One of the reasons I started writing about my experience with Down syndrome was because I sensed a need for a father’s perspective. Maybe it is more of a “female” thing to write about raising a child or maybe if more women than men stay home with the kids they have a more flexible schedule. Either way, the main reason I decided to read The Shape of the Eye, a memoir by George Estreich was that same reason. The author was giving his perspective as a father to a child with Down syndrome.
Estreich, George (2013-04-18). The Shape of the Eye: A Memoir (p. 287). Penguin Group US. Kindle Edition.
This is a book I would recommend to just about anyone interested in getting an idea about what it is like to be a parent to a child with Down syndrome. It has many of the qualities you would expect from a memoir but there is more. The author provides some very unique insights; eye-opening insights.
A key theme running throughout the book is that of story. We all have individuals stories and when we get married those stories come together. When we have children they become part of our story but they are also developing their own; parents become the keepers of the child’s story. The author does a particularly good job of showing how his personal story influenced the story of his family and child with Down syndrome.
The reader gets to follow along from the birth of the child to the diagnosis. You get a feel for how difficult it is for a family to deal with their baby going through heart surgery and then through eating difficulties. What I really enjoyed is that Estreich would break from telling his personal story to provide historical and scientific perspectives. There was a lot of research that went into writing The Shape of the Eye. It was during one of these breaks that he made, what I believe to be, his greatest revelation.
John Langdon Down
Estreich points out that Down syndrome has been a part of every race and culture since the beginning of time, however, the disability’s namesake comes from relatively recent history. John Langdon Down lived from 1828 to 1896 and is commonly thought to be the person that discovered the disability; Down is actually the first person to both name and describe the disability.
The way that Down went about describing the syndrome created significant implications for the way we continue to view the disability as well as the individuals diagnosed with it today. He created a list of characteristics that included physical descriptors as well as cognitive abilities. And, although he had many individuals under his direction from which he could compare and contrast he instead to use a single boy as the model for Down syndrome. John Langdon Down described a what he observed from a single patient and cast that description upon everyone that has the diagnosis cast upon them. And, to that I say “bull-shit.”
Estreich, George (2013-04-18). The Shape of the Eye: A Memoir (p. 200). Penguin Group US. Kindle Edition.
There are other aspects the author discusses about Down’s contribution to Down syndrome but when I read Estreich’s description of how Down single-handedly stripped every person with Down syndrome of their individuality something clicked for me. I believe this is a good part of the reason so many people struggle upon learning their child has been diagnosed with Down syndrome – they believe their child has just been destined to a future that is both specific and unfortunate. We are still holding on to the cookie cutter idea of Down syndrome.
To really understand how this could happen requires an understanding of collective memory and cultural narrative. There are things we hold to be true in life simply because we live within a specific culture at a specific time in history. There are many things like this, things we don’t even realize until we have something like Down syndrome enter our lives causing us to question our assumptions.
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