Mouse has been writing a lot of stories lately. Her first story with any kind of recognizable story arc was about… A princess. Of course.
It has had me thinking quite a bit about fairy tales, and the power of narrative over our lives. It is a chicken and the egg question, of course, whether narrative informs our world or it is the other way around. A realistic guess is that it goes both ways.
At any rate, my six year old has given me more to ponder than I’d ever expected. Here is her story, with spelling corrected for ease of reading.
There was a princess. Her name was Princess Rose. Her palace is beautiful. She found a prince. He was not nice. But Rose had always wanted a prince. But she would not marry a mean prince. So she stopped looking.
After a while she looked again. The mean prince was still there. She wondered why he stayed. She said, “Do you wish you were married?” He said yes. She did not actually want to marry. She was not talking anyone, until she couldn’t hold it. They tried to marry until she said, I can’t marry. So he got on his horse and rode away.
After the mean prince left, she wondered, would she find another prince that is nice? Yes, she did and his name is Tom. They watched each other for a while. This is this a new prince,” she thought. She said, “Can we marry?” Tom said yes so they did.
So you can imagine that I was confused as to why Rose got engaged to the mean prince, fully knowing he was mean. I asked Mouse why this was. Her answer? Rose did not want anyone to think that she was mean. Not only that, Rose thought by marrying him, he would learn to be nice. Apparently, he couldn’t help that he was mean; no one had taught him to be nice. Huh.
Suddenly, a voice in my mind recited, “Sugar and spice and everything nice, that’s what little girls are made of.”
It gave me real pause to consider that my six-year-old daughter already has gotten the message that women are expected to sacrifice themselves to others in the name of being “good”. She might not be able to articulate it beyond a little girl’s princess story, but it is clear to me that the message has been delivered.
Mouse explained more of the story to me. Rose was extra careful the next time (this is why she and Tom “watched each other”), because she did not want to get stuck with another mean prince. I pointed out that if the new prince was mean, she could always choose to call off the engagement, or that maybe she doesn’t need to be with a prince at all. Mouse repeated that Rose really wanted a prince. More importantly, if Rose kept calling off engagements, no more princes might come, knowing that she was so likely to say no. Huh.
So Rose waits, protecting her reputation, and then makes the first move once she is confident. Ok, I thought, this is good. I liked that in her story, a good man can wait for the woman to approach on her own terms. I’m so weary of unreasonable fairy tales that promise happiness for women who compromise themselves. Little mermaid Ariel, change your body so you can find love. Belle, go live with the mean angry beast to please your father. Better yet, return to captivity and you’ll be rewarded beyond imagination. Cinderella, don’t make waves for your father, endure abuse and neglect and one day a different man will pluck you from that hell and all will be right. I could go on, but you get my point. You can tell I’m not a Disney fan. And don’t tell me that this stuff doesn’t matter because they’re too young. Kids are sharp, they get it more than they let on.
I have been reading the commentary around the Fifty Shades of Grey movie, and while I think both sound pretty ridiculous (I did read the first book out of curiosity and vow not to partake any further), I can’t help but think, goodness, how is this not a fairy tale all grown up? I’m not judging anyone’s fantasies. What we imagine in the privacy of our own minds doesn’t have to be laid bare for public critique. The question is more about what we choose to elevate, what grips us and why. Virgin finds impossibly seductive millionaire with violent desires to control his romantic partners. She surrenders against her better judgement yet all ends well. Fifty Shades of Grey promises to be a dark fairy tale for adults, complete with a modern day equivalents of a palace, chariots, and even a dungeon. It is the “bad boy” story that goes right. But just as I’ve never heard anyone’s captor turning into a kind prince with a magical kiss, I’ve never heard of a real life example of an abuser miraculously reforming simply because someone loved him or her enough.
I can’t seem to get Mouse’s story out of my mind, because it reminds me that my children will one day meet mean princes and Christian Greys. Men who might appeal to their sense of “good” in order to draw them into dysfunctional or, even worse, abusive relationships. I’m glad that my daughter’s princess story doesn’t end with her surrendering to the mean prince. Whether her six year old musings will carry over into her real life decisions, well, I lose some sleep over that.
Look. Contrary to how we seem to be acting, we are not actually in the zombie apocalypse. Or, any kind of apocalypse at all. If you doubt my claims, I suggest you look out of your window. Go on, peep. Are there undead corpses roaming around? Are there locusts and frogs raining down from the heavens? The sky is up high and the ground is down low, right? Oceans where you left them? Phew! What a relief.
I am so sick and tired of people justifying exclusion and discrimination by making it seem like we are in the end of days. I mean, okay, for most of human history, the struggle to survive has been real. Back in the day, we were romping about the earth in furs and spears, sure, life was more tenuous. But. That was a verrrrry long time ago.
In the last, say, two hundred years, humans have been ridiculously busy. Anesthesia, dishwashers, photography, air travel, mechanized farming, the internet, nuclear power, toilet paper, vaccines, instant coffee, machine guns, antibiotics, contraceptive pills… These are all from the last blink of an eye in the timeline of human history. Some good, some bad, some TBD.
With all that modern invention, we have gotten to the point that we collectively make 2,720 kilocalories of food for every person on this space rock of ours. Yes, I believe it is true. Yet somehow, huge numbers of us are starving and in poverty, because we can’t stop fighting and trashing the planet long enough to take care of our fellow human beings. We are our own worst enemies.
In this country, especially, I cannot believe that we are arguing about lacking resources to address poverty, lack of access, and inequality. We throw out more food than paper, plastic, metal or glass combined in this country, and we have the largest material requirements in the world (to support our apparently dire need of huge houses, extra cars, bottled water, etc.). I mean, we are a nation that is willing to pay upwards of $10,000 for Super Bowl tickets, for crying out loud.
What about the “if everyone did that” argument? If everyone were in a wheelchair? What if everyone had Down syndrome? If everyone were this, that and the other? I concede that yes, if every single person on the face of the planet suddenly lost use of his or her legs, sure, perhaps we would be in a pickle. If tomorrow, every single baby were born with a disability, yes, it would give me legitimate reason to pause.
These imaginary scenarios, however, are never going to happen. This obsession we have about what the ideal human should or shouldn’t be has got to stop. We are not all the same. That is the genius of the human condition. We are a diverse species, and that makes us strong. Maybe it is wired deep in our brains to worry about this stuff because back in the day, it was an actual possibility that 3 out of the 5 good hunters in the clan broke a limb or succumbed to a disability causing illness, and then the baby born that year had some significant condition. I get it, that would put the group in a real bind. But look, the interwebs tells me that the UN estimates there are somewhere around 7 billion people in this world. Between us all, we can stand to have a little variance. And, we make enough food to feed every single one of us. So is our situation actually so dire that people need to rant and rave in the comment section of every article about disability that “they” are sucking all of our resources? It isn’t about lacking resources, we need better systems to make the world more equitable (and this issue is not limited to disability, of course).
Which brings me to my original point: the zombie apocalypse. Given that we have left the period of human history in which we are living in truly tenuous times, I’ve tried to look into the future. Would there ever be a time in which this irrational obsession with (actually not so limited) resources would become somewhat rational? The only scenario I’ve managed to come up with is the zombie apocalypse. Even then, I’m more of a “live together, die together” type of gal, myself. But go look out the window again. No zombies. I’m even gonna go out on a limb and guess that there are no zombies in our immediate or even long-term future. We are more in danger of irreparably trashing the Earth in the next few decades, in which case the zombies won’t even have a planet to overrun, so no worries.
I’m an optimist. We can absolutely take care of each other, and in so doing, we will all benefit. We can have a more inclusive society; the resources exist, the talent exists, some people are working very hard at it. If we put more energy into supporting those efforts, I think we’d all be a lot happier. Plus, in the off-chance the zombie apocalypse does happen, I think learning how to more successfully cooperate will mean we’ll have a better chance at surviving anyways, am I right?
I spend a lot of time thinking about my children. I know, you are shocked. One of my kids has Down syndrome. Ergo, I also spend a lot of time thinking about disability. Yes, another shocker.
I think every parent spends quite a bit of time trying to divine his or her child’s future. Maybe others are better at realizing it is a futile exercise, but I can’t seem to help but fall down the rabbit hole every now and then. For me it is part of the loving; I want to know that if my babies are to walk through the harsh fires of life that they will have just as many moments of rising above. As long as we can withstand it, hardship tempers and shapes us into stronger, more resilient people. Yet, as a parent, I wish someone could whisper in my ear, they’ll be alright in the end. Just that little bit would make me sleep better.
This on and off again attempt at seeing the future takes on a different shape when I think of my son with Down syndrome as compared to his siblings. It isn’t even so much about him. I believe he holds difference just as we all do, but he’s not Different, you see? It is just that I know he will likely face more discrimination than his sisters will. I’m surprised at how routinely he is questioned in ways that his siblings are not, even at this young age. Will he ever talk? Can he go to school? What can he do? What does he understand? His whole life seems to be prefaced with an “if”. It is as if someone put a big “MAYBE” bubble over his head. Frankly, I’d like to pop that bubble and stuff it down the disposal.
With the passage of the ABLE Act last month, I’d been contemplating my children’s futures quite a bit more than usual, wondering what things I needed to do in order to ensure the most possible level of self-determination for my child with a disability. So perhaps it was kismet that the book The North Side of Down: A True Story of Two Sisters came to me just then.
The North Side of Down is a beautiful, bittersweet, story about how disability weaves its way through a family’s fragile, and ultimately breakable, bonds. At forty years old, Amanda is the youngest of eight. Each chapter begins with Amanda’s words, setting the scene for her older sister Nancy to weave the tale of their family’s slow, dysfunctional collapse after their mother dies and their father becomes unexpectedly ill. I appreciated this format, as it felt that Amanda’s words led and Nancy was amplifying what was already there. Both sisters have a brand of dry, unexpected humor that makes me wish I could meet them both.
Nancy writes herself and her oldest sister Raven as two diametrically opposed embodiments of how disability is viewed by society. Nancy, whether she intends to or not, holds a very radical view of disability. She advocates for Amanda’s self-determination, and herself practices unconditional acceptance of Amanda’s identity. I’ve become nearly allergic to any whiff of pity, burden, or inadequacy in relation to the topic of disability in literature. As a non-disabled parent who writes about her disabled son, I’m very aware of what a difficult task it is to keep honesty and nuance when discussing such a wide a varied topic such as disability. I made my way through the first few chapters with a bit of anxiety, waiting for disappointment, but never found it. Nancy writes about her sister with respect and reverence for Amanda’s entire person, including but not limited to Amanda’s disability.
In contrast, Raven is portrayed as seeing Amanda as a series of deficits that can only be managed and remediated by a non-disabled person. Frankly, Raven as she is written would be my worst nightmare; I had a hard time understanding how such different women could share the same sister. As their parents decline, the two older sisters begin to be at odds over Amanda. None of the other siblings seems able to let go of his or her respective bit of emotional family baggage enough to intervene, allowing the family to fall ever deeper into their painful and destructive fight over Amanda’s future.
I found the book resonated personally with me at every turn. I constantly found myself wondering, could this happen to my family? Despite the love and care I see between them now, as children, could my girls possibly grow into views so disparate that they could eventually let their brother suffer for it? I know that until I read the book, my main concerns were of the outside world, strangers who may not respect or understand my son, but now I realize that I may be missing something crucial that is right under my nose.
I wondered, how much their parents ever discussed disability around the dinner table. Or, if anyone had ever even thought of disability as a civil rights issue. I wondered how often they had sat down as a family and openly discussed their feelings, allowed Amanda to speak and be heard before their parents started their unexpected declines. It seemed like Amanda was left instead to drift on the unpredictable tides of her siblings’ longstanding resentments towards each other.
After I’d finished and felt a sort of terrible ache, because I know too well that this kind of story unfolds over and over again in families across the country. The North Side of Down is a beautifully rendered portrait of the power and frailty of family bonds, but I think holds special interest for families touched by disability.
You can find the North Side of Down: A True Story of Two Sisters for purchase on Amazon.