The international disability and human rights network
December 2004 / January 2005
In this edition...
* Seasons Greetings and a Happy New Year
* Help Us celebrate 12 years of the Disability Tribune
* The World celebrates IDDP 2004
* DAA Briefing Paper - The Status of Disabled People
* Conference News
* …and finally
All Best Wishes for the New Year from Everyone at DAA.
Let’s do all that we can in 2005 to build a great and positive future for disabled people across the world where our lives are valued and our rights respected
Welcome to the December 2004 / January 2005 edition of the Disability Tribune.
This is the penultimate edition of the newsletter and as always it is packed with some good, lots of bad news and, hopefully, information and evidence you can use to support the lobbying and campaign work in your own country.
The Briefing Paper in this edition of the Tribune reviews the status of disabled people - what is our status, are our voices being listened to, are we being included in government policies and aid and development agency programmes? I am sure we are all certain about the answers to these questions but what we need to be clear about is what we can NOW do to change our current low status which makes us and our experiences of exclusion and discrimination invisible to the non disabled majority.
We are 600 million disabled people strong - our lives have value - we have important things to say about our experiences - we must do all that we can to have our voices heard.
Together we are a force to be reckoned with by getting involved in our local communities, by lobbying our governments and policy makers and by getting our issues on the global rights agenda.
Help us celebrate 12 years of the Disability Tribune
The next edition of the Disability Tribune will be the last and we want to make it a celebration edition.
DAA’s newsletter was first printed in September 1992 and for the last 12 years we have relied on you, our readers, and your networks for news, letters and information that has filled the newsletter’s pages ever since.
So we want your help to fill the February/March 2005 edition with your thoughts and feelings about the Tribune - has it been useful - if so how? Which stories or articles have you enjoyed? Which stories haven’t you enjoyed?
A full newsletter archive is now available on the DAA website so go and take a look. It is fascinating to see how the newsletter has changed over the years and it is great to see how the newsletter has mapped out the development of the international disabled people’s movement and global journey many disabled people have taken over the years to lobby for change.
Please email me (firstname.lastname@example.org ) or fax me (+44 20 78219539) as soon as you can so your comments can be included.
The World celebrates IDDP 2004
All over the world Disabled people and their allies have celebrated yet another International Day of Disabled Persons.
The theme of this year’s IDDP was "Nothing About Us Without Us", reflected the importance of disabled people to have a voice in their lives, equal opportunities to be meaningfully included in their communities, and chances to contribute to society.
"Today, as a result of a dramatic shift in perspective that has been taking place over the past two decades, persons with disabilities have started to be viewed as people who must enjoy the full spectrum of civil, political, social, cultural and economic rights," said United Nations Secretary-General Kofi Annan in a statement.
"No society can claim to be based on justice and equality without persons with disabilities taking decisions as full-fledged members," he added.
The 3rd December was first proclaimed International Day of Disabled Persons in 1992. Since then the more than 600 million people worldwide have celebrated the day in many different ways.
In Afghanistan, nearly 500 disability rights advocates were part of a procession in the capital city of Kabul, demanding that the government work to make sure they are included more in society.
In China, where one-third of the 30 million people who live below the poverty line are disabled, the government used the occasion to announce changes to its 1990 disability law. The changes will hopefully strengthen rights to education, employment, information access, and recreation.
India's President A.P.J. Abdul Kalam used 3rd December to announce that the government is working on a 'Speech Applet' to provide a website interface for blind Internet users. The program could be downloaded from the president's website, he said.
At the same time, critics noted that India has much to do to make its buildings, services and buildings more welcoming to disabled Indians.
In Kuala Lumpur, dozens of disabled Malaysians were expected to assemble at the Berjaya Times Square, as "Wheel Power" columnist Anthony Thanasayan described, "not only to declare their existence with unashamed pride but to also raise awareness about their plight and right to equal rights and opportunities."
Hundreds of disabled South Africans came together to spread the message that their unemployment rate is still too low, and to thank the government for hiring disabled people.
Ruth Dyson, New Zealand's Disability Issues Minister, announced that more people in her country have moved out of sheltered workshops and into jobs in the community.
In Islamabad, Pakistan's Prime Minister Shaukat Aziz renewed his government's "commitment and resolve" to "build our country as one of the most favorable and truly accessible, caring and integrated communities for the disabled."
Serbian officials noted that by the end of this year, their Parliament is expected to pass a Law Against Discrimination, a Book of Rules and Procedures on Financing of Organizations of the Disabled, as well as preparing a National Strategy for improvement of the status of people with disabilities.
In Singapore, which is celebrating its first Disability Awareness Week, an estimated 120 people celebrated on Thursday with a Parade.
[Source: Inclusion Daily Express 3/12/04]
Disabled Cuban freed from prison but remains under house arrest
Juan Carlos Gonzalez, a disabled human rights activist, was jailed last year after receiving a four year sentence, has now been allowed to serve the rest of his prison term under house arrest.
Mr Gonzalez who is a disabled man with a visual impairment told the Reuters news agency that the decision to let him serve the rest of his sentence at home was not a humanitarian gesture (as has been suggested) but, a political convenience. ‘It doesn’t look good to have a blind person behind bars’ he said.
The Cuban government have made no comment about the decision or about Mr Gonzalezís trial. Gonzalez along with nine other people were arrested two years ago when they tried to visit an independent journalist who had allegedly been beaten up by the police.
Supporters of Mr Gonzalez have said that he and the other defendants should never have been put on trial and that they were convicted on the basis of their political beliefs and non-violent activities.
[Source: BBC World News]
Disabled Albanians face a ban on marriage
Grave concerns have been expressed about recent draft amendments to the Albanian Family Code that would bar marriage to disabled people with certain mental and physical impairments.
As the law stands at present, "A person who suffers from a severe mental illness or lacks the mental capacity to understand the nature of marriage" may not marry. The proposed amendment defines more specifically the nature of the mental illness or impairment, which would be bars to marriage. In addition, it extends the ban on marriage to persons living with HIV/AIDS and to marriages where both potential spouses have congenital blood diseases.
A further proposed amendment states that, for a marriage to be registered with a civil registration office, the two potential spouses must present medical certificates confirming that they do not ‘suffer’ from any of the listed impairments.
Not only are these amendments severely discriminatory they also conflict with the Albanian Constitution, which guarantees everyone equality before the law and the right to marry and form a family.
The presence in one or both partners of any kind of impairment cannot be regarded as a valid reason to suspend their right to marry. Any restriction of the right to marry should only be imposed according to due process, including the right of the person concerned to be effectively represented, the right of judicial review and other legal safeguards against any form of abuse.
Human rights organisations are calling on the Albanian authorities to institute legal and other measures that prevent discrimination against disabled people and to enable them to make an informed choice with regard to marriage as well as to enjoy the other rights guaranteed by Albanian and international human rights law.
[Source: Amnesty International 11/11/04]
DISABILITY AWARENESS IN ACTION - BRIEFING PAPER
The Status of Disabled People
''As disabled people have equal rights, they also have equal obligations. It is their duty to take part in the building of society.'' (WPA/26)
What is our current status?
The International Year of ‘the Disabled’ in 1981 seems like a long time ago but, in those 23 years has the status of the 600 million disabled people improved? Are we a more visible force globally? Are our voices listened by Governments, Aid or Development agencies? The short answer is NO but, what we need to establish is WHY?
Disabled people are STILL known to be the poorest of the poor in every country. Many disabled people STILL lead isolated lives without adequate support. Disabled people are STILL often denied access to public places because of architectural barriers or discriminatory attitudes.
Most public transport is STILL inaccessible to disabled people.
98% of disabled children in developing countries STILL have no access to education. Even in richer countries, education for many disabled children is still segregated and inadequate.
Involuntary euthanasia for disabled people is becoming increasingly acceptable.
International development and aid programmes STILL do not adequately address the needs of disabled people or include them in community development ventures.
The democratic voice of disabled people is STILL rarely heard in the formulation of policies and programmes that directly affect us. Very few of the world's parliamentarians are disabled people.
This gives some indication of the current status of disabled people and the reality is that disability issues are still at the bottom of the list of priorities and often excluded from the list entirely. Changing this situation will not be easy. A new long-term vision of a new society is needed. A society where disabled people are valued as human beings first and foremost.
This Briefing paper looks at why the status of disabled people remains unacceptably low and the often unhelpful role played by governments, development and aid agencies, the media and ‘professionals’. Also it looks at what disabled people have done and are doing to effect change and what opportunities there STILL are for change.
The Role of Governments
Despite years of good lobbying work done disabled people and their organisations, governments have been slow to give equal recognition to their disabled citizens. The Standard Rules and other international human rights instruments have provided a useful framework for change but because they lack enforcement mechanisms, many governments have failed to address issues of entrenched discrimination and exclusion.
Anti-discrimination legislation does exist in many countries and has, to varying degrees been partially effective. But, with exception of countries such as Uganda and South Africa, disabled people are not seen as part of mainstream politics nor are we representing our disabled electorate in places of influence.
Only exceptionally do disability rights activists get appointed to positions of influence. Many governments are still resistant to talking to disabled people’s organisations and continue to seek ‘expert’ advice and knowledge from non-representative organisations.
The Role of Development and Aid agencies
Although these agencies now have a less colonial approach to development and aid and have a better understanding of how to use expertise in locally appropriate ways, as far as disability is concerned, it is usually the case that traditional habits die hard.
Disability projects are still in the main, paternalistic, medically based, non-inclusive and controlled by non-disabled people. In many cases agencies are still working with organisations that treat disabled people as passive receivers of charitable services, rather than working directly with, and being lead by disabled people. Very few agencies, despite Millennium Development Goal targets, include disabled people in their strategies for social change or develop programmes that provide sustainability and capacity building for DPOs.
The Role of the Media
In an age where information and communication technologies have increased access to the media on a global scale, it has, in effect, become one of our greatest barriers, but could have the potential to be one of our greatest allies.
Currently disabled people are either invisible from programming or we are portrayed as bitter and twisted victims hell bent on seeking revenge on an ‘uncaring’ society. We are often seen as subject matter for discussion and debate rather than expert participants.
However the media, in all its forms, is extremely powerful and has unlimited opportunities for getting a very different and more positive message of ‘rights and equality for all’ across to the non-disabled majority.
The Role of the ‘Professionals’
Professionals expert in ‘disability’ come in all guises - healthcare, social care, scientific or educational to name but a few. But, all have a similar role and all make similar assumptions about our lives.
The professionalisation of disability has become big business and it is one that takes a medicalised approach to those of us living with impairments and has as its goal to adjust or ‘normalise’ disabled people so, we become a more ‘acceptable’ part of society.
For a number of years now disabled people have had the social model of disability to explain our experience of exclusion and disenfranchisement. The social model identifies society as the disabling factor in our lives and it is a tool we can use to address the imbalance of power between disabled people and the increasing number of ‘disability’ professionals.
Disabled people influencing social change
Despite these barriers it has been disabled people and their organisations who have been at the forefront of social change which has been driven by social action. It is disabled people who fought and won the battle for an International Decade of Disabled Persons (1982-91), the IDDP focussing on rights rather than charity, the Standard Rules and more often than not, legislation aimed at ending the discrimination we face.
''The rights of disabled persons to participate in their societies can be achieved primarily through political and social action.'' (WPA/60)
The African Decade (2000-09), for example, is about social change, change in the way disabled people perceive themselves; change in what we should expect from governments, donors, countries, civil society and the corporate sector; change in the way we relate to each other. But it is change which can only happen with dialogue and sustained engagement. And disabled people must be in the forefront of that change.
The Arab Decade which began last year, is also an opportunity for disabled people, across the region, to influence governments to address their current lowly status. It is also an opportunity to secure government commitment to disabled people and to provide the necessary resources for change.
The current discussions around the elaboration of a disability specific UN Convention have reached an important and exciting stage because of the commitment and determination of disabled people’s organisations to see the process through to a positive conclusion. The process has been an important reaffirmation of the human rights of disabled people.
It has been a unique opportunity for building a common agreement on disability issues. It also puts before us a formidable challenge. It is an opportunity to seek a more targeted use of human rights instruments, in combination with development initiatives, can make a difference in disabled people’s lives, particularly of the almost half a billion disabled people who live in developing countries.
For the first time ever, NGOs ñ and specifically of disabled people’s organisations have been given a much higher status and sit as experts among UN Member States delegates and are working with them to prepare the draft Convention: our voices are being heard!
The Way Forward
The causes of the continued low status of disabled people, as discussed, lie deep in the social, economic, cultural and psychological roots of all cultures, dislike of or hostility to difference, belief that impairments derive from curses or punishments, guilt, fear, and the unwillingness to see difference as positive. The discrimination and exclusion experienced by the 600 million disabled people cross the globe has existed in every community throughout history. But it is not inevitable. There are opportunities to bring about social change.
* There is growing international recognition, as proved by the current discussions around the elaboration of a disability specific UN Convention, that we are subjects of rights and that governments have explicit and detailed obligations to protect, promote and fulfil those rights.
* The demand by disabled people for recognition that, whilst an individual has an impairment, it is the social, cultural and physical environment in which she or he lives which is disabling, is gradually gaining acceptance. Changes to society not the individual are needed - the Social Model of Disability as opposed to a medicalised approach
* Finally, disability is slowly being recognised as a human rights issue. Disabled people are not victims to be protected, or inferior beings to be shut away and avoided, but are people with equal rights, equal responsibilities and an equal contribution to make to society.
These opportunities must be grasped NOW in order to effect real change. The challenge is to establish sustainable political and legal frameworks, backed up by practical social action which demand and achieve equal rights and equal opportunities for all disabled people. And that it is disabled people ourselves who have the expertise, knowledge and commitment to demand that our current lowly status becomes a thing of the past - we must be up there in governments in political and influential spheres, promoting our rights.
Never again will we be the ‘silent emergency’.
Disabled people are the ‘canaries’ of human rights
Twenty two people, the majority of whom were disabled, have recently spent five intense days together discussing and debating the human rights issues facing the 600 million disabled people across the world. Issues covered included - bioethics, violence and abuse, disabled children, armed conflict and development.
All agreed that the human rights of disabled people were a parallel to the function of the caged canaries taken into the mines to test the level of danger to others.
The seminar delegates produced the following statement:
‘The Kensington Statement’
Issued by participants in the British Council Seminar: ‘Disability & Human Rights’
The international seminar on Disability and Human Rights
(Kensington, UK, 28/11 - 3/12 2004):
Considering that human rights are inherent rights to be enjoyed by all human beings of the global village - men, women and children, as well as by any group of society, disadvantaged or not - and not ‘gifts’ to be withdrawn, withheld or granted at anyone’s whim or will;
Calls on the United Nations Ad Hoc Committee on a Comprehensive and Integral International Convention to Promote and Protect The Rights and Dignity of Persons with Disabilities to expeditiously elaborate an international convention that finally and conclusively guarantees the equal enjoyment of all human rights and fundamental freedoms for persons with disabilities.
Kensington, London, 2 December 2004
‘Included in Society’ - for some perhaps?
The ‘Included in Society’ Declaration drafted at a recent conference in Belgium was sadly another missed opportunity for a strong and useable lobbying tool. The conference itself was used to launch a report on the results of a European research initiative on de-institutionalisation of disabled people.
On initial reading the report makes some good and strong recommendations about the need for community-based alternatives to institutions, however on further reading it only actually calls for the end to ‘large’ as opposed to all institutions. I spent some time trying to find someone who could define ‘large’ and was shocked to learn that ‘large’ can, in some cases, apply to institutions with 5,000 residents or more. So in actual fact this report is only recommending the closure of a small percentage of institutions. Little if anything was said about independent living initiatives.
The Declaration was the cause of much discussion at the end of the conference and despite my efforts to amend ‘large’ to ‘all’ institutions closures, it was very clear that many of the other delegates had a very different agenda to my call for a ‘right to independent living and advocacy for all disabled people’. Many of the delegates were interested ‘stakeholders’ such as parents, organisations for disabled people or service providers. As a result the final Declaration was a watered-down call for some change.
Sadly, once again, it was a conference where disabled people’s lives were being discussed with very few of us there to defend our right to have our voices heard.
Stephen Hawking to lead anti-war protest in UK
Stephen Hawking, Britain's most eminent scientist and a disabled man, has become the latest prominent opponent of the war in Iraq, after he agreed to take the lead role in a ceremonial protest to coincide with the recent United States presidential election.
Peace protesters gathered in a central London square where they read out the names of 5,000 Iraqi men, women and children known to have died in the conflict.
The full death toll for civilians is now thought to be somewhere in the region of 100,000.
[Source: The Independent 31/1004]
World AIDS Day - Calls for better HIV/AIDS strategies
40 million people in the world are now living with HIV/AIDS - 90% of them are living in developing countries. In Europe the numbers of people living with HIV/AIDS has doubled since 1995.
In a speech on World Aids Day, the President of the European Parliament described the disproportionate increases in infections among women and girls as ‘the feminisation of the pandemic’.
The EU are calling for more resources for research and education programmes and the need to ensure developing countries has access to appropriate medicines.
Better co-ordination between governments, the UN and NGOs to develop better strategies, if the Millennium Development Goal on poverty and health are to be achieved.
Web-based Information Resource launched in Africa
It is a cliche but ‘Knowledge is Power’ and for disabled people this is particularly the case. We are often excluded from crucial sources of information because information providers fail to ensure that they provide materials in accessible formats.
The National Accessibility Portal (NAP) has been launched in South Africa and it aims to enhance the development and independence of disabled people. A portal (for those of you like me who don’t know), is an internet site that links to other sources of information through a network of efficient communication and data sharing systems.
The system will be fully interactive and accessible to disabled people. The NAP encompasses one of the key goals of the African Decade of Disabled Persons which is to empower disabled people across the African continent.
The driving force behind the NAP has been an Executive team which includes representatives from the Office on the Status of Disabled Persons, Deaf Federation of South Africa, the South Africa National Council for the Blind and other stakeholders.
It is hoped that as part of the project there will be a programme of IT training, skills and job creation launched across Africa by July 2005 and across developing countries by December 2008.
The NAP has the potential to open up a world of opportunities, through the provision of accessible and relevant information, to thousands possibly millions of disabled people. Let us hope there is the political will to ensure that it is a project that is both sustainable and implemented effectively.
[Source: INfama June 04]
Dutch protocol drawn up to kill disabled babies
Doctors at the Groningen hospital in the Netherlands have called for a nationwide protocol to legalise the euthanasia of disabled babies who they consider to be ‘so ill and suffering so severely that they have no prospect of a future’.
Supporters of such a protocol say that all over the world doctors are already ending the lives of disabled newborn babies discretely and out of compassion, without any kind of regulation. But disability rights groups consider this move to be further down the slippery slope towards involuntary euthanasia of anyone JUST because they are a disabled person. There is no doubt that such a policy based on pre-conceived assumptions about our lives as disabled people, will do nothing but devalue our lives further and confirm in the minds of non-disabled people that it is better to be dead than disabled.
It is likely that the protocol will create a list of impairments that make a disabled baby eligible for euthanasia. It is suggested this list will include newborn babies with spina bifida and hydrocephalus, limb impairments and ‘severe’ learning difficulties.
The Groningen Protocol, as it is known, has five criteria which includes suffering, prospects of a future, parental consent or no possibility of a cure or alleviation with medication or surgery.
When euthanasia was legalised in 2002, supporters were very clear that it would only apply to those individuals who could give full consent. Now two years later this decision is about to be overturned. The same is true for Belgium where they are already planning to broadened out the eligibility criteria.
We are no longer on the slippery slope - we are teetering on the edge of a very steep cliff!
High Court in India rejects euthanasia request
K. Venhatesh, a 25 year old disabled man from Andhra Pradesh has had his request to have his life ended, so he can sell his organs for donation, rejected by the High Court. Judges have ruled against the request under the 1995 Organ Transplantation Act because of the fears of encouraging the growing market in the harvesting of human organs for payment.
Venhatesh’s request has raised a number of ethical issues not only about the legalisation of euthanasia but, it also raises some disturbing questions about the treatment of disabled people in India, the value of their lives and the lack of support from families and communities and the Indian Government. "If mercy killing is allowed it can have far reaching consequences," says P. Sudhakar Reddy, president, Society for Equal Opportunities for Persons with Disabilities (Se'DOP).
Disabled people and their organisations fear that the ‘mercy killing’ of disabled people could become an acceptable way to increase availability of human organs for the transplant market.
Some doubt has also been cast over Venhatesh’s real reasons for asking to be euthanased because, during an interview with a local newspapers, Venhatesh’s mother told the reporter that she and his family could no longer pay for his medical care.
The case is now going to the Supreme Court.
[Source: The Times of India 15/12/04]
…. and finally
Disabled dolphin jumping again with world's first artificial fin
The 34-year-old dolphin called Fuji held at Japan's largest aquarium in the southern island of Okinawa wears the rubber fin for about 20 minutes a†day allowing her to jump and to swim along with the other dolphins.
Fuji had to have most of her tail amputated two years ago, after a mysterious disease which almost killed her. After the operation staff at the Aquarium noticed that her physical mobility fell sharply and she got†tired easily.
Weeks after the surgery, a veterinarian at the aquarium asked his† friend who worked at a local tyre makers, for help. After a number of attempts and trial runs with different fins, success came in August this year when the latest prototype gave Fuji enough pulpulsion to jump out of the water.
The latest fin is kept in one piece by bolts and despite Fujiís initial reluctance to use the fin she is now perfectly fine with it.
This is a new venture for the tyre company, Bridgestone but it may not be the last !
[a good news story to end 2004 - at long last - ed]
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