Sometimes Holland Sucks

When I first read the famous essay “Welcome to Holland” by Emily Perl Kingsley, I was touched. The overall premise, for those unfamiliar, is that having a child with a disability is like having planned a dream vacation to Italy, only to find out that the plane has landed in Holland. Not only are you in the wrong country, but everyone you know has been to Italy and talks about it all the time. What’s worse is that you will never go to Italy. Though the text itself is a bit unclear here, I think Kingsley means that you will remain in Holland forever. She could just as easily mean for the duration of the vacation, but either way, you are in Holland. Kingsley writes:

for the rest of your life, you will say ‘Yes, that's where I was supposed to go. That's what I had planned.’…And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I came across the Kingsley essay after reading another piece inspired by it in an online autism journal. That author, Jamie Pacton, obviously found Kingsley’s essay very comforting. Pacton wrote her own essay, something similar, in the form of a letter to her family during which she describes her husband bringing her tulips to symbolize the beauty they would find together in their new Holland location. She realizes that Holland has much to offer, including Rembrandts and windmills, and tulips.

I really wanted to find the same type of comfort Pacton found in reading the famous Kingsley essay. I tried like hell to feel what both authors describe. I did get teary eyed, but I am not sure if I was crying for the same reason. I remember thinking I could understand why that essay has become a landmark piece, one often given to parents by psychologists and doctors to help them deal with a diagnosis (autism or otherwise), but in the days following my reading it, I couldn’t get the essay out of my head for a different reason entirely: it really pissed me off.

I get the metaphor. I get why it appeals to the masses, why people need to have something simple and cute to refer to, but what annoyed me was the oversimplification.

Undoubtedly, Kingsley has written much more on the subject. Surely so has Pacton. I fully acknowledge the authors'  important roles in helping readers cope with having a child with a disability. I have been in Holland for ten years now and though Holland has tulips and Holland has windmills and Holland even has Rembrandts, just as Pacton says, but what she does not say is that parts of Holland also have pain and poverty and prostitution, just like Italy, but at least I can speak Italian. It is in fact why I chose that country for my destination. And sometimes, quite honestly, my Dutch sucks.

Here is what I would tell parents who just received an autism diagnosis for their child, maybe not immediately following that news, but at some point. In Holland, you will forever feel a specific sense of loneliness. Even when you are with your autistic child, there will be times that you will feel completely and totally alone.  You will feel a sense of longing that will make you feel guilty, but the pain in your heart from the loneliness will overshadow that guilt, and you will forget about the guilt. The loneliness will sneak up on you when you least expect it, small moments that add up to something bigger than you, bigger than the diagnosis. You will be driving past a yard in the country where you might see something simple like a fire pit surrounded by camp chairs of various sizes, the smallest chair tipped over as if the child could not wait to run and play, or had to get closer to the flame to roast his marshmallow or melt his s’more. You will not lament the fun he had. You will not begrudge this simple pleasure to him or to the adoring family you have decided he has. You may even realize that you have spent a Saturday night engaged in this same activity with your own family in Holland, but you will note that it was marked with something very different than the way this scene appears to you. And you may not want to, but you will still feel lonely and sad and bitter. You will begin to imagine the conversation this hypothetical child had with his hypothetical parents, especially with his mother, the wonder conveyed not in that child’s eyes, but in his voice, in his deliberate questions and the satisfaction he gains from their answers. Mommy, what time is it? How long can we stay out here? Where does the moon go in the morning? You will hear a lack of exactness in her answers that you voice never has, a fairy tale quality, full of metaphor and magic, language that has been denied you in Holland, that the yellow of no tulip, the beauty of no painting, the methodical spin of no windmill can heal. In Holland, your words must remain concrete and specific. Precise and clear.

Here in Holland, there is beauty, but there is also a distinct hurt that makes all beauty irrelevant. Not forever. Of course not. But for seconds that sometimes stretch into full minutes, minutes that unravel into hours, hours into days. During these times you will be unable to look on the face of any windmill and find in it anything but wind. No magic. No beauty. Just fact and existence. Existence and lack, spinning around each other, first in one direction and then in the other. In Italy there is pain too, yes, but the pain you will feel here in this place you never meant to travel to is nothing like the pain parents feel during their dream vacation. Pretending otherwise only allows your trip to veer further off course, to rob from your very unique location the truth that will get you safely to the next landmark, where you may well drown in the beauty of a painting, but only because you know what it took to make it so beautiful, every deliberate brushstroke, every shade of color mixed to create the perfect hue. You are not just the viewer, nor is your child simply the subject.  Together you are art itself. But unless you know that this place sucks sometimes, you will miss just as much as Kingsley describes in the person who forever dreams of Italy and never adjusts to Holland.