On the 6th June, the Florida State Appeals Court ruled that Terri Schiavo's husband can now order the removal of a feeding tube that has been keeping Terri alive for more than a decade. Terri's family have vowed to continue the battle for justice for their daughter.
The 2nd District Court of Appeals agreed with Terri's husband that Terri has no chance of recovering and ordered a judge to schedule the tube removal. It was not immediately clear when that date might be set. Doctors have said that Schiavo is likely die within two weeks if her tube is removed.
As previously reported in the Tribune (November 2002), Terri Schiavo, who is being cared for in a hospice, is in a coma. Her husband continues to insist that his wife would never have wanted to be kept alive in her current state and has been trying to have the feeding tube removed since 1998. Terri's parents Bob and Mary Schindler have fought him because they believe she should be given the opportunity of rehabilitation to assist with her recovery.
The Schindlers' attorney, Pat Anderson, said that the family would be appealing against this latest ruling. They say that their daughter continues to respond to them during their visits and that their son-in-law is motivated by money and personal desire.
They say he would inherit what remains of a US$700,000 medical trust fund awarded to his wife in a 1992 malpractice lawsuit and wants to marry another woman, with whom he had a baby girl born in September last year.
Disabled people around the world, who have been watching and listening to this case as it has unfolded will be deeply saddened by this ruling. We can all only hope against hope that the appeal Terri's parents are planning to lodge will be successful. If the opposite happens, the implications will impact on our lives as disabled people forever.
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Welcome to the July edition of Disability Tribune.
This edition is a UN Convention and Nothing About Us - Without Us special. I have included articles supporting the convention also a speech from Mr Mantaka Khan, President of DPI Pakistan which, he made at a national meeting about the convention. I am also writing this at the beginning of the second week of the Ad Hoc meeting in New York where things seem to be more positive than last year. For those of you with access to the internet, the DPI website ( www.dpi.org ) is carrying daily reports of event, but for those of you without internet access, I hope to include a summary of events in next month's Tribune.
The front page article on the outcome of Terri Shiavo's fight for justice is yet another blow for her family and supporters and ultimately for disabled people. This appalling case highlights the value society puts on the lives of disabled people and demonstrates again, the real need for a convention that aims to protect our rights and dignity with our Right to Life at its very core.
We now have a new UN Special Rapporteur on Disability to replace Bengt Lindqvist. Sheikha Al-Thani is a non-disabled person and has already admitted she knows very little about disability! (see later). How can disabled people be expected to believe international agencies or in fact, our own governments, when they talk about their commitment to our inclusion and to ensuring that our voices are heard, and then make decisions that continue to demonstrate the opposite.
Currently in the UK, the Government has just issued a document on the future of 'special' schools which, suggests that segregated education (or special schools) should continue to be a part of British Society. Furthermore, calls from disabled people's organisations for a consultation meeting with 'special' school survivors has been met with comments that this would be too expensive. As a survivor of a residential 'special' school I can speak with some authority about the lifelong negative impact that segregated education has on a disabled person. Not just from an academic perspective but from the devastating effect it has on your self esteem, the relationship with family members, life choices and one's sense of belonging. Government policy makers must understand that current attempts at inclusion often fail because of their lack of understanding about what inclusion really means. Including disabled people, whether we are children or adults, means changing the structure of our daily environments, not forcing us to change so that we fit the structure as it is now - hopelessly disablist.
I remain, however, an optimist. I continue to wait for the day when we can fill the pages of The Tribune with articles about how society has finally woken up to the reality of our lives and that systematic exclusion of disabled people is no longer acceptable. I fear I have a long wait ahead of me!
Tara Flood
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The US Senate has recently approved a former Ohio Solicitor General for a seat on the U.S. Appeals Court despite protests from disabled persons who say Jeff Sutton worked to curtail their rights.
By a 52-41 vote, Sutton was approved for the 6th U.S. Circuit Court of Appeals in Cincinnati, which handles appeals from Ohio, Kentucky, Tennessee and Michigan.
The vote came after about 150 disabled activists crowded into a room at the U.S. Capitol and urged lawmakers to vote against Sutton.
Democratic senators have criticized Sutton for attempts to limit federal civil rights protections and to gut or weaken protections for state employees with disabilities and older workers.
Sutton, the Columbus, Ohio lawyer, argued successfully in a Supreme Court case in 2000 that Congress exceeded its authority by permitting state workers to sue their states under the Americans With Disabilities Act.
Sutton told the Senate Judiciary Committee at his January confirmation hearing that he would be fair as a judge and asked them not to hold his previous work as a lawyer against him.
[Source: www.jfa.org 29/04/03]
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The UN Secretary General Kofi Annan has appointed Sheikha Hessa Khalifa bin Ahmed Al-Thani as the new Special Rapporteur for Disability. Sheikha Al-Thani is a founding member of the National Committee for People with Special Needs in Qatar.
Sheihka Al-Thani has also been involved in the preparation of draft legislation on the rights of people with 'special needs' and is involved with numerous local and national organisations such as the Family Development Centre in Qatar and the Qatari Society for People with Special Needs.
What we don't yet know is what work she has done with grassroots organisations of disabled people or what her knowledge is of disability and human rights issues from an international or national perspective.
Sheikha Al-Thani replaces Bengt Lindqvist, a disabled man from Sweden, who was appointed as the first Special Rapporteur on Disability in 1994. She will be based within the Commission for Social Development.
DAA were extremely disappointed to learn that Sheikha Al-Thani is a non-disabled person particularly when the UN appeared to demonstrate its commitment to the equality of disabled people with their previous appointment. This certainly feels like a giant step backwards and a far cry from their commitment to "Nothing about Disabled People Without Disabled People" !!
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Variations among human beings mental, physical and sensory functions have existed since the beginning of time. Persons with 'functional limitations', to which we refer today, are persons with disabilities who are excluded, isolated and marginalised from mainstream society. Some of these conditions still exist today in many countries. The way in which society has been constructed is as if disabled people did not exist.
We need to collectively remove barriers on policies, environment and attitude for the full participation of persons with disability.
During the 1980s disabled people looked to the United Nations for leadership. The years 1983 to 1992 were declared "The Decade of Disabled Persons". This was a period when all member states of the United Nations implemented the World Programme of Action for Persons with a Disability. Some states took appropriate measures to improve the quality of life for disabled people while others did nothing.
The United Nations Decade has its failures and successes. The experience obtained during the decade inspired countries in Asia, the Pacific and Africa to hold a decade providing a local approach to the problems and to finding solutions.
The year 2003 has been designated the Year of Disabled People in Europe, and now I am calling on member states of CARICOM, their governments and organisations for disabled people to develop a plan to declare 2005 the Year of Disabled People.
There are 600 million disabled people across the globe, of which 82%, are living in developing countries.
The needs and interests of persons with disabilities are not adequately addressed, some live in deplorable conditions - lack adequate housing, water, education, the list of woes is endless. Most often our skills, knowledge and experience are dismissed or ignored.
Our human rights are systematically violated. It is the duty of CARICOM member states to establish a legal framework which would guarantee rights, such as civil, political, economic and cultural etc; of disabled people.
I am supporting the United Nations Convention on the Rights and Dignity of Persons of Disability, which is now in session
Laurie Greenidge
Chairman,
National Federation of and
for Disabled People,
Guyana
[Many thanks to Laurie for sending us this article which first appeared in the Guyana Kaiteur Newspaper - ed]
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[This speech is taken from the recent DPI Pakistan Convention meeting held in Lahore on 8th June]
Today it is a great day in DPI Pakistan history we all here from all parts of Pakistan representing Disabled People of this country. This is an extremely important gathering. We are the voice of those who never had such strong leadership in the past. We all, even local small NGO's, are equally important and I urge them to come forward for the cause of disabilities?
As per my experience I must point out that we can only achieve our objectives with faithful and united efforts for the cause of disability and I believe that serious efforts achieve the appropriate result. Unfortunately we are not united as we should be, if we refer to the DPI history in Pakistan. Unfortunately we cannot claim considerable achievement due to lack of coordination of members and irresponsible attitude. Every one is just looking for miracles which can never happen by this kind of association of members. Every one should be equally responsible to work hard for this task. Today we are quoting references of USA, Europe, Japan and other countries but in fact they got these facilities for disabled people through hard efforts and with faithful cooperation with each other?
My dear friends, we must continue to move forward with one voice and one Agenda then our honourable President and Prime Minister will definitely listen to us and will extend all possible favour without any hesitations. We all have sovereign right to get the appropriate privileges and necessary concession and favour from our Government being nationals of this country.
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Mr Mantaka Khan, President, DPI Pakistan
Those who attended the meeting also took the opportunity to put together a List of Demands:
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Doctors in the state of Victoria in Australia are carrying out illegal sterilisations of disabled girls and young women with intellectual impairments, according to the state's Public Advocate.
The advocate, Julian Gardner, has called for an overhaul of the approval system for sterilisations. "I have spoken to parents who have had operations done unlawfully and to doctors who say these operations go on," Mr Gardner told The Age. "This is a matter of grave concern, because fundamental human rights are at stake. Sterilisation is irreversible and therefore should only be done with proper safeguards. It is really important that the medical profession understands really clearly that non-therapeutic sterilisation without authorisation is illegal".
It was impossible to say how widespread the practice was in Victoria, Mr Gardner said. By law, parents and guardians must apply to the Family Court for permission for non-therapeutic sterilisation procedures to be performed on children.
Mr Gardner said parents should also be able to take sterilization applications to the Victorian Civil and Administrative Tribunal, as they already can for adult children. This would make doing the right thing simpler, less costly and less confronting.
A 2001 report commissioned by the Human Rights and Equal Opportunity Commission found that official data on the number of sterilisations carried out on intellectually disabled girls and young women was unreliable. While the anecdotal evidence by its very nature could not be quantified, the report said, there was good reason to believe that girls were still sterilised "in numbers which far exceed those... lawfully authorised". There might be a number of reasons, but there was little reason these days to believe that ignorance of the law among the medical profession was one of them.
The Family Court says fewer than six non-therapeutic sterilization applications are made to it nationally each year.
Non-therapeutic sterilisation should be done only if independently judged to be in the best interests of the disabled person, Mr Gardner said. "Otherwise, it is possible that the operation could occur for the convenience of the 'carers' without exploration of other medical options."
The commission's report said advocacy groups for disabled women had stressed the debate should not be reduced to an argument over numbers; the primary issue was human rights.
[Source: The Age, Australia, 16/06/03]
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On May 19th, a group of people with Down's Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time people with Down's Syndrome have made such a protest and is a major new step in the debate about genetics, eugenics and the rights of disabled people. As a result of the protest, the conference organisers allowed Anya Souza to speak from the platform. Ms Souza, who is a trustee of the Down Syndrome Association, told the doctors that she opposes Down's Syndrome screening and that people with Down's Syndrome are people, not medical problems. Her speech was warmly applauded by the conference delegates.
The protesters consisted of three people with Down's Syndrome, another disabled person with learning disabilities and their families and supporters. They had written to the conference organisers in advance and asked to speak, but were refused. It is unacceptable that doctors discuss better ways of preventing people with Down's Syndrome being born, whilst excluding their voices from the debate. This runs directly counter to one of the main demands of disabled people: 'Nothing about us without us'. The protesters expect that their action will persuade the conference organisers to ensure a full debate at next years conference with proper representation of disabled people with learning difficulties. This should be the start of a national debate on prenatal screening.
"I can't get rid of my Down's Syndrome," said Anya "but you can't get rid of my happiness. You can't get rid of the happiness I give others either. It's doctors like you that want to test pregnant women and stop people like me being born. Together with my family and friends I have fought to prevent my separation from normal society. I have fought for my rights. ..... I have the right to a job, to services when necessary, to a decent standard of living, to know about my medical problems, to speak my mind, to make choices about my friends, whether to have sex, and so on.
To do this you have to be independent when you grow up and not get separated from society... I may have Down's Syndrome, but I am a person first."
[Source: Human Genetics Alert 30/05/03]
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There are many disabled people throughout history who devoted their whole lives to their creation, as examples of perseverance and a striving spirit. Ludwig Van Beethoven, a genius of all times, still continued to create, even when he could hear no longer. But his genius over-passed his disability. His music has been enjoyed by millions of human beings.
Frida Khalo, a disabled woman, with polio, led an eventful life, with lots of pain and persecution, which she knew how to handle. Her genius, temper and personality are engraved in her paintings that have turned her into a universal character. She is, at present, one of the most sought after painters of Latin America.
At a Latin American Assembly meeting for DPI (Disabled Peoples International), I also had the honour of meeting Gabriela Brimmer, a disabled woman, who carried out very important changes in Mexico. Gabriela could only move one toe on her left foot, and with only this and a great effort, she moved the hearts of millions of Mexicans as well as many other people around the world, in favor of the disabled persons' movement.
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It was my idea to use these examples to introduce this speech regarding "Access to the Rural Area". These people who, in spite of their disabilities transcended time through their work and who moved the hearts of humanity because they did not centre their personality on pain and adversity, but on talent and knowledge.
Physical, social and cultural barriers keep millions of disabled children and adults throughout the world, excluded from their essential needs, such as attaining or enjoying their rights, health, social and productive integration, justice and equality, education, employment, housing, participation in social and political groups, affectionate relationships, access to public facilities, right to move. That is any possibility that allows us to develop a desired style and quality of life.
Actions and strategic plans in relation to disability have not achieved their goals. That's what we must aim at. We must take the main role to achieve what was dreamt of in the past. This must be the millennium of integration, the century that will respect the rights and dignity of disabled people.
It is our time to propose, analyze, discuss and construct the society we want for this present and coming future. Therefore, we must think of new creative organisations that will allow us to advance the changes necessary to integrate disabled people into the dynamics of family and social development.
Since prehistoric periods, disabled people have been excluded and abandoned. Spartans eliminated disabled people. However, some cultures deified them. Disabled people are seen as deviations from reality and any kind of deviation has always implied a menace.
For example in Greece, during the year 4 BC, Aristotle tried to interpret some of those deviations. Masai Indians assassinated their disabled children. Chaggas, from Oriental Africa used their disabled people to drive the devil away. Old Hebrews believed that physical defects were a sign of sin. Sudanese Jukuns considered disabled people were a creation of the evil spirits so they abandoned them for them to die.
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The Malasian Semangs considered their disabled people as wise persons. Nordic people thought disabled persons were real Gods. During the last Century the Nazis committed terrible crimes against disabled people. The Nazis believed the elimination of disabled people would help to construct a world of "perfect beings"
Also during this century, the existence of persons with disability gave birth to a flourishing industry of specialists based in residential institutions. In those places, disabled persons were deposited forever, forgotten by their families and society.
By the end of the 1970s most of the Latin American countries were ruled by dictatorships that committed terrible actions against Human Rights. But these dictatorships found a good excuse to attain a more acceptable image of themselves; they acted as patrons of disabled people; they even enforced regulations that would protect disabled people.
After 1981 disabled people got together and started to demand the recognition of their own rights. It was then, that DPI emerged. In 1982, the UN declares the period 1983-1992, "Decade of Disabled Persons". In 1993, "The Standard Rules on Equality of Opportunities for Persons with Disabilities" were passed. These rules have the implicit moral and political commitment of each state to adopt measures to reassure the equality of opportunities. In spite of the firm decision of every state, of supporting these norms and of the existence of national legislation, most of the underdeveloped countries only enunciated them but did not respect them.
It is important to make reference to the UN Convention protecting the Human Rights of disabled people, enunciated in the Sapporo Declaration, where these rights are made explicit at different levels: civil, political, economic, social and cultural.
It's quite evident that the majority of the Latin American countries don't protect the rights of people, in general, and especially not the disabled people. In consequence, a 98% of disabled persons don't have access to rehabilitation services; 20 million people need wheelchairs; 100 million people are disabled because of malnutrition; no country has a totally accessible transport system; and in some countries, 90% of disabled children don't live more than 20 years.
Disabled people living in our rural communities in our region suffer a double segregation: one is due to the socio-economical situation and the other, due to the geographic situation. This segregation could be solved with the following:
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The Family Research Council of Nigeria have distributed 80,000 posters to disabled communities, primary and secondary schools in Nigeria in a new initiative to raise awareness about HIV/AIDS. The campaign focuses on a storybook entitled "Medicine for HIV/AIDS" and is useful to disabled and non-disabled Nigerians of all ages.
At the launch, the Executive Director Amadi Arua, pointed out that currently little is known about HIV/AIDS among disabled people in Nigeria. Assumptions have been made that disabled people are not sexually active and so are at less risk of violence or rape than their non-disabled peers, which is not supported by research. Local research also shows that if disabled people become infected, they are less likely than their non disabled peers to receive counselling, support, or medical care when they begin to show symptoms of the disease.
The book is free and will be available in public libraries around the country.
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Over the last few weeks disabled Afghans have been protesting over the government's lack of attention to their needs. Up to 80,000 people in Afghanistan have physical impairments resulting from the ten year Soviet occupation and the country's civil war that followed.
The protesting crowd included about three hundred veterans who gathered outside the health ministry in Kabul. The police prevented the crowd from marching on the presidential palace. "We're demanding our rights" a disabled protestor, Mohammed Akbar, told the Associated Press agency. "We are not terrorists, we're sons of the nation who sacrificed and suffered".
The veterans want the new government headed by President Hamid Karzai, to pay them the overdue pension monies which amount to US$2 a month. They also want the government to increase the pension levels.
"It's nothing, we have to spend twice the amount we receive on transport", another protestor told reporters. In addition the protestors want the government to help them with subsidised housing, food coupons and jobs.
"I'm an educated man," said Mohammed Adbdullah, a graduate of the former government's military academy. "Yet they won't give us an opportunity to make a decent life, so we are forced to live like beggars".
The protest ended when President Karzai promised to meet with the group's leader to discuss their concerns.
[Source: Infama February 2003]
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As you will remember, in May, we sent you the latest report from the Human Rights Violations database instead of the Tribune.
Since the report was published the number of cases has increased by almost 100. So We thought you might find it useful to have updates in the Tribune so that you have the most up to date evidence available when you need to use it.
To give you an idea of just how dreadful the level of violence and abuse continues to be for disabled people throughout the world, here are a few of the cases added to the database since the report was published:
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Where: London, United Kingdom
When: 11-12 November 2003
Organised by Disability Awareness in Action, International Service, and Action on Disability and Development. The overall aim of the event is to encourage governments, NGOs, funders and decision-making bodies to include disabled people in their development agendas.
The first day of the conference is devoted to workshops:
The second day will include speakers and an opportunity for panel discussions. Confirmed speakers include Judy Heumann, Disability Advisor to the World Bank, Richard Howitt MEP and the Chair of the EU Intergroup on Disability, Sebenzile Matsibula, the Director of the Office on the Status of Disabled People in South Africa and Mark Goldring, Director of the VSO.
We will keep you informed on further details, conference programme and booking information.
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