Happiness Down’s Syndrome
by Neshikha co-founder, Chaya Ben-Baruch
“‘Inclusivity’ – all year round! “About two years ago, Avichai joined the municipal staff and has become an integral part of us, captivating us with his charm, hardworking behavior, loyalty, and talent. I call on business owners, public institutions, and organizations: give a hand to people with special needs, I promise they will fill your heart with happiness and pride. “We must remember that each of us has a variety of characteristics, qualities, and strengths, and so do people with disabilities. No community is complete if not all the individuals in it feel and know that they are part of the community and that they have an impact.” – Safed Mayor Shuki Ohana (Photo: Courtesy Safed Municipality)
The extra chromosome inherent in individuals with Downs can cause all kinds of complications and obvious differences, but there’s a silver lining: individuals who are more happy and content with life than your “typical” 46 chromosome mutations; as one mother put it, “they kind of bring out the best in people.”
Here’s our own family’s example: we live in Safed (“Tzfat”), an ancient hilltop city in Israel’s northern Galilee region. Our grown and married son Avichi volunteers at the Municipality as an aide to our mayor, Shuki Ohana, and people really love him. Avichi was, as an example, specifically invited to a wedding where the mayor and several of his administration attended. I sat back and watched my son go over to the buffet table and choose his food, to the bar and order a drink (…cola, which he is generally not allowed to have – “but it’s a wedding mom” he said defensively), and I observed how he mingled with the crowd.
The over 32,000 – resident community is studded with artisans, painters, weavers, and is an international magnet for Jewish mystical kabbala text teachers and students; think Woodstock/Rainbow Gatherings/Burning Man-meets-ancient mystical practices and lore, and folks also tend to hug a lot. Men will hug in greeting and of course, Avichi does the same. At the wedding, though, he held back when others spoke. He sat with his cronies (as in, not with his mother, mind you). As I sat back and watched my son “work the room” like a respected and welcome local politician.
Dr. Brian Skotko, a champion for differently-abled people, whose sister experiences Downs, has been a very vocal advocate. He takes exception that the extra chromosome ruins everything. He whimsically spoke in the past at the National Down’s Syndrome Congress about what life would be like “if individuals with Down’s ruled the world”:
- There would be more weddings; dressing up and dancing are a really “Downsy” thing to do. We have a few music discs that our children would put on and spontaneously dance to, playing the same songs over and over; the repeated music never seemed to bore them.
- Most events would start on time because, if you are late, you will hear about it for a week and then some.
- Honesty would be the norm “no mom you don’t look good in that dress,” and if God forbid you are sick the whole world will know about it.
- There would be more acceptance in the world and the pace would be slower.
I wonder where humanity is headed: some EU countries are trying to eradicate Down’s Syndrome as if it was a disease, and recommend abortion. And calling it a “chromosomal abnormality” only serves to bolster negative connotations and expectations. Why not call it a chromosomal wonder?
A society is only as strong as its weakest link, and some parents do not feel they can raise differently-abled children. But when God (or the Universe or… insert your own “Prime Mover”) sends them other challenging situations, how will they cope? Often people find inner strengths that they were not aware of when first challenged. No one that I know lives a perfect life. So who is really the weak link?
One of the things that helped us accept the surprise of bringing our son Avichi into the world was when our pediatrician told us, “If God had to put a child with Down’s in the world – you guys are a good address.” So, parents can also be compared to tea bags: you only know how strong they are when they get into hot water.
Avichai Ben-Baruch at his desk at the Safed Municipality (Photo: Courtesy).
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HAPPY World Down Syndrome Day / Welt Down Syndrom Tag #HAPPYDAY Pharrell Williams
HAPPY Welt Down Syndrom Tag 2014 Pharrell Williams
…from Germany.
YouTube link: https://youtu.be/iEdYn3df7PI
Inspired by Pharrell William’s 24 Hour Happy Music Video
All Musical Rights Belong to Back Lot Music, Columbia Records, & Pharrell Williams
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