DISABILITY TRIBUNE
The international disability and human rights network
December 2003 / January 2004
In this edition...
* Seasons Greetings
* Editorial
* IDDP 2003 Message
* News
* EYDP 2003 - a personal account
* Disabled and Proud
* Disabled Young People Speak Up
* Good News
* Bad News
* Stop Press
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"Everyone at DAA would like to thank you for your support this year.
We also wish you Seasons Greetings and very Best Wishes for a happy and peaceful 2004
The Struggle for our Rights and Humanity Continues...."
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Editorial
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Welcome to December 2003 / January 2004 edition of the Disability Tribune.
Where has 2003 gone?
It seems only 5 minutes ago that I took over the editorship of the Tribune but in fact it was this time last year!
In that time we have had the European Year of Disabled People (see the EYDP article later on), its aim the recognition and celebration of disabled peoples right to participate as equal citizens. The fact is, such an aim is impossible to achieve until there is a commitment from the member states of Europe, to the removal the barriers that currently exclude us.
2003 hasn't been the best of years with regard the protection of our right to life. Globally there is a growing pressure from the medical profession to end our lives prematurely both through policies in hospitals and through legal judgements. Luckily some countries have attempted to make a stand against diminishing valuations of our right to life [see Stop Press at the end of this edition].
Progress towards a UN Convention protecting our rights and dignity feels like it's moving forward but slowly. Discussions on the draft text will take place in New York in January next year and it is hoped that this will give grassroots DPOs an opportunity to feed their views into the process through the representatives appointed to the Working Group - watch this space!
The "Mainstreaming Disability in Development" conference, partly organised by DAA, has by all accounts been a great success. I ran a workshop on the cost-effectiveness of including disabled people in development, which was a first for me. It was a great opportunity to meet face-to-face some of the people I have exchanged emails and letters with. Sharing experiences, both good and bad, with activists from different regions of the world confirmed my belief in our ability, as disabled people to make change happen. It's that shared experience that should give us the energy to continue the global struggle for the recognition of our humanity.
As you know DAA continues to face an uncertain future financially although we are working hard to find the money to keep going. I'm delighted that we have received a good response from you to our evaluation forms and your comments about the importance of our work and your support for us to keep on getting information to you is overwhelming [see the February edition of the Tribune].
Much of DAA's is only as good as the information we receive from you, our readers. I hope that in 2004 you continue to write, fax, telephone or email to us, with your stories of working together - your challenges and successes.
As for me I will be away in Mexico for January (Yippee!) on holiday (although I have tried to persuade DAA's Director that my trip is work-related - she isn't convinced) and I hope to visit the Projimo project whilst I'm there.
I wish you a very happy festive season and see you in 2004.
In Solidarity,
Tara Flood
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IDDP 2003 Message
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An International Day of Disabled Persons Message from Bertrand Ramcharan, the Acting High Commissioner for Human Rights
The International Day of Disabled Persons takes place this year at a time when we are also marking the tenth anniversary of the Declaration and Programme of Action adopted by the World Conference on Human Rights in Vienna.
The World Conference on Human Rights reaffirmed the universality of all human rights and fundamental freedoms, and the right of 'persons with disabilities' to the equal effective enjoyment of these legal guarantees in a way that is respectful and accommodating of their differences. The World Conference on Human Rights also stated that 'persons with disabilities' should be guaranteed equal opportunity through the elimination of all those barriers which exclude or restrict their full participation in society.
Last week, the General Assembly endorsed the decision of the Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities to establish a Working Group to prepare a draft text for a convention. The General Assembly also decided that the Ad Hoc Committee shall start the negotiations on the proposed new convention at its third session, in 2004.
The Office of the High Commissioner for Human Rights supports the adoption of a new convention, which could provide an additional tool to strengthen the promotion and protection of the human rights of 'persons with disabilities'. It would enhance the visibility of disability issues within the human rights system and would allow for tailoring the implementation of general human rights norms and standards to the particular situation and needs of 'persons with disabilities'.
The International Day of Disabled Persons should refocus our attention on the rights and dignity of 'persons with disabilities'. It should prompt us to collective and individual efforts to ensure the full respect for and increasing enjoyment of their rights. Our Office stands ready to assist the Ad Hoc Committee and its Working Group. We welcome the valuable contribution offered by national human rights institutions and civil society organisations to this process, and encourage their continuing active and meaningful participation in discussions on the proposed new treaty.
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News
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Hungarian Mental Health Interest Forum taking action
The ongoing human rights monitoring made by the Hungarian Mental Health Interest Forum (PEF) in psychiatric facilities, as well as complaints arriving from patients have confirmed that still in several rehab and social care facilities illegal "disciplinary councils" are in operation.
Selected (by the management and chief psychiatrist) patients sentence those peers who, in their view, breach the house rules of the institutions. The sanctions vary from fine to forced labour and the obligation to wear special clothes. They may also forbid the person under punishment to communicate with relatives and friends or meet visitors.
For the very first time in Hungary, a patient, with the assistance of PEF's legal service, filed a case to challenge this inhuman and degrading practice. The court ruled that the hospital in question cancel the operation of the disciplinary council.
PEF has provided training events for real advocacy forums in long term facilities. PEF is willing to continue this activity, nevertheless, in order to stop this inhuman practice. More lawsuits and communication to international human rights bodies, including the European Committee for the Prevention of Torture are also in process.
Gabor Gombos, Mental Health Interest Forum
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Woman, in the UK, wins legal challenge to late abortion of disabled fetuses
Joanna Jepson has won the first round in her legal battle to stop doctors performing late abortions of disabled babies. The way is now clear for a legal challenge on a decision by the West Mercia Police force, not to prosecute doctors who performed a late-stage abortion on a foetus which had been diagnosed as having a cleft lip and palate.
The judges in the case said that it raised important issues of public concern that needed to be argued at a full hearing. Lawyers said the challenge could lead to a reform of abortion legislation if Ms Jepson succeeded in showing that the Abortion Act 1967 was incompatible with the Human Rights Act 2000.
As DAA has previously reported (Disability Tribune December 2002/January 2003), Ms Jepson, brought her action after discovering that a mother had been granted an abortion beyond the 24-week legal limit for legal terminations. Doctors took the view that a cleft palate could be a "serious handicap".
Ms Jepson, who herself went through restorative surgery after she was born with a bilateral cleft palate, said after the ruling that the police failure to prosecute in the case "betrays the true value of this baby's life". In the UK's Abortion Act, 1967, doctors are currently allowed to terminate beyond 24 weeks if there is a serious risk to the mother or the foetus is going to be born with a "serious or life-threatening handicap". However it seems that this definition is continually being re-defined to include, in some cases, foetuses where doctors only suspect an impairment. It is hoped that this challenge will put an end to negative assumptions being made about the value of disabled babies' lives and their right to be born.
[Source: The Independent 02/12/03]
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EYDP 2003 - A personal account
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The European Year of Disabled People - Did it really change anything?
When the UK Disability Forum for European Affairs (UKDFfEA) decided to bid for the position of Campaign Bus Co-ordinator it felt like a challenge I couldn't resist. At the time I had no concept of the affect it would have on my own life.
With hindsight, it was naÔve of me to think it would be easy. Here I was Chair of the UKDFfEA already well versed in the European disability movement but at heart a "real" grassroots disabled woman. Whilst I never felt co-ordinating a bus around the UK would radically change things for disabled people, I never realised the challenges that lay ahead.
We were starting from a position that many disabled people in the UK saw as a waste of time. My philosophy was "Its here lets make the best of it". The lead up to its arrival was not an easy path. As Vice Chair of the National Co-ordinating Committee it gave me an opening into the corridors of power.
Whenever I went into government departments there wasn't a disabled person to be seen. If I had ever wanted any proof of who makes the decisions about disabled peoples lives it was all here to see.
One of my main administrative problems was that I was the only co-ordinator in Europe with a 24 hour x7 days a week (full-time) independent living package to organise. Trying to organise five Personal Assistants (PA's) on a rota to be at the right place at the right time was like an army manoeuvre. The fact that they all turned up at the right place on time is not only due to my organisational skills but the flexibility of my PAs.
Every effort was made to encourage DPOs to bid for the Campaign Bus to visit their EYDP2003 event, but not many did. Therefore it is disheartening, for me, to read in their publications that the bus didn't change things - you have to be part of things to change them.
Looking back at the video I made of the bus's journey, I can definitely say I gave it my best shot. It was a privilege to meet many of the disabled people who attended or organised events. Assisting people to write in the book of testimonials about their lives was often heart breaking. But when you ask the general public "What do you know about the European Year of Disabled People?" their expression is one of polite indifference. Did it change anything for disabled people in UK? Only one of them - and that was me. It made me appreciate what I have and it made me realise even more what a long way we have to go before we FREE OUR PEOPLE!
Anne Pridmore, Campaign Bus Co-ordinator for the UK (in a personal capacity)
[DAA would support Anne's view that much more work needs to be done to support real social change in Europe as the article later in this edition clearly highlights - ed]
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Disabled and Proud
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The early feedback from the "Mainstreaming Disability in Development" conference, held in the UK, last month, has been very positive. A full report will be available in the new year but here is a taster.
The conference was organised by International Service, DAA and Action on Disability and Development. The overall aim of the event was to encourage governments, NGOs, funders and decision-making bodies to include disabled people in their development agendas.
The first day of the conference was hosted by HAFAD, a DPO based in London. This was a great opportunity for delegates to talk and work together in workshops.
Themes for the workshops included: the cost-effectiveness of including disabled people, the importance of legislation, policy change and human rights instruments, building better relationships between DPOs and NGOs, and also influencing funders to include disability as part of their funding criteria.
The second day was more formal and started with some rousing speeches from Sebenzile Matsibula, the Director of the Office on the Status of Disabled People in South Africa, Alexander Phiri from SAFOD (Southern Africa Federation of Disabled People), also our great ally in the European Parliament, Richard Howitt MEP. Other speakers included Vittoria Beria from the UN Dept of Social Development who spoke about the real commitment from the UN to raise the profile of disability and to ensuring the voice of disabled people is central to discussions about our lives. There was disappointment when, due to a technology failure, Judy Heumann from the World Bank was unable to speak to the conference live from the United States.
After the speeches there was an opportunity for delegates to quiz the panel of speakers which lead to some interesting discussions.
Delegates used the last session of the conference to work on a closing declaration which sets out clearly the demands, for the future, from disabled people of development agencies, NGOs and national governments [see below].
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Disabled and Proud Declaration
Over 100 delegates from 20 countries met for workshops and key-note speeches at a two-day conference on Mainstreaming Disability into the development agenda.
Delegates with day to day experience of struggling for disabled people's rights at the grassroots felt very strongly that the present invisibility of disability in development was degrading and unjust, furthered exclusion and violated disabled people's human rights.
The majority of countries are working to develop a specific UN Convention on the rights of disabled people. There is already a duty to include disability rights contained within other UN human rights instruments and encouraging progress is being made to mainstream disability in development through the UN's department of Economic and Social Affairs, the EU and some other agencies as well as the progress made by the African, Arabic, and Asia/Pacific decades of disabled people. However, Millennium Development Goals can only be achieved if disabled people are recognised as being among the poorest of the poor and if development, from birth onwards and at all levels is based on human rights.
Young disabled people are expecting a world in which they can take their rightful place as proud and participating citizens. They want that world today: tomorrow is too late.
The delegates recognised that change will only happen if the voice of disabled people is loud, strong and united. Governments, policy makers, funders and all those involved in the development process must recognise the importance and value of that voice, resource it and support disabled people's organisations to advocate at all levels of the political and development process.
Key Conclusions:
1. Governments are the guarantors of disabled people's rights not benevolent organisations. They have a duty to resource and implement that responsibility.
2. The representative voice of disabled people must guide all development policies, programmes and monitoring mechanisms.
3. Governments must raise the priority of disability rights on their agendas;
4. Countries cannot afford to keep between 10 to 20% of their populations off their economic, social, cultural and political agendas.
5. All development funding criteria including plans for infrastructure, must include disabled people.
A society fit for disabled people is the only society fit for all.
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Young Disabled People Speak Up
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Rights into Action 2003
The 1st International congress of Young Disabled People
From the 30th of June til the 5th of July the congress 'Rights into Action' took place at the University of Wales in Swansea, UK. The goal of the congress was to set up a manifesto in order to insure equal participation in today's society for young disabled people all over the world. Not only for today's Young Disabled People, but also for the Young Disabled People of tomorrow.
95 Young Disabled People aged between 14-24 gathered in Swansea, Wales. To get to this event, people had traveled miles, 35 countries were represented, ranging from the Netherlands to Nepal to Afghanistan.
Many of us had never flown before, let alone set foot on campus grounds. Never before had we met so many people with disabilities from so many countries and the best bit was we found we were all striving for the same goals.