UNITED NATIONS

Secretary-General’s Message

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

 

World Down Syndrome Day at the UN – 3/21 – “Building our Future” – Conference to be held at United Nations on 21 March 2012

The first United Nations observed World Down Syndrome Day (WDSD) will be celebrated at the UN Headquarters in New York, USA, on 21 March 2012 (3/21), with the Conference “Building Our Future”.

Inclusive education, human rights, political participation, changing society attitudes, independent living, how to work with the media and research are some of the topics that will be discussed.

See below the current programme:
World Down Syndrome Day at the UN – 3/21 – “Building Our Future” Conference Room 2 – United Nations Headquarters – New York, USA – 10.00 to 14:30

10.00 to 10:30 – Opening
Welcome and Introductions Penny Robertson OAM, Chair of Board, Down Syndrome International (DSi)
UN Secretary General Ban-Ki Moon – Message on WDSD (to be confirmed)
Head of Brazilian and Polish Missions
Co-sponsor Organisations

10:30 to 11.00 – UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion – The Importance of Global Coordination Effort to Socialize the Convention
Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF
Penny Robertson – Promoting inclusion in schools in Indonesia
Shona Robertson – Australia – Self-advocate – on her education experience
Beatriz Paiva – Brazil – Self-advocate – Carpe Diem Association – Co-author of book on communication accessibility

11.00 to 11:30 – Human Rights and Political Participation of Self-Advocates
Daniela Bas – Director of Division for Social Policy and Development (DESA), UN
Maria Alejandra Villanueva Contreras- Peru – Self-advocate – Fighting for her right to vote
David Egan – USA – Self-advocate – Lobbying for his rights at the US Congress
Ester Nadal Tarrago – Spain – Self-advocate who participated on book on the Convention

11:30 to 12:30 – Changing Society Attitudes – From Neglect and Institutionalization to Protagonist and Living in the Community
Rose Mordi – Nigeria – President of Down Syndrome Foundation Nigeria
K.S. Sripathi – India – State Chief Information Commissioner, Tamil Nadu Government, Down Syndrome Association of Tamil Nadu
Jason Kingsley – USA – Self-advocate, Co-author of book “Count Us In: Growing Up With Down Syndrome”
Emily Perl Kingsley – USA – Mother, writer, activist, author of “Welcome to Holland”
Tom Forester – USA – Director of Residential Services – Association for Children with Down Syndrome (ACDS), Long Island, NY
Michael Brennan – USA – ACDS Group Home Resident

12:30 to 13:00 – The Power of Media – A Guide to Work with the Media to Promote Inclusion
Michelle Whitten – USA – Global Down Syndrome Foundation – How to get media’s attention in a positive, constructive way
Patricia Almeida – Brazil – MetaSocial Institute – Brazil’s experience with WDSD and inclusive actions in collaboration with the Media
Tatiana Heiderich – Brazil/Holland – Self-advocate on her experience as a TV reporter

13:00 to 14:00 – Care, Treatment and Research – What’s new on the DS front
Dr. Jose Florez – Director, Mass General Hospital Down Syndrome Clinic; Director, NDSC; Clinical Advisory Board, NDSS
Dr. Brian Chicoine – Medical Director, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Dennis McGuire – Director of Psychosocial Services, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Edward McCabe – Executive Director, Linda Crnic Institute for Down Syndrome
Margie Doyle – Down Syndrome Research and Treatment Foundation (DSRTF) – Latest on research and how to help studies move faster

14:00h to 14.30 – Launch:
1) DSi 2012 WDSD Global Video Event
2) New WDSD Website
3) DSi UN Convention Global Outreach Programme
4) Book “Change the way you speak and I will change my way of
understanding”- By Carolina Yuki Fijihira, Ana Beatriz Pierre Paiva, Beatriz Ananias Giordano, Carolina de Vecchio Maia, Carolina Reis Costa Golebski, Claudio Aleoni Arruda, Thiago Rodrigues, from Carpe Diem Association, Brazil
5) Book “The United Nations International Convention on the Rights of Persons with Disabilities commented by its Protagonists” – By Down España http://www.inclusion-international.org/wp-content/uploads/Guia-Convencin…

14:30 – Closing

The event is sponsored by the Missions of Brazil and Poland to the UN and organised by Down Syndrome International with the collaboration of the Brazilian Federation of Associations of Down Syndrome (FBASD), Down España, Down Syndrome Research and Treatment Foundation (DSRTF), National Down Syndrome Congress (NDSC), National Down Syndrome Society (NDSS), Special Olympics and the UN Secretariat for the Convention on the Rights of Persons with Disabilities.

Registration

Participants from all around the world are welcome, especially those with Down syndrome.

There is no cost for registration. Confirmation to attend the event can be made by the email to undsconference@gmail.com.

Please inform name, email, age, nationality, relation to Down syndrome (self, parent, relative, professional, teacher, student, friend or other-specify), document number (passport, driver’s license, student´s ID), whether you have a disability and what kind and if you need a disability-related accommodation or service.

Only participants with their names on the list and an ID will be allowed in the building. Space is limited.

About Down syndrome

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues.

About World Down Syndrome Day

World Down Syndrome Day (WDSD) was established by Down Syndrome International in 2006 and has been observed in over 60 countries worldwide to date. It is held on 21 March (21/3) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes the genetic condition.

The aim of the day is to raise awareness and understanding about Down syndrome, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.

A resolution to designate 21/3 as “World Down Syndrome Day”, to be observed every year beginning in 2012, was adopted by consensus by the United Nations General Assembly in December 2011. The resolution was proposed and promoted by Brazil, and co-sponsored by 78 UN Member States. From 2012 onwards, the date will be celebrated by all 192 UN countries. To learn more about the resolution process at the UN, visit http://www.ds-int.org/news/1769.
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For further information on World Down Syndrome Day (WDSD), please visit the DSi website www.ds-int.org or the WDSD website www.worlddownsyndromeday.org.

Press Contact:

Andrew Boys – Tel: 0044 (0)20 8614 5124 Mob: 0044 (0)7810 153294 Email: contact@ds-int.org

Down Syndrome International –
Langdon Down Centre, 2A Langdon Park, Teddington, Middlesex, United Kingdom, TW11 9PS.
Website: www.ds-int.org

Editors Notes:

• Down Syndrome International (DSi) is a UK based international charity, comprising a membership of individuals and organisations from all over the world, committed to ensuring quality of life and human rights for all people with Down syndrome. Our members include people with Down syndrome, parents, family members and friends, carers, professionals, practitioners, researchers, organisations and people who are interested in Down syndrome.

• World Down Syndrome Day is a global awareness day observed on 21 March each year. This date (21/3) represents the 3 copies of chromosome 21, which is unique to people with Down syndrome, and people and organisations worldwide celebrate on this day in a variety of different ways.

• Down syndrome is a life-long genetic condition from conception. All people with Down syndrome will have some degree of learning disability but many will go on to lead full and semi-independent lives.

• There is estimated to be up to 7 million people who have Down syndrome living worldwide.

Please refer to attached Guidance Notes regarding use of terminology.

Regards

Andrew Boys

Andrew Boys
Director
Down Syndrome International

T: 020 8614 5124 F: 0845 230 0373
M: 07810 153294 SKYPE: downsyndromeinternational1
Email: andrew.boys@ds-int.org
Join us and celebrate World Down Syndrome Day on the 21st March each year.
www.ds-int.org

 

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