World Down Syndrome Congress 2015: In Case You Missed It!

When 500 Participants from 41 countries, 98 self advocates, parents, professionals, siblings, and medicos came together, the world became a little more sensitive and positive for all children with Down syndrome.  The beautiful monsoon skies of Chennai, India gave all the delegates a warm Indian welcome and the ITC Chola, the official venue went extra mile to make sure that all the guests were taken care of with the best hospitality in the business. 

The congress started with Panchayat, the open forum especially for adults with Down syndrome. The Panchayat, provided a platform for voicing wishes and desires, exchanging ideas, and forming friendships.

It was amazing to see these persons with Down syndrome communicating, explaining, putting across a point or just being themselves at the panchayat. The whole conference room was bubbling with energy and excitement, where everyone had something to say and was able to say without being judged!

Panchayat was just the beginning, the keynote lectures, the state of the art sessions and workshops by international experts addressing topics ranging from social inclusion, rights, education, health and employment on subsequent days made this congress an absolute place for all learning about Down syndrome.

The theme was, “The “Panch Tatvas” or “5 Truths”: Social Awareness and Self-Determination, Health, Education and Employment, Support Systems and Rights and the Law.

The inaugural ceremony was spectacular with Flag march by all the self-advocates, dressed as every participating county’s cultural ambassador, followed by Shankar Mahadevan’s outstanding song, which he especially written and composed for this event! The song was an instant hit amongst the participants, local as well as international and everybody kept swinging to its tune all three days.

The keynote speeches made by the self-advocates were heart warming. From Devanshi Joshi, Pranay burde from India to Sherry from South Africa and Karishma from Vietnam and, many more passionate speakers with Down syndrome got an outstanding response from the audience who applauded their confidence, zeal and passion.

From sharing knowledge, experiences and opening new frontiers to improve the lives of persons with down syndrome, this congress brought the professionals and stakeholders under one roof, all, who have been working relentlessly for anything and everything to do with Down syndrome. There were ideas, researches, speeches, visions, vocational models and much more from many speakers, who gave a different perspective on the inside world of DS. However, there were a few speakers, who stood apart, who established a point and proved it with research, knowledge and understanding. Here are the few, who left a mark!

Dr. Rekha Ramachandran

The woman who made it all possible, who brought the congress to India and who relentlessly worked for the past 30 years for the rehabilitation, education, early intervention and vocation for persons with Down syndrome. Dr. Rekha, is the visionary who after the birth of her daughter, Babli was introduced to the world of Down syndrome, which she wholeheartedly accepted. In the congress, her passionate speeches made many hearts filled up with love and many eyes with tears. She is a woman of substance and to understand the vision she has and the kind of work she has done across the globe, one has to hear her talk! Respect!

Dr. Brian Skotko

 A sibling, a geneticist and a co-director of the Down syndrome program at Massachusetts General hospital, Brian is not only an outstanding author but above all an absolutely delightful speaker who talked extensively about sibling relationships and various researches he has undertaken.  He spoke about parents’ role in validating the feelings of siblings when they are embarrassed, sad or going through a bad phase and about his own experiences of growing up with a sister with Down syndrome. My advice, if you haven’t heard Dr. Brian speak, you are missing an experience. Next time you can, don’t think about anything, just go and hear him talk! you will have an insight into the sibling experiences like never before.

Dr. George Capone

Dr. George Capone,  is a research scientist and director of the Down Syndrome Clinic and Research Centre (DSCRC) at Kennedy Krieger Institute and is also an associate professor of paediatrics at the Johns Hopkins University School of Medicine. Dr. Capone has been engaged in research that explores the neurobiology basis of cognitive impairment and co-morbid neurobehavioral and psychiatric disorders associated with Down syndrome. He spoke about associated challenges and issues with the extra chromosome, in much more detail than we all have read elsewhere. A great experience indeed!

Gillian Bird

Gillian Bird is a psychologist and director of consultancy and education at the Down syndrome educational trust. Gillian has been working with children with Down syndrome, from birth to teenage years and their families since 1983. She has developed and supported the inclusion of children with Down syndrome in mainstream education in 1988. Gillian has also developed early intervention programmes and been active in research, publishing and training. Gillian was a delight to speak to. A modest soul and a gentle voice, Gillian gave insights about her experience with inclusive education and was very receptive and appreciative to new speakers.

Rhonda Faragher

 Dr. Rhonda Faragher is a senior lecturer in Mathematics Education at the Australian Catholic University. She is the current Vice-Chair of the International Association for the Scientific Study of Intellectual Disabilities ( IASSID) Down Syndrome Special Interest Research Group ( SIRG). The number awareness is the most difficult to achieve in our children and Rhonda is the woman who has been working extensively in the field. She had some great ideas and you should attend any workshop that has the name of Dr. Rhonda on it. Period!

Penny Robertson

The founder of AIS schools in Indonesia on the inclusive model, Penny is a passionate speaker on the rights and education of persons with Down syndrome. She started a school based on Australian education system when she couldn’t find any school that would accept her daughter with Down syndrome. In spite of the corrupt system, red tape and thousand other challenges this school has managed to shine through and has paved a way for similar such inclusive schools. An outstanding speaker with an infectious smile, Penny made her way into every heart.

Nerida Lamprill 

A different perspective into the appearance and its importance in forming positive influences of persons with Down syndrome was the topic of Nerida’s speech. She spoke how changing hair styles, wardrobe and the way a person  appears can go a long way into leaving a positive impact when appearing for interviews and at other places, and how such influences can change the perception of Down syndrome, from negative to positive in general public’s eyes. The ‘before’ and ‘after’ pictures of persons with DS left many people awestruck and Nerida’s book ‘Love my shape’ was very well received and appreciated.

Amba for life

Founded by an Ashoka fellow,Sugandha Sukrutraj, Amba for life is a registered trust with a goal to provide a sustainable livelihood to persons with intellectual disability, leveraging information technology.  With a creative idea and an exemplary model, Amba, as an organisation stood out amongst many. Their passion, energy and zeal to overcome the challenges the society poses, are praiseworthy. Parents, professionals and people looking to engage their children into meaningful employment should have a look at their website and videos.

 

e.motion 21

e.motion21 is a not-for-profit organisation that provides Australian-first, innovative dance and fitness programs for children and young adults with Down syndrome. Their well coordinated dance moves won many hearts in the congress. After having performed in South Africa in 2012, this group was invited to be a part of this congress where they performed in the awards ceremony and got an overwhelming response by almost all parents and professionals.

These were just a few speakers out of many others who by sharing their insights and inputs, helped many parents understand the various perspectives and deal with the current and future challenges.  Speakers such as Gillian Bird, Ms. Himal Ruparel, Esther Cornelia Joosa, Patricia Almeida, Dr. Tony holland and Carol boys made a huge impact during the congress. But most of all, the one person who could make this all happen and bring all these people from across the globe together was Dr. Rekha Ramachandran, Whose passionate speech made everyone stand up and take a vow for Down syndrome rights! bravo!

If you were there, I am sure you felt the energy, the positivity, the vibes, the smiles, the air of concern and love and, if you weren’t there, do start preparing for the next congress that will be held in Glasgow, Scotland in 2018. Till then Happy learning!

and in the end, a few more glimpses into the WDSC2015. Enjoy!

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