DAA / Disability Tribune Feb - Mar 2005 / V2

DISABILITY TRIBUNE The international disability and human rights network

February / March 2005

In this edition...

* Tsunami 2004 - the Challenges for Disabled Survivors

* Editorial

* Don’t Forget ..

* News

* The Way Ahead for Disability

* DAA Briefing Paper - DAA - 14 Years of Action

* Events and Opportunities

* The Last Word

* Don’t Forget …

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Asia Tsunami 2004:

The Challenges of Disabled Survivors

On December 26th, 2004, 14 countries felt direct effects from an earthquake that took place far below the surface of the Indian Ocean. The resulting tsunamis which came ashore have killed, injured and displaced hundreds of thousands of people in these countries.

There were many disabled people killed but many have survived this catastrophe and are gathering forces to bring about positive change out of such appalling circumstances.

Agencies such as the World Bank Disability and Development Team, led by Judy Huemann, are gathering information from the international network of disabled people’s organisations to measure the impact of the Tsunami on disabled people’s lives, the response of relief agencies to meeting the needs of disabled victims of the disaster and NGOs and to audit the reconstruction plans being put in place by governments to rebuild devastated communities. Reports so far indicate that most of the existing support networks have been decimated by the Tsunami - organisations, schools, homes completely washed away leaving survivors, made invisible by their ‘disabled’ status, to fend for themselves.

The Global response to the scenes of utter devastation caused by the Tsunami has been incredible but, governments and relief NGOs still have little awareness about the crisis needs of disabled people. Reports indicate that it is already the case that those disabled survivors who have made it to the refugee camps are missing out on basic assistance and increasing their vulnerability.

Those DPOs who have survived the Tsunami are calling on governments and NGOs to work with them to ensure that the enormous task of rebuilding entire communities, is done, taking into account the rights and needs of ALL citizens.

Without the involvement of DPOs there is a real danger that disabled people will be put at greater risk of long term dependence and isolation, when there is a huge opportunity to create lasting social change for the thousands of existing and newly disabled people.

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Editorial ______

Welcome to the final edition of the Disability Tribune.

Despite the sadness I feel writing this editorial, I hope you will agree that there has been many changes and achievements over the years and an awful lot to celebrate. The Disability Tribune, in all its forms, has been published for more than twelve years and reaches more people now than ever. And we know from your letters and emails that you still find the information useful in your own campaigns for social change.

Being the editor of this great newsletter, for the last two years, has been a real privilege. Your stories and articles have brought the international disabled people’s movement alive to me - there is no substitute for disabled people telling their own stories in their own way.

Many of the stories I have included have reflected the very worse examples of society’s behaviour towards us as disabled people. There have also been some fantastic examples of disabled individuals and organisations taking social action for themselves. There is no greater power than truth and for me, it is these kinds of stories that keep reminding me of what it is that binds us together as a group of people - it isn’t our impairments or health conditions because we all experience these differently - what really binds us together and gives us ‘strength in unity’ is the common experience we share of being treated differently, of being excluded from our families and communities, from education and income generating opportunities and more importantly from human rights protections, that non- disabled people take for granted.

It is this feeling of solidarity that keeps my passion for social change alive and I know through contact with many of you that you feel the same.

As this is my last Editorial I would like to take the opportunity to thank Rachel Hurst for her unstinting support and encouragement during my time as Editor. And to you, our readers, who have been my inspiration.

As for me, I am very happy to report that I will be continuing in my role as Information and Publications Co-ordinator for one day a week and will be responsible for the email briefings we have planned for after March 2005. I will also continue to be DAA’s Web ‘mistress’ so I will be relying on you and your organisations for news items, events and information to build DAA’s website into an interactive resource for the global disabled people’s movement.

Remember - DAA isn’t coming to an end, it is just changing the way it gets information to you.

In Solidarity

Tara Flood

Email: [email protected]

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News ____

Disabled activist wins top Human Rights award

Rachel Kacheje, a disabled woman from Malawi, was given the award by the Malawi Human Rights Commission in recognition of her work in the promotion and protection of disabled people’s rights both at home and internationally.

Rachel is well known within the international disabled people’s movement. She was the first woman chairperson of the Southern Africa Federation of the Disabled (SAFOD). She is also a member of the World Council of Disabled People’s International and a Commissioner for the National AIDS Commission.

Rachel was also instrumental in the formation of Disabled Women in Development (DIWODE) which works to ensure the inclusion of disabled women in human rights and development issues.

[very many congratulations to Rachel from everyone at DAA - ed]

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People in mental distress compared to ‘900lb gorillas’

‘Handle with Care’ is a US company that makes ‘humane’ restraints, is currently using an image of a gorilla to market a new line in full body physical restraints. The company’s owner, Bruce Chapman, defends the choice of image, by suggesting his vast knowledge on the subject of ‘physically restraining people in crisis’ has earned him a right to a sense of humour.

Sadly this kind of deeply insensitive advertising isn’t helping to dispel the enormous prejudice and misunderstanding disabled people with mental health issues already face on a daily basis.

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‘Better to be dead than disabled’ films receives top awards.

‘Million Dollar Baby’, a film directed by Clint Eastwood, has received an Oscar award for ‘Best Film’ at a recent awards ceremony. The film is not advertised as a story about assisted euthanasia (suicide) and in fact audiences who have seen the film, have been surprised by the final scenes which show the central character being given a lethal cocktails of drugs to end her life after an accident in the boxing ring resulted in her sustaining a spinal cord injury.

The second film on the same theme, ‘The Sea Inside’ won Best Foreign Film and is the story of a disabled man in Italy and his legal battle to have his life ended.

Disability rights activists in the US have been protesting about the deeply negative and inaccurate portrayals, in both films, of our lives as disabled people. A press conference and rally were organised outside the theatre in Los Angeles where the ceremony was held, to raise awareness of disabled peoples’ concerns about the underlying message that it is better to be dead than disabled.

"It's clear the Hollywood industry loves nothing more than a story about a disabled person begging to die and having a non-disabled 'friend' do it," says Stephen Drake, research analyst for Not Dead Yet. " ‘Million Dollar Baby’ and ‘The Sea Inside’ are two in a long line of films focussing on the ‘tragedy’ of our lives and it is no coincidence that such a film should be honoured by the industry at a time when governments seek to cut healthcare resources because of spiralling costs or the rapid growth in genetic sciences hell- bent on killing us off.

Why is it that film makers continue to make films reinforcing appalling stereotypes about disabled people? Is it because a film celebrating our contributions to the world would be to damaging to the current disablist status quo? Probably!

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The Way Ahead for Disability ______

The Way Ahead - UK Art Exhibition.

If you want to know what disability, barriers and bad attitudes feel like - ask disabled people. If you want to know what disabled people think should be done to change things - take a look at The Way Ahead.

The artist Caroline Cardus, who is a disabled person, supported other disabled people to speak out about their everyday experiences of access and integration. Using the familiar format of the UK’s Road signs, The Way Ahead presents these views in a bold, humourous and thought provoking way. The designs have been produced as authentic, life sized metal road signs.

The exhibition is timed to coincide with the final stage of the access to goods and services provision of the UK Disability Discrimination Act coming into force. Many people eagerly await the changes but feel there is still a long way to go.

Caroline enjoys making work that is bold regarding the disability experience. She says; ‘As the artist who conceived this project, I am proud to see it take on a life of its own. The people who took part produced a very diverse collection of signs. They speak frankly about abuse and discrimination, but also look forward - to personal relationships and integration. Together with them, this project is stronger than one voice alone could hope to be.’

‘My life experience as a disabled woman creates nuances, little ripples, that affect my whole perception and relationship with the rest of the world; of people, of the environment, of personal choices in everyday life, be it shopping, socialising, working or travel. Art is a perfect vehicle to explore these experiences.’ The exhibition will tour the UK in 2005. It aims to raise awareness of the barriers disabled people still face and offer a candid view of the real changes they would like to see.

The link is www.interactionmk.org.uk/d_2004.html to see information about the project, and www.interactionmk.org.uk/d_gallery.html to see the online gallery.

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DISABILITY AWARENESS IN ACTION - BRIEFING PAPER

DAA - 14 Years of Action

Our small seed of information creates a groundswell of local activity.

Reasons to celebrate ..

Because DAA is changing the way it works, we thought it would be a good opportunity to dedicate this last Briefing paper to a look back at some of DAA’s achievements over the past 14 years. We have often been so busy getting information out to you that we have not celebrated our successes, or the impact that our achievements have had on the global movement of social change for all disabled people across the world.

As the only international information network on disability and human rights, DAA has used this newsletter as the main focus of our work. The first edition of DAAís newsletter, then just known as DAA Newsletter, was published in September 1992. It was renamed Disability Tribune in November 1999.

From the beginning we have filled the newsletter with your stories and news as an encouragement for others to get involved in social actions. As a result the readership has now soared to more that 70,000 disabled people and their organisations in over 164 countries and is translated by you into 44 languages.

Disability Tribune has had some real successes over the years, including the Global Rights Campaign where we asked you to tell us about your lives. We were inundated with your stories and once gathered together they made for an extremely powerful document which we delivered personally to the UN Human Rights Commission on the 3rd December 2001. We are certain that this document influenced the decision to begin the elaboration process for a UN Convention protecting the rights and dignity of disabled people.

We have also brought you news stories that have stirred even the most marginalised disabled people into action - the case of disabled women in Bulgaria condemned to ‘slow death’ in institutions [November 2001], or the ‘mercy killing’ of Tracy Latimer by her father [February 2001], or the on-going campaign to fight for Terri Shiavo’s equal right to life.

Clearly our achievements have been and will continue to be important but, the work goes on. It must - until we can have an equal share in a free and just society.

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DAA - 14 Years of Action:

* The publication of 148 editions of DAAís newsletter, ‘Disability Tribune’ with up- to-date information on human rights abuses and anti-discrimination legislation, world events relating to disability, news and views of disabled individuals and their organisations. Some newsletters have had a special focus, such as disabled women, disabled children, prevention, education, access, employment and technical aids. And more recently a series of Briefing papers on issues such as ‘The Status of Disabled People’, ‘Bioethics and Disabled People’ and the proposed ‘UN Convention for Disabled Persons’.

* Seven Resource Kits - Using the Media, Consultation and Influence, Campaigns, Organisation-Building, Fund-Raising, Disabled Women, Civil Rights Law & Disabled People.

* The collection of eight volumes of letters, sent to DAA by disabled people from all over the world, giving a personal account of their experiences. The ‘Letters from Our Lives’ volumes were presented to the UN Secretary General at the General Assemblies in New York in 1992 and 1993, which after a decade of inaction, secured an International Day for Disabled Persons on 3rd December every year.

* In collaboration with an independent film company, three videos were made with disabled people in Africa. These were networked on UK and Canadian TV, and the videos, 'Letters from our Lives' about disabled women and 'Stop the World, We Want to Get On', have been disseminated throughout the developing world for public transmission.

* An Information Kit on the United Nations International Day of Disabled Persons, with its focus on human rights. This kit explains how to celebrate the Day and raise awareness at grassroots level. It has supported activity all over the world.

* DAA has produced an Information Kit on the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities - a short, simplified version of the Standard Rules (adopted by the UN General Assembly in 1993) which includes guidance on how disabled people can work for implementation in their own countries. * In 1995 UNESCO contracted DAA to provide a report on "ignorance, intolerance and prejudice and other obstacles to be overcome in order to integrate disabled people fully into social, national and international life". The report is based on empirical evidence from different regions of the world and attempts a global synthesis with workable recommendations for action. In the same year it was presented to the World Summit on Social Development.

* DAA has published a research document, 'We Have Become People' by Dr Richard Light, a disabled lawyer (and previously Tribune Editor), analysing the Americans with Disabilities Act and giving some comparisons with the UK's Disability Discrimination Act.

* The BBC World Service produced a series on disability rights, broadcast in February/March 1996 in ten eastern European countries. DAA wrote the English version of the accompanying booklet, which was translated into the relevant languages.

* The above experience, was repeated, with the BBC World Service in Africa. Our accompanying booklet was translated into French, Portuguese, Hausa and Swahili. A series of similar programmes were also produced for the Arabic Service.

* Human Rights Violations Exposure Document - to commemorate the 50th Anniversary of the Universal Declaration of Human Rights. DAA has collaborated with all the international disability NGOís to produce examples of violations of disabled people’s rights throughout the world.

* Working with Disabled Peoples' International European Region Human Rights Task Force, we set up a data-base on violations of disabled people from all over the world that have happened since 1990. To date over 2380 violations have been recorded, affecting over 2 1/4 million individuals. A report on our findings is published annually.

* We continue to respond to an increasing number of requests for information and advice, on a range of issues including the right to life and other bio-ethical concerns.

* DAA was also the administrator of a three year ‘Rights for Disabled Children’ (RDC) project. The RDC has published a report highlighting the worldwide situation of disabled children entitled ‘Its Our World Too!’, and four in-depth country studies. Lastly RDC has produced a final document called ‘What Works’ which is a set of guidelines for action in the promotion of disabled children’s rights After 14 years of raising awareness that disability is a human rights issue, DAA has achieved many changes, has made many friends across the world and has created a unique global network of information sharing.

Long may DAA continue !

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DAA’s Legacy for the future

My association with DAA spans many years as does my association with the person who supported the idea from the beginning.

You cannot speak about DAA without speaking about Rachel Hurst. I met Rachel for the first time at a DPI conference in the Bahamas. She was the person responsible for development and human rights and both her activism and that of her colleagues taught me a lot of things: that you cannot talk about human rights or democracy without including everybody; you cannot talk about human rights, poverty and the marginalisation of disabled people without including disabled women and the other under represented groups. Being born in a poor family, growing up disabled and black - I understood what that kind of exclusion meant and I related it to my situation in Zimbabwe under white rule.

During the Bahamas conference we discovered that almost none of the country delegations had disabled women as part of their delegations. Those disabled women present took a rebellious stand against the disabled men and said that they planned to set up their own organisation for the same reasons that disabled people protested against the Rl conference in 1980, which led to the formation of DPI. The withdrawal of disabled women from DPI could have spelt the end. DPI couldn’t exist without disabled women ñ who are the majority of the disabled population.

Rachel Hurst understood the need for organised and meaningful participation by ALL disabled people. When she raised the idea of setting up an international information network (DAA) we agreed that it would be a useful forum to expose the human right violations against disabled men and women.

So DAA started in 1992 and to this day there is no similar organisation anywhere else in the world. It is an organisation that is in touch with disabled people and their organisations in every country. Through DAA’s work disabled people have a better understanding of what we have in common with each other and how important it is that we unite with other disabled people to fight against oppression, marginalisation and discrimination. Together we can find the strength to fight against insensitive government policies - our societies that choose to ignore our valuable contribution. As Chair, I have committed myself to DAA and I hope that its work will not end. Out of DAA should come an ideology that will liberate ALL disabled people. It is ALL our challenge to continue DAA’s noble work, which has been done by women and men in the small office in London. I challenge everyone to continue talking and working together for change.

We challenge DPI and other organisations led by disabled people to continue exposing human rights violations against us and for disabled people to be brave enough to speak out about it.

Joshua Malinga,

Chair of DAA

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DAA’s Director on DAA and the future for DAA

Challenges, change and friendship

Dear Friends,

It is fourteen years since many of us from the international disability organisations started DAA. We did it because we knew how badly disabled people needed information: information on our rights and evidence on our status as human beings. Despite the Decade of Disabled People and the Standard Rules, we were very much the ‘Silent Emergency’ - everywhere in the world disabled people were isolated, suffering degrading and inhuman treatment, discrimination and the right to life itself.

Those fourteen years have seen remarkable changes - changes in the availability of information and in the strength of our voice and our actions.

The internet has made the world a much smaller place and disability rights information is readily and increasingly available on the web. Unfortunately most disabled individuals in the developing world do not have direct access to this information, but their organisations know the value of it and are working harder to make sure it is available to their members at the grass-roots.

DAA is very proud to have played a significant role in the spread of information over these years (see our list of achievements on pp 6 - 7). But we are even prouder of the marvellous way you have used the information on your rights to make a difference to your communities. We have always had the motto: A small seed of information, a groundswell of action. You have made it happen. And our Board of Management, chaired first by Henry Enns and then by Joshua Malinga, have provided us all with great support and wisdom and are totally committed to our future. I cannot thank them enough.

There is one person among all our committed staff who must not be forgotten in this last Tribune. Kate Light has been with DAA from the beginning and I am glad to say will continue with us to look after the finances. Many of you have met her when she travelled with me and know of her special qualities.

Personally, the most important thing for me over these years has been the friends we have made among our readers. It is sad that we will not manage to send the Tribune out any more directly to your homes, but we do hope that you will either receive our information by email or through your national organisations. Please make sure that they give it to you. And please keep in touch with us. Our new contact details are on the back of the Tribune. Our website address is the same http://www.daa.org.uk. We really want to hear from you and know what you are doing.

Keep up the struggle and keep in touch!

With very best wishes,

Rachel Hurst.

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Thanks and Farewell

After more than 10-years, the Disability Tribune goes to press for the last time and, like many others, I have mixed feelings about its demise. I know that DAA’s efforts to empower, provoke and inspire have been successful and that it is that very success that has removed the need for a publication like the Tribune. Nonetheless, with the last edition of the Disability Tribune, my fear is that we are a step closer to that neat, well-ordered and – let’s be honest - depressingly obedient world, where dissenting views simply cannot be expressed, for fear of lost funding or advertising.

Be that as it may, I would like to record my thanks to all of you who supported the Disability Tribune; there can be few publications that benefit from such a loyal and enthusiastic readership. You have consistently kept DAA informed of news, issues and events and, as importantly, you have shared your copy of each month’s Tribune and, in so many cases, translated, rewritten, copied and circulated it to your community.

I applaud each of you for your commitment, not just to the Disability Tribune, but also to the ideas and beliefs that lay at its foundation. I would also like to record the debt we owe to two people of vision and determination: Sir John Wilson and Rachel Hurst, without whom neither DAA, nor the Disability Tribune, would have existed. Their hard work and sheer bloody- mindedness have made DAA a force to be reckoned with.

Sir John passed away - with so much achieved but so much more to give - in 1999, after taking the lead in setting up - and maintaining - both DAA and Sightsavers.

As for Rachel Hurst, what can be said that has not either been said numerous times before, or dare not be said for fear of swift retribution?

There is little doubt that Rachel is not one of those people about whom others are indifferent; love or loathe her, there can be no denying her dedication to the disability movement, to DAA and to the Disability Tribune. She can - and should - take comfort from the fact that her fans are both numerous and loyal and that those who are less enthusiastic are invariably individuals who have put the interest of others over those of disabled people.

How many activists can hope to achieve the same affection and notoriety? Despite her advanced age, I know that Rachel will be postponing the move to sheltered accommodation for a good many years of continued campaigning at DAA; I wish her continued success.

Although DAA will carry on, there will be a far smaller staff. Without naming them individually, I would like to thank all the people who have given so much to work at DAA over the past 14 years. DAA never was, nor ever could be, ‘Rachel’s organisation’. DAA - and Rachel - were so influential because of the hard work, support, skill, encouragement and – let’s be frank - patience, of a loyal, usually invisible and always underpaid staff.

Here’s to the next chapter for the ‘last civil rights movement’!

Richard Light

Richard has a web site with news and information about human rights and the UN Convention at: http://www.un-convention.info

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I have been with DAA from the beginning and seen it through all its trials and tribulations (always caused by funding, or the lack of it), its metamorphosis from the Global Project in support of the UN Decade of Disabled People and through my marriage and having children.

I have stayed because I believe passionately in DAA’s objectives and have seen how effective we have been in the time we have been in existence. Although it is unfortunate that the Tribune will no longer be produced, DAA will go on fighting for the human rights of disabled people and providing information that will enable disabled people to fight for themselves.

Kate Light

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Events and Opportunities ______

Trekking in Nepal for Human Rights

In Nepal the needs of disabled people are often ignored both in the community and nationally. Society does not believe that disabled people have any worth. So as a demonstration of the potential of disabled people, DHRC is organising a fourteen-day trek to Throung Pass (Annapurna Region) for twelve disabled people. This expedition has three objectives - first to raise awareness of the potential of disabled people to participate in society; second to inform members of the communities that the trek passes through, about the Human Rights of disabled people and, lastly, to raise the self esteem of the disabled people who are participating in the trek. After preparation and training, the trek will take place from 22nd September to 6th October 2005.

At the end of the trek it is hoped that the attitude of society in Nepal will change and disabled people will be allowed to access their right to live as positive contributors to their country.

If you want to support the event or get involved please contact Uttam K. Deuja who is co-ordinating the event at: [email protected]

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Advocacy Training Free - online

"Making Your Case" is a free online learning programme, supported by the Minnesota Council on Developmental Disabilities in the US, aimed at disabled people to support the development of effective advocacy methods and skills, at the local and national level, to achieve inclusion and choice and control. There is no cost for this interactive, self-paced learning program. It takes about three hours to complete, and is available 24 hours per day, seven days a week.

By taking part in this free learning program, participants will be better able to: "tell their story" to policymakers; identify which policymakers would be most helpful in bringing about positive change; write effective letters and emails; and organize with others to address issues.

The program can be accessed any time by going to www.partnersinpolicymaking.com.

Or contact the Minnesota Council on Developmental Disabilities ([email protected])

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‘Our Rights - Our Future’

International Conference of World Federation of the Deaf

30 September - 1 October 2005, Helsinki, Finland

The conference has as its main theme, human rights and how deaf and disabled people can secure them and what are the benefits of human rights protections. The conference will also discuss the proposed UN Convention protecting the rights and dignity of disabled persons.

Confirmed speakers include: Hissa Al Thani, the UN Special Rapporteur on Disability, Theresia Degener and Markku Jokinen and Gerard Quinn.

For more details please visit the conference website: www.wfdhelsinki2005.org or Tel: +358 (0)94542190 or Fax: +358 (0)945421930

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The Last Word ______

We have given the last word about the Disability Tribune to Bokang Mleya. Bokang is a young disabled man from Zimbabwe, who has been writing to DAA since 1993. His first letter to DAA was included in the very first ‘Letters for Our Lives’

Dear Friends I would like to thank everyone at DAA through the widely read Disability Tribune. I started writing letters to you back in 1993. I like writing to you because you are an encouraging and supportive lot.

The Disability Tribune has always been very informative and made me and the whole world aware that disability is not inability. Also it has taught me about my rights and how to exercise them.

Since 1993, I have achieved many things - I am good at sport and computers. I have also held positions of responsibility - I have been a councillor at my school and have helped others to come to terms with who they are. I tell them that the sky is the limit !

In the past ten years things have been difficult here in Zimbabwe but things are getting better. I am studying for a professional qualification which is not easy however, with DAA’s support and encouragement I know I will make it.

Bokang

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Don’t Forget ______

* To let DAA know your email address, or an email address that you can access, so we are able to add you to the list for Briefings and Information bulletins after March 2005

* To KEEP IN TOUCH - see new contact details on the back page

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The Disability Tribune is published and circulated, monthly, by Disability Awareness in Action.

TO CONTACT DAA FROM THE 24th March 2005:

Postal address: DAA 46 The Parklands Hullavington Wiltshire SN14 6BL United Kingdom Telephone +44 (0) 1666 837 671

Facsimile +44 (0) 1666 837 671

WWW http://www.daa.org.uk

E-mail: [email protected] (general enquiries and information briefings)

[email protected] (DAA’s Director)

DAA is a collaborative project between Disabled Peoples' International, IMPACT, Inclusion International and the World Federation of the Deaf.

Registered Charity No. 1002155

DAA is funded through the generosity of ICCO, Comic Relief, F. and C. O. Human Rights Project Fund.

PLEASE NOTE

Readers are encouraged to copy and circulate contents of the Disability Tribune.

We would, however, ask that where DAA material is used, it is attributed to us.

email: [email protected]