as the jokes, the pupil's replies to questions, commentary, films, stories, discussions and even naughty whispers and notes passed around. Spelling tests were a real challenge and my best friend in her efforts to help me almost resorted to cheating to give me the answers.
I left school without any O'levels, but I did catch up in
sixth form college where the classes were small, there were five other deaf
pupils, and I had an interpreter in every lesson. I can still remember how
it felt that first day in the cafeteria signing to the other deaf pupils.
I was relaxed and communication was easy. I felt at home!!
I have no memories of meeting deaf adults until I was eighteen years old when I attended a weekend course run by Friends of the Young Deaf. I still remember the sense of awe I felt as I met the first deaf adult I had ever known. He was the course leader, and he was young, Deaf and dynamic. The way he signed was beautiful. In my mind I put him on a pedestal and there and then I knew I belonged in the Deaf Community.
My life could not be better now I have found my Deaf identity and I have accepted myself as a Deaf person and not a hearing person. I am here at Jubilee School because I am proud of being Deaf and I want the Deaf children I teach to be proud of themselves as deaf people.
Deaf children at this school have, I believe, given so much
in terms of creating an atmosphere of awareness and allowing hearing children
to become creative in their ability using Sign Language. I think inclusion
is beneficial for Deaf children in Jubilee School because with encouragement
in becoming a 'positive Deaf person' the child will become confident in themselves.
They will also be able to deal with people who are deaf and people who are
hearing. I truly think that children at Jubilee have the gift of dual cultures,
languages and friendships.
From a talk given by Sarah Cassandro at the Lambeth Inclusion Conference, Feb. 2006
The Alliance's "We Know Inclusion Works" Campaign was launched at the end of July this year, in response to months of media hype about how 'damaging' inclusion is for disabled children and young people.
So we decided that the time had come to do something to challenge the negativity. And what better way to do that than to get people to tell us their personal stories about their own inclusion in school, or the inclusion of their child - we also asked teachers and education professionals for examples of inclusion good practice they have seen working in the classroom.
We asked everyone to send in their stories, picture and poems to us by the end of September so we could organise a big launch event in October.
We decided on the 26th October because it coincided with a
debate in Parliament on the Government's response to the Education & Skills
Select Committee report on SEN, and we knew there would be lots of media interest.
Luckily enough this date also coincided with autumn half term week so was
a good time for disabled children and young people and their families to come
along and take part.
We have been overwhelmed by the responses we have received so far. Here are what some people have said about inclusion:
all I have witnessed (in the classroom) has led
me to believe that children will always be better off being educated with
their able-bodied peers, and that furthermore, the non-disabled children benefit
just as much from sharing their classroom"
"I felt I had to write as I too feel there has been a downward turn in the people's attitude towards total inclusion of people with disability in our mainstream schools and feel strongly that now is the time to stop the rot." (Parent, Scotland)
"Inclusion, for me, is about a society which respects
the humanity of its people."
(Disabled young person, Nottinghamshire)
"Inclusive education is a much more profound and deeper
challenge to our schooling system and the way we think about learning. The
starting principle is that each and every learner, irrespective of the nature
or degree of their impairment should have the right to belong to their local
school and their local community, with meaningful and appropriate support,
enabling each learner to participate and contribute to such a learning community."
(Inclusion campaigner and ally, Bolton)
"Having gone through mainstream education, I have to admit that the idea of being shut up in the box of a segregated school scares me." (Disabled young person, Ayrshire)
"As a parent of a disabled young person I have only ever
had one real choice. Inclusion. There has never been any doubt or questions
in our mind that this was the right path for our child." (Parent, Yorkshire)
We wanted the "We Know Inclusion Works" campaign event to be fun for everyone so we decided that as well as delivering the FOUR VOLUMES of personal stories of inclusion, we would get together first and make a big "We Know Inclusion Works" banner that we would march with to the Dept for Education and Skills.
On the day there were about 40 of us - disabled children,
young people, adults, parents and allies - all ready to get creative in the
name of inclusion. Lucy Mason and Tom Minor were our facilitators for the
banner-making workshop and despite a very cosy space in which to work, they
did a fantastic job getting everyone involved - there was brightly coloured
paints, materials and stickers everywhere.
As you can see the banner was an incredible mixture of pictures, poems and words about how we all value inclusion.
We then took to the streets, with our fantastic bright red Banner, and marched into the Department for Education and Skills singing our "We Know Inclusion Works" song much to the amazement of the DFES security guards and the civil servants who pressed their noises up against the windows to find out what was going on.
Lord Adonis, who is the Minister responsible for 'SEN and Disability, met us and accepted the four volumes of inclusion from us. He then took about 40 minutes talking to some of the disabled young people who were very clear that the Government should be doing more to support inclusion for all disabled learners - that this was about making sure disabled children and young people had proper, well resourced support in mainstream schools and build the capacity of the whole education system so that disabled learners feel welcomed in schools and colleges.
Lord Adonis was very clear in reaffirming the Governments commitment to inclusion and has agreed to meet the Alliance and representatives from the Inclusion movement, in the New Year, so we can talk about how we can work better together to make sure inclusion becomes a reality for ALL. (and how the DFES should be funding the Alliance to campaign for inclusive education for ALL children and young people - ed)
It was a fantastic event and I am sure that it will be the first of many. Can I just take this opportunity to say a very big thank you to everyone who came along and got creative, to Tim for writing the most fantastic song, and to everyone who bought a T Shirt and for marching to the heart of Government and telling them like it is!
Don't forget the "We Know Inclusion Works" campaign is still collecting your stories, pictures, photos, poems all about your experiences of inclusion because next time we march on the DFES we want to take 20 VOLUMES!
TOGETHER OUR VOICES ARE STRONG!!
We took the underground across London to Islington to get to DEE's office. We went to take part in a consultation about learning together at schools and how to get it better for disabled young people. There were lots of people there and everyone said who they were. I told everyone my name and where I went to school and where I go to college now.
We broke up into small groups and made two great big charts about our school experiences. Sterre and Tom drew a big picture around me of my outline. That was fun. Then we all wrote notes inside about what was good and not so good at school. I said I liked computers and singing along and art and drama. One of the bad things at school people said was bullying.
We did a five minute play about that. Ellen lied down. Joseph
pretended to touch her arm to upset her and Sterre and I helped her by kindly
touching her arm to make Ellen happy again. Ellen finished with a song. It
ended happily. We all said friends are important at school. It was a good
meeting. I liked meeting and listening to everybody. We hope the Department
for Education and Skills will listen and learn from young disabled people.
Report of a consultation meeting on the Department for Education and Skills' Disability Equality Scheme organised by Disability Equality in Education and the Alliance for Inclusive Education Nov. 2006
Welcome: to receive with gladness, to admit willingly.
(Chambers Dictionary 9th Edition)
Without welcome you do not properly enter, you are not present and so do not participate or perform. Welcome is the first key to the successful inclusion of anyone. So how do we make our welcome count?
Who needs a good welcome?
Everyone who needs a relationship needs a welcome. Particular efforts could be made when welcoming parents, carers, pupils and other family members to a situation which is unfamiliar to them or in which they are feeling anxious, apprehensive, aggressive or defensive. This is often the case for people invited to meet on school premises (professionals included).
Who has trouble gaining a great welcome?
It appears that some adults, children and their families get a much worse welcome than others.
School environments driven by League Tables, targets and inspection cycles have often made certain pupils less welcome when it is judged that they may well reduce the performance of a school (SEN Select Committee, 2006).
For many children and young people plus adults the presence of welcoming rituals and routines can be empowering and provide a deep sense of security. This is especially important for pupils living in insecure family situations, surviving neglect, abuse or loss. It is just as important for those whose impairments lead to a greater feeling of anxiety than others.
Inclusion and the Welcome
If we can successfully welcome disabled or challenging children and young people to our schools, if we can set a positive tone, we set the tone for all that will follow. Communities, schools and families that truly embrace inclusion are so often the most welcoming to all who participate or visit them.
Improving the Welcome
There are many ways we can improve the welcome we offer:
- Spend a day together with your team, group or family reflecting on the quality of the welcome in your setting. Who takes responsibility for welcome? Who is at the front door? What rituals and symbols are present already, which could be added?
- Consider those who are least likely to be welcomed in your setting. What could be done to improve the welcome for them? What would make them feel safe or a sense of belonging?
- What will you do about jargon in your setting?
Who can go ahead to be there to build the bridge for the person you know will struggle to feel welcome? What could they do to prepare people and to make the situation feel as welcoming as possible?
- How will you ensure a sense of safety and belonging for all?
- Turn up the volume on your own welcome up by 80%; what impact does this have on your life and work?
Colin Newton, Inclusive Solutions
Training on Welcome and other Keys to Inclusion are available from www.inclusive-solutions.com
I was recently invited to speak at a conference for adults with learning difficulties where I took part in a workshop on the notion of 'Person Centred Planning'. In this workshop we were asked to name a personal dream we had. A young man near me said, rather falteringly, that his big dream was to stack shelves in his local Sainsbury's. That was his dream and it seemed to him almost unobtainable.
He was currently stuck in a day centre making bird boxes. He spoke about wanting a real job. He wanted to feel a useful part of his local community. He wanted to earn his own money because that would make him feel valued. He was painfully aware of the difference between being occupied at the day centre and being at work. Others in the circle said similar things.
It made me remember when I was in my early twenties and had left Art College in disillusionment. I knew I had something more meaningful to do with my life than design corn-flake boxes, but I was not sure what. I had thought, naively it turned out, that I would just get any old job whilst I worked out what my real 'work' was. I had passed my exams, I had done three years at Art College, what was the problem? Well apparently the problem was that I was a disabled person and too small to reach anything. After being turned down by employment agencies, not asked for interviews, sent to the Disablement Resettlement Officer and directed towards some kind of industrial rehabilitation scheme or the day centre which specialised in Arts and Crafts, I was in a state of shock. I realised that the world of work was even more rigid and inhuman than the education system which had also excluded me. Unless I could find a way to grow that extra two feet, I was considered unemployable. Unemployable. Unnecessary. Superfluous to need. Bringing things down to my level was not even a consideration. It was strange because it was not even work I wanted to do, but somehow the sense of rejection was enormous. I began to think that no one has the right to decide who should work and who shouldn't. To be able to share our personal gifts, talents, skills, thoughts, care - even love - for the benefit of others is a rational human need. It makes life meaningful. But I also began to realise, slowly, that there is a big difference between having a job in the capitalist sense, i.e. being productive within the economic system for the purposes of the owners, and real work, for the benefit of other human beings.
Now, after fifteen years of working towards an inclusive education system, and having some success, we are confronted anew by the problem of meaningful work. Young people with 'severe' impairments are finally taking their place alongside their brothers and sisters in ordinary schools, learning and teaching about being human. But at the end of school, what is on offer? Endless segregated classes in FE Colleges, the Day Centres and the Bird Boxes, because nothing has really changed about how we value people. Being productive is everything.
If you think about any person when they are very young, they are busy. They are 'programmed' to fill every waking moment with exploration and learning. They are literally building their brains through gathering as many experiences as possible. To my mind this is their 'work' - to become themselves. Yet from the time of our birth, adults set about instilling in them their values, their agenda, their pace, their goals. Their own goals are thwarted many times a day. Their protests called 'tantrums'. When they are tiny they do this with the health and social services monitoring, weighing, measuring, and testing for signs of 'trouble'. Soon, the education system takes over with its rigid timetables, curriculum, rules and values. By the time an average child in the rich world reaches her/his teens, she/he is expected to put in a 50 hour working week, at school and at home. They are not paid, have little choice of the content of their learning, the pace, style or manner of teaching. They are tested constantly and divided into successes and failures.
Interestingly, the work which is genuinely needed to provide for our real needs, such as growing food, building houses, driving buses, which could give those doing it great satisfaction and pride, is often considered very lowly, poorly paid and for the 'failures' within the system. They and the work they do, although everyone depends upon it, remain almost invisible.
Then there is the huge amount of work which people do voluntarily, but which is also absolutely vital for our survival, such as raising children, or caring for each other. This is what people do who are considered unemployed - doing 'nothing'. Then there are cultural workers - artists and musicians, writers and poets, dancers, actors and performers who help us to communicate our human values, help us to see our struggles in a wider context, link us together emotionally as well as exploring ideas.
There is a deeper vein still. That which some of us would call our 'life's work'. This is where we put all our best thinking, our passions and dreams, our courage and commitment to make some unique contribution to humanity. For many of us this work has to remain 'underground', partly hidden from the mainstream world in which we have to survive. We often struggle to find the resources to carry out this work. It is probably where we stay connected with our childhood 'work' to become ourselves. They are probably part of the same thing. Only in this place can I see the possibility of inclusion. Those people most rejected by society because of their inability to fit the rigid mould of productivity have usually been given the least opportunity to fulfil their life's work - to become themselves. We have no idea really who they are. We see the terrible effects of their oppression, the patterns and injuries, and think it is them. We think it is evidence of their impairments or immorality. Those few people who have decided to be allies to those people, to help them become who they might be, have reported that it is the most exciting thing they can be doing. It seems that it cannot help but be a mutually beneficial thing.
So how do we create a society in which everyone is supported
to do their life's work, and where would that lead us? This seems to me a
question worth thinking about.
Micheline Mason September 2006
When my daughter was a baby
Someone gave me a poem about
How having a disabled child was like
Setting off on holiday to Italy and
Ending up in Holland instead.
I said thanks,
Pondered the poem for years
Not quite able to put my finger on my discomfort
Until I started thinking about how to get the local CDU
To buy the 'Welcome Pack'.
Then I realised why the message was so wrong.
So I said to them
'Forget Holland, why change your plans.
The way I see it, it's like going to Paris for the first time
Determined to get to the top of the Eiffel Tower.
When you arrive there is a general strike on
And you're flung into a political situation that you
Never had to think about before.
Your innate humanity tells you to take the path of justice,
'Liberty, humanity, fraternity',
So you remember that goal, the top of the tower,
And one by one
You work out a way to go
Under, over, around and through
The barriers that sometimes seem
Along the way you realise
That by every barrier is a group of allies.
Maybe they aren't the ones that you were expecting,
A raggle taggle bunch
You would never have come across without the strike.
But then where would we be without trade unions -
Working long hours for low pay? (!!!)
In a world where the rich and powerful remain unchallenged.
The trek to the top of the tower takes longer than
The route is winding, goes backwards sometimes.
But the friends you meet along the way sustain you,
And the view when you get there
I'll let you know
But from where we stand it's looking good,
What's more, it's still Paris.
DON'T MESS WITH MY HOLIDAY PLANS
Eleanor is a child with high level support needs who lives
Last September she transferred from primary school to secondary school. A review of Eleanor's support was held in January of last year in order to make the transition as smooth as possible.
Before the meeting, Eleanor's parents with two friends of
the family drew up their hopes and suggestions for the transition into a large
picture diagram. They took this to the meeting and stuck it to the wall.
At the meeting were Eleanor's Mum and Dad, Eleanor's personal assistant, and two family friends. Also in attendance were Eleanor's current teacher, her educational psychologist, her speech and language therapist, two local authority officers, her social worker and the Assistant Head Teacher from Eleanor's new mainstream school. Eleanor's mother went through the plan on the wall and after discussion it was agreed that:
- Eleanor will have a core curriculum of music, art and sport every day with the other pupils.
- Each day there will be some time for reflection, therapy, reinforcement and individual learning.
- Other options such as design technology, food technology, citizenship will be explored.
- There will be a team of four teachers working with Eleanor: Angela (the year head and head of PE), Eric the music teacher, Vicki for Art and Debbie for technology and as her tutor group leader.
- The LEA will employ two learning support assistants who will work in school and will also help her to attend two after-school activities per week (1.5 FTEs). They will work from 1st April 2006. Eleanor's parents will be part of the interview panel.
- The LEA will find some EP time to come in and help set up a circle of friends within Eleanor's tutor group.
- The school will allocate staff development time for Eleanor's parents to talk to the school about her gifts, ambitions etc.
- Eleanor will be invited to join the 'Jonah' programme with other children who are not from St. Hild's catchment area to help introduce her to the school.
- Eleanor will have her own timetable. Each period will include learning goals set by the teacher. From these Eleanor's progress will be measured.
Eleanors mum Liz sent us this update on how things have been going since then.
"Eleanor started St Hilds school in September 2006. The
plan was given to the school and they found it useful for their timetable
planning. From Easter Sarah Norman, a teacher from St Hilds visited Eleanor's
primary school weekly. This helped Sarah understand how Eleanor learnt and
how to adapt materials for her use. We were very grateful to Gwyneth and Springwell
School for allowing this opportunity as it helped Eleanor make a smooth transition
from primary to secondary school.
Mark and Stephen, pupils from St Hilds also visited Eleanor at Springwell and made friends with her. From May Eleanor began to visit St Hilds weekly so she got used to the surroundings and people there.
Her timetable is very much as described. Everyday she does one or two periods of classes with her year group - she enjoys drama the best. Everyday she has one period which is just one to one. Her teaching assistant has learnt some physiotherapy exercises which helps Eleanor a lot. Every day she does either literature or numeracy with a smaller group including Mark and Stephen. Eleanor enjoys school very much and has made lots of friends. Sarah designed a target sheet which is used in every lesson and helps keep track of Eleanor's progress. There is also a home/school book which helps us find out what Eleanor has done at school.
The plan also helped build relationships and trust with the school and local authority. So often I hear about situations where things promised in reviews aren't implemented which can be really frustrating. In Eleanor's case what was promised was delivered. Eleanor is valued as an individual. At one open evening the headteacher thanked Eleanor for how much she has given the school."
At 10.50am (New York Time) on the 13th December 2006, the
United Nations General Assembly adopted a new Convention on the rights of
'persons with disabilities' - the first human rights treaty of the 21st century.
This is particularly good news for us inclusionists because the Education
article (24) clearly supports inclusion for ALL disabled learners - no ifs
We must now do all that we can to ensure that the UK Government, once they have ratified and signed the convention in March 2007, properly implement their new human rights obligations.
On the 7th December 2006, the Office for Disability Issues announced the names of the 21 disabled people who will be the new advisory body to the Government on disability policy issues and in particular the delivery of the recommendations from the Prime Minister's Strategy Unit's "Improving the Life Chances of Disabled People" report. We are delighted that 6 of the 21 disabled people are involved in campaigning for inclusive education so we are hopeful that Equality 2025 will give it a high priority.
Social Care Institute for Excellence knowledge review number
11: Supporting disabled parents and parents with additional support needs.
Published: November 2006
Authors: Jenny Morris and Michele Wates.
Description: This knowledge review is about parents with physical and/or sensory impairments, learning difficulties, mental health problems, long-term illnesses such as HIV/AIDS, and drug or alcohol problems. Its main focus is on social care, but integral to this are the relationships between social care and health, housing and education.
This knowledge review can now be viewed or downloaded from the scie website - http://www.scie.org.uk/publications/details.asp?pubID=107
On 15th December a group of 15 parents, teachers, disabled
adults and young people met to consider the advice from the Joint Council
for Qualifications (JCQ) on Access Arrangements to exams for disabled candidates.
It was felt much of this advice ran counter to the need for Schools, the QCA
and the JCQ to promote disability equality (Disability Amendment Act 2005).
In particular the advice on practical assistance specifically excludes 'facilitated
communication, which is not approved by the Joint Council'. It was resolved
to take up particular cases of disability discrimination and to meet again
to continue the campaign.
In addition, QCA have started consulting young disabled people about criteria for the new A-Levels and a successful meeting was held on the 12th of January.
Have you ever received a Portage service for your child and then decided to stop or the service has been withdrawn?
Have you ever been offered a Portage service and decided not to receive it?
If the answer to either question is 'yes', please can you help the National Portage Association with a survey they are doing to help improve services?
What we want to find out
We want to know about families' experiences of Portage particularly if their Portage service stopped sooner than planned for any reason or if they decided not to use Portage.
What will it involve?
I will ask you to either arrange to talk to me on the telephone or to complete a short questionnaire. Any information you choose to share will be treated in the strictest confidence and you will not be identified in any report/s that are written.
If you think you can help, or know of a family who can, or
would like to find out more please contact me -
I have a son with a learning disability and I know how important it is that families have an opportunity to share their views about support available to them and their disabled child so services can improve in the future.
I will look forward to hearing from you. Thank you
Tel 0113 2671337 (9am to 6pm Monday to Friday) or email email@example.com