Kids: to have or not to have?

At the outset of this post, I must mention that a few weeks ago, I learned that my friend Mako-chan had passed away.

For anyone who has read other posts in this blog, you'll know him from my "Monking it in Osaka" entry.  He was the founder of Big-I, the International Communications Center for People with Disabilities in Osaka, Japan, and the gentleman who took me on a day-long adventure to the magical Koyasan.  Even though I spent nary a couple of days in his presence with language communication challenges to boot, he was a generous, intelligent, and active man, and I felt like we "got" each other.  He was also one of the longest spinal cord injury survivors I knew, being about forty years out from his injury, which was enlivening to me.  I consider him, even in our short time of knowing each other, a dear friend, and would like to honor his memory.

Learning of his passing also made me - as I am prone to be - contemplative about my own mortality.  How long do I have?  What is my purpose?  Could I die today, tomorrow, or in forty years, and feel that I've lived a purposeful life?  My answer is resoundingly yes, regardless of the things I still long to accomplish, and rolling through my actor life in Ashland is currently a boon to this.

But, an inescapable part of being a 33-year-old (yes, oooh, I said it), or frankly being a human of any age, is the question of children.  To have or not to have.

While some immediately and enthusiastically jump at "to have!", it's a question I've mulled over in great detail since I emerged from the womb, and now I will share some of this mulling.

First, a few things about kids: yes, they are pretty great.  I've known many of them, and I've even been one.  Lots of pros: they have wells of energy and vitality, an untarnished view of life, a sense of adventure that is unimpeded by fear or judgment, they challenge adults to answer questions that seem to have obvious conclusions (until the answers start unfolding), they take risks, they're fun, they're miniature, they're raw, and if they're yours, it's like a little version of yourself to keep you company.

How nice.

My sister, who is an OB/GYN, has had her fair share of interaction with kids, and the miracle or amazing scientific process (depending on your viewpoint) of bringing children into the world.  She's even had a kid or two named after her...wow!

She is also the first to tell you, conversely, about some of the horror stories she's encountered with bringing kids into the world, and what happens when those kids grow into adults who are not particularly considerate of the realistic challenges posed by bearing, rearing, and raising children. (Or, in many unfortunate cases, are still "kids" themselves.) And let me tell you, these are not joyful stories.  They involve poverty, abuse, abominable health, disrespect, ignorance, and absence of love.  It's the ugly yet entirely realistic side of having children that usually goes un-discussed.

Many people disregard the challenges of children as "all part of the deal" that, in the end, most would say is COMPLETELY worth it.  Because kids are soooo wonderful.  (Now, mind you, the people who say this have also had kids, and therefore may not be the most objective source.) But, in considering the question of parenting, I feel it's imperative to balance doe-eyed maternal instinct with some rational philosophy, and to give space to exploring the Dark Side of kids.

Children are/can be (you pick):
Expensive.
Annoying.
Mean.
Rude.
Poorly behaved.
Judgmental.
Assholes.
Dirty.
Belligerent.
Obstinate.

Bullies.
Tiresome.
Unrelenting.
Self-centered.

A huge responsibility.
And the worst-of-all dirty little forgotten secret about kids? They grow up so fast (as the old parenting maxim laments) to be "adults".  Who overpopulate the world, consume scarce resources, get and give diseases, break hearts, break heads, get greedy, insult people, sit around lazily, get addicted, steal, lie, cheat, abuse, are depressed, purposeless, bitter, discriminatory, and hurt others. Or, have the potential for all these things.

I'm sorry if it's hard to acknowledge this truth: that children are just early versions of the messy adults we become.  Yet, because of our fascination with miniature things, we forget that kids are humans.  And that humans are BIG responsibilities. (A high school teacher I know often poses the question, why do we have so many tests and requirements for other societal responsibilities - academics, driving, getting into the military, citizenship, law, medicine, even for getting to the next level in a video game - and yet, there is none for becoming a parent?!?!)

So maybe we should incline ourselves against procreation.

Often I think people are quick to judge this line of thinking as blasphemous.  "How could you possibly prioritize world overpopulation above the miracle of children?!"  One side of me responds, "Yes, of course!  Kids are amazing!  And, it's my American, deity-given right to bear them! I'll just figure out the parenthood thing as I go, because it's the most incredible thing you can do with your life!"  

The other side of me says, "How can I NOT take overpopulation into consideration?! There is nothing more selfish, inconsiderate, and irresponsible than having children without considering their impact on the world first!!"  After all, if I have That Kid, it's gonna have to live on this planet with 7,000,000,000 other humans (look at all those zeros).  And, all the issues this world already has?  That Kid will be adding to them, regardless of whether he/she/it is a good-hearted, well-intentioned person or not.

Side note: In case you're wondering about my spinal cord injury, yes, as far as I know, I can have kids.  It's no denying that having a child with a paralyzed body could be a challenge, and demand more care and attention than a non-paralyzed body.  But, it is absolutely possible, and I know many people with SCI who have had children and are happy, successful parents.

But, just because I can, does that mean I should?  Just because any of us has a penis, vagina, sperm, uterus, etc. and general knowledge of how they produce, does that mean we should?  As my parents used to say, just because Timmy jumps off a bridge, does that mean you should, too?

I have many friends - and a couple of siblings - for whom this is a palpable and timely question.  Some are having kids that were planned.  Some are having kids that were unplanned.  Some are single and terrified that they'll never get the option.  Some are married and trying, but it just hasn't "hit."  And some are looking at the world, as I am, caught in the space of "to have or have not," but feeling the general societal pressure of "yes, of course you should - it's our human purpose!"

Now, this is one point with which I will openly disagree.  In MUCH ADO ABOUT NOTHING (the play I'm currently in), Benedick jokes that "the world must be peopled!"  I don't think that humans should feel any obligation at this point in the time-space continuum to reproduce for humanity's sake.  (If anything, we should probably feel an obligation NOT to reproduce for humanity's sake.)  And for our individual sakes, I think we are a species that has developed to a point where life can be deeply purposeful in the absence of reproducing.

Now let me redeem myself to those of you who are inferring that I hate children.  On this question of living a "purposeful" life...kids are the best ever.

As I said before, there are many "pros" of children.  In comparing with the "cons" list, I noticed that the "pros" are much less about logistics and tangibles, and much more about perspective and intangibles.  Because this is where kids blow adults out of the water, and are the saving grace of humanity (and perhaps, many of our own individual lives).

They find delight in taking off their shoes and running through a fountain, where adults worry about how they'll dry off.
They escape into books and forts and trees and their imaginations, where adults often escape into alcohol, sex, drugs, or technology.
They look at new or different things with clear-headed curiosity, rather than with repulsion, judgment, and fear.
They allow their truest emotions to show and they communicate very clearly what they want or need, rather than masking or dulling it to prevent vulnerability.

And the list could go on.  While this draws some generalizations about kids and adults, I'd say it's still pretty universally accurate.

And, it reinforces one of my hypotheses about why we really have kids: to allow a brief return to a kid-like perspective of freedom and fearlessness.  A coal miner may not sit down by herself and pull out crayons on a Saturday afternoon, but she might if she has kids, and she might secretly really enjoy it.  And no matter how much an investment banker wants to take off his shoes and walk in the grass at lunch, he probably won't...unless his kids are the "excuse."

I adore the anomaly adults who still allow themselves to be child-like, even in the absence of children.  They often get judged up the wazoo; they're "immature", "out of touch with reality", or at worst, "kooky" or "crazy" or "insane."  I'm not referring to the jerks who start bar fights because they never learned self-control, or the only-children who still behave as though they are the only human beings who matter.  I'm not saying that all of the lessons we learn through adolescence, puberty, and adulthood should be discarded.  Once you have learned not to touch your privates in public, throw temper tantrums, hit something you don't like, or put bunnies in the microwave, those lessons should STAY.  End of story.

Other lessons from kids and childhood, however, should demand reprisal by adults.  Since adults were kids in the not-too-distant past, we have the capacity to find the same youthful joy in life that we experienced as a kid...without bringing one into the world.

I was reminded of this in our rehearsal room for MUCH ADO.  I watched a few of my fellow actors perform a hilarious scene in which some of them are actually dressed like children (think Boy scout attire), and all I could see were there inner tykes.

This one: the weird kid who ventured out into the field at lunch to pick dandelions at talk to "Crystal Shimmer."
That one: the straight-A student who captained the baseball team and was madly in love with his high school sweetheart for whom he painted roses on her sidewalk.
This one: the twelve-year-old who took on the responsibility of her parents way too young.
That one: the Ferris Bueller who got along with everyone regardless of type, age, or background.

The joy in our rehearsal room is palpable, and makes me feel like a kid.  Why?  Because I'm surrounded by a bunch of "adults" who allow themselves the freedom to venture into kid-like territory.  They're vulnerable, creative, and are given the license to think outside of what they think they know.

Clearly, theatre is a safe space for people to do this, which contrasts many other arenas of adult life.  But I see it outside of theatre, too.  In the young guy playing guitar on the corner, the old woman dancing alone in the aisles at the MLK Day celebration, the scientist who gets giddy about a new insect, the middle-agers who rendezvous for a softball game every week, or simply the friendly person on the bus who isn't afraid to smile, say hello, and start a conversation.

Each one of us has the absolute capacity to make adulthood full, interesting, and joyous with the details that surround us, whatever they may be.

You don't need a kid to have permission to draw a picture.
Or walk barefoot in the grass.
Or twirl at an outdoor concert.
Or take a class on pottery.
Or have an impromptu dance party after dinner on a Wednesday night.
Or craft your mac 'n cheese into a volcano.
Or play Candyland.
Or cry.

With a bit of vulnerability and carefree spirit, each of us has the capacity to bring out the best parts of our kid-self, no matter what our age.

Furthermore, what if we remembered that adults are just bigger versions of kids? Instead of judgment and disdain, what if we could treat our post-pubescent peers with as much fascination, adoration, and compassion as we do the little tykes?  Maybe we'd accept each other more freely and fully.

This is probably the biggest argument I've developed against having my own kids.  There are already so many diverse and fascinating humans on this planet, and I have barely scratched the surface with meeting them, learning from them, exploring with them, shaping them, and being shaped by them.  I don't know if I'll have time to add That Kid! Seven billion PLUS one?  I'm already tired.

While I might be able to impress more upon That Kid than some random person I meet, is this really the argument for having kids?  To create a person who I can mold more than the Average Joe human who already exists? Seems a little egotistical to me...I may as well get some Playdough.

The point is, kids ARE amazing.  SO ARE adults.  Which shouldn't be much of a surprise, because they are one in the same...just different sizes, with a few years in between.

So I don't think it's imperative for anyone to feel less - or more - for having kids or not having kids.  In my mind, it should really be considered a matter of logistics and resources: do you have what it will require to parent?  Do you want to give what it will require to be a parent?  Do you have a good reason for why another child should be brought into this world?

And this shouldn't be a moral or emotional consideration of whether you think you're "good enough".  Good parents come in all varieties, and so do not-so-good parents.  Even people that would make "good" parents shouldn't necessarily have kids.  I'd probably be good at designing buttons or researching panda bears.  But, that doesn't mean my life has to take that path.

There is no shame in deciding that you wouldn't make an optimal parent.  Everyone has their niche.

Frankly, I think Parent should be one more career category on those tests you take in college to choose a major.  Choosing "Parent" shouldn't be viewed as better or worse than Doctor, or Lawyer, or Scientist, or Actor.  They all fulfill necessary functions in our society. (I'm sure some of you are thinking, "Wait, "Actor"?  Necessary?  YES.  That's for another blog post.)  "Parent" is a life choice and a responsibility, not an automatic badge of honor.  Can it also be a truly fulfilling life endeavor?  Sure.  But so can saving lives, or fostering justice, or researching theories, or creating stories that make meaning of life.  Kids are not the end-all-be-all.  (Again, I know, because I was one.)  :-)

To the parents among us: congratulations on spending energy on gargantuan task of raising the next batch of humans. And perhaps consider loosening your proprietary reins a bit, to allow "your" kids to be exposed to some of the amazing kid-less adults in your midst.  You don't own them, and it takes a village; they're probably better off with some variety in their elders.

To the non-parents among us: thank you for supporting the kids - and the adults - in other ways, and for trying to maintain the world as a functional place for the next batch of humans to live.

To those who are pondering the question of kids:
Thank you for pondering and not rushing.  (I'm sure my sister - and the entirety of future humanity -  would thank you too.)  Maybe some of us could be great parents.  But maybe some have energies that are better utilized elsewhere.  Perhaps consider some of the alternative options:
Adopting one of the mini humans that already exists.
Offering to take a more significant role in some of your friends or siblings' kids' lives.
Getting your fill of kid-wonder through working with them as a teacher, mentor, volunteer, tutor, etc.

In the end, our lives will be full, communal, rich, and meaningful if that's what we want them to be...kids or no kids. Like Mako-chan...who made a significant impact on the world, all without kids.

So if you see me alone in the bushes drawing with crayons, I'm not nuts...I'm keeping the kid-spirit alive via the pregnancy-free route.  Let me be.

Diversity in entertainment: it's worth the mess

Today many circles are atwitter with disappointment about yesterday's Oscar nominations, which were significantly lacking in diversity (particularly in the acting categories).  I've also seen frustration expressed about Eddie Redmayne's nomination for his portrayal of Stephen Hawking, which many (and not just people with disabilities) think perpetuates the stale-and-too-frequent Hollywood trope of "play the disabled person and you'll get an Academy Award."

I thought I'd use my first blog post of 2015 to weigh in with a few thoughts.  But first, some context on where I'm coming from.

As some may know, I have just started a yearlong contract as a professional actor with the Oregon Shakespeare Festival (OSF). Some may hear "festival" and assume OSF is a small outdoor community theatre that nobly puts on a couple of Shakespeare plays during the warm summer months for picnicking, wine-drinking older folk.  While the wine-drinking may be accurate, the reality is that OSF is a year-round theatre that produces 11 plays and musicals each season, and is one of the most prominent and well-regarded repertory theaters in the country. It's also one of the few theaters that still hires a full company of actors for the entire season, each of whom works on multiple plays or musicals beside other artists who are practicing at the top of their craft (playwrights, designers, directors, stage managers, and others).  The plays that premiere here in Ashland, OR often continue on to top regional theatres, or even Broadway (such as the play that won the Tony this year, ALL THE WAY.)  Essentially, OSF is Broadway or West End calibre, but instead of NY pizza or fish and chips down the street, you have an organic food co-op with countless natural greybeards that rival Gandalf the Wizard.

For a theatre actor - or any actor - an OSF contract is a big deal, and a dream.

And for me - an actor who uses a wheelchair full-time after being paralyzed in a car accident nearly 13 years ago - it's an even bigger deal, and bigger dream.  After all, I am the first wheeling full-season repertory actor the company has ever had. EVER. In hundreds of actors who have graced the stages since the company was founded in 1935.  Eighty years.

I did learn that one other wheelchair-using actor, Kenneth Littleton Crow, played Snout in the 1993 summertime production of A MIDSUMMER NIGHT'S DREAM.  And Howie Seago, a deaf actor, has worked at OSF in multiple seasons.  Still, That makes 3 of us with different abilities, and only 2 who have been cast in the classical "rep actor" style where an actor is in more than 1 show during the season.  This is important - especially for actors who are "different" - because it means that the company is committing to you as a versatile artist who can handle the rigor of playing multiple roles that are often contrasting in nature...not just bringing you in for one show where you fit enough.

Fitting enough: that is often what we "different" actors have to do to get the role.  You could call it the "Othello conundrum," similar to where black male actors are not called to do Shakespeare until a theatre decides to do OTHELLO and needs a black actor. (Even Othello used to be played by white actors until people realized that, oh, wait, there are amazing black actors out there who can more aptly play the role.  And blackface is shitty and racist.)

OSF doesn't just cast based on where people historically fit into theatre.  It's ubiquitously apparent on stages up here, from PERICLES to GUYS AND DOLLS.  The company's mission is to reflect the diversity of the world around us in the plays it produces onstage.   (Gee, I would say that makes a lot of sense.)  There are colors and genders and creeds and sexualities and ethnicities galore, playing all sorts of roles that weren't necessarily intended by Shakespeare or other playwrights to be embodied by such identities.  And, considering that the World Bank's estimate of PWDs around the world is about 1 billion people - or 15% of the world's population - I'd say OSF has made the right decision in adding actors with different abilities to the mix.

Now, this isn't to say that it's easy.

When I first talked with Bill Rauch, OSF's Artistic Director, about their decision to hire me, we agreed that there might be some bits of mess involved.  People might say the wrong thing.  Not know how to help.  Be less skilled in directing or designing for a wheeling actor...a foreign experience for many, even the pinnacle artists who work at OSF.  But we both agreed that MESS is an unavoidable - and necessary - part of change.  Experiencing firsthand triumphs and mistakes is the only way to learn and progress.

And within week 1, we've had our first bit of mess.

It involves understudying.  Aside from being cast in multiple shows (usually 2-3 at a time), OSF actors are given understudy assignments.  You learn another role in case the primary actor cannot go on.  I was given an understudy assignment for a couple of roles in ANTONY AND CLEOPATRA.  However, as Bill (who happens to be directing A&C) began delving into the show and its design logistics, it became clear that the roles I was assigned would have to be on multiple levels of the stage that are not accessible to wheelchairs.

He was devastated.  And as much as he tried to find a workable solution, it became clear that the amount of energy and effort it would take to accommodate for the slight (emphasize slight) possibility that I would ever have to take the stage simply wasn't common sensical, for the show or for me.  And I agree; so I will be sticking with my 2 primary roles this season, and most likely not understudying.

In the future, this may require a system change in how the understudy assignments work.  Perhaps I won't be assigned my understudies until after the shows begin to take shape, so they know which shows will work for wheels.  Or, shows will be designed with a greater focus on universal accessibility.  Or, maybe a time will come when there are multiple wheeling actors in the company who can understudy each other.

Regardless, in my mind, this "mess" equates to 1 step back, compared to the 99 forward steps OSF has taken in hiring me.  After all, the roles in which I was cast for the season were NOT conceived for a wheeling actor.  Don John in Shakespeare's MUCH ADO ABOUT NOTHING is usually played by a man, and the text has no reference toward any physical difference.  The Mysterious Woman in Stan Lai's SECRET LOVE IN PEACH BLOSSOM LAND also has no indication of physical difference.  But in both cases, the casting team and directors opened their minds to what COULD BE POSSIBLE.  In doing so, they realized that it makes perfect sense for both of these roles to be played by...moi.

Some people say that everything in the arts - theatre, music, visual art, dancing - is just a re-creation or re-envisioning of something that's already been done at some point, somewhere in the annals of human history.  I understand this argument, but I also disagree.  I can say with a good deal of certainty that what OSF is doing with me this year in these plays has never been done.  (If anyone can find evidence to the contrary, I am all ears.)

Which brings me back to the Oscar nominations, and what I personally find disheartening about them.  It's not that white able men (or women, depending on the category) shouldn't be nominated; people who distill the issue down to this absurd conclusion are just being bombastic and ridiculous. I thought some performances by the nominated actors were exquisite.  In particular, I thought BIRDMAN was inventive and refreshing, and Michael Keaton was extraordinary. (Important note here: Alejandro Gonzalez Inarritu who conceived and directed BIRDMAN is Mexican.)  And I have not seen it, but I imagine that Eddie Redmayne pulls off an impressive performance in THE THEORY OF EVERYTHING.  Plus, regardless of him, I was happy to see that a movie was made about Stephen Hawking, one of the most fascinating and important PWDs in history (who is unfortunately also the frequent butt of many discriminatory disabled jokes, even though he could mentally smackdown just about any bloke on this planet...talk about Professor Xavier!).

The problem is that Hollywood, Broadway, and much of our popular entertainment are STUCK: in ignorance and cowardice.

I was going to say that they exemplify madness, as defined by Miguel De Cervantes Saavedra in DON QUIXOTE: "...maddest of all: to see life as it is, and not as it should be!"  But this is being too generous; they don't even deserve the designation of madness, because they aren't even fully portraying LIFE AS IT IS.

Those of us who pay attention out there in the "real" world - and the real America - SEE how it is.

It's a world where stories like those told in the Oscar-nominated films - of valiant soldiers, heroic deeds, despicable actions, tragic diagnoses, fantasy worlds, or the mundane details of life - are not EXCLUSIVELY lived by white people.  Or men.  Or people who are all "normal" physical specimens without some physical difference that indicates how they've been marked or injured by life.  It's a world where people of all kinds, colors, languages, and physicalities fill different roles: soldiers, teachers, parents, CEOs, McDonald's workers, doctors, or the dude next to you on the bus.

To not acknowledge and reflect this reality is ignorance.
To not actively strike out to start changing the human make-up of popular American storytelling is cowardice.

And so I understand the frustration with the Oscar nominations.  While there have been successes in recent years with Oscar diversity, there's not a stopping point.  The world doesn't stop becoming more diverse, so why do we think that entertainment can "take a break from diversity" for a year, as though we're just trying to fill a quota before we go back to tunnel vision?

The pathways forward are there, and to some of us, painfully obvious and doable.

Yes, there might be some mess as TV shows have to arrange for an accessible dressing room for a wheeling actor (something I've experienced).  But shouldn't they have one anyway, especially because it can work for ANY actor coming on set?  Doesn't it make sense?

Yes, there might be some extra cost to retrofit actor housing for a deaf actor who needs a light to flash when the doorbell rings.  But with production budgets that often factor in the millions (some of which goes to frivolous expenditures anyway), will a couple hundred or thousand really be that big of a deal?  Particularly if you're getting an exquisite performer that will enhance the company and its artistry?  (Btw, in my own situation at OSF, they had to renovate an apartment to make it wheelchair accessible, but I've heard that it was in need of a renovation anyway...I just happened to be a good excuse. :-)  And aside from a portable ramp and maybe one or two pushbutton doors - all of which benefit every employee and patron who come to OSF - the accommodations needed have been minimal.)

If an opportunity exists to move forward into uncharted and exciting territory, why hesitate, especially if it makes perfect sense?  Does it not make sense that Hamlet, a war vet, could have some sort of permanent war injury and be played by an actor with an amputation or wheelchair?  Does it not make sense that Idris Elba, a magnificently classy and talented black actor, would play the next James Bond? (Especially because, frankly, you want me to believe that a white boy spy will be able to infiltrate a terrorist cell in Yemen, or the Boko Haram outfit in Nigeria, or other contemporary spy-worthy locations?  Good luck white boy 007.)

Diversity does make sense.  And it's reality.  And even for those who focus on the profit bottom line, it's risky and thrilling.

For those of you who think the reason is that the actors don't exist, they do.  I know hoardes of them.  Actors who are Nigerian, Puerto Rican, have cerebral palsy, amputations, are Chinese, have spinal cord injuries, are deaf...you just don't know they exist because, in most cases, they haven't been given a widespread opportunity to share their stuff.  And, in many cases, even when the casting team and directors and writers know about someone "different," and in their heart-of-hearts genuinely WANT to make a more diverse choice, they don't.

Why?  "We're not ready."  "It's too expensive."  "Maybe next time."
Translation?  "We're a bunch of wussy-ass cowards who don't actually know enough to write diverse stories, and we're afraid to put our own necks on the line for the integrity of art and entertainment." (I'm really good at translating.)

Thankfully, my new colleagues at OSF are not wussies.  They realize the risk and reward of creativity, change, and diversity.

And when it comes to Oscar-worthy films or Tony-worthy plays, I'd rather see and hear about the unique artistic solutions invented to allow my actor friends with cerebral palsy or paralysis to play Stephen Hawking.  What greenscreening would they use?  What cool wheelchair contraptions would they make?  What camera angles and makeup would be necessary to give the appearance of withered legs when someone actually HAS withered legs?

And what messy situations came up on set or backstage?!?!  Because those are always exciting.

"Monking it" in Osaka

The following is a sizeable article I wrote regarding my visit to Osaka, Japan during July, 2014.  Enjoy!

*    *    *

I sometimes fancy myself a Buddhist monk.  After all, as a wheeler, I spend much of my day seated on a stable base; so do monks.  I have a unique perspective on the world that allows a glimpse into deeper truths that hurried-footed folk sometimes scurry past.  Monk.  And, my physical existence demands a bit of extra care, attention, and self-awareness, which, balanced with an acknowledgment of the fleeting nature of life, body, and existence, allows me – at some point – to let go of the physical world.  Monk, monk, monk.

So when I found myself wheeling through a secluded cemetery atop a mossy mountain in Japan, surrounded by ancient trees, inhaling clean fogs of history and spirit, on sacred grounds that felt countless miles away from the turmoil of the planet, and face to face with a Buddhist monk…I felt at home. 

Sacred cemetery at Koyasan

Now, at least at this particular point in life, I am NOT a Buddhist monk.  I am an actress, who found herself in Japan in July 2014.  My first visit had been in 2006 with a cultural exchange for young people with disabilities sponsored by Mobility International USA; a magical trip of homestaying, exploring the wilds of the Tokyo subway, comparing Japanese and American sign languages, and scything through tall grasses at the Tokyo Wild Bird Park.  I left that trip dreaming of an opportunity to return.  So when I was invited to present at Big-I – an arts, culture, and communication center for people with disabilities in Osaka – I dove in.

Now, for those who don’t recall grade-school geography, Japan is an island, just east of the Koreas and China, and an 11-hour plane flight west of San Francisco, which is where I began my journey.  Unlike my other previous international trips (to Japan, Dubai, Europe, Brazil), this time I would be traveling alone.  Which, inevitably raised the question…um, bathrooming?  Upon boarding, they initially offered the on-board aisle chair to wheel me to the bathroom mid-flight.  My take on that: big hassle…especially compared to the ease of my mitrofanoff, which allows me to efficiently and somewhat-modestly empty my bladder into bottles via my belly button. I explained the situation to Saki, the flight attendant, who responded that she had no problem assisting my bottle-emptying processes. Woohoo, cross-cultural conundrum #1 solved!

Problem #2: An 11-hour flight.  We plegics (para, quad, etc) sit. A lot.  But, sitting still on a plane is different from being in your custom chair where you can wriggle and weight-shift.  Personally, I get uncomfortable, even on my personal cushion.  So, I employ other strategies including compression socks, massaging my legs, stretching, and doing yoga moves to prevent leg swelling, skin issues, and discomfort.  In close plane quarters, I typically give my seat neighbor a heads up about this squirmy behavior.  However, this time I requested at the gate that, if they had any seat with an open space next to it, I’d appreciate being seated there (since, most likely, I’d be the only person on the flight unable to stand up and move around). I ended up with my own row, and could wriggle to my delight.  (And by the way, I was NOT the only wheelchair user on the flight…there ended up being 4-6 Japanese wheeling passengers, so I was in good company.)  Conundrum #2 solved!

Problem #3: EVERYTHING ELSE in a foreign country where you only speak bits of the language but need to communicate unique and important needs.  Yet within minutes of arriving at the gate in Osaka, I was reminded of why I love traveling to Japan: they are ON IT.  They are respectful, efficient, and have common sense about things like post-flight wheelchair assembly, or engineering stable aisle chairs that don’t topple over in the absence of a buff attendant. (See PHOTO: Why can’t we get these aisle chairs in the United States?)  

Aisle chair in Japan - the big side wheels pop off once you're loaded...much more stable!

Plus, Japanese culture is one of integrity, friendliness, and respect.  Meaning…people don’t insert themselves when they don’t know the proper assistive technique, or when assistance isn’t needed.  I admit that their efficiency sometimes made me feel slightly nervous about taking more time to do things myself, but I never had to contend with someone interfering in the “you look incapable so I’m going to help you even if it results in calamity” kind of way (which often happens in the US).

Within minutes of disembarking the plane, I had visited a fully accessible airport bathroom, breezed through the empty “accessible” customs line, been greeted by my hosts, and loaded into a spotless cab (driven by a white-gloved female cabbie) for the hour-long ride to Big-I.

Makoto Tsuji and Regan at Big-I

BIG-I

As much as I read about Big-I before arriving in Japan, I didn’t fully understand what it was…mostly because the United States doesn’t really have anything like it.  (The Ed Roberts Center in Berkeley is probably the most comparable.)  The International Communications Center for People with Disabilities – or “Big-I” – was established by the Osaka government in 2001 to serve people with disabilities through arts, culture, and advocacy programming, while also providing the local and international community with social service training related to persons with disabilities.  On any given day, Big-I may host a local conference on disaster preparedness, a symphony of schoolchildren invited from Tokyo to perform in the center’s music auditorium, an international artist who is presenting a theatre or dance workshop for people with disabilities, or all of the above.  The Big-I building includes a state-of-the-art music auditorium, conference/study rooms, a restaurant, and – most uniquely – a “hotel” with 40+ guest rooms, in Japanese and Western style.

And the kicker: EVERYTHING is fully accessible.  The seats in the auditorium can be reconfigured to accommodate any number of wheelchairs on the main level (up to 150).  

Modular and accessible aisles

The ground floor chairs can be removed for wheelchair accomodation

Main barrier-free plaza at Big-I

It’s a paradise of automatic doors.  The public bathrooms are equipped with changing tables large enough to accommodate an adult.  The elevators have video screens that show sign language interpreters that echo the auditory announcements.  And the guest rooms are an access junkie’s dream: switches within reach, doorbells that also flash light when triggered, handrails, wheelchair-level beds, space to maneuver, and a bathroom with numerous grab bars, plenty of surfaces to set supplies, and a shower area that allows for the choice of using the tub or the flat, rollable shower area just beside the tub. 

Accessible bathroom with shower or tub

It’s not glamorous, but it doesn’t need to be; as is often the case around Japan, function takes precedence over fancy.  This is my kind of philosophy: I could care less about whether a bed is made of hand-carved, gold-inlaid wood that some dude stained with cherries two hundred years ago…if it’s too high for me to transfer, it’s useless.  And the Japanese know how to arrange spaces efficiently and rationally: Japan has huge populations living in a limited amount of space (the population density of Osaka-Kobe-Kyoto is 13,900 per square mile, compared to 4,600 in New York).  Therefore, their space-utilization techniques often outperform the standards of the ADA, and, frankly, just make more sense (as though the designer has actually thought about what people need, rather than just trying to fit arbitrary code requirements).  

Big-I Director Makoto (Mako-chan) Tsuji – a T-4 paraplegic himself, from a car accident 40 years ago – has personally considered every aspect of access in each cranny of the building.  And he’s still not satisfied – the one challenge I had was fitting my padded travel bathroom chair over the Japanese-style wall-mounted toilet, which does not taper inward at the back.  He respectfully asked to see the situation himself…I imagine this will be remedied by the next time I visit.

Wall-mounting toilet with fancy Japanese amenities!

In speaking with Mako-chan, an unassuming businessman, advocate, and former athlete, it’s clear that he realizes one of the biggest challenges for people with disabilities is finding affordable, accessible accommodations.  I have found that even in big cities like New York or Los Angeles, accessible and affordable options can be scarce: access = space = hefty pricetags.  A person with a need for “barrier-free” (the commonly-used term in Japan) accommodations can stay at Big-I when visiting the center itself, or when in Osaka for other business or pleasure.  Big-I is also located a few hundred feet from the train station, and multiple barrier-free malls.

It’s no wonder, therefore, that I encountered a wide range of people with disabilities (and their families) at Big-I.  Many of them attended my presentation: folks from an integrated-ability hip-hop dance troupe, teachers and personal attendants of persons with intellectual disabilities, and parents…some of whom are still coming to terms with the injuries or conditions that have impacted their children.  I spoke about my spinal cord injury and how I rediscovered my life purpose in theatre, ultimately deciding to forge a life as a professional actor.  It was an exercise in patience as the talented interpreter re-stated each of my sentences in Japanese, but the entire audience was incomparably attentive and respectful, even when a loquacious attendee with slow speech decided to share a rather long explanation of her own journey.  No one checked their phones or tried to take the microphone away.  We all listened.

Lovely presentation attendees...

And a beautiful gift!

After the presentation, I spoke with numerous individuals who expressed gratitude for my presence: An older gentleman who had traveled from Hiroshima, where he survived the atomic bomb as a child; a middle-aged man who said he was sorry he could not bring live flowers for me, and had instead compiled an extensive book of rose photographs he had taken himself (the first of countless gifts I would receive on the trip); and a mother who was wrestling with raising a child who, in the eyes of society, was not “normal”.  Time after time, it was clear that, despite our inability to speak each other’s languages fluently, we all shared a bond rooted in the social experience of disability that was understood without translation.  Even though I was supposed to be the one imparting knowledge, I felt like a student among numerous senseis who were illuminating the true purpose of life.  Monk-style.

Beyond Big-I

A little context about me: I like adventure.  Pushing boundaries.  Living on the edge.  Using every day of my life to explore something different and extraordinary.  This doesn’t mean I constantly launch myself out of airplanes; sometimes it’s as simple as trying a food I think I dislike, or speaking impromptu with a friendly stranger, or venturing someplace I could get lost.  I’m a libra, so I like to balance the adventure with enough caution to stay alive; living on an edge that has a lip so I don’t go toppling over the side. 

As a wheeling traveler, I’ve found I sometimes have to compromise adventure for practicality or safety.  I mean, I would love to trek atop a donkey through Arabian sands to Petra, but this level of adventure raises the probability of side hazards, like skin sores from sand-sleeping or undetected bug bites, bowel and bladder infections from lack of sanitary conditions, and general overall physical risk and exhaustion from being in an environment that isn’t built to support the needs of unique bodies.  The best wheeler travels, in my experience, provide adventure AND afford the ability to take-care-o’-yo’-stuff in a way that isn’t so complicated that it ruins the experience.

Sake tasting at Fukuju Brewery

For the wheeler who doesn’t want to succumb to perpetual travel on cruises, Japan is a perfect fit: you can find yourself atop a secluded mountain oasis, or inside a giant ancient temple amidst a magical foreign culture, but have arrived there thanks to modern amenities that reduce barriers.  With less stress being spent on “how will I get up the mountain into the temple?”, one can focus on the better vacation stressors: “Do I want ramen or okonomiyaki today?!”

Attendants place the portable ramp at the subway station

This is not to say Japan is infallible on access.  Some restaurants and shops are cramped for wheelchairs, some buildings have steps and no ramped entry, and it can be challenging to navigate the subway or other access conundrums (particularly if you don’t speak Japanese). But, for the most part, even in the absence of an impending national law preventing discrimination against people with disabilities (to be fully implemented in 2016), Japan has effectually made the wide majority of public spaces accessible.  And again, many things that are engineered with intentions unrelated to accessibility end up being barrier-free due to their functional design.  For example, the “Japanese style” door (essentially a sliding pocket door), which is often automatic, allows for space-saving in tight quarters like bathrooms, and is generally easier and safer to open than a swinging door.

Famous landmark in Osaka

When it comes to creating barrier-free zones, Japan takes what I dub the “video game approach.”  In America, questions of access often get over-complicated and over-thought, which leads to hesitation.  If a business has steps and needs a ramp, it can get belabored by: What kind of ramp?  How much will it cost? Who is liable?  Do we have to change the entire front of the building?  Will it be visually appealing?  Will the entrance be built to code?  Will we get sued?  And so on.  The result – as I have often seen – is business owners making excuses for NOT making accommodations, which they exaggerate as an overwhelming hassle.  Now, the ADA didn’t intend for access to equal hassle; the point was for businesses to make reasonable accommodations, which could mean investing a couple hundred dollars in a modular ramp for a stepped entrance. But fear, litigation, and bureaucracy often get in the way of simple solutions.

In Japan, I don’t feel burdensome.  The “video game approach” means that the question of a ramp is as simple as, “Boop boop!  Create a little pathway here…beep beep!  Lay down a ramp over this crevasse here…bing!  Bing!  Help push the wheelchair onto the magic mushroom, and DING!  Get the princess!”  It’s like access challenges are little miniature projects that are treated with levity, efficiency, and duty…not feigned difficulty and patronizing attitudes (which has too often been the case for me in America).  And frankly, it takes all of 30 seconds for the svelte subway station attendant to ask which stop you’re getting off, and to grab the temporary metal ramp and pop it over the subway platform gap.  Or, for the restaurant owner to grab a washcloth and wipe down a person’s wheels so that dirt isn’t tracked into a shoe-free restaurant. 

Lighting prayer candles at Koyasan

And many of these solutions abound in Japan.  The subways are nearly all navigable for wheelers.  Ancient temples in Nara have ramps that allow wheeling entry to sacred spaces.  And one of my favorite experiences – the UNESCO World Heritage Site of Koyasan – has lifts, ramps, and attendants that assist in getting on the steep trolley car that ascends to the top of the mountain.  

Accessible lift to board the steep mountain tram

Once there, accessible paths guide you through sacred cemeteries rich with Japanese history, and temples where monks from a millennium ago are still believed to be inhabitants.  The journey requires stamina, and taking the train from Osaka made for a long day of travel.  (There are lodgings at the top of Koyasan, but I did not get to evaluate their accessibility.)  But the journey is worth the long trip, and for a short while I was able to envision myself as a wheeling samurai who had sojourned to dabble in the monk’s life.

Accessible entrance to Nara Temples

Koyasan accessibility

Nara Temple

Nara Deer Park...they are gregarious!

Other enjoyable side trips included a visit to Fukuju Sake Brewery in Kobe, complete with delicious sake tasting; a visit to the Tenjin Festival, celebrating traditional deities with costumes, food, fireworks, games, and more; and a show at the National Bunraku Theatre, where artists bring ancient stories to life through precise manipulation of classically handcrafted puppets…one of the most masterful and impressive storytelling forms I’ve ever seen.

"Bire" at Tenjin Festival

Yum...traditional lunch at sake brewery

Rice cracker "junk food"!

And of course, the FOOD: okonomiyaki, ramen, rice, fish, pickled vegetables, miso, tofu, tea, omrice, rice crackers, pork buns, beer, teriyaki, sushi, and more…I couldn’t get enough of the traditional Japanese cuisine.  Plus, for the brave-stomached, you can witness vendors in the markets prepare eels, fish, and other delicacies right before your eyes, from the tank to the table. 

Tenjin Festival

Traditional Bunraku Theatre in Osaka

Sign indicating the programs that serve people with disabilities at the Nara Temples

I learned after my trip that there is an unfortunate Japanese word that has come into existence in the last couple of decades: karoshi.  Literally translated it means “death from overwork,” and is used in relation to people who die suddenly due to physical stress, heart attack, stroke, or other physical problems resulting from the long working hours that are common in Japan.  It’s a devastating phenomenon that has resulted from the intense Japanese work ethic that, ironically, was likely the main factor in Japan’s progress and prosperity after World War II.

At times during my visit, I could sense sadness or exhaustion behind the stalwart cordial smiles of my Japanese hosts.  And I certainly wondered if they ever went home to sleep, as they were constantly working, moving, and doing everything they could for me.  So perhaps, like most countries – or people – there is a more melancholy side to Japan that wasn’t conspicuously apparent during my visit.  Maybe it’s what I sensed amidst the weighty serenity at Koyasan. 

Makoto, Masa, and Kyoko...and shabu shabu!

Aki wears a skirt!

The amazing staff of Big-I

This is what I love – and respect – about Japan: there is deep truth, meaning, and heart in its places, its people, and its lives.  But, Japan has learned not to take itself too seriously; it balances the depths with a cute, well-functioning, cartoonish surface. People are committed to moving, going, and doing, without getting hung up on themselves. There’s a quiet pride that is evident: in the language (words for “excuse me” and “thank you” are most commonly used), in the clean subways that don’t smell like pee or trash, in the delicate eating. It’s well-engineered and efficient, with miniature spaces, miniature plants, miniature items.  Smooth and automated.  With an awareness of what deserves reverence and permanence, balanced with what is fleeting and relinquishable.  An acknowledgement of significance and insignificance…and simultaneous respect for both.

I was enlightened about the insignificance of material things in Japan.  During my trip, I decided not to pay extra for service to use my phone.  And, I limited my use of e-mail. Surprisingly, while I was in one of the most technologically advanced societies on the planet, I enjoyed a technological reprieve that reminded me to breathe and enjoy the delightful video game around me. When I returned to my bedroom in Los Angeles, even my limited possessions felt like extraneous clutter. I was overwhelmed by the junk, the stuff, the noise.  In my cupboards, on Facebook, on the freeways, in my e-mail.  I was eager to simplify, and let go of some things I’d been holding on to.

What I retained was gratitude: for the generosity of the Japanese people; for a global society that allows us to adventure beyond our comfort zones; and for the reality that Japan is not a fantasy El Dorado that can only be reached in my dreams. It’s a lovely country, accessible to walkers and wheelers alike, where I hope to return one day to satisfy my inner monk.

Children's shrine at Koyasan

Regan the Japanese mountain monk

GIMPLECAPPED at the Hollywood Fringe!

A note on L.A. life: while the Cocaine Crochet Parties at Malibu orchards and cruising with fancy people in Jaguar convertibles down Pacific Coast Highway have been mildly satisfying, I feel a need.  A need...for theatre.

Hence, I'm doing a show at the Hollywood Fringe in June!  Co-written with my friend Laura Alsum, GIMPLECAPPED: A JOURNEY OF "INSPIRATION" will be a romp of vignettes that explore what it is to be gimpy/crippled/handicapped/disabled/different, or just plain ole' human!

We've launched a KICKSTARTER CAMPAIGN to support the show (since the pennies I collect on Hollywood Blvd. just don't stretch far enough to support Fringe theatre).  Check it out, and come see the show!

More on the show at www.sorethumbgroup.blogspot.com

And, here's a teaser:

Dive Further Into the Muck

I was fortunate to get the opportunity to write some thoughts about diversity and inclusion in theatre for the Theatre Communications Group Diversity Blog.  Check them out HERE!

Peyton, PSH, and Playing

When I think about my last couple of blog posts, the terms ignustically cathartbunkling come to mind.  I don't believe these Regan-created terms actually mean anything, but their combination of sounds gets at the psychosocialemotional state I've experienced during the last several months.  Bleccchh.

I'm in the City of Angels now; but sometimes it feels like the Angels fled long ago to a far-off exotic (or maybe seasonally diverse) destination and never came back.  It's big.  And crowded.  And easy to get lost.  And that can be hard, incredibly frightening, and can smother you.

But I'm emerging from the fear.

This doesn't mean that my current endeavors have gotten any "easier," or that I've had any major breakthroughs.  No, I haven't gotten my Law and Order SVU co-star.  Spike Jonze has not called to put me in his next movie.  And I'm not heading to Broadway as Martha in Virginia Woolf.  Yet.

What HAS been reignited is my internal perspective machine.

As I was watching my beloved Denver Broncos yesterday, floundering against the HGH-pumped Seahawks (don't argue...it's true), I initially felt bad for Peyton Manning.  "Ugh, how frustrating," I thought, "to battle so hard and then get to this point and still not make it happen, even with all the promise."  Then, adding "wanker!" to a sprain, the news about Philip Seymour Hoffman's death jarred me.  Then, a friend totaled his car in an auto accident.

Okay, mind you, this trio of events is paltry in relation to the loss, hurt, and devastation that occurs in the world every day.  But still, it felt like a strangely uncomfortable sequence of events that spurred a number of less-than-optimistic conclusions: for Peyton, that you can be the best, and battle and battle, and still get rattled.  For PSH, that you can constantly share your heart and artistry and reach a place of great "success," but that the climb to greatness is sometimes partnered with stress and philosophical realizations about the world that, while feeding your profundity, throw a few bones to the demons gnawing at you inside.  And my friend: well, unfortunate shit just happens.  It all left my intrinsic hope a bit dank.

Then, today, I had one of the experiences I consider to be the saving grace and best asset of Los Angeles (and perhaps of existence): a random encounter with a unique stranger that has the capacity to be life-altering. 

I was leaving the YMCA (where my lovely trainer and I regularly attempt to awaken less-than-responsive muscles and also burn off a few previously consumed Fat Tires) when an older gentleman offered to hold the door for me.  This led to a short conversation where I explained my simple physics approach to paraplegic door-opening, and he divulged that he has been battling a progressive cancer condition.  G, I'll call him, is a musician who transitioned into psychology years ago because he was disturbed by the levels of addiction among his artist friends.  Now he's the worse for wear.  With his condition, his lung capacity is significantly diminished, making singing difficult.  And, just as he gets comfortable with the new normal of his body, it changes on him, and his condition worsens.

So there we were: a spinal-cord-injured gal using a wheelchair for the rest of her days, and an old man counting his own.  As we talked, I was reminded of how challenging it is to acknowledge one's utter lack of control over life's circumstances, but how freeing it is to do so.  And, that we're all counting our days...some just have the confirmed prophesy that there could be fewer to live.

I told him about Linklater voice training that helped me to rebuild breathing capacity after I was paralyzed.  He took the recommendation graciously, and also offered that he's simply working on discovering what he can do with what he still has...in the same way that I try to graciously take people's comments about research that could reverse my paralysis, even though I'll probably be paralyzed for the rest of my life.  Which doesn't stop me from discovering new ways to propel myself forward on wheels.

When we parted, I found myself observing a flock of birds in formation as I listened to another young brilliant lost-too-soon artist, Kurt Cobain, crooning "All Apologies" on the radio.  And singing along.

All in all is all we are

All in all is all we are

I can't walk, but I can still sing.  

G is transitioning out of a fully operational body, but he's still swimming at the Y, still soldiering.

Peyton may not have won the game, but he DID make it happen: he got to play in the Super Bowl.  And he's still one of the best, who surmounted life-threatening injury and doubt to play again, and play masterfully.  THAT is bi-winning.

PSH may have gone down early, but he made an indelible mark on the acting world, doing what fed his soul.

My friend may not currently have a car, but he has more moments to hold his baby daughter.

As I rolled, thinking about these blessings, I actually stopped to smell a rose.  I delighted in the fact that I was giving an old saying newly-embodied life, only to find that the bush had no fragrance.  Bummer.  I rolled a bit farther, and lo and behold, another rose bush.  2nd time a charm...it was robust in fragrance.  

All this means...?  We get so caught up in the games we DON'T win, the roles we DIDN'T get the chance to play (or even audition for), the years we may NOT live, the car trips that WEREN'T completed safely.  And yet, if you're reading this, you're still alive; you have sight (or a cool text reader); you have comprehension skills.  And, the ability to refocus your perspective on THE JOY OF GETTING TO PLAY THE GAME.  On the opportunity you get to engage in a corner of life in this universe each day. 

So Los Angeles is seeming a little better, because I've remembered that I can MAKE it so by focusing on different things.  Here I'd been thinking that all of the Angels had fled this city.  Actually, they're all around me, milling through the crowds that sometimes feel overwhelming, waiting to remind me that, while I haven't booked that "big" job yet,

I've discovered surprising nuances in old monologues, and become a better actor.

I'm planning a play festival.

I've auditioned for theatres, shows, and casting directors that some actors would only dream of.

I'm traveling overseas this summer to a conference in a country I've wanted to visit since gestation.

I've met countless fascinating people with mindblowing tales.

I've coached friends with acting, and they've gotten roles.

I've build strength in my abdominal core that I didn't know still existed.

I've filled my belly with amazing food.

I've taught myself several chords on the guitar...enough to craft a song.

I've changed the course of a new play by serving as an advisor to the playwright.

I've enlightened people to the possibilities that exist when you stop assuming that people CAN'T do things.

I've counseled numerous friends through the most challenging of life moments. 

And, I've started laying down ties for the tracks that I'm gradually building in this town, and showing dubious folks that a girl with a dream - wheelchair or no - CAN do this.  It just takes time, perseverance, and a willingness to engage and risk.  And maybe a little education that humans who ambulate in wheelchairs aren't cement blocks, and can actually move (surprisingly, assumptions to the contrary are quite common).  

Mostly, I HAVE PLAYED THE GAME.  And surprise, we're only just in the first quarter.  So you'd better gear up, and play.  Today begins the new season.