Welcome to Helland

Looks like I hit a nerve with the last post about the so-called metaphoric essay, Welcome To Holland. It is worth noting that Ms. Kingsley apparently wrote the piece specifically for parents of kids like her son, if I may call that the category of the higher functioning disabled. My comments in the last post, and this, are directed at those of us who are parents of the severely disabled receiving the story as an attempt to console. Additionally, the intent of the sender is always, as far as I can tell, with the absolute best of intentions. I have had people who truly love me and Pearlsky send the essay, as well as other bloggers whom I greatly admire. But I guarantee you, the sender is never in my (our) club.

I’ve been thinking as to why the essay is so awful and I think I nailed it …

This is the key to the complete failing of the essay for our population:

You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.

Right there is the false analogy, where the metaphor falls apart.

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Many years ago I was trying to understand several concepts. Concepts such as god and evil. The question was, as I learned, a common question. Why would a god allow for evil? What is the point? I was told that in order to understand good you need evil. If there was never any evil then there would be nothing to compare the status quo to and you would not appreciate good.

Damn good explanation for the holocaust, no? No.

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Italy has great vacation things to do, that is why it is in the essay. Italy also has some downsides, teams of child pickpockets, for instance. The essay does not take you to April 11, 1954 in Henderson, Nevada (the proposed most boring day in the proposed most boring city). Nor does it take you to a city that claims to be pickpocket free. It takes you to a different city with different positives, different “good.”

Take a look at Erika‘s post for the upcoming holiday entitled “Dear Santa.” Note what she is praying for … one can argue she is asking for “normal,” not great, not even good, just “normal” … a good night sleep, a mucus-free day.

My life, with respect to my children, is at best “normal.” I don’t have a shot at Italy or Holland. I pray for a seizure free day. I pray my daughter did not asphyxiate silently in the night and that I can wake her in the morning. The best possible is decidedly not Italy or Holland, it is staying home for vacation and not having the house burn down.

In Ms. Kingsley’s “Holland” her son has been in over 50 television shows. He is an active participating member of the “normal” society. He may be in Holland, or be his mother’s Holland, or wherever you want to take the metaphor. An argument can be made that her Holland is better than many cities (lives) with “normal” children.

Let’s geek out for a moment … here is a graph of a typical life, with its highs and lows.

Time goes on, you have your highs, good times, proud of your kids, etc. and you have your lows, job issues, illnesses, whatever.

Now let’s look at the life of parents and the severely disabled.

There ain’t no Italy, there ain’t no Holland.

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The essay fails miserably in the metaphor. Where it could go is the discussion of where life is outside of the disabled child. My life at home with Pearlsky is the second graph. My work life, my social life, my blog life, those are the first graph. That is what keeps me alive. Read those two sentences again … my life does have good and bad, highs and lows, but my life with Pearlsky does not. It has acceptables and lows.

Praying for what most would consider “normal” is not what we envisioned. I’d love to pray for Holland, but my fantasies only go so far.