Disability, Inclusion, and the Zombie Apocalypse

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?


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