The North Side of Down, by Nancy and Amanda Bailey

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.

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13 Comments on “The North Side of Down, by Nancy and Amanda Bailey”

  1. My emotions on this tripped into my thinking mind via an unexpected avenue. When my two young adult sons bring home a woman they are dating, I hear a whisper in my head, “Is this a woman who would embrace my daughter with Down syndrome when she is grown and I am gone?” It’s right up there with “Is my son happy with this person?” Which presumably would have been my only question if my daughter did not have DS.

    • jisun says:

      My kids aren’t old enough to date, but when I think about them finding partners, the same thoughts pop into my head.

      • Nancy says:

        My boyfriends always had to pass, “The Amanda Test.” Most of them did okay… Some better than others. I am just now remembering an incident with one ex-boyfriend’s brother-in-law who, unaware that I had a sis with DS, made rude comments at a party about “Corky, the kid with the extra chromosome” on TV. The boyfriend at the time could see me tensing up and was sending me pleading looks to please, say nothing. So, I honored his silent request. But in the back of my brain, I was plotting…. And that is long story, I think! (laughing) Let’s just say, we learnt him. We learnt him good. Amanda helped.

  2. cliffysmom13 says:

    My boyfriends always had to pass, “The Amanda Test.” Most of them did okay… Some better than others. I am just now remembering an incident with one ex-boyfriend’s brother-in-law who, unaware that I had a sis with DS, made rude comments at a party about “Corky, the kid with the extra chromosome” on TV. The boyfriend at the time could see me tensing up and was sending me pleading looks to please, say nothing. So, I honored his silent request. But in the back of my brain, I was plotting…. And that is long story, I think! (laughing) Let’s just say, we learnt him. We learnt him good. Amanda helped.

    • jisun says:

      Ha! I would love to hear that story. Perhaps in a future book. ;)

      • cliffysmom13 says:

        Amanda is already talking about a sequel. Sorry about the duplicate post. I have a BlogSpot blog but it told me I had to open up a WordPress account to post on yours. So I went through all that and then found out my first attempt went through. Duh. I wanted to try WordPress anyway — just a little intimidated by the bells and whistles. Haven’t figured it all out yet.

  3. Lisa says:

    Really wonderful review. I think you illuminated nuances I didn’t even pick up on when I read it! I really do think this book needs to find a publisher and, in turn, a wider audience. It offers a perspective that just isn’t out there anywhere else in Ds literature.

  4. Baileys Family Friend says:

    Beautiful Review. Its so sad to me that your Review is based upon a web of slander and lies, fabricated by Nancy to exploit her sister for financial gain. This is Not a true story, this Book is as manipulated as Amanda has been by Nancy and the only real victim here is Amanda. In the end, the other siblings have to rise above this sort of disgust and say nothing while Nancy pulls the puppet strings. As usual. Nancy has been the cause of heartache in the family for a very long time, and while she now has made her siblings look like the bad guy as she elevated herself, their hands are tied. She is a gifted writer indeed.

    • jisun says:

      I’ll be bluntly honest here–whether the facts of the book are true are of little importance to me. I’m a complete stranger to the Bailey family and have no vested interest in one account versus another. Even as fiction, the book is a worthwhile read in my opinion.

      I’ll say this though, it was fairly obvious to me that Nancy, as she is written, has some very real, deep flaws (as do we all). The sad (and scary for me when imagining my own children growing up) part of the story was that *no one* rose above.

      • cliffysmom13 says:

        It’s all true… Every word. And yes, I have flaws… As do we all. Thanks for the nice compliment on my writing, “Family Friend.” My goal was not to “elevate” myself. And I don’t think the story does. I think it reveals me honestly for the angry, grieving, economically challenged and emotionally broken artist that I am. I think the one person who rose above was Amanda. I hope my message gets across — we can learn so much from those who are viewed as disabled, because they are the ones who truly understand and practice love and forgiveness. And, parents, please get your affairs in order! You can raise your children by one set of standards, but outside forces come in, and people can change.


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