Southampton Centre for Independent Living

On February 14, the Disability Rights Commission launched what will probably be its last major inititative before it is merged into the new Commission for Equality and Human Rights in October 2007.

The Disability Agenda sets out what the DRC consider to be the major public policy challenges that Britain is facing and the action required to meet them.  These include promoting a culture of human rights and equality, bringing an end to child poverty, increasing life chances through learning and skills, ending poverty and widening employment opportunity, increasing participation in public, civic and community life, developing a social care system fit for the future, tackling health inequality, meeting the future housing challenge and building stronger safer communities. 

All very worthy aims and remarkably similar to the 12 basic rights that SCIL adopted 20 years ago. Although at first glance, the agenda just looked like a bunch of worthy aims but with no substance, the DRC has drawn up a list of recommendations for each aim, which hopefully both central and local government as well as others will consider when drawing up their future strategic plans.

It is still unclear how much attention the new Commission for Equality and Human Rights will give to disability issues but hopefully the Disability Agenda will be adopted by the new Commission and others in an effort to effect change over the next 10 years.

Yesterday, The United Nations General Assembly adopted a landmark disability convention, the Convention on the Rights of Persons with Disabilities the first human rights treaty of the twenty-first century and one that United Nations Secretary-General Kofi Annan said represents the “dawn of a new era” for around 650 million Disabled People worldwide.

‘Today promises to be the dawn of a new era – an era in which Disabled People will no longer have to endure the discriminatory practices and attitudes that have been permitted to prevail for all too long. This Convention is a remarkable and forward-looking document,” Mr. Annan said in a speech read out by Deputy Secretary-General Mark Malloch Brown.

The convention sets out in detail the rights of disabled people. It covers civil and political rights, accessibility, participation and inclusion, education, health, employment and social protection.
The convention also recognises that attitudes need to change if disabled people are to achieve equality.  It will be open for signature and ratification on 30 March 2007, and will enter into force after it has been ratified by 20 countries. 

The convention recognises the social model’s definition of disability. It states that ‘disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others’. Despite this, the convention continually uses ‘people with disabilities’ rather than the term ‘Disabled People’  

The convention runs to fifty articles although article 19 may be of particular interest to blog readers as it is entitled ‘Living independently and being included in the community’. It says:

‘States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.’

Article 24 covers Education and emphasises that Disabled People should be able to ‘access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live.’, and that they ‘receive the support required, within the general education system, to facilitate their effective education;’

The convention as a whole makes interesting reading and of further interest will be how quickly countries ratify the convention and what effect it will have, around the world, to protect Disabled People’s human rights. 

A possible turning point occurred this week in terms of the fight for Disability Equality in the United Kingdom. It wasn’t a new piece of legislation, it wasn’t the launch of a new Commission, it was the fact that we became aware that two of the most powerful figures in the UK political arena have Disabled Children.

David Cameron, the leader of the Conservative Party, has a Disabled son who has cerebral palsy and epilepsy and this week it was revealed that Gordon Brown’s four month old son has cystic fibrosis. We are therefore in a possibly unique position where who ever is the next Prime Minister will have hopefully a greater understanding of Disabled People and the discrimination and barriers that are faced by Disabled people every day.

Now, I am not suggesting that David and Gordon will naturally support all the aims and objectives of the Disability Movement and our fight is far from won. For example David Cameron feels special schools should stay open as a way to preserve “parental choice”. However, hopefully now Disability issues will be seen as important and not seen just as a good opportunity for a nice photo shoot with a bunch of crips.

This is not about nepotism either. It is just human nature that if you have personal experience of something, that you are more likely to have an opinion, and less likely to let ill-informed advisers tell you that there’s no problem.

Whoever becomes the next Prime Minister, it will be interesting to see whether in five years, Gordon and David’s personal experiences with their children will have influenced their policy making regarding disability issues.

Thirty three years ago on November 5th 1973, I was born in Frimley Park Hospital. It was immediately obvious that I was disabled and my mother was advised on more than one occasion to leave me at the hospital and forget about me. As is very common, doctors told my mother a series of negative predictions about my future. Apparently, I would be blind, deaf, have epilepsy, never be able to talk or communicate. They even used the classic ‘he’ll be a cabbage’ line.

So why am I telling you all this? Last Sunday was my thirty third birthday and flicking through the papers I was horrified but unfortunately not that surprised to read that the Royal College of Obstetricians and Gynaecology is calling on the health profession to consider permitting the euthanasia of seriously disabled newborn babies. Apparently the college is arguing that “active euthanasia” should be considered for the overall good of families, to spare parents the emotional burden and financial hardship of bringing up the sickest babies.“A very disabled child can mean a disabled family,” the report says.

One contributor to the Sunday Times article, John Harris, a member of the government’s Human Genetics Commission and professor of bioethics at Manchester University argued “We can terminate for serious foetal abnormality up to term but cannot kill a newborn. What do people think has happened in the passage down the birth canal to make it okay to kill the foetus at one end of the birth canal but not at the other?”  The saying ‘two wrongs don’t make a right’ springs to mind. There seems to be very little appreciation amongst the medical profession that people with impairments can enjoy a good quality of life and contribute to the richness of the society in which we live.

The Nuffield Council of Bioethics are publishing their report ‘Critical care decisions in fetal and neonatal medicine: ethical issues’ on the 16th November and it will be interesting to see whether the opinions of Royal College of Obstetricians and Gynaecology are echoed in the report. Unfortunately I am unable to attend the launch of the report however as always I’ll keep you posted through the blog.

In 1973, I had a chance to prove the doctors wrong. In 2006, disabled babies may no longer be given that chance.

Following on from our series of articles on Inclusion, the government has just published its response to the Education and Skills Select Committee’s report into Special Educational Needs.

There was widespread media coverage when Baroness Warnock stated the policy of inclusion had left a ‘disastrous legacy’ which prompted many of us in the inclusion movement to worry that the government may be considering a review of its inclusion policy.

However in their response, the Government has restated its commitment to inclusion. The response states: ‘The Government shares the Committee’s view that inclusion is about the quality of a child’s experience and providing access to a high quality education which enables them to make progress in their learning and participate fully in the activities of their school and community…we want local authorities and schools to work together to build provision in mainstream schools so that over time a mainstream place is a viable option for all parents who wish their children to be taught in such a setting.’

Unfortunately the Government’s response does give a mixed message as it also states ‘ the Government sees a vital and continuing role for special schools as part of an inclusive education system,’

This response from the Government will do nothing to allay the fears of either the inclusion movement nor the ‘special schools’ lobby. This debate looks set to run and run.

There has been a lot of media interest this week in the case of Charlotte Wyatt. Charlotte Wyatt suffered serious brain, lung and kidney damage after she was born three months prematurely weighing 1lb in October 2003.Her parents were then forced into a long legal battle to force doctors to give her artificial ventilation.

Despite all expectations, Charlotte has survived various setbacks and is now well enough to leave hospital.Unfortunately, Charlotte’s parents have now separated and due to these circumstances, Social Services are looking for foster carers for Charlotte.

Obviously we do not all the details of the case, however the reaction of the media is worrying. In a BBC Radio 2 phone-in on Monday, I heard callers say that Charlotte should be given a lethal injection if the parents cannot look after her. Other callers mentioned financial resources and seemed to question how the parents dared to split up after they had fought to keep their daughter alive.

 It feels to me what is missing is any regard for Charlotte as an individual. Of course it is unfortunate her parents are not currently in a position to take her home, but how people can think that therefore Charlotte shouldn’t have been given a chance of life is beyond me. Are we going to start denying all children medical treatment unless they can prove their parents will stay happily married until they are 18?

 This should be a good news story as Charlotte is now well enough to leave hospital and doctors are now measuring Charlotte’s life expectancy in “months and years” rather than “weeks and months” but yet again her parents are being vilified for doing what most parents try to do; Protecting their children.  

In the third article on Inclusion, Berni Vincent, a Senior Direct Payments Support Worker at SCIL outlines her views on the ‘Special’ Education System.

 Inclusive Education is about Equality!  It should be about a level starting point and about children and young adults, regardless of their impairment, and the amount of support they need, social class or intellectual ability feeling valued enough to contribute and take their place in society as they grow into responsible adults. Equality in education invests in the belief that all children are precious and have a right to learn, and develop as free spirits.

So does the Special Education System provide equality?  My segregated education was from age 4 – 22. I frequently questioned why I could not be educated in the same school as my brother and sister, why I travelled to school in a ambulance, (after all I wasn’t ill?) when I could have gone to school with my brother and sister who only had to walk ten minutes down the road to school.

 I was bullied in my local community for going to a ‘Spastic School’ and as a consequence made a point of lying down on the seat of the school bus to avoid anyone from home seeing me.  My sister and her mates came to the rescue by supporting me on a visit to the bullies house to inform them that if they didn’t leave me alone we would be sending my brother and his mates around to deal with them!

So I left school wondering how I was ever going to manage life in the big bad world, I had no qualifications – but I could write a book about therapies of various kinds, I had learned that if I went to the school nurse complaining of a headache or backache, I could get out off ‘classroom work’ and have a lie down for as long as I wanted. I became a Brownie but was confused about why the club was only for kids at my school and was held on the school premises in the middle of the afternoon.

‘Normality’ came with a friend who like me was a bit of a rebel; together we smoked fags in the girl’s toilets, got drunk at her Mum’s birthday party and discussed our feelings about dealing with the outside world.    My segregated education experience was soon to come full circle with an offer of segregated special college when leaving school, followed by the promise of a place at a rehabilitation centre where I could be trained for work in a sheltered workshop.  I was sorted!Thankfully years later, through meeting other Disabled People who had also experienced the adversity of segregation and its lasting effects, I rebelled and began to fight back.  It’s for the thousands of Disabled People like me and future generations of Disabled People that we must continue to campaign for Inclusion in Education.  We need to focus on learning from schools where Inclusion is working.  It’s a very big challenge, and something that needs to be a long term strategy, but while society is pouring money into a Segregated Education System it will never happen.The education system needs to invest in a new approach that is non bureaucratic for children who need support in the class room and learn to celebrate achievement and learning at all levels.

We need to remember that education should have everything to do with equality of opportunity and nothing to do with being Special!     

In the second article of our series about inclusion, John Browning gives his personal view on inclusion. John is the Chair of Governors at a school for children with learning difficulties and works at SCIL as a Direct Payments Support Worker…..

 The debate about whether, or not, to include children with moderate learning difficulties (MLD) in Mainstream Schools is one that has exercised a wide variety of minds. From educational psychologists to parents, from teachers to people who work within the disability movement all have asked if is it better to include these pupils in  main stream education or in special education.

One of the reasons this has become such a hot debate is that people in favour of including these children in mainstream schools tend to add a rider to their view. They say that given the appropriate facilities and money to make it viable it would be the appropriate way to educate kids who are currently educated in Special Schools. However such a view could be used to support virtually any point of view. The status quo is what schools have to work with. If the debate is that more money should be made available to make inclusion viable then that is a different position. But until the necessary resources are made available, if ever, it is not an appropriate way to educate those pupils who after all have special, or as I would prefer to call them individual educational needs, I am totally opposed.

I would not wish to see kids with Autism, or one of the other impairments that cause learning difficulty, placed in schools that would cause them to feel different to the others kids with whom they were educated. From past experience it is almost certain that this would result in them being, at best outcast, or worse bullied. 

To seek to include children in mainstream schools with the system as it now would create enormous difficulties. It is almost certainly the case that both those with, and without learning difficulties would be disadvantaged by an attempt to educate them all together.

Those children educated in Special Schools benefit from a much lower staff pupil ratio than those in mainstream. Those teachers are specifically trained in providing the appropriate teaching methods to enable young people with learning impairments to achieve their potential in a more conducive environment. In addition all classes have trained learning support assistants.  

The truth is that the required level of funding to make inclusion viable is very unlikely ever to be provided, and without it inclusion is not a desirable proposition. Those who support including children with learning impairments in mainstream schools are unlikely ever to see that come about because it would not be a priority for any government.

So the answer to the question, “To include or not to include?” Is that until sufficient funds are made available, inclusion is not viable 

Over the next few weeks, we will be publishing a series of articles regarding the inclusion of Disabled Children within mainstream education. There will be a range of different opinions expressed and these articles will hopefully create debate and your comments on each article are very welcome.

Inclusion is yet again a very ‘hot’ topic. Not since the early 1980s has inclusion been so widely debated. When the BBC Politics Show visited SCIL in May, our Chief Executive, Ian Loynes, confirmed SCIL’s firm commitment to the belief that all Disabled children should be educated in a single mainstream education system along with their non-disabled peers.

The media furore around Baroness Warnock’s comments that the implementation of inclusion within education had left a ‘disastrous legacy’, coupled with Education and Skills Select Committee’s report into Special Educational Needs has once again opened up the debate and seen Inclusionists on the defensive.

The Alliance for Inclusive Education is looking for stories that can feature as part of their ‘We Know Inclusion Works’ campaign. They want to collect real stories of where inclusion has worked and stories that reflect the positive effect that inclusion has had on schools, family and the wider community. The Alliance will then present these stories to 10 Downing Street in October to ensure that the government receive a positive view of Inclusion as well as the negative view that the media seem to prefer. You can ring the Alliance on 0207 735 5277 or email them to find out more

We are very aware that the blog is currently very wordy so we are hoping to include more pictures, video and music in the near future so…….

While surfing around this bank holiday weekend, I came across this video and music montage which although rather sentimental, has a good message.

A Life Worth Living

Let us know what you think and if you come across anything that might be of interest to the blog, then please contact us.