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.


#JusticeForEthan, the ADA, and #CareNotKill

Two years ago, three off-duty police officers killed Ethan Saylor, a man with Down syndrome. Frankly, I’ve said all I feel that I can say about Saylor.  You can read what I’ve written here.  In short, I believe his death was an act of police brutality for which no one has been willing to hold the three deputies accountable.

It is not so much that police officers are involved in violent exchanges, or that they may take wrong actions, purposeful or not.  Law enforcement officers are human and flawed and our nation is polarized, to expect any kind of utopia in our current times would be naive. Perfection is not the goal, and I accept that.

What I cannot accept is that law enforcement in our country is increasingly above reproach.

A court case has been weaving its way through the system that has the potential to allow the police to be held even less accountable than they already are.  San Francisco City Attorney Dennis Herrera thinks that the ADA does not apply to police interactions.  Despite that a moderate panel on the Ninth Circuit Court of Appeals ruled against Herrera (read: it was not some kind of “liberal activist” panel), the Supreme Court has decided to review the case.  An effort under the hashtag #carenotkill is pushing Herrera to drop his case, and many groups have signed onto the effort.

Stop for a moment and consider what this could mean.  Have Down syndrome and take longer to process an officer’s request?  Doesn’t matter.  Are deaf and don’t respond when verbally called by an officer?  Doesn’t matter.  Have limited mobility?  Have a mental health condition?  None of it matters if the ADA does not apply to the police.  The police could be legally protected from citizens should they harm an individual by failing to take into account his or her known disability.

I know it is unpopular to question cops in this country.  I know that we want to think of cops as selfless heroes, paragons of righteous public servitude.  I’m sure the majority of police officers want to be that, as well.  But look, they are human beings.  Human beings who get scared, have biases, and get angry.  The answer to that is not to rubber stamp everything they do.  The answer to that is to create standards for officer conduct.  Our country endows our police force with many, many tools.  We, as a society, give law enforcement the power to lay hands on their fellow citizens.  We arm our officers with weapons.  We legally protect them in times of doubt.

Where then, is the other side of that coin?  Why are police so often investigated in-house instead of by an independent agency?  Why is it nearly impossible to get a criminal indictment against a police officer?  The ADA is the force behind things like wheelchair accessibility, inclusive education, and equal access to healthcare.  These are essential rights.  I don’t think it is so far flung for the ADA to also apply to police officers before they decide to use force against this country’s disabled citizens.

So on the two year anniversary of Ethan Saylor’s death, let’s think about how many others have been harmed or killed at the hands of our country’s law enforcement.  Some officers have been held accountable, others have been practically applauded. Michael Brown. Eric Garner.  Kelly Thomas. Teresa Sheehan.  Antonio Martinez.  Kajieme Powell. Brian Sterner. Rachel Thompson.  This list can go on nearly indefinitely, because they are not isolated freak incidents.  There is a steady level of unnecessary police violence that we can’t even measure because most law enforcement agencies resist efforts to monitor their use of force.  There are too many protections for bad police officers who are left to poison the system.  The most marginalized amongst us suffer most, but cases like Michael Bell’s show that no one is completely immune.  Law enforcement in this country needs higher and better enforced standards, not fewer.

We cannot change the past, but what will we say in its aftermath?  Will we fail to ask more from the men and women charged to protect us, even from ourselves?  Will we continue to accept that a disproportionate section of the largest minority group in our country are destined to die?

Get involved.  #JusticeForEthan.  #CareNotKill

 


Two Years In: Down Syndrome, Recognition, and Pride

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.

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