DISABILITY TRIBUNE
The international disability and human rights network
April /May 2004
In this edition...
* European Human Rights Victory for Disabled People
* Editorial
* DAA Website News
* News
* DAA Briefing Paper - Definitions of Disability
* News
* DAA Evaluation Feedback
* Events
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European Human Rights Victory for Disabled People
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At a time when there seems to be very little good news to report, the recent decision handed down by the European Court of Human Rights in relation to the David Glass case, is something for all disabled people to celebrate.
The ECHR decided that David Glass’s right to his physical and moral integrity had been breached by the doctors who acted against the wishes of David’s family to provide David with life saving treatment. This feels like a real boost to our continued struggle towards society’s recognition of our humanity.
The David Glass case is one that we have reported on before [see Disability Tribune August 2000]. David is a young disabled man with significant physical and learning impairments, from the UK, who with the support of his mother, Carol, and the rest of his family, has battled for his life to be respected and to be treated with equity and dignity by the medical profession.
David’s case dates back to 1998 when during a number of hospital visits, David’s family were told that David was dying and treatment would be inappropriate. However despite these claims, David survived. On one visit, David’s family were told that the best treatment for David’s chest infection would be ‘morphine and TLC’ (Tender Loving Care) ], which would ‘help him on his way’. David survived again.
On another visit to the hospital, a short time later, doctors insisted on treating David with diamorphine to ‘relieve his distress’. This decision was taken against his family’s wishes and on this occasion a DNR notice was placed on David’s notes without the family knowledge or consent.
Carol Glass complained to the General Medical Council (GMC) which then ruled in favour of the doctors.
David and his family have shown the most amazing strength and courage over the last six years and their efforts to see justice done have been well rewarded.
Of course, the inevitable backlash has begun with scaremongering in the UK media about how this decision will put additional financial pressure on already creaking health services and may force doctors to treat those of us whose lives are ‘allegedly’ unworthy of living!
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Editorial
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Welcome to a combined April and May edition of the Disability Tribune.
I’ll begin by telling you that I have some Good News and some Bad News! The Bad News is that for the next year we can only afford to produce six editions of the Tribune so from this edition on, the Disability Tribune will be produced on a bi-monthly basis. This wasn’t an easy decision because I know many of you find the newsletter invaluable in your work. [I also enjoy writing it]
However there is Good News! In each edition of this and the next five newsletters we will be including a ‘pull-out and use’ Briefing Paper on six different issues. The first, which you will see on pages 4 to 9, addresses the thorny issue of ‘Definitions of Disability’ and is an attempt to explain the Who What Why and How of the many definitions that exist and why it is crucial that we use a definition that we, as disabled people, are happy with rather than one which is forced upon us by the various agencies obsessed by our impairments or our economic value or indeed the measurement of burden placed on the world by the fact that we exist in the first place.
Issues to be covered in future editions will include: UN Convention (June/July) ,Disabled Children (August/September), Disability and Development (October/November), Bioethics (December/January). So if you want to contribute an article or even just some of your ideas or thoughts on any of these issues, or if you want to give me some feedback on other issues we should include please contact me.
Lastly Muchas Gracias and viaje feliz to Sandra and Carlos, our two fantastic volunteers from Columbia whose help with the website and the DAA mailing list, over the last few months, has been invaluable.
In Solidarity
Tara Flood
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DAA Website News
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We are delighted to announce that the Disability Tribune Archive (English version) is now on the website. So you can now access any story or article we have included in each of the newsletter since 1992!
All pages are text-based to ensure good accessibility for all. The website also has a much improved Links page and all but the last of the Rights for Disabled Children Project reports are now available online. We have added a number of Briefing Papers to the Issues page, additions include: Assisted Suicide/Euthanasia and Disability and Development.
So please visit the website and let us know what you think of it. Please also send us any relevant links and forthcoming events and any other information you think would be useful to be included on the site.
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News
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Disabled people take action against rape in Bangladesh
The Manikganj Disabled Peoples’ organisation on Development (DPOD) have recently taken to the streets to protest against the inaction of the local police in the case of a fifteen year old girl with learning disabilities who was raped.
Several hundred people marched through the streets of Manikganj town and hela rally outside the local press office. Protesters are calling for the arrest and prosecution of the perpetrator. Disabled leaders from DPOD and other NGOs spoke out against the authorities who have as yet failed to act after receiving reports that the man, who is alledged to have committed this heinous crime, is now threatening the young girl’s family and putting pressure on them to withdraw the case.
[Source: One for All Vol.4]
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Bush Installs Another Anti-ADA Judge
President Bush has installed Alabama Attorney General William Pryor on the U.S. Court of Appeals without Senate approval. It is the second time in five weeks that Bush has used a recess appointment to place a widely opposed, far-right candidate.
Recently Pryor urged the Supreme Court to hold that, under the Americans with Disabilities Act, state employees cannot sue for damages to protect their rights against discrimination.
[Source: jfw.org 22/2/04]
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Fury over disabled boy locked in a cage
A grandmother, in Perth Australia, is waging a fierce battle with the local Education Department after discovering her 12-year-old intellectually impaired grandson was repeatedly locked in an outdoor caged enclosure at school.
Sheila Simons recently won her fight to have the enclosure removed from the school but is still pushing for the principal and teacher involved to be dismissed, and a formal apology given by the department.
Ms Simons, who is Neil's guardian, said she was horrified when she first saw the enclosure. "It was a cage. When I saw it I just cried. Neil was absolutely hysterical," she said.
The enclosure - an area of grass the size of a small room surrounded by a 3.5m-high wire fence had been purpose-built for Neil. It had a wooden bench but no toilet or access to water.
School reports show Neil was initially put in the enclosure (described by the school as a ‘quiet garden’) almost every day - sometimes several times a day - for periods up to one hour and 20 minutes.
A representative from the Education Dept said Ms Simons was told about the ‘enclosure’ and gave her verbal consent before it was installed. But Ms Simons refutes this.
Despite calls for an end to the use of caged enclosures at the school, Leila Bothams, the District Director for Education, refused to make such a commitment. Ms Bothams confirmed that, in fact: "The facility allowed him (Neil) the opportunity to let off steam and calm down in a way in which he could retain his dignity.” [hmm - ed]
[Source: Bioethics elist 19/2/04]
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DISABILITY AWARENESS IN ACTION - BRIEFING PAPER
Definitions of Disability
‘How many disabled people are there in the world?’
‘Are you a Disabled person?’
‘Is it ‘disabled person’ or ‘person with disabilities’?’
These are some of the questions which are asked of disabled people every day of our lives. And there are almost as many answers as there are questions because people define us differently. Health and social care professionals, educationalists, international agencies, development NGOs and academics all seem obsessed with who we are, what we are, how many of us there are and how ‘terrible’ our lives must be!
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For disabled people the problem with most of the definitions of disability is that they were produced by non-disabled people for the purposes of producing statistics based on cost-effectiveness of service provision rather than an attempt to address the barriers to our inclusion and humanity.
For many of us, fitting into a particular definition criteria determines whether we are able to:
- demonstrate discrimination in a court of law or
- access educational opportunities,
- Employment or
- social support
No other marginalised group of people in society is expected to categorise themselves or be categorised by others to the same extent as disabled people.
For example women and people from black and ethnic communities are discriminated against across the world, because of society’s prejudice about their gender or their cultural background but neither group is expected to prove their femininity or ethnicity.
What we need to do is to work together in our local communities, and at the national and international level to change the way society thinks about and defines disabled people; that it is the way society is constructed that disables us not our impairments. Disabled people’s lives are made difficult by the de-humanising barriers to our inclusion not because we have impairments. This definition is known as the social model of disability.
This Briefing paper attempts to address the confusion around the various definitions and looks at:
- The ways disabled people are defined
- whether a definition of disability is important and whose definition should we use,
- what you and your organisations can do to promote and lobby for the use of a social model definition.
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What’s in a definition?
Some would say everything - and for disabled people our lives and life chances are determined by how we are defined. How disabled people are defined is often used as a means of control but also how we define ourselves has an impact on where we place ourselves in the world. Whether we allow ourselves to be viewed as ‘other’, separate, ultimately of less value or whether we recognise the perpetrators of our injustice and inhumanity as being society and the structures society creates to exclude disabled people. So let’s look at the differences between the traditionally accepted definitions of disability, which have for so long have prevented disabled people from gaining their rights: the World Health Organisation’s definition, disability definitions in legislation, and disabled peoples’ own definitions.
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Disabled People medicalised by Traditional definitions
Health definitions
Disabled people have been the subject of much research and debate within the health professions for many years now. The World Health Organisation has spent the last thirty years devising ways of defining us as a health problem. The International Classification of Impairment Disability and Handicap (ICIDH), first used in the early 1980s, was developed by non-disabled ‘experts’ and was a medically-based way of measuring who and what disabled people were. It was a way of compartmentalising disabled people on the basis of our impairments and what level of social and medical ‘burden’ we were on a country’s economy. The ICIDH was replaced in 2001 by the International Classification on Functioning Disability and Health (ICF) which, attempts to look at the impact of the environment, both physical and attitudinal, in disabling people living with impairments
We have become a profitable business for healthcare professionals and researchers. However it is a business that picks over our lives and our experiences and fails to change anything for the better. Our involvement is as research subjects rather than experts on our lives. Many of the big disability charities are so obsessed with the money to be made out of researching disabled people out of existence, that they have chosen to ignore the dangerous consequences of their work. We have been reduced to nasty and expensive health conditions by a healthcare industry that is determined to alienate us from the rest of the human race.
This process of de-humanising us has allowed for the rapid growth in the new biotechnologies. The new genetic sciences are sold to us as techniques to reduce our so-called ‘pain and suffering’ but, the reality is that it is more about killing off those members of society who are considered to be less than desirable - Genetics are the new Eugenics. The denial of the true nature of disability - that it is created by a society that devalues diversity, has allowed for grossly incorrect judgements made about the quality of disabled peoples’ lives which has only served to fuel the growing trend of restricting our rightful access to healthcare and even life itself.
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The most beautiful and enriching trait of human life is diversity - a diversity that can never be used to justify inequality. Repressing diversity will impoverish the human raceî [Dr Oscar Arias, President, Costa Rica]
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Legal definitions
As disabled people we continue to campaign for full and enforceable civil rights wherever we live in the world. We also know that the only way of achieving this goal is for those rights to be enshrined in law. And this is where our problem lies.
Many of us now live in countries where there is some kind of law protecting, in principle, disabled people’s rights, but very few choose to define ‘who disabled people are’ in anything other than medicalised terms. So in other words disabled people are defined in law by all the things we are not able to do because we have impairments rather than addressing the way in which we are discriminated against by having little or no access to:
- Information and Advocacy
- Education and Employment
- Systems of Justice
- Family life
- Protection of our Right to Life
All of these fundamental rights are taken for granted by non-disabled people.