Inclusion Now Articles Issue 17
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Following on from the 'Including Eleanor' story in Inclusion Now Volume 16, Sarah Norman, SEN Teacher at St. Hild's School, talks about the positive impact that Eleanor's inclusion has had on the whole school.
Before Eleanor started at St. Hild's Church of England School we believed that "including" Eleanor was all about meeting Eleanor's needs in the best way we possibly could. We are much wiser now and know that Eleanor's attendance at St. Hild's has far-reaching and constantly surprising benefits.
Including Eleanor has enriched the school community in many ways, both academically and socially. Eleanor has a full and active part in school life. She spends some time each day in lessons with her peers and some time each day working with a small group in 'The St Christopher Centre', the achievement support base here at St Hild's. This means that Eleanor is working with students of all abilities and ages (11 - 16) and, therefore, is very much part of our school community.
Eleanor attends a variety of lessons in school, from Year 7 lessons to Year 11 GCSE Music lessons. In all of these lessons Eleanor is a valued member of the class, inspiring one Year 7 student to write "I believe in Eleanor because she has problems and I really believe that she can still do things, she has the strength to help herself". One of our Science teachers has recently approached us to ask if Eleanor and Mark would like to attend Science lessons next academic year as she is sure that Eleanor would enjoy the practical lessons. This is an indication of how relaxed the staff now feel about Eleanor's presence in the classroom. At the start of this academic year staff were concerned about how they planned their lesson to include learning objectives for Eleanor, the above is evidence that this is no longer a worry to them.
Mark, a Year 8 student, with ADHD and literacy difficulties was a member of the team that worked with Eleanor to support her transfer from primary school. Mark has low literacy levels and as a result struggles to stay on task during lessons. We noticed that when he worked with Eleanor he was able to stay on task and was much more settled than previously. After consultation with Mark's parents it was decided that he would spend the majority of his school day with Eleanor, attending lessons with Eleanor and working with her in the St Christopher Centre. As a result Mark has a curriculum tailored to suit his needs, which has enabled him to achieve success on a lesson by lesson basis. Mark is now a much happier and well adjusted student who is achieving his targets and who feels much better about himself, this is evidenced by the fact that Mark is rarely in trouble now and is making academic progress. We have plans to introduce a Year 6 student to this little group as she has learning difficulties and is terribly scared of coming to 'big school'.
"Eleanor has helped me, I don't get sent on call anymore. Eleanor has helped me learn and behave better. I'm more focused now, and I meet my targets." Mark
Eleanor has also been asked to be part of the Travel and Tourism group, which will be part of the KS4 provision from September 2007. Recently the students wishing to follow this NVQ course went on a trip to Whitley Bay and the North East to look at local tourism. The students had to write about their experience and, without prompting from staff, the students commented on the access arrangements and the quality of the disabled facilities because they were all concerned that Eleanor should not miss out on any of the activities available to the group. Although Eleanor does not use a wheelchair many of the students pointed out which areas of the attractions were not suitable for people in wheelchairs. As part of the course the students will have to plan visits and study the various aspects of the tourism industry. The students automatically include Eleanor.
During the school's recent theatrical production of 'Sweeny Todd' Eleanor was in the chorus. This was made possible through support from home, and peer support from other members of the cast. All members of the cast enjoyed working with Eleanor, and felt that her presence enhanced the behind the scenes atmosphere.
Eleanor enjoys singing. Some of our students have put together a choir which meets after-school on Wednesday. For the second year our Prince's Trust groups organised a Christmas Party for elderly residents in our community and Eleanor's choir was asked to sing carols at the party. Although some members of the group were used to performing in public many of them were not and felt uneasy at the prospect. However, all students rose to the challenge. These students would never have thought of performing in public if they had not been working with Eleanor. She has given them the gift of self esteem and self confidence as well as supporting one another to perform publicly. This has also helped these students with their presentations in school, thus improving their level of speaking and listening skills. Speaking and listening skills have been an important aspect of Eleanor's learning programme, but this again has had an unexpected benefit. A group of our students spend breaks and dinnertimes with Eleanor. They have had to learn the difference in formal (lessons) and informal (leisure time) vocabulary. This is an invaluable skill and one which does not come easily to our students.
One of our Year 11 students recently won a community award, as a result of working with Eleanor. Joanne has given up her own time to work with Eleanor in choir activities, worked with Eleanor during her transfer to secondary school, works with Eleanor after school and offers support in lessons as part of her Prince's Trust Membership and continues to support Eleanor as she progresses through Y7. As Joanne will be leaving school in July she is helping to "train" others in Eleanor's team to continue this good practice in September 2007.
"I've learnt lots working with Eleanor. I enjoyed the challenge, it helped build my confidence. People ask for and listen to my advice, it has made me feel respected and valued. Eleanor has taught me a lot, and I hope I've taught her lots too." Joanne
Eleanor has had a positive impact on the behaviour and attitude of many of the students. Students who are upset or angry often come to the St. Christopher Centre to calm down. Eleanor's presence in the same room facilitates the process. Students calm down much more quickly by being with Eleanor, whether just being in the same room, working with her, reading to her or helping with her learning programme, indeed an unexpected outcome has been the success of two girls in the year above Eleanor who have ADHD and who often work with Eleanor and have demonstrated a caring desire to want to help others succeed academically, attending a Year 7 English lesson to help students prepare stories about mythological figures.
"Eleanor gave me a focus for my ICT project, I've enjoyed researching and creating information for others to find out about Eleanor. Working with Eleanor gives me a sense of responsibility and helps make sure I stay focused." Katie
There are also the little things, such as students holding open doors for Eleanor; thinking about the language they are using; slowing down in corridors when they see Eleanor, indeed the school council have suggested mirrors on the corners so that students can see if Eleanor is around the corner, this will obviously provide staff with the opportunity to see around corners!
We no longer talk about including Eleanor, we now look for ways that Eleanor's learning programme can enhance the educational experience of our students. St. Hild's would be a poorer community without 'our Eleanor'.
"When we were considering a mainstream school placement
for Eleanor we very much focused on her learning needs. Since she joined St
Hild's we have been overwhelmed to learn of the positive impact Eleanor has
made on school life. Perhaps it's a forgotten piece of the story how much
disabled children contribute to the community around them." Liz and Andy
The Perspective of a Parent by Ingrid Körner
The right to education is indisputable and universal. It is enshrined in Article 26 of the Universal Declaration of Human Rights, Article 28 of the UN Convention on the Rights of the Child and other international and European human rights instruments.
However, in many European countries, access to education is denied to disabled children living in long stay residential institutions. This is because governments often consider children with disabilities as 'uneducable', in other words not worthy of receiving education because of their disability. This situation must change.
It has been clear for a long time that every child is able to learn, irrespective of the severity of his or her disability. Still, there is a question about what type of education is in the best interest of a child with disabilities - special school or an inclusive school?
After many years during which children with disabilities attended special schools, segregated from their non-disabled peers, a strong movement has emerged in favour of inclusive schools. Disabled adults, who describe themselves as special school survivors, are also among those demanding an end to segregated education, with the slogan "don't special me".
Inclusive education, where children with disabilities attend school together with their non-disabled peers and receive appropriate support, is now recognised as a human right. We now know that there is no reason to educate children separately on account of their disability.
As parents of children with disabilities, what we experience in our families is that children with and without disabilities belong together in families and in schools. Generally speaking, parents do not want their disabled child to be sent away from the family and home to receive an education. Parents know that by being enrolled in a special school, their disabled child will be labelled and will therefore be devalued and socially excluded.
Another issue in favour of inclusive education is the fact that children who have attended special schools have difficulties in developing relationships with their non disabled peers and are at a disadvantage in preparing for life in the mainstream community. Disabled children are best prepared for life in society when they stay in the family, the kindergarten and the school, together with their non disabled peers.
We must understand that people with disabilities of any age
are ready and able to follow the same principle as non disabled people - learning
by doing! For this reason, it is important that we demand inclusive education
for all children with disabilities.
Article first published in: 'Focus on the right of Children with Disabilities to Live in the Community' Focus Report 2006, European Coalition for Community Living.
Ingrid Körner is the President of 'Inclusion Europe'. www.inclusion-europe.org
The new year kicked in with TV channels breaking the story of Ashley X. This 9 year old disabled girl in Seattle had been subjected to drastic medical intervention, including hysterectomy and breast bud removal, to stop her growing up to be a woman. I winced because right next to me was my daughter Zahrah, not dissimilar to Ashley X, but happily watching tv as a fully grown young woman of 19, at the heart of our small family. 'How sad..' I thought, gazing at the innocent pre-op photos of Ashley, but then my feelings welled up. 'How grotesque' I sighed and instinctively switched off the TV.
I walked around restless in our house - how could parents in the richest nation in the world ever do this to their child? My daughter, like Ashley X, is non-verbal but communicates by smiles to tell us clearly what she enjoys. Why didn't Ashley get a chance to express her wishes about what after all was her body?
When I visited the web, I was in for more shocks. 'I want my girl to have the Ashley treatment', screamed Mrs Thorpe in the Daily Telegraph. International blogs came in thick and fast. 'Euthanise the problem', said one anonymous blogger. It seems when it came to disabled children, anything was permissible.
What about Zahrah? Could she be thinking that I could put
her through such demeaning treatments?
'I wouldn't do such a thing to you' I reassured her. Late at night I wondered why the nation that had sent 600,000 troops to Iraq could not have flown just one Support Assistant and a hoist to help Ashley's family.
Thankfully now, the Washington Protection and Advocacy System, a US group which advocates for disabled people's rights, has found that the operation on Ashley X was unlawful. The hospital responsible has admitted it broke state law and agreed to change its procedures.
Unfortunately, this has come too late for one little girl
but I hope it protects many other vulnerable children whose parents may be
confused about where love begins and where it ends.
My name is Miro Griffiths, I am a seventeen year old student
from the North West; I've been involved in local and national disability issues
for quite a few years, and recently I became a member of Equality 2025, which
is a network made up of disabled people, with the purpose of voicing the views
of disabled people within society directly to Government - I'm particularly
interested in disability issues that affect my generation.
On the 30th March 2007 the UK Government signed the UN Convention on the Rights of Persons with Disabilities. I was fortunate and honoured to have been part of the UK delegation which attended the signing ceremony at this historic event. Ninety two Member States and the European Community have signed this UN treaty to promote and protect the rights of the world's 650 million disabled people. Jamaica also ratified the Convention - making them the first country to adopt the convention as law. It became the first human rights (HR) treaty of the 21st Century, the fastest negotiated HR treaty in history, and a record for the first day of signature of any convention but more importantly it will improve the life chances of disabled people throughout the world.
The pact demonstrated a fruitful partnership between disability groups and governments and reinforces the rallying cry of the international disability movement "Nothing about us without us". Furthermore, it changed the way the international community looks at disability and is very much defined in social model terms. I felt encouraged that true structural change is on the horizon.
With estimated 120 -150 million disabled children around the
world, it was good to see young people represented at the convention; two
young disability advocates from Nicaragua and Armenia spoke, highlighting
the importance of giving disabled children a voice in policies and legislation
that affects them. Their speech reinforced the message that special attention
to the situation of disabled children is needed in implementing the new convention.
Presently it is estimated that 90% of disabled children in developing countries do not even go to school and 30% of street youths are disabled. The world's disabled children are disadvantaged, discriminated and often neglected and don't have access to education, health care & even family life.
This Convention gives visibility to both their plight and their human rights and the disability movement must urge/lobby governments to ratify the convention as soon as possible so that it will bind countries to implement these rights until they are enforced worldwide.
Despite the really depressing statistics and facts about disability
worldwide, I found the whole experience to be a positive first step to true
equality for disabled people. I heard someone say, "disability equality
is like a train that is very much on the move; it is only going forward, and
it's only stopping to pick up passengers and true structural change, and equality
for disabled people is clearly the last stop". This really convinces
me that there is change on the horizon.
SIGN UP TODAY!! 1 MILLION SIGNATORIES needed to petition the
European Parliament for a Disability Specific Non-Discrimination Directive
During the European Year of Disabled People (EYDP) in 2003, disabled people across Europe tried to get the European Parliament to adopt a Disability Specific Non-Discrimination Directive, and failed. Now in 2007 in European Year of Equality the European Disability Forum has launched a new campaign for a Disability Directive.
The European Commission did however introduce an Equal Employment Directive in the EYDP. This Directive forces the UK Government to strengthen Equal Employment legislation including bringing all employers under the requirement not to discriminate in recruitment, promotion or training on grounds of disability, age, sexuality or religion.
A European-wide Disability Directive is crucial now that the UK and 18 of the 27 other EU members have signed up to the UN Convention on the Rights of Persons with Disabilities. The UN Convention contains comprehensive measures to develop full equality for disabled people in all areas of life. But if each country ratifies this Convention in different ways, how will the European Union claim to have a unified market of social measures?
The European Union has between 50 and 100 million disabled citizens depending on how they are counted. At present there is no unified definition or method of gathering data that truly reflects our lives and what resources and systems of support are required to enable us to participate as equal EU citizens. A unified directive would ensure such agreements.
Already the EU have shown the benefit of European wide legislation
to disabled people in the UK. The Air Passenger Directive ensures equal treatment
for disabled people by airlines across Europe. A trans-European train passengers,
bus, coach and ferries directive is also in the pipeline.
These are all things not covered by the Disability Discrimination Act.
The European Structural Funds (£43 billion per year) for 2007-2013 have to involve disabled people in monitoring, promote equality of opportunity for disabled people and ensure accessibility in all infra-structure projects across Europe. In the UK much of the money spent by local Learning and Skills Councils and Regional Development Boards come under these rules. But there is little or no evidence to show that disabled people are effectively involved as per the funding requirements.
The UN Convention in Article 24 requires the development of an inclusive education system. As can be seen from the Map of Inclusion in Europe elsewhere in this edition the position is extremely uneven across the EU with millions of disabled children being denied the right to effective inclusive education. Article 24 needs to be the template for education in the Directive.
Please do all you can to get signatories on line at: www.1Million4disability.eu
Come to Brussels on October 4th to show your support. Contact your MEP who may be able to pay for your attendance at the demonstration and lobby.
Tara Flood and Richard Rieser
The adoption of the United Nations Convention on the Rights of People with Disabilities, which includes Article 24 with its commitment to developing an inclusive education system for disabled children and students, requires the European Union (27 countries) to develop a strong position in favour of developing inclusive education. This is part of its work to get all European countries to adopt and implement the Convention. Last year the Council of Europe which includes 64 countries including Russia, the ex-Soviet Republics, Eastern Europe as well as all EU countries adopted a commitment to develop inclusive education at it's summit in Moscow.
How well is Europe doing?
What we are mapping here is the percentage of registered, certified or statemented disabled pupils who are educated with their peers in mainstream schools and classes. In many parts of Eastern Europe, Russia and Ex Soviet Republics are disabled children with learning difficulties, communication difficulties or 'complex needs' who are kept in institutions rather than attending even segregated special schools. This was recently estimated (2005) by one New York based Mental Health charity as 1.5 million. They found that many children with Downs Syndrome are kept in bed all day in Russia (300,000).
This is a map of mainstreaming or integration, but in some
countries it may be inclusion with disabled pupils getting the support they
need alongside their non-disabled peers to achieve their potential both socially
and academically. Integration is a precondition of inclusion. These are more
likely to be in Group E. Group A have the furthest to travel to develop inclusive
education systems. Those in Group B,C and D are at different stages on the
The figures for the Map are taken from country Ministries of Education and are those children in compulsory schooling who are certified or statemented to get additional support to access education. All of these children would be considered disabled under any generic definition. There are then wider groups who may get additional support through their school or as in the case of Estonia, Latvia and the UK ( though in UK case not included in the data 1.4 m rather than 300,000) where a much larger number of pupils are identified for support. There are also some countries such as Sweden, Ireland and Greece which only identify a very small percentage of their population for extra support. The rest are included in the mainstream.
A: High Segregation / High Proportion
More than 3% of pop and more than 50% segregated
Latvia, Switzerland, Netherlands, Hungary, Germany, Belgium, Russia, Poland, Bulgaria, Rumania, Ukraine, Belarus
B: High Segregation / Low Proportion
Less than 3% of pop and more than 50% segregated
C: Medium Inclusion
Less than 3% of pop and more than 50% included
UK, Ireland, Iceland, Greece, Czech Republic, Slovenia
D: Majority Inclusion / High Proportion
More than 3% of pop and 50 - 85% included
Spain, Estonia, Austria
E: High Percentage Included
85% + included
Portugal, Norway, Sweden, Italy, Lithuania, Cyprus, Denmark*, Malta, Finland*
We can address the above table to give a typology. This is
based on if the country has a higher or lower percentage with SEN and that
over or under 50% of these are in mainstream provision. This gives Groups
A,B,C or D. If more than 85% are in mainstream provision this is Group E.
This gives a possible five groupings. *Finland and Denmark have inclusive
systems but count those in separate classes as segregated. In ethos and practice
they are more like Group E though statistically they fit group A. Much of
the data used here can be found at the European Agency for Special Educational
Needs website: www.european-agency.org
Education is the key to opportunities, because it allows each person to develop his or her own capacities to the fullest, as well as self-determination and choice. Nevertheless, education can represent a challenge for children with severe learning disabilities if adapted support is not ensured. Thus, most people with autism or other complex dependency needs disability are excluded from the education because of a lack of adapted provisions or of the specific educational support that are needed to ensure self-development and personal growth, as well as those basic skills that they need to live independently.
Sometimes families are supposed to provide themselves at home education to their children, with or without an external support. This practice puts on the families disproportionate burden and responsibility, and does not respect the right of the disabled person to be included in society.
No person with autism should be deprived of the freedom to develop his or her own way of life in as independent a way as possible. The right not to be discriminated against in the enjoyment of rights is also violated when persons whose situations are significantly different fail to be treated differently without an objective and reasonable justification. As a consequence, children with autism or other severe learning disability must receive sufficient individualised attention on a daily basis so that educational objectives can be effectively implemented. The development of their unique potential depends more on the availability of suitable, proper, early and lifelong support than on the degree of individual impairment.
Autism-Europe believes that the cornerstone of effective provision is individualisation to ensure that each person receives appropriate education and support in order to achieve and sustain successful functioning as independently as possible and to exercise choice.
Autism-Europe on Inclusive Education
As any other activity, education should be provided in inclusive environment. To the extent that this leads to the specified educational goals (e.g. peer interaction skills, independent participation in regular education), children should receive specialised education in inclusive settings in which ongoing interactions regularly occur with typically developing children.
Nonetheless, the education of children with autism and other
complex dependency needs disability is mainly segregated in special schools
or institutions. Moreover the inclusion of children with autism in schools,
when it occurs, is often based on the efforts made by their parents and not
as normal integration procedure.
Inclusion in the mainstream should be based on entitlement for all, regardless the origin, nature and severity of disability. School systems must be able to accept any pupil, whatever the degree of their learning impairment. The school system organisation cannot, in any event, restrict or violate any right of the person recognised by international and national sources.
Equal enrolment and access for all to the Education systems, regardless of the nature or severity of disability, should be guaranteed. The school system and/or schools should not be allowed to refuse education to pupils with severe learning impairments or complex dependency needs on the grounds of the nature or severity of their disability (because they are "uneducable") or because of a lack of resources (because the school is not equipped to deal with their educational needs).
The policy of inclusion must essentially ensure that appropriate learning or other positive experiences take place in the mainstream school. Nevertheless, the policy of inclusion should never be used to deny any service to any individual or to provide symbolic or token services which may give the illusion of provision whilst in reality denying opportunity.
Autism is a spectrum condition requiring a range of individual
sophisticated responses. It is hoped that increasingly these will occur within
the mainstream of provision, for all or most of the time, while providing
the most appropriate and meaningful education and support. Reasonable adjustments
should be expected within educational facilities to provide better access
and sustainable participation and benefit. Though for disabled persons with
autism there is, indeed, a need for specifically adapted educational settings,
with specialised teachers and intensive support, to work on an individual
basis or in small group placement, this expertise and adapted settings do
not need to be outside of the regular school premises.
Sometimes, a woman's just got to have . .chocolate - the ultimate in seratonin rush with a history trailing back to the Mayan and Aztec civilizations of South America. And so it was that on a hazy September afternoon, after a stroll by the banks of the river Rhine in Dusseldorf, that I happened to come across an open market.
The buzz of open markets is a heavily underestimated pleasure and gets only a passing mention in many a tourist literature. In my one-page guide to Dusseldorf, it didn't merit a mention at all. With the curiosity of a cheap weekend tourist who must savour all there is in this lesser known of German towns, I sauntered past the stalls with colourful awnings and make-shift displays with people milling around them. In the dappled sunlight, the rows of wooden stalls displayed a variety of craft items, table linens, pottery and ornaments. The clunck, clunck of noodles being tossed in a wok with the distinctive aroma of spicy sauce was a temptation and so was the rievkooke (grated potato fritters) but then I had just had my fill of grilled scampi at the Gosch fish stand.
It was only when I took a slight turn to my right that I came
across an array of chocolates. Neatly packaged flat bars with the Fairtrade
mark, they were displayed in an unbelievable range of flavours and fillings
- lemon, vanilla, almonds, whisky, raisins, banana . . . and several more.
Trying to decide amongst them, I suddenly stopped at one. It was intriguing.
Was I right that the wrapper had sketches of people in wheelchairs happily
scooting around? Or, was I just missing my dear daughter in London? Then I
looked again. At the top was a row of distinctive sign language. The strapline
'Barrierefreiheit Schmeckt . . .' only hinted at a message but I did run my
finger over the wrapper and feel a braille lettering. "This is a must-have",
I thought and immediately purchased two, taking care to preserve the fascinating
wrapper. I was on a natural high and it was not just the taste of the lemon
polenta filled chocolate which sent me there. The feeling also comes from
discovering something so close to your heart in the most unexpected of places.
When I returned home to London I was able to contact the chocolate manufacturers (www.zotter.at) who kindly translated the message. It was a tribute to the equal opportunities gained by disabled people.
"Equal opportunities taste good!" it said. "There is no difference between disabled and non-disabled people in one certain thing: both love to nibble chocolate. Since 1st January 2006 the law of equal opportunities for disabled persons has come into effect in Austria. All barriers for disabled people in all life situations have to be completely abolished. For example: ramps and lifts, accessible transport, guide systems for the blind and sign languages have to be provided.
While nibbling a piece of chocolate with like-minded people, parents of disabled children and persons responsible for schools, jobs, politics, administration, sports, architecture and culture, we would like to invite you to reflect on immediate improvements for disabled people."
What a fun way to pass the message, I thought. Could I imagine
that one day the newly formed Commission for Equality and Human Rights in
the UK (www.cehr.org.uk) would wrap its message in such a hedonistic style?
Just think of the paper needed for the title alone
The Nazis murdered at least 240,000 disabled people, according to the Government of Germany, who in 2005 issued an apology to their relatives. How did doctors, nurses and others trained to save lives end up planning and killing thousands of disabled Germans?
Drawing on the development of a false science called 'Eugenics' developed in the UK and America, Hitler and the National Socialists instituted measures for compulsory sterilisation of men and women suffering from hereditary diseases in July 1933 soon after coming to power.
In ancient Greece, which was made up of city states they relied on warriors to maintain their power and empire. Physical or mental impairment was viewed as an unacceptable weakness. Aristotle and Plato taught that disabled babies should be killed. This was the start of eugenics.
Over 2000 years later, in the wake of Darwin's theories of evolution and natural selection, his cousin Sir Francis Galton decided to apply the theories to human society. This entailed arguing that feeble minded and disabled traits should be should be got rid of from the gene pool through sterilisation.
These ideas soon became popular and in the USA led to laws on compulsory sterilisation of born deaf women and for those with an IQ below 70 in 37 states.
As migration to the USA shifted from Western Europe to Eastern and Southern Europe eugenicists campaigned for genetic monitoring of immigrants and Ellis Island was set up for this purpose with over 100,000 immigrants being sent back to Europe as medically or genetically unfit for American citizenship.
In the UK the Mental Deficiencies Act of 1913, argued for by Winston Churchill, was passed and led to the incarceration of up to half a million disabled people in single sex mental deficiency hospitals.
Hitler drew on these ideas and in 'Mein Kampf' (1923) argued for the killing of those suffering from incurable and painful diseases.
So on the first opportunity after coming to power Hitler introduced the sterilisation Law. This was expanded in 1935 into a law "to safeguard the hereditary health of the German People". This introduced compulsory termination where either partner had hereditary impairments such as deafness.
However, Hitler was still far from the objective he had proposed in 1923. The next phase involved a propaganda campaign with a series of documentaries distorted through lighting and cutting to show 'the life unworthy of life' of many in institutions and the need to get rid of the 'burden on the German worker'-'the useless eaters'. These films were shown in all German Cinemas between 1936-1939. 'Ich Klage An', a full length drama was also made and screened on the need for mercy killing.
The propaganda began to work and families wrote to Hitler asking for help to kill their poor disabled relatives out of an act of mercy.
Germany was still nominally a Christian country. An opinion
was obtained from Professor Joseph Mayer - a well known Catholic Professor
of Theology - which argued in Christian terms that 'Mercy Killing' could be
accepted. The Pope's representative and leaders of the Protestant Church were
also consulted on this opinion and although not happy did not make any objection
Hitler set up T4 which got its name from number 4 Tiergarten Strasser, Berlin where Reichsleiter Bouhler and a medical expert Dr Brandt were planning a programme of extermination of disabled people.
In October 1939 after war had been declared Hitler issued a secret decree backdated to 1st September spuriously based on a letter from a parent. T4 developed a programme to expand the authority of physicians, who were designated by name, to examine patients who were considered incurable in the best available judgement and after critical evaluation of their condition grant them mercy killing.
400 doctors, nurses and SS worked on the programme. After the war none were brought to trial for this. Many went on to be respected Professors of Medicine around the world.
It was not 'mercy killing'. It was a programme of mass murder of mentally and physically impaired people. All hospitals were trawled to find the senile, those with learning difficulties and mental health issues, under care for more than 5 years, incapable of work or only capable of routine work. Forms were sent to T4 where they were marked Life or Death.
A red cross on the form was a death sentence and victims were taken in blacked out buses to 6 castles which served as killing centres. The mass killing methods of the concentration camps were perfected here. 96 personnel who learned their lethal craft on disabled people went on to person the camps in Poland where the 'final solution' for the Jewish People took place.
There was resistance from families, church leaders and eventually in August 1941 the programme was halted. However, the killing of disabled children went on right up to 1945 in a large number of hospitals.
The 'Not Dead Yet' Campaign against Lord Joffy's Bill for 'mercy killing' draws on this history of disabled people. There can be no place for such legalised killing in a society committed to human rights. We should say to the supporters of mercy killing such as Baroness Warnock that disabled people are fully human and no one has the right to kill us. Remember the slippery slope of Nazi Germany - another reason why we need a disability Directive across Europe to ensure the right to life of all disabled people.
This shameful history should be taught in all schools under
the Duty to Promote Positive Attitudes to disabled people, as an understanding
of the history of our oppression is essential.
From a child's point of view, inclusion at school means having friends. The authors of this book grapple with the uncomfortable reality that many children, especially those who appear 'different', are lonely and isolated even in 'inclusive' schools.
They base their writings on their own observations in the school system in the USA, on those of teachers, para-professionals, parents and children themselves - "Boy did they give us an earful!"
They take a critical look at some of the 'Friendship Programmes' introduced by well-meaning adults to try and help. They also look at the common ways in which support is provided to disabled or disruptive pupils which can, unwittingly, create further barriers for these children.
They look at the big picture - the values within the wider
community which mitigate against connection and friendship across societal
divides, and the pressures put on teachers to produce a certain kind of academic
success rather than answering children's more basic needs.
They suggest many strategies which might help, but emphasise that these will not work without a change of values and some deep thinking about the true nature of friendship if we are not to settle for superficial appearances of 'friendliness' rather than the real thing.
I liked this book a lot and think it is essential reading for everyone who wants to think about this fundamental issue of 'inclusion'.
However, I have two concerns. The first is their call to not over-rely on adult one-to-one assistants who can, it is feared, become a replacement 'friend', or who simply come between the children they work with and any potential friends. The danger is that without their assistants, some disabled children are left without facilitation during the very times they could be forging new relationships, e.g. breaks and meal times. This is particularly true for young people who, for example, use facilitated communication in order to have a conversation. In my view such adults need training in how to encourage friendships, especially when they are new. This may require the adult to pass on to other children some of the practical skills needed to support the disabled child so they can safely be left alone together.
My other concern is that I feel this book, like all others I have read, does not really acknowledge the role of young people's culture in school - the harsh and almost hidden world understood only by the young people themselves, peculiar to each country and sometimes to each school. I think adults shy away from the horrors they remember themselves and live in denial of it in the present.
Young people are a minority group within society with few rights and little power of their own. Like all 'oppressed' groups they internalise these hurts and play them out towards others who are in a weaker position to themselves. They create hierarchies and divisions which reflect those modelled by the adult world, fine tuned in every detail - hair, clothes, musical tastes, access to money and other resources, class, race, faith, gender, size, shape, weight, sporting ability, fighting ability, degree of nerve, language used, the list is endless and constantly changing. You cannot possibly really 'belong' in school if you are not part of this culture, and most adults know little about it. And it is not easy to get young people to talk about it because it's secret nature is part of what it is. Disabled young people, especially those with no brothers and sisters or who got to special schools, are often more 'different' because they do not know about this other world than because of their impairments. (Special schools also have hidden and equally hierarchical cultures, but they are not the same as those in the mainstream)
One person who has done an excruciating exposé of school culture through the pages of his recent novel 'Black Swan Green' is David Mitchell (Sceptre Books 2006). The main character is a thirteen year old boy who writes poetry and stammers. His diary-like story of survival as a boy in an ordinary comprehensive school rings true to me, having had some insight into the experiences of my daughter and her friends as they survived theirs. It is all in the detail: "Boys can't use umbrellas 'cause they're gay', 'beautiful' is a word you can only use when talking to girls".
I see a role here for young adults who have recently left school but for whom the memories are still sharp and clear, not necessarily to come back into the school environment, but to help bring out into the open this other picture of the reality of school. In fact we all need to talk about and reflect on our school days because we are all still carrying a lot of painful memories which stop us being able to think about how to help the current generation with what are only too often the same struggles.
Both these books I think are complimentary resources for getting
such discussions going and
I highly recommend them.
'Seeing the Charade - What We Need to Do and Undo to Make
Carol Tashie, Susan Shapiro-Barnard and Zach Rossetti
Inclusive Solutions 2006
and 'Black Swan Green'
Sceptre Books 2006
The biggest shift towards developing effective inclusive education is currently occurring in schools throughout England, Scotland and Wales. The Duty to Promote Disability Equality and the need to develop a Disability Equality Scheme (Disability Discrimination Amendment Act 2005) build on the previous duties to have a School Access Plan and to make Reasonable Adjustments. The DfES was against the new duty applying to schools in 2005, but all political parties supported it in Parliament as did the entire voluntary sector, Disabled Peoples Organisations and all the Teacher Trade Unions.
The duty to promote disability equality has been in place for all schools from 4th December 2006. However primary and special schools and Pupil Referral Units in England have until 3rd December 2007 to develop a Disability Equality Scheme. In producing this they must engage with disabled pupils, parents and staff and they must impact assess all their policies. (Guidance is available from the Disability Rights Commission: www.dotheduty.org )
The heart of the duty to promote disability equality in schools requires developing full equality for disabled pupils. This means schools planning and ensuring that disabled pupils have their needs met as fully as possible; that they are included in the academic and social life of the school and develop their potential to the maximum extent. Schools with a strong inclusive ethos and values are best placed to deliver disability equality. The majority of schools do not have this good practice and are now on a steep learning curve.
Ensuring that disabled pupils are not treated less favourably than non-disabled pupils and that reasonable adjustments are made for them in admissions, education and associated services and in exclusions in mainstream schools.
Promoting positive attitudes towards disabled people in all areas of the school curriculum.
Ensuring the elimination of disabilist bullying and harassment.
Promoting equality of opportunity for disabled pupils, parents, staff and members of the community.
Ensuring disabled pupils, parents and staff play a full part in the public life of the school.
All these are now requirements on all schools. They require the school to develop an inclusive vision and values to be able to effectively implement these requirements.
How will they be guided and supported on this journey? Well,
Local Authorities have much less influence. The new School Improvement partners
will have more influence, but are they having the training they need to be
able to advise schools on developing their inclusive practice? Will OFSTED
be able to monitor schools in the development of their Disability Equality
Schemes? This currently seems unlikely as OFSTED have not had the training
they need. Any interested party - parent, local resident, national parents
or disability organisations, trade unions can seek a judicial review if they
believe the school is not implementing the duty to promote disability equality.
We need these challenges to be taken where there is a strong case to establish
case law. We also need training for schools to develop their capacity. Disability
Equality in Education have been offering courses to schools and Local Authorities
based on an understanding of the social model of disability delivered by disabled
trainers. These are very different from the DfES courses and far more effective.
Contact DEE on email@example.com for course details.