Inclusion Now Articles Issue 2
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Parents for Inclusion Helpline story
New Act a Turning Point - Special Educational Needs and
One Flew Over - A family's fight for inclusion
A School for Everybody - The Children's Manifesto,
Access for All - Training the trainers course from
Digging for Inclusion - Making a home accessible
Does Language Matter? Richard Rieser says it does
Blabbermouth and Sticky Beak - Book Reviews
Parents for Inclusion runs a unique national helpline for
parents who are dealing with fears and dilemmas just like Carol Dixon's, whose
letter is printed below.
Dear Parents for Inclusion
I wanted to tell you about experiences on both sides of the spectrum, in case these examples help in any way.
My son has cerebral palsy, hearing impairment and significant learning difficulties. While I was told there were three schools that could cater for his needs at age 2 and a half, we were convinced that the SLD school was the only option really for him. No one mentioned that he could have a support worker at mainstream playschool. We were told that nothing is carved in stone and if he was later ready for a move we would be told.
When he was 4, I saw a job in the local paper for a special needs assistant at a local comprehensive school. Despite having worked for 10 years as a bank clerk, I decided to apply. I was amazed to be offered the job, as a general Special Needs Assistant and also to provide one to one support to a child with Downs Syndrome, starting at the school that September. I threw caution to the wind and took the job, excited about my new "career".
I was in for a rude awakening. Despite being told that full training would be provided, in reality this consisted of a couple of lectures on the first (pupil free) day, and shadowing other SNAs in normal classroom duties. No specific training was offered on Downs Syndrome, although I subsequently independently sourced a course at the Sarah Duffen Centre and the school agreed to pay. I was frustrated that no planning time was built into my day.
The work was at a much higher level than the child had been working on at Primary school and I had neither the qualifications, experience or time to make resources which were appropriate. The school seemed to have the attitude that the child should fit into their model for "normal" special needs children and if he didn't then he should be at a special school. Frustrated, and very stressed, I left the job. However, the experience had changed my views on inclusion.
Before I had thought that inclusion was only for intelligent children with physical disabilities. I had not realised the level of support which was available. I had even been told by an Educational Psychologist that my son would simply sit and look at books in a mainstream classroom and the teacher would not have the time to get him to do something else. Despite the educational problems experienced by the child with Downs Syndrome I had supported, it was clear that he was an accepted part of his peer group. That sense of belonging and being looked out for was what I wanted for my son, and I set about making it happen. I spent many a tearful phonecall to your helpline, panicking about whether I was doing the right thing and whether I would regret it, as I seemed to be going in the face of every piece of professional advice I had ever received.
Within 4 months, my son had started at our local school. He was granted 30 hours of Special Needs Assistant support per week, and he has thrived. His Annual Review at his old school had set targets of writing his first name and counting to five. A year on he could count to 100 and write his full name, and other words in joined up writing.
Thanks for all your help.
By Richard Rieser
On 11th May the Special Educational Needs and Disability Act received Royal Assent and became Law. This marked a historic turning point for the Inclusion Movement in the UK. The Act does give a real boost to inclusion. Ironically if it had not been for Foot and Mouth disease postponing the General Election until June, the Bill may well have fallen off the Parliamentary agenda with a May General Election.
The Alliance for Inclusive Education campaigned long and hard for the removal of the caveats to Section 316 of the 1996 Education Act which allowed LEA's to override the wishes for mainstream education of disabled children and their parents if the placement was:
Many cases proved that these were used in a discriminatory way to place disabled children in special schools. The first two of these caveats have gone in part I of the Act. Furthermore the LEA has to show that there are no reasonable steps that could be taken to prevent incompatibility from the remaining caveat 3. Guidance is currently being drawn up by the DfES to explain what reasonably could be done by schools to prevent incompatibility with the efficient education of other pupils.
PART ONE - FROM JANUARY 2002
LEAs can only refuse a child with SEN a mainstream place if it can demonstrate that no reasonable steps could be taken to safeguard the 'efficient education of other children'
Schools must inform parents when they have made any special educational provision for their child
Schools can request a statutory assessment as well as parents
More say to parents and young people when a statement is being amended
LEAs must set up and advertise Parent Partnership services and conciliation services
The Tribunal can set time limits for implementing its decisions
Part One of the Act makes changes to the law regarding children with Special Educational Needs, with or without statements.
The SEN Code of Practice 2001 was withdrawn from Parliament on 12th July when it appeared they might be defeated in the Lords.
This would have meant a further full consultation. IPSEA had got a legal judgement which suggested the wording on making specific special needs provision was a weakening of the existing law. The Tories wanted some revenge for the way they had been treated during the progress of the Bill and many, including the Special Education Consortium, had pointed out the inadequacies of the Code. However, now it will be redrafted and presented to Parliament on 10th October and will be implemented along with Part I on 1st January 2002. The text is available at www.dfes.gov.uk/sen/standard.htm and contains a number of changes from the current Code. Schools and LEA's have to have regard to this Code.
Hidden away in Paragraphs 8.36 and 8.37 the Code makes clear that:
a) 'A statement should specify clearly the provision necessary to meet the needs of the child. It should detail appropriate provision to meet each identified need and quantify provision as necessary'.
b) 'LEAs must make decisions about which actions and provision are appropriate for which pupils on an individual basis. This can only be done by a careful assessment of the pupils' difficulties and consideration of the educational setting in which they may be educated.'
These two paragraphs will end the bad practice adopted by many LEAs of allocating statemented resources by bands or on a grid model which fettered their discretion and was unlawful. They also put back the specificity of individual statements which had been removed, but clearly not strongly enough for some people!
PART TWO - FROM SEPTEMBER 2002
Schools must not treat disabled pupils less favourably than non-disabled children in education, associated services and exclusions without justification
'Justification' will only be a permitted form of selection, or something 'not trivial' relating to an individual situation
Schools must make reasonable adjustments to accommodate disabled pupils
LEAs must plan to increase environment access, curriculum access and access to information for disabled pupils. OFSTED will monitor this
The duties are anticipatory (apply even if they do not currently have disabled pupils)
Part Two of the Act is about applying the 1995 Disability Discrimination Act to the provision of service by all education providers. This was left out when this legislation was originally enacted because it was thought the current SEN legislation was adequate. This oversight has been shown, mainly by the Inclusion Movement, to be wrong.
The Act provides for remedy through the renamed SEN and Disability Tribunal (SENDIST), which will have an extended remit to hear disability discrimination cases, seek apologies and make enforcement orders.
Two draft Codes of Practice, one for schools and one for colleges
and universities, have been prepared by the Disability Rights Commission.
They are out for consultation until the end of October 2001 (You can get these
from the DRC on 08457 622 633). It is very important that education providers,
SEN and Disability organisations and interested parents read the relevant
Code and comment.
This all sounds very encouraging and it will certainly change the climate towards inclusion in schools and colleges. However it has to be remembered that the legislation was drawn up to compliment and not replace the existing SEN framework. Therefore the reasonable adjustments a school has to make do not include the provision of aids or appliances or other things that would be provided in Part III of the SEN Statement. Similarly the reasonable adjustments do not include building adaptations to create wider access. These are covered by the new planning duties and are not reasonable adjustments. The Code names a number of factors which can be taken into account when determining a reasonable adjustment. Clearly these have the potential to dampen the impact of the Act and only the Courts and Tribunals will determine what is reasonable. However two things are clear. The Primary Legislation was made to advance things from the current discriminatory status quo. Secondly Schools, LEA's and Colleges should operate from a good practice model as institutions committed to equal opportunities. This means reviewing all existing practices, policies and procedures for possible disability discrimination and this process should start now.
Overall, though a confusing jigsaw of codes, regulation and statute has now been floated into the world of disability, SEN and Inclusion, these provisions tilt the balance towards the development of real inclusion for many thousands of disabled pupils and many millions of non-disabled pupils. The challenge for our movement now is to develop the training, experience and organisations to change attitudes, practices and the ethos of all our schools and colleges.
Next Issue: details of provisions for Further and Higher Education.
By Ann-Marie Dobbs
Still clinging to my dreams of the social norm, that of the perfect Mothercare baby, I hung on every word the consultant uttered. Mum and Dad sat in the leather and smoked glass consulting room trying to figure out how the nice man in the Saville Row suit had, in his learned way changed (as if by some horrible magic) their little boy into a sharply defined collection of 'problems'. But wait, it was not all 'bad news', the consultant, our oracle told us "not to worry, he will be perfectly normal by the time he is twelve, perhaps a little clumsy but normal..." I shudder when I remember my chirpy response. "So no orange badge and no special school bus then?" Five years have passed and my 'collection of problems' is now my darling, fabulous imperfect boy. The orange badge I thank God for every day and I am proud of the disabled parking bay in front of my house that my jealous neighbours would happily lynch me for. As for the special school bus, that's another story.
My hopes of Alexander 'catching up' with his twin sister began to be replaced by sheer terror and panic. As I began trusting my instincts and started tossing out development charts, I realised that I was his best hope of getting a life. Eventually, hearing the word 'can't' nine hundred times a week just made me more determined and bloody-minded. Thankfully the bloody-minded bit is more subdued these days but back then, I needed it to at least keep my son in a mainstream nursery and then (under extreme duress) the excellent out of borough assessment nursery.
Through very pro-active involvement (constructive ranting) with the statementing process, I was able to secure full time one to one support and a limited amount of mainstream inclusion. However, the trade off was having to agree to provision in a school for children with severe learning difficulties. Well, I thought, maybe that wouldn't be so bad because he would have all of this fantastic input and support while he was at the 'special' school and time to enjoy being with his able bodied peers. Wrong. The reality was alarmingly different. Sure he had one to one support but the very sweet lady supporting him was really a welfare assistant - quite adept at wiping orifices and caring but unable (and unexpected) to teach him anything. It got worse. More disturbing stuff started to get my attention. Like the reports in the home school book about the 'lovely visit to the local shopping centre' and the local street market. When I made enquiries as to why my son was being taken out of school every Monday morning for endless visits to mundane places, I was told that shopping was their version of a science lesson. The cracks were beginning to appear. As for the teaching, there was none. In spite of repeated beseeching requests for him to at least have the chance to learn colours, numbers and the alphabet, my requests were rebutted by a firm "he is not ready yet." For heavens sake! By now Alexander was six years old and growing more bored by the minute. The annual review approached and I steeled myself for what I knew would be the fight of a lifetime - my son's.
I was as angry as hell that a group of people who hardly knew my son were in a position to make me throw away all of my child's hopes and dreams. I decided there was only one way that was going to happen and that would be over my dead body. I used my anger constructively (very hard at times) and spoke calmly and with reason to the decision-makers.
I began a campaign to get them to see him not as a disabled child but as just another kid that needs a little extra help. This was extremely important because in order to get them to see what was in my opinion reason, they had to relate to him as a human being and not just 'a case'.
The day of the review meeting dawned. Everyone who had ever had contact with Alexander during his last school year sat in the tatty, cramped school office. My husband and me sat waiting like two convicted felons awaiting sentence. I had pressured the head of special education until she agreed to sit in on the meeting. I felt this at least was an achievement because if nothing else, my gripes against the school would be heard first hand.
The review began with each therapist giving his or her reports. I challenged every one, particularly the Occupational Therapist whom I had never even heard of, never mind met until she introduced herself at the meeting. The uncomfortable truth was that due to lack of resources and organisation, my son was getting very little therapy at all.
Finally, when everyone had finished giving his or her views as to why (not how) Alexander's needs where being met, the head of education asked me what I thought would be best for him. My knee-jerk response was to say "I just want him to be taught, I want him to have the chance to learn but this is like asking for pizza in a Chinese restaurant!" Then my anger subsided, I took a deep breath and suddenly I became Oliver Twist, that little boy in rags asking for the unthinkable. "I want him to go to a mainstream school." My god! There, I had said it out loud and for all to hear.
But the worst was yet to come. The head of special education asked each of the experts in turn for their opinions of this audacious request. The jury returned its verdict. Without faltering or a single waver and without any ambiguity each and every one of the assembled participants said "No, he is not ready." "No, he would not survive in mainstream." No, his needs are best met where he is..." And so it went on, until they had all responded. Giving up was never an option and it was clear for all to see that my husband and I were extremely unhappy with the present arrangement and not about to take no for an answer.
Ultimately our resolve paid off, Alexander won. I applaud the head of education for allowing us the chance of finding a mainstream school that would at least try to give Alexander the opportunity of having a mainstream place. I also applaud all of the 'opposers' who are now our supporters and allies.
I will remember forever the first morning that we took him to his mainstream class and how we were so unexpectedly engulfed by a wave of normality. We departed from his classroom, leaving him to his fellow students who were excited about his presence and eager to share their bright cheerful environment with him. We were close to tears how hard his journey had been and how far we had to go, just for him to be so close, so included.
"From all the quarters of the education scene it comes,
this expression of children's longing to take upon themselves some of the
burden of deciding what should be learned, how it should be learned"
The Guardian newspaper recently ran a competition called 'The School I'd Like', asking young people to enter their ideas in the form of videos, papier-mâché models, poems, plays, dictated comments, architectural plans, photos and Braille essays. 15,000 young people from primary and secondary schools entered. The Children's Manifesto which resulted from the entries was a manifesto for inclusion.
"My ideal school will produce real people who respect and accommodate others.....they will have been treated fairly and celebrated as individuals. Because they will have been encouraged instead of restrained, they will develop into creative, assertive people who will work together with their individual talents to rebuild the earth"
Miriam Grossfeld, aged 15
"In my ideal school respect for people and the world around you would be taught before anything else"
Angela Gillen, aged 15
"There would be no grading, praise only for working hard, not for your mental capability....We would not be concerned about whether we did the best in the class, but only about whether everyone was happy with what he or she was doing and how he or she was progressing"
Joanna Brown, lower secondary
"Teachers and pupils would be equal. In my school the only thing they would ban would be unhappiness and pain, no room for lying, revenge and deceit"
Maise Monroe, aged 13
"My dream school would be a school which would let me explore the world and tell me human knowledge"
Gautier Deplanque, primary
"I would like a school with kind and quiet people and a teacher who would help me whenever I got stuck. And I'd like a school where I would not get bullied in the playground and in school. And all the teachers are nice and friendly."
Jessica Forest, aged 9
The Museum of the History of Education at the University of Leeds will keep 'The School I'd Like' archive, and everyone can continue to make contributions via their website: http://cfs.bretton.ac.uk/schoolilike.html
However, we feel that this manifesto has shown us that our dreams are shared
with the people who really matter, the young people of Great Britain.
It will become our manifesto.
The Children's Manifesto
As published in the Guardian Newspaper, Tuesday June 5th 2001
We, the schoolchildren of Britain, have been given a voice. This is what we say:
The school we'd like is:
A beautiful school with glass dome roofs to let in the light, uncluttered classrooms and brightly coloured walls.
A comfortable school with sofas and beanbags, cushions on the floors, tables that don't scrape our knees, blinds that keep out the sun, and quiet rooms where we can chill out.
A safe school with swipe cards for the school gate, anti-bully alarms, first aid classes, and someone to talk to about our problems.
A listening school with children on the governing body, class representatives and the chance to vote for the teachers.
A flexible school without rigid timetables or exams, without compulsory homework, without a one-size-fits-all curriculum, so we can follow our own interests and spend more time on what we enjoy.
A relevant school where we learn through experience, experiments and exploration, with trips to historic sites and teachers who have practical experience of what they teach.
A respectful school where we are not treated as empty vessels to be filled with information, where teachers treat us as individuals, where children and adults can talk freely to each other, and our opinion matters.
A school without walls so we can go outside to learn, with animals to look after and wild gardens to explore.
A school for everybody with boys and girls from all backgrounds and abilities, with no grading, so we don't compete against each other, but just do our best.
At the school we'd like, we'd have:
Enough pencils and books for each child.
Laptops so we could continue our work outside and at home.
Drinking water in every classroom, and fountains of soft drinks in the playground.
School uniforms of trainers, baseball caps and fleece tracksuits for boys and girls.
Clean toilets that lock, with paper and soap, and flushes not chains.
Fast-food school dinners and no dinner ladies.
Large lockers to store our things.
A swimming pool.
This is what we'd like. It is not an impossible dream.
People with learning difficulties are not yet well represented
amongst our network of trainers who go into schools to work with teachers.
As the majority of young people who are segregated are young people with learning
difficulties we decided to hold a targeted course for people with learning
"I was at special school for 15 years. When I left school I could not read or write until I went to night classes." Margaret Malley
"I was not asked what I wanted to learn or how I like to learn it' Cath Thompson
We set up a planning group which included advisors who have learning difficulties, where we redesigned our 'standard' course to make it more accessible. We created lots of new materials using pictures and photographs and we decided to have one trainer for each group of six participants as well as the main presenter.
"I learnt a lot about the history of disability and what we can do to change it"
"I found it interesting and I liked all of it. I found everything easy to work with and people have been very helpful. Everyone explained what you need to know"
We used lots of role-play and Paul Adeline taught us how to use forum theatre as a training tool. Using all this we taught the participants all the core principles of inclusion and could see that many people not only understood it, but were ready to move on to the next stage of being an apprentice on an actual DEE course, working alongside a more experienced trainer.
What struck us all was that the people on the course had all been forced to carry a huge burden of disrespect and even cruelty by so called 'normal' people. It was impossible to tell where the damage this created ended and any supposed intellectual impairments began.
"From the age of 5 years old I went to mainstream school. As I had learning difficulties they kept calling me mental and simple. Even the headmaster called me it as well. I was bullied. I was kicked and I was punched. Then when I was 7 years old I went to special school which was worse than mainstream school. They used to throw your cooking around the room. If you done anything wrong the headmaster used to cane you for the least little thing. We were scared to fight for Our Rights. In the mainstream we had exams, but in special we did not. How can we get good jobs without a degree?" Rosalie Mossup
"Having my say was what I liked best as some people don't want to hear me'
"It gets your feelings out better than work. Going back to the history of where we come from helps us moving on and to see what's still happening"
"The course changed my life as it made me look at things about me"
All the participants modelled dignity, enthusiasm and determination to put right a great wrong. It was a wonderful challenge to all of us who took part.
A biggish room (for those who know: the Centre for Inclusion
in Vauxhall to be precise) full of enthusiastic people. Nothing extraordinary,
maybe. To me it was!
It is a while since I have been in a room full of people and have been part of a training and felt that inspired, filled with hope and re-fuelled with courage.
Here was a group of people with the label "learning difficulties" for some reason attached to them wanting to find out about being co-trainers on DEE courses. Here was as well a group of DEE trainers and me as the only PI parent... of a child with learning difficulties - that label again.
Given welcome, time and attentive ears participants began to tell their stories about
their education and their lives. And that is when it became extraordinary for me.
The stories people told, told of the power of professionals in the medical model mould to ruin someone's life chances.
And? You have heard this all before?
I have too. And yet listening to each one re fuelled my outrage at the injustices and my determination not to collude with the medical model thinking about disabled people. And this room was brimming with ideas, enthusiasm, with hope and determination, creativity and good will. You should have seen the role plays, the forum theatre (my absolute favourite!), the wall we built (each brick one barrier) and the social model solution wall bangers. Huge barriers may have been put into people's lives and have stopped them to be able to play their part fully. But their fighting spirits are alive. And those inspired me.
Then, when people started to speak up about their work within their own organisations, I saw everybody as role model for my son. Knowing that all these people really exist fills me with hope. Thank you.
"I liked learning from others, breaking down barriers. This course would have helped my life more if I had known it earlier. Everyone helped and supported each other"
(or why it's a good idea to make your home accessible)
By Chris O'Mahony
In April 1998, I travelled to the US with two close friends. I am hearing impaired and, although I identify as disabled, have no mobility impairments and had therefore never had to seriously consider the effects of being a wheelchair user. When we got to the States we had to stay in a hotel because that was the only place that was accessible for my friends' wheelchairs. This was, obviously, much more expensive and less personal that staying in someone's home, but later on it was lovely for us to be able to go to a colleague's house because she had had a ramp built to it and they could actually enter her home. I was impressed with this and started to think about the fact that neither of these friends had ever been able to come to my home.
I arrived back determined to do something about this state of affairs and to build a ramp to my house. Believe me, this was not a simple matter of erecting a wooden construction. I live in a basement flat. My front garden was topped with 6 inches of concrete and four feet higher than we needed it to be. We started taking up the concrete and digging in September 1998. We had absolutely no idea of what we were taking on.
We found that local people were fascinated with the project. A gang of obviously inexperienced workers, including men, women and young people, digging up my garden, spilling out onto the pavement and having fun together attracted a lot of attention and discussion about what we were doing and why. People were interested in the idea that we were building a ramp, not because anyone who lived in the house was a wheelchair user, but because we have friends that use wheelchairs and want to have them in our home. The idea seemed to inspire lots of people who said things like, "Oh come and build one for me when you've finished!" or "I'm going to see if I can do that with my house."
The work progressed slowly. We fixed days for people to come together with a skip and just dig out the shape. We had many encounters with good working class men whilst working on the project. The first one was a builder who was working on the house separately. He came to me and said that he would like to make a contribution to the ramp because he believed in equal opportunities. He gave us the equivalent of one month's rent from one of his lodgers. Next, the man in the hire shop where we got our tools asked me what we were using them for and when I told him, took £100 off the price. Then we had wonderful dealings with the Gas Company. When we came across the gas pipes we had no idea what to do or how much it would cost to move them. We contacted the gas board who sent a man round. We explained to him what we were doing and he said "My
boss is a good bloke, I'll talk to him about it." The result was that we had the gas pipes moved for free.
For eighteen months the front of my house was a disaster area. My upstairs neighbours were polite but tight-lipped about the mess we made and about the fact that they had to jump down from their step in order to get out of the house. We had lots of discouragement as well. Many people told us that what we were doing was impossible.
The project gave me lots of opportunities to talk to people about what we were doing, what I believe in, about disability rights and about Inclusion. Chatting to people at work and socially about what I was doing to my house led to lots of discussion about creating miracles. I enjoyed telling people about how I had spent the weekend digging with a gang and about the help we were getting from unexpected places. It was a good contradiction to people's cynicism about how 'it's everyone for themselves these days' and was also useful to counteract feelings that any real inclusion of disabled people is an impossible fantasy. Many people would say things like - "I think it's a good idea to build ramps but it's just too expensive, or just too difficult to change my house". Showing them that it was possible in my house (and this was a seriously challenging ramp to build) made them realise that it was not impossible anywhere if people are prepared to prioritise the work and believe in their own ability to accomplish it. I used the story several times to illustrate how willing people are to help if they are just shown the way and how much they really do want to include disabled people but are confused about how to.
The ramp was finally finished in March 2000. My friend came to try it out. I have to admit we were biting our nails about this - would she be able to get into the flat? Would she be able to manoeuvre once inside? Yes! She was delighted with the ramp - she rode up and down it several times for the sheer joy of it and commented that it wasn't just a ramp - it was pretty! All the wheelchair users who've been here have been thrilled. Other friends are considering how to make their homes wheelchair accessible - two have already done so and another is planning it as I write. Wheelchair users and allies are waking up to the fact that it is not unreasonable for them to expect to have access to their friends' homes on the same basis as everyone else. Spending time in each other's homes is one of the basic ways we find out about each other and develop lasting relationships. It is just not the same if we always have to meet in a neutral accessible space or if the wheelchair user never gets to see anyone's home but their own.
I've recently had two tricky inside doors widened and a disused shower room removed to create more space. The flat is still not completely accessible but at least it can be used by wheelchair users. I will never again agree to live somewhere where I can't have all my friends come to visit.
By Richard Rieser
Once again, the BBC newscasters have taken to spitting out words such as 'the country will be crippled again as guards have voted by 4:1 for 2 one-day strikes over safety.'
As someone who was in my childhood often described as a "cripple", I wince whenever I hear the word used. My impairment arose from the after effects of the polio virus which killed some nerve cells in my left leg, right arm, back and chest leading to a lack of muscles. This led to my asymmetry and means I have limited use of the parts affected. Indeed I am still occasionally confronted by people who call me a 'cripple' when they wish to hurt me or make themselves feel better because of their own insecurities. A powerful word used in anger: an offensive word.
F D Roosevelt, the only person ever elected four times President of the USA, had an impairment in both legs, deriving from polio, which prevented him walking unassisted. He managed to collude with the paparazzi of the day not to take photos of him using his wheelchair or crutches. He was successful - something unthinkable these days. The Library of Congress has over 5000 photos of Roosevelt, only two show him as he actually was. Roosevelt said, "The American people will never vote for a Cripple as President." So he disguised his impairment by sitting down or perfecting a way of walking, holding onto an aide. Interestingly, one of the last Acts of President Clinton in January 2001 was to unveil a statue of Roosevelt in Washington. Prior to its being made, there was a big argument in Congress about whether Roosevelt should be shown as he wanted to be seen or as he was. Reality won and a very powerful President is shown using his wheelchair 57 years after his death.
I was interested to find the derivation of the word 'cripple.' It comes from the Middle German word 'Kripple' which means 'to be without power.' As a Disabled Person, part of the Disabled People's Movement and the Inclusion Movement, I do not feel without power. We continue to struggle to use our power to change our lives. Roosevelt was certainly powerful, giving jobs and hopes to millions with the "New Deal" and bringing America into World War Two. The train guards are powerful, if a strike can stop the rail network.
Roosevelt, as I was in my youth, was a prisoner of the thinking of his time. We internalised the oppression of disabled people. The thinking of the Disability Movement gave us the Social Model of Disability and a way to liberation, a way of making sense of our experience. For years we had been summed up as our impairment which was seen as our disability, something which needed treating or curing. But what if our impairment was not treatable? It was just how we were. What if the main problems we faced were the lack of access, prejudicial attitudes and the world being organised in a way that excluded us? Such thinking led to the Social Model and a particular use of language.
"Impairment is the loss or limitation of physical, mental or sensory function on a long-term or permanent basis."
"Disablement is the loss or limitation of opportunities to take part in the ordinary life of the community on an equal level with others due to physical and social barriers."
(Disabled People's International 1981)
We have called ourselves the Disabled People's Movement which brings together all those labelled by their impairment and the resulting oppression, i.e., receiving less favourable attitudes, access, employment, education and life chances. Those with very different impairments are all disabled people - people with learning difficulty, people with mental distress, blind and partially-sighted people, deaf and partially-hearing people, those with physical impairments, with hidden impairments, cancer survivors and those with Aids / HIV are all disabled by society, not by their impairment. This is not to say that for some of us our impairments are painful and that we might die sooner rather than later. They are, and we may, but these things do not lead to our exclusion.
If you accept this thinking, you can no longer talk of 'people with disabilities.' We are Disabled people united by a common oppression engaged in a struggle for change. We need non-disabled parents, professionals and others to be our allies in this struggle, and allies in empowering young disabled people.
Many argue this emphasis on language is just 'political correctness.' Those who espouse this want to be free to damage others by their prejudices, whether racist, sexist, disablist or homophobic. Using such language feeds a 'them and us' culture, where it is fine to joke at other's expense, to bully, to harass, and once those on the receiving end are reduced to derogatory labels, to be violent towards them. When the film, 'The Hunchback of Notre Dame' came out, the Scoliosis Society found more than a hundred reports of harassment of people with scoliosis being attacked, and the name 'hunchback' being shouted as an insult even by young children. Prior to this, the word had become rarely used.
We are not the labels you have given us and should never be known by our impairment. Equally we are not another favourite of the media - 'the disabled' - but we are Disabled People and we are fighting for our rights.
Book Reviews by Lois Keith
Two children's books I'd strongly recommend are Blabbermouth (1992) and it's sequel Sticky Beak (1993) by Australian writer, Morris Gleitzman, both published by Macmillan. They are written in the first person with Rowena (Ro) at the centre of the story and are brilliant examples of how books dealing with impairment and disability can be honest without being tragic. Rowena is a survivor. She was born without the ability to speak; she can hear and she can communicate but her vocal cords do not work. Although such a condition is rare, (presumably it does exist, but it is certainly not common) it has the advantage of being full of metaphorical possibilities. She has a big personality and a lot to say - hence the ironic title Blabbermouth. Ro's 'problem' is not her inability to speak, although this can present enormous inconveniences for her and she doesn't hate herself for it. She is a whole person, not one struggling to have the 'self within' shine through in order to overcome the deficits of the body without. She wants metaphorically and literally to be heard; she wants her dad to be less embarrassing and most of all, she wants a real, true friend.
The book opens with Rowena's first day in her new school. When the class bully calls her horrible names, she stuffs a frog in his mouth and binds it with tape, her way of rendering him silent. She had previously attended a 'special' school which the government closed down and where her best friend Erin died a year earlier; a sadness which re-visits her when she is feeling lonely or insecure. Although she has some good memories of these times, being 'sent back to special school' is an anxiety which runs through both stories.
Like many an earlier character in children's fiction, Rowena is a half orphan. She has a father but her mother died when she was very young. However, unlike her Victorian equivalent, Rowena's father is far from absent. He is a loving, devoted and sometimes excruciatingly embarrassing parent who wears lurid satin shirts and sings loudly and off key. She communicates with him by sign language and with most other people by writing. Using sign language has a number of advantages. It means, for example that Rowena and her dad can speak over the noise of the tractor on his newly acquired, weevil infested apple farm.
Gleitzman takes one or two conventions from novels about disabled children and turns them inside out. The 'project' is an example of this. In her first week in school, Rowena is delighted to find a great friend in Amanda Cosgrove and is thrilled when Amanda invites her home to tea. That is, until she hears the dreaded words, 'Community Service Project'. When Amanda announces that she thought Rowena could be 'her project' she feels terrible.
In the end Amanda and Ro overcome their problems. In a wonderful parody of the benefits of charity work and using Amanda as her interpreter, she explains to an astonished audience, 'I've got problems making word sounds.... Perhaps you've got problems making a living, or a sponge cake, or number twos'.
And then, 'You can feel sympathy for me if you want, and I can feel sympathy for you if I want. And I do feel sympathy for any of you who haven't got a true friend.'
These books are essentially about communication, 'talking' and learning to listen to other people. Rowena survives her own quite public mistakes, her father's uninhibited behaviour, his marriage to her primary school teacher and her complicated feelings about the prospect of their new baby. The ending satisfyingly combines sentimentality and pride. Confident in the love of her dad and her new mum, the new-born baby, a much longed for sibling (named Erin after her friend who died) lets out a howl that rattles the windows and holding her proudly, Rowena announces: 'This is my baby sister and there's nothing wrong with either of us'.
These books, like others by the same author are short, well paced and very funny. Read aloud to children from 8 upwards. Ideal perhaps for independent readers aged 10-13 or older.
This review is extracted from the last chapter of Lois Keith's book: Take Up Thy Bed and Walk; Death, Disability and Cure in Classic Fiction for Girls. The Women's Press, 2001.