UNITED NATIONS
Secretary-General's Message on 21 March 2012 World Down Syndrome Day
http://www.un.org/en/events/downsyndromeday/2012/sgmessage.shtml
FULL TEXT
Today marks the first commemoration of World Down Syndrome Day. I congratulate the global partnership of governments, activists, families, professionals and others that worked so tirelessly and passionately to bring this Day into existence.
For too long, persons with Down syndrome, including children, have been left on the margins of society. In many countries, they continue to face stigma and discrimination as well as legal, attitudinal and environmental barriers that hinder their participation in their communities.
Discrimination can be as invidious as forced sterilization or as subtle as segregation and isolation through both physical and social barriers. Persons with Down syndrome are often denied the right to equal recognition before the law, as well as the right to vote or be elected. Intellectual impairments have also been seen as legitimate grounds for depriving persons with Down syndrome of their liberty, and for holding them in specialized institutions, sometimes for their entire lives.
In many countries, girls and boys with intellectual disabilities lack sufficient access to mainstream education. The prejudice that children with Down syndrome obstruct the education of others has led some parents of children with intellectual disabilities to put their children in special schools or keep them at home. Yet research shows — and more people are coming to understand — that diversity in the classroom leads to learning and understanding that benefit all children.
The United Nations has worked for decades to ensure the well-being and human rights of all people. These efforts were strengthened by the adoption of the Convention on the Rights of Persons with Disabilities in 2006. The Convention embodies a paradigm shift in which persons with disabilities are no longer regarded as objects of charity and welfare, but as persons with equal rights and dignity who can make an enormous contribution to society in their own right.
On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.
Ban Ki-moon
NEWS FROM AROUND THE GLOBE:
Click on the links to access the full articles
INDONESIA
The Jakarta Post,
Ground breaking first articles ever published in the Indonesian Press on the topic of Down syndrome.
Inclusive education for Down Syndrome children
http://www.thejakartapost.com/channel/life/450Since the Indonesian Education Ministry issued the 2009 regulation on Inclusive Education, parents of children with Down syndrome now have choices for their children's formal education, other than simply enrolling them in a special school. According to that regulation, the inclusive education system enables all children regardless of their differences, special talents or learning potential to participate in the same curriculum and activities in the same educational environment. Data from the Indonesian Ministry of Education, indicates that in 2011 there were around 1,680 special schools and 967 inclusive schools at the elementary and junior high level in Indonesia. Several schools, however, still seem overwhelmed with their status of being an inclusive school.
Penny Robertson: Teaching society to fit in
http://www.thejakartapost.com/news/2012/03/21/penny-robertson-teaching-society-fit.htmlPersons with Down syndrome are rarely seen in our dense Indonesian cities — many are kept out of sight, along with the other millions who are not deemed “normal”. When the Robertson family relocated from Adelaide in South Australia to Jakarta no international school would accept Shona, triggering Penny’s blunt message to one principal, who had said the school could not accept handicapped children: “My daughter has a mental disability and it is you who are handicapping her.” This led to a new chapter of Penny’s life — initiating and co-founding the Australian International School in 1996, which is open to children with special needs.
Atu Nurbaiti is a journalist with a great facility for injecting warmth and humour into a story and has captured with a keen eye what has driven Penny Robertson with her "big picture" vision to achieve so much in collaboration with other key people with the complementary skills for managing the "fine detail". The article is a balanced, hard-headed look at the highs and lows of being a parent of a DS child. It also captures the "essence" of Shona Robertson- her openness, trusting nature and joy in engaging and communicating with others.
A Day to Empower
The Jakarta Globe, March 19, 2012 by Jamil Maidan Flores a poet, fiction writer, playwright and essayist who has worked as a speech writer for the Ministry of Foreign Affairs since 1992
The Jakarta Globe, March 19, 2012 by Jamil Maidan Flores a poet, fiction writer, playwright and essayist who has worked as a speech writer for the Ministry of Foreign Affairs since 1992
My son Jibrail, has Asperger’s syndrome, the high-functioning kind. As a child he was enrolled at an
assisted learning center at the Australian
International School (AIS) in Jakarta. Al
I remember last September when Penny Robertson (founding Principal of AIS and Chair of DSI) met with Grata Werdaningtyas of the UN’s
Indonesian mission to secure Indonesia Brazil and Poland Indonesia
On Wednesday, an international conference with the theme “Building our future” will be held at the UN headquarters inNew
York
The conference is part of a global outreach program, based on the UN Convention on the Rights of Persons with Disabilities, that trains and supports advocacy organizations to help people with Down syndrome gain the right to basic living standards, medical care, education and respect, and to help them advocate for themselves.
Once empowered, people with Down syndrome have much to contribute to society. Seven million people worldwide have the condition, including at least 300,000 inIndonesia
As the need for global outreach surges, some advocacy organizations are in desperate need of donations. Find out how you can help by visiting www.ds-int.org, or contact Andrew Boys, the director of Ikatan Sindroma Down Indonesia, at 0044-020-8614-5124 .
On Wednesday, an international conference with the theme “Building our future” will be held at the UN headquarters in
The conference is part of a global outreach program, based on the UN Convention on the Rights of Persons with Disabilities, that trains and supports advocacy organizations to help people with Down syndrome gain the right to basic living standards, medical care, education and respect, and to help them advocate for themselves.
Once empowered, people with Down syndrome have much to contribute to society. Seven million people worldwide have the condition, including at least 300,000 in
As the need for global outreach surges, some advocacy organizations are in desperate need of donations. Find out how you can help by visiting www.ds-int.org, or contact Andrew Boys, the director of Ikatan Sindroma Down Indonesia, at 0044-020-8614-5124 .
THE NETHERLANDS
Self advocates with Down syndrome tell of their life experiences at World Down Syndrome Day at United Nations conference
http://media-dis-n-dat.blogspot.com.au/2012/03/self-advocates-with-down-syndrome-tell.html
Media dis&dat
Wednesday, March 21, 2012
at 8:12pm by Beth A Haller
Self-advocate for Down syndrome issues, Tathiana Heiderich, told the WDSD Conference in New York how she hosts a show called Being Different in The Netherlands. She advocates full participation in all life has to offer: “We can work, date, get married, and make our own choices.” Her family helps her create the show, which she says tries to be entertaining and informative. She also uses Facebook to publish her work: “We need the media’s help because there is still much prejudice.”
BRAZIL
Self advocates with Down syndrome tell of their life experiences at World Down Syndrome Day at United Nations conference
http://media-dis-n-dat.blogspot.com.au/2012/03/self-advocates-with-down-syndrome-tell.html
Media dis&dat
Wednesday, March 21, 2012
at 8:12pm by Beth A HallerTelevised soapies can become a powerful force in initiating changes in attitude regarding "difference", from a negative to a positive perception. This was graphically proven by a Brazilian soap opera "Paginas da Vida" (Pages of Life) when it included in its storyline Clarinha, a character with Down syndrome, played by young actor Joana Mocarzel. The character has become so popular in
At the WDSD Conference in New York a book titled Change the way you speak and I will change the way I listen produced by the Carpe Diem Association,
Tathiana Heiderich of the Netherlands inspired a character with Down syndrome in a popular Brazilian comic.
UNITED STATES OF AMERICA
Self advocates with Down syndrome tell of their life experiences at World Down Syndrome Day at United Nations conference
Posted on
Media dis&dat
Wednesday, March 21, 2012
at 8:12pm by Beth A HallerLooking for Suffering in All the Wrong Places
Huffington Post, Posted: 05/09/2012 11:31 am by Rachel Adams, Lecturer of English and American Studies at
http://www.huffingtonpost.com/rachel-adams/looking-for-suffering-in-all-the-wrong-places_b_1503069.html
EXTRACT ONLY, go to link for full article.
As the parent of a child with Down syndrome, I resist the idea that my son's disability is a blessing, a sign or a lesson. However well intentioned, such explanations diminish his humanity, reducing him to a mere reflection of other people's concerns. Down syndrome is not a disease. It's caused by a relatively common genetic accident resulting in an extra 21st chromosome. Although some people with Down syndrome are susceptible to certain medical problems, they are not sick simply because they have Down syndrome. We are frustrated when the doctors who treat my son seem confounded by the idea that someone can be both healthy and disabled.
Nor are people with Down syndrome perpetual children, an idea linked to the damaging misperception that they cannot be educated. In the past, parents were advised to institutionalize a child born with Down syndrome, who, they were told, would remain in a perpetual state of dependence. Sadly, such beliefs became a self-fulfilling prophecy. Denied nurture, stimulation and basic medical care, it's no wonder that children with Down syndrome failed to reach their full potential. A younger generation of adults raised at home, educated and given opportunities to flourish is proving how many of the negative qualities associated with Down syndrome are actually the byproducts of institutionalization. The 2009 film "Monica and David" documents the joyful, loving relationship of a married couple with Down syndrome. Actor and singer Chris Burke, musician Sujeet Desai, and champion swimmer Karen Gaffney attest to the many things adults with Down syndrome can accomplish. To assume that people with Down syndrome are inherently innocent and childlike is to prematurely foreclose the possibility for adult relationships and opportunities.
People with Down syndrome experience frustrations and disappointments. But more often than not these are because of being denied the opportunities enjoyed by their peers, forced into infantilizing living situations or placed in unrewarding work programs. People with Down syndrome are capable of experiencing the same satisfactions and passions as the rest of us. Nobody watching "Monica and David" dance a sensual, joyous salsa at the end of the film could equate Down syndrome with suffering. Nor do the families of people with Down syndrome suffer more than average. Parents like Michael Berube, Amy Julia Becker, Martha Beck and Jennifer Graf Gronenberg have written about the rewards of raising a child with Down syndrome. And when it comes to siblings, it would be hard to say that Dr. Brian Skotko of the Children's Hospital in Massachusetts, Tiger Mother Amy Chua or Olympic snowboarder Kevin Pearce were damaged by having a brother or a sister with Down syndrome. I know hundreds of more ordinary families who would probably describe themselves as experiencing degrees of suffering similar to those of the rest of the population. Very few would attribute that suffering to Down syndrome. When we do experience suffering, its causes are often systemic. We suffer when we hear "retard" jokes in
Its important to resist the misperception that disability necessarily comes hand-in-hand with suffering. We live in at a moment where medicine promises to eliminate pain. People with disabilities inspire fear and disgust in the able-bodied because they seem to suggest the limits to this promise. But research shows a dramatic difference between non-disabled people's perception of the quality of life of people with disabilities and the way people with disabilities describe themselves. When asked, they claim levels of satisfaction commensurate with those of the general population. My experience tells me the same is true of their families. This anecdotal evidence is supported by studies showing that the families of disabled children are no more likely to be broken or dysfunctional than the families of typical children.
Children with Down syndrome are born into a world of contradictions. Improved medical care, educational resources and changing social attitudes mean that they will lead longer, healthier and more rewarding lives. At the same time, genetic research continues to develop tests that would allow for earlier detection and, it is presumed, elimination, of a fetus diagnosed with Down syndrome. As someone who strongly supports reproductive freedom, I'm dismayed by the misinformation about genetic disabilities offered to prospective parents. How can they make wise decisions when the counsel they receive is so often inaccurate or biased? The wrongheaded equation of Down syndrome with suffering certainly does nothing to lift the fog of misunderstanding.
AUSTRALIA
Shona Makes Every Day Count
Tweed Coast Weekly, Thursday 15 March 2012, page 14
Federal Member for Richmond, Justine ELLIOTT M.P., caught up with Penny ROBERTSON, Chair of Down Syndrome International and her daughter Shona ROBERTSON. The trio were sporting "I Count" badges to show their support for the Every Australian Counts campaign for a National Disability Insurance Scheme.Both Robertsons were preparing to fly to the USA where they were to address the "Building Our Future" the 7th Conference organised by Down Syndrome International. For the first time the United Nations endorsed 21 March as World Down Syndrome Day and the conference was held on that day in the UN building in New York. The UN was so impressed by the presentations that it requested DSI hold the conference at the UN every year.
The Australian Senate Joint Media Release 21 March 2012
http://www.mitchfifield.com/Media/MediaReleases/tabid/70/articleType/ArticleView/articleId/552/Media-Release--World-Down-Syndrome-Day--21-March-2012.aspx
Senators Mitch Fifield and Sue Boyce, together with Senators Carol Brown and Rachel Siewert, moved in the Senate the following motion acknowledging World Down Syndrome Day and supporting its celebration across the world.
Senators Boyce, Carol Brown, Siewert and Fifield give notice that on the next day of sitting we will move that this Senate:
- note that March 21, 2012, marks the sixth anniversary of World Down Syndrome Day and the first time that day has been acknowledged under the auspices of the United Nations;
- congratulates Down Syndrome International and Down Syndrome Associations in
- notes that the UN resolution to recognise World Down Syndrome Day was proposed by
- recognises that Down syndrome is the most prevalent genetic cause of intellectual disability and that the characteristics of Down syndrome have been known since medieval times;
- acknowledges that barriers faced by people with Down syndrome can be overcome through the shared vision for an inclusive Australian society that enables people with disability to fulfil their potential as equal citizens;
- acknowledges the multi-partisan support for a National Disability Insurance Scheme and encourages the Australian Government to continue to push forward with the implementation of a National Disability Insurance Scheme to give Australians with Down syndrome and other disabilities the opportunity to live fulfilling lives; and
- Supports the celebration of UN World Down Syndrome Day by people with Down syndrome, their families, friends and carers, and the wider community.
World Down Syndrome Day
HANSARD
Wednesday 21 March 2012
Commonwealth of Australia, House of Representatives, Federation Chamber, Constituency Statement
http://parlinfo.aph.gov.au/parlInfo/genpdf/chamber/hansardr/cd08e91c-1ffc-4955-a61a-1a9087358780/0223/hansard_frag.pdf;fileType=application%2Fpdf
Justine Elliot, MP for Richmond, ALP party
Parliamentary Secretary for Trade
I rise today to acknowledge that today is World Down Syndrome Day. The reason that 21 March is World Down Syndrome Day is that 21/3 represents the three copies of chromosome 21, which is unique to people with Down Syndrome. It is estimated that there are seven million people with Down Syndrome worldwide, and it is the most common and recognised form of learning disability in the world.
This day in 2012 marks the seventh anniversary of World Down Syndrome Day and it is the first year that World Down Syndrome Day will be officially observed by the UN, following the adoption of a resolution by the UN General Assembly in New York in December 2011. The Australian government co-sponsored this very important resolution. On this day, Down Syndrome International encourages supporters and friends all over the world to choose their own themes, activities and events to help raise awareness of what Down Syndrome is, what it means to have Down Syndrome and how people with Down Syndrome play a vital role in our lives and our communities.
I would like to speak about a young woman in my electorate who plays a very vital role within our community. Her name is Shona Robertson, and she is actually in New York at the moment. Shona has Down Syndrome and she is one of the very few advocates from around the world who have been chosen to address the United Nations. We are very proud of Shona. She said that her message will be: 'Everyone deserves their own rights and opportunities. It's about people with Downs living in a real community. It's a free country, people should be able to do anything they like.' Shona is truly an inspiration. She volunteers in my office and she is a wonderful addition to the office. She also works for the Gold Coast City Council. She comes into my office one day a week. She has a really strong work ethic and a strong commitment. She brings a lot of humour to the office and a lot of political advice as well, which we greatly appreciate. We love having Shona in the office. My staff and I find that she is a great addition and a great help to us.
Shona lives independently in her own home. She is engaged to Andrius, which is very exciting; they are getting married soon. Her strong independence is attributed in part to the commitment of her parents, Derek and Penny Robertson. Penny is the chairwoman of the London-based Down Syndrome International. They both provide great support to Shona, which is fantastic. I would like to finish by quoting them. They provided a description about Shona and her life, and they said:
Shona is happy with her achievements to date and considers a house, a dog, a paying job and a fiance as the right of any young woman of her age.
How true that is. Congratulations to Shona on her remarkable achievement in going to New York, being able to speak about all of the great opportunities she has, and her achievements today on World Down Syndrome Day.
COSTA RICA
New Legislative Proposal Aims to Give Jobs to People with Down Syndrome in Costa Rica
Costa Rica
http://news.co.cr/new-legislative-proposal-aims-give-jobs-people-dow-syndrome-costa-rica/6048/
World Down Syndrome Day was quietly observed in Costa Rica
Legislator Elibeth Venegas of the ruling social democrat faction National Liberation (PLN in Spanish) who represents the community of Guapiles in the province of Limon , recently introduced a proposal before the National Assembly to:
Create more academic opportunities
Guarantee a number of job openings in the public sector
Promote hiring in the private sector
The number of Ticos who currently live with Down syndrome is not known by La Caja or the Ministry of Public Health. It is estimated that one out of every 800 births will exhibit this chromosomal condition. Legislator Venegas wants five percent of public service job openings alocated to people affected with Down syndrome. In an interview with Radio Reloj 94.3 FM, she explained:“We seek an amendment to the current law, number 8862, to allow people with Down syndrome to be able take a test that actually conforms to their unique traits and intellectual capacity so that they can join the workforce. The right to work is a right that should be enjoyed by all people equally. We have made strides in this regard, but we also think we have not done enough to guarantee that Ticos with Down syndrome are not discriminated during the hiring process.”
