"Monking it" in Osaka

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

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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.