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.
My son with Down syndrome was born just a little before Thanksgiving, two years ago. We became a family of five and entered into the holidays, excited and grateful.
Right around Christmas, my mind began to run in ways that I could not seem to put to rest. The features of his face… I couldn’t put my finger on it.
I don’t think I’ll ever forget that week between Christmas and New Year’s. One of those mornings, he opened his eyes.
Then came the flash of recognition.
The first thing I thought was, “Can people look like they have Down syndrome, without actually having it? Because there’s probably no way my kid has Down syndrome.” The rest of that story is, of course, history. The next days and weeks were filled with a lot of confusion and soul-searching. I would not characterize that time as an easy period of my life.
I find myself pondering the word “recognition.” In that moment, was I maybe having a moment of “re” + “cognition”, as in, understanding again?
From my completely self-centered parent’s perspective, I can write about the holidays as forever being a time that will remind me of when I “discovered” that my son has Down syndrome. That’s pretty silly though. My son has always had Down syndrome, after all.
Two years later, my memories of that week are not entirely about grief, not about sadness or tears. I’m not denying that part of the experience, but the larger picture is of the process of recognizing the truth that was before us. Recognizing my baby for who he was, every part.
I’ve also learned from the disability community about the deeper meaning of recognition. Look in the dictionary, and one will find recognition as not just acknowledgment, but also of legitimacy, validity, and acceptance. I’ve listened to the words of countless disability advocates showing up every day, saying the hard truth, demanding recognition of what is true and just. And with those demands, I see a whole lot of pride. Loud and unapologetic pride.
Stella Young was a disability activist who passed away just a few weeks ago. She had a tattoo that said, “You get proud by practicing.” Young was one of the first writers in the disability community who really spoke to me, really shook me out of my confusion and made me reconsider everything I’d ever thought about disability. Young’s tattoo comes from a poem by Laura Hershey, and I’ll put an excerpt here:
You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.
I am not considered disabled. I am a neurotypical, able-bodied person who is raising a child with a disability. Yet I read Laura Hershey’s words, and I recognize that I, too, need to practice. Why? He’s two years old. I’m his gateway. I can either enable or block his path to power and pride.
As a parent, I cannot say that my entrance into the disability world was easy. I doubt that it will ever be easy for me to walk this path; no parenting is. But two years later, another holiday season is passing, and I’ve come to see an entirely different context for what I experienced. Practice is hard, and practice might hurt, but I’m immeasurably grateful for beginning that journey.
I’m going to call you Sparrow, cool? Cool. You have the cutest little face with such dark black eyes. And well, you sort of flew into our lives.
My mind was full of thoughts during my labor with you. In fact, my mind was full even up until the end, when I birthed you. Frankly, it complicated things. Probably not the last time I’m stuck in my own head when I should just be taking your lead.
Mostly, I was full of questions about who you were going to be. How could I simultaneously feel such a deep sense of knowing you, without ever having laid eyes on your face? Even at three weeks old I don’t know much about you. I don’t know if you’ll be reserved or boisterous, funny or serious. I don’t know what your struggles and triumphs will be.
What do I know? Well, you don’t like to sleep. You like milk. A lot. Sometimes, after a long crying jag, you let out the cutest, exasperated, defeated sigh. Like I’m just not getting the memo that you need to be bounced or fed at all times.
So clearly, I don’t know much.
Yet, I can’t help but feel like I do know you. I know you, like a tree knows when to put out new buds, birds know which way to fly, or a river knows which way to flow. I’m your mother and I know you, you know? This knowledge seems at once so simple, like a reflex, but also has a sense of eternity; even as your path twists and winds itself away from our joined beginning, I will always know some essential part of who you are.
Still. I am just your beginning, not your middle or end.
But goodness, what a beginning it is. During every moment of calm since you were born, I’ve been trying to soak you in, as if I could psychically reabsorb you just for a moment, and we would be one again. I know that every time I smell your soft, downy head that these moments are numbered.
You might wonder, if you are reading this as an adult, why I seem so bittersweet about our beginnings together, why I seem so keen on holding onto this feeling. It is because, this may be your beginning, but you are my middle. It feels as if my whole life has worked up to you and your brother and sisters. Your arrival has given me a sense of completeness that I haven’t been able to fully understand yet.
So. Welcome to the world, little Sparrow.