Saturday, 21 March 2015

World Down Syndrome Day

A mother and her daughter with Down Syndrome. Taken from: /Screen_Shot_2015-03-20_at_12.56.19_PM___Content.jpg

Alongside the International Day for the Elimination of Racial Discrimination, today is World Down Syndrome Day.

Yes, those with Down Syndrome are genetically different from those that are not. For those never touching Biology after tenth grade Science (or the highest-level Biology you were required to take where you live), the majority of the human population - most likely including you - were born with forty-six chromosomes (DNA molecules), receiving twenty-three from each parent. The majority of those with Down Syndrome are born with an extra copy of Chromosome 21 from one of their parents (Trisomy 21). There are also other types of Down Syndrome including mosaicism, a fraction of cells contain a third Chromosome 21, and Translocation, part of Chromosome 21 latching to another chromosome.

Yet with an extra chromosome, those with Down Syndrome are similar to those that are not. To summarize in a sentence, those with Down Syndrome can achieve heights and therefore live fulfilling lives on their own. Take a look at the article posted on National Geographic by Melissa Riggio on Down Syndrome before she died of Leukemia in 2008. Riggio reminded me of any other teenager. She disliked her sisters taking her CDs and she was on her school swim team. She had a tougher time at school than the average person yet it further made her human for she had her weaknesses just as the rest of us. She had her niche of writing poetry and singing too, just as we have talents and passions. I am confident she could have been anyone.

Stigma to Down Syndrome existed since those named 'mentally retarded' were institutionalized where they were mistreated or despised by doctors and therefore not operated for life-saving treatments or abandoned. It continued into the 1980s at which one would call a "Disabilities Rights Movement" gained momentum. Yet we are far from the gold - or bronze medal. Or steel or aluminum. (What, are you expecting me to rank all the known alloys and choose one?)

I want you to imagine being the person knowing that "70 and 90 percent of parents given a prenatal diagnosis opt to have an abortion" of fetuses with Down Syndrome. I want you to revisit the article in the National Geographic and read Melissa Riggio: "When I first started to work on this story, I thought maybe I shouldn’t do it. I thought you might see that I have Down syndrome, and that you wouldn’t like me." I want you recall an article on the news about children with Down Syndrome being bullied and educators dismissing the event as being outside their scope, or educators themselves imposing restrictions on children with Down Syndrome. (I would post the links but haven't been able to find them.)

I know discussing abortion rights is almost stepping into a waterpark in fifteen-degrees ambient temperature and being anti-Polar-Bear-Swim. But I must address the stigma toward those with Down Syndrome, the idea that those with Down Syndrome are challenging persons that cannot have achievements and are difficult to oversee, completely dependent, inept and costly, are still inhaled. What does the stigma do? It reaches those that know a person or people with Down Syndrome. It suggests to them that they need to be segregated or placed where they can be 'solved' for the time being. It suggests to educators to reduce expectations for a student and therefore not see what the student can achieve. It suggests to parents that their child is problematic. It suggests to doctors that they have an inept patient. What does suggest do to those that may give birth to a person with Down Syndrome? It suggests to them to fear the baby waiting, the baby waiting to be born, that any hopes of the child they wanted are gone. To some it suggests to add another fetus to the 90% of Down Syndrome fetuses being aborted. What does it to do those with Down Syndrome themselves? It nurtures an environment of low esteem and a dignity unreached, seemingly dangling at the topmost branch of a tree but the bark being too slippery to climb.

It is therefore time to build the stairway - actually ramp, to keep it accessible - to the topmost branch. It is time to reconsider the status-quo perception of those with Down Syndrome and to rebuild a new perception. It is time show that those with Down Syndrome are worth the company of their dignity and confidence. It is time to show that those with Down Syndrome are worth the company of success. Which they are.

It is simple yet difficult. To change the perceptions of multiple people is a daunting challenge. Yet it can start with and be passed on through the simple. Share positivity about those with Down Syndrome. Seek to include them and to bring out the best in them. Pass it on. We are already making several strides. Unlike searching Autism into the Google Search Bar and flooding your screen with the first page linking to Autism Speaks, other pro-cure links and stigmatizing stories from Google News, typing Down Syndrome in the Google Search Bar yields a few more positive outcomes. (I say only a few more.) Reading upon the Walrus for Writer's Craft assignments about a year ago (my Writer's Craft teacher referred us to the Walrus in multiple assignments requiring critical thinking and sophistication) I saw the photo essay of Down Syndrome and its positive portrayal as the title questioned the large number of abortions. I believe I see the steel and lumber (actually, let's choose a wood substitute. I'm almost a recycling enthusiast and want more carbon sinks than sources) needed to finish the ramp. It is time to become the toolbox.

Last, to those with Down Syndrome, I address you. I respect you and today I celebrate you. I celebrate your extra Chromosome 21 or translocated genes. I know there is nothing with you or your population. Everybody has weaknesses and everybody has strengths. You are extraordinary talented people just as the rest of us. Remember to hold onto your confidence - we'll make sure we build the ramp.

- FA

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