"The Machinery Disposes of the Words Like They Weren't Even Spoken"

   



I'm rereading One Flew over the Cuckoo's Nest by Ken Kesey.  I do this every few years just because I love the velocity, complexity and artfulness of the prose and hope it rubs off on me.  But also I revisit the book because its meaning seems to expand more and more every time I go through it.  Upon first reading it way back in the day I loved the brash radical bravado of McMurphy, the way he swoops in and tries to save the day, only to be  vanquished by evil Nurse Ratched.  In that reading, it's almost a classic fairytale in its use of simple, willful tropes:  big bad lady nurse/administrator/jailer vs. big brash redheaded lumberjack/gambler/anti-hero.  Other readings though revealed for me the slightly silly counter-culture swagger, the moments built to humiliate just for the hell of it, the self-congratulatory feeling sometimes involved in pitting such elemental examples of "good" and "bad" against one another (not to mention the overarching racism involved in the "black boy" orderlies, and so on). 

Still, every time I read it I come away with an odd respect for its sense of urgency, the burning need to get at something profound and devastating in the simplest and yet most harrowing language and style.

And much of that style is manufactured because Kesey uses Chief Bromden as his narrator.  You could argue that placing Bromden on the periphery and giving him the chore of narration is a form of racism, of framing McMurphy's story through the eyes of the oppressed so McMurphy's oppression can be heightened to the point of Beatnik glamor, but this time reading Bromden's voice really truly got to me, in a way it hasn't before.  That exact moment of total connection for me came on page 182, when Bromden is at the end of a flashback concerning a time when he was a little kid living on the reservation, and he's outside the house he lives in sprinkling salt on salmon he and his dad caught.  A group of speculators and government workers pull in.  They are visiting the reservation in order to talk to his father about buying the land the reservation is on for cheap, so they can build a dam.  These characters, like many in the Cuckoo's Nest, are grotesque versions of people Kesey obviously found disgusting -- bureaucrats and landowners and other bourgeoisie types stomping around the world looking for every opportunity to screw it up.  But somehow in this moment the grotesque enlightens and does not obscure, and the oppressors glide through the reservation, ignoring Bromden, who wants to tell them he can understand the horrible things they are saying to each other, that he is not invisible.  But when he does speak to them, all they do is ignore him. 

This is the passage that truly got to me:

I can see the seams where they are put together.  And, almost, see the apparatus inside them take the words I just said and try to fit the words in here and there, this place and that, and when they find the words don't have any place ready-made where they'll fit, the machinery disposes of the words like they weren't even spoken.

How amazing is that?   A simple, calm and very accurate summation of what it means to be someone totally on the outskirts of meaning, totally trying to rectify a situation that can't be rectified.  This flashback lets us know the origin of Bromden's philosophy, his use of the "combine" as metaphor for way the world works:  the "machine" must be fed and constantly repaired, and if you can't cut it as part of the machine, then you to have to be "fixed," have to be institutionalized, tinkered with, eventually de-brained. 

Maybe my sensitivity to this moment in the book comes from what's going on in my work-life and -world.  I keep going to conferences and  meetings about how to help people with developmental disabilities get jobs in the real world, in effect often revamping the way they and the people who love and support them often see what they are capable of.  Sometimes in those meetings and conferences I can almost feel that sense that Bromden felt that day outside his house when the government workers come to pay a call:  everyone is talking and talking, and filling in the blanks, but no one is listening, and no one is trying to understand how all of this talking contributes even more to the sense of victimhood and powerlessness and futility.  Helping people who have developmental and physical and other disabilities be a part of the world, to get employed and be able to contribute in vital ways, is one of the most complicated and scary enterprises you can attempt not only because of the skills the people you're trying to support may need to acquire/work on to get a gig, but mostly because of the way they are perceived, the way they are ignored, and mainly the way they are institutionalized almost as soon as they get a diagnosis.  Even the systems meant to "help" them group them into categories and statistics in order to manage their care, and once the systems take over the words just "don't fit."  Like Bromden I'm seeing the "seams" all the time, and that sense that when the words are found not to fit the "machine disposes of the words like they weren't even spoken."

How do you disrupt the machine?

I don't think by screaming or pleading to it.  The machine does not give a shit.  It's simply by sticking to your guns, I guess, never allowing yourself to be mechanized or put into place inside that ongoing machine.  You don't talk.  You don't show off.  You don't make speeches.  You listen and you move forward and you make things happen outside of the machine, in spite of it.  

At the end of the book, even though McMurphy is the symbol of what it means to be alive in a cookie-cutter culture (or maybe it's because of it), he is lobotomized and brought back into the institution on display for everyone to see.  Nurse Ratched wins.  And yet Chief Bromden escapes the institution that same day, bursting through a window and running into the wild.  His voice in One Flew Over the Cuckoo's Nest, beautifully desultory, matter-of-fact, brutally poetic, drives the story home to the point he can no longer live in the place he once called "home." 



Max's Story

 

 

 

Parenthood is over.  It's one of those classic network TV dramas they probably won't make ever again, not a lot of cool factor, not a lot of anti-heroes and super-sleek dialog and broody, alpha-dog pretensions (True Detective, Breaking Bad, House of Cards, etc.).  Parenthood just did what it needed to do, detailing the lives of a sweet, sometimes loud, messy, middle-class family in Northern California as they live their lives (and sometimes got into a few trumped-up, only-on-a-network-TV-hour-long-drama situations).  I've always been a big fan of shows like this, from thirtysomething on, because they have a soothing comfort emanating from their very cores, an optimism that doesn't seem fake as much as utilitarian in a heightened way:  people getting by, only in better clothes and better light.  Like the family hour-long dramas before it, Parenthood transforms domesticity by trying very hard to be real, elevating banality into a beautiful consumerist Utopia:  backyard candle-lit family-style dinners, low-key folksy alternative music defining scenes, set-decorated kitchens and living rooms and bedrooms and other spaces radiating that lived-in loveliness, but also somehow perfect, like museum exhibits with people added in.  You just want to jump into those scenes and be a long-lost relative with your own narrative arc, your own Iron and Wine song on the soundtrack.

 

The one narrative arc I want to write about the most is Max Braverman's, played by Max Burkholder.  Diagnosed at the beginning of the show with autism, Max's story has always been defined/coded/enlivened/oversimplified by that labeling, and yet without the label Max would not be Max.  Which is always the problem with representing people with disabilities in pop culture:  you don't want the diagnosis to be the only narrative force, and yet you can't ignore the force of a diagnosis on someone's story.  Parenthood worked all of this tension through allowing Max to be both a "hindrance" and a "blessing" and then getting rid of that binary and getting down to business by allowing Max to grow up just like anybody else.  The one phony and kind of dopey road the show took was allowing Max's mom and dad, Adam and Kristina Braverman, penultimate helicopter parents, to open up a special charter school for "people like Max," so he could be "protected" from bullies and other obstacles.  The school opened the beginning of the second-to-last season, and it really didn't come to any kind of dramatic fruition in this season:  it became a blank space, occupied by a nameless cast of "people with autism" peopling the background while Kristina and Adam figured out how to run it.  Max was a student there, and he got into just as much crap as he probably would have in any other school, but the show's folksy, romanticizing, politically-correct gaze made the school seem idyllic without showing us what "idyllic" means. 

 

But still, there was Max, at the end of the show, all grown up, with a camera.

 

The camera is the key.

 

Max was introduced to the camera by Ray Ramano's Hank Rizzoli, his Aunt Sarah's boyfriend who also turned out to be her one true love.  Hank, a professional photographer, through meeting up with Max, soon discovered that he himself was "on the spectrum," and Max and Hank's relationship blossomed from awkward side-glances to a true friendship/mentorship.  Hank taught Max the professional-photography ropes, Max got an internship, a summer job, and then finally, by the end of the show, a career path. 

 

When characters with developmental disabilities on TV shows like Parenthood appear, they are often tokens or background music, ways to define other people's kindnesses or meannesses.  In Parenthood, though, Max is given agency and desire, and he is also allowed to discover he can do things, he can have a professional life even though he's been labeled, consigned to a "special school," and often the object of ire and derision, when not being overly comforted by his sweet parents who just want him to be happy. 

 

Max's narrative arc, from lost boy to wedding photographer, is heartening because it pushes away notions of consignment, and allows us to understand the way "community" actually is supposed to work.

 

"Community" is one of those buzz-words right now in the business I'm in, trying to help people with developmental disabilities make lives for themselves.  Right now, the service system is in a tizzy because of rules and regulations coming down from the federal government concerning both "congregate settings" and "employment."  These new rules are borne out of a civil-rights-minded way of thinking about service-delivery to people, not a "medical model" notion of services "fixing" people.  Supports that help people with developmental disabilities become a part of the world are often funded by Medicaid:  services like in-home help, transportation, recreation, and job coaching are more often than not paid through that program.  And the feds have been working on ways to use this old-school funding system as a way to change an old-school cultural system.  This is making everyone I know kind of nervous. 

 

The history is pretty bleak:  people with developmental disabilities grouped into programs that "help," but that also isolate and sustain isolation as a way of life.  The new Medicaid rules are saying that Medicaid funds aren't going to pay for "congregate" service-delivery:  no more sheltered workshops, no more day programs in anonymous strip-mall buildings, etc.  So a lot of my colleagues are nervously waiting on how the feds are defining "community."  It's a topic of conference sessions, blogs, newsletters.  What is "community" going to mean in the context of funding rates, providers, programs?  "Community" this, "community" that.

 

It's kind of funny.  I think we all maybe know innately what "community" means, and yet now the "official" definition is coming down from on high, and this makes people anxious and angry. It also makes them skeptical and short-sighted. 

 

Parenthood may have it right somehow,  Even though they started down the road of a congregate "special school" where people like Max are consigned to be "helped," the actual narrative arc defining Max has nothing to do with the service system he's in.  He is able to discover what he wants to do, what his passion is, what his future night be, by living it like any other kid.  He got a camera.  He fell in love with what he can do with a camera.  He got help through his aunt's fiancée.  He got encouragement from his family.  He's on his way.

 

I guess that's what I'm trying to understand in real life:  how to help people discover that narrative arc that will set them on a path to what they need and want to do, so that the service system won't define them; they will define the service system.  And building "special buildings" and "special programs" just doesn't seem the right technique.  It's about figuring out how to make situations happen without waiting on permission.  It's about life as it's lived, not programmed or paid for.  Medicaid more-than-likely will have to be a part of it for a lot of people, but now even Medicaid is saying, "Let's stop the madness."  I like that, I guess.  I don't want to cling to history, don't want to depend on the past.  I don't want to wait around for what "community" means either.   

Ready for the World

 

 

Last Thursday night I was lucky enough to attend a screening of A Whole Lott More, a documentary about a sheltered workshop being shut down in Toledo, Ohio.  I also was a small part of a panel discussion right after with the movie's three stars:  TJ Hawker, Wanda Huber (pictured above), and Kevin Tyree.  A Whole Lott More was directed by Victor Buhler, and Buhler's focus and dedication to showing every aspect of the shutdown has a procedural quality to it.  He concentrates intensely on a moment in time when a lot of people are struggling with past, present and future.  The past, in this case, is symbolized by a large sheltered-workshop facility in which many people with developmental disabilities have worked for most of their lives.  Back in the day, the facility was going gangbusters with contracts from Detroit car manufacturers, but as the economy has shrunk so has the contracts.  The present is dramatized through the lives of TJ and Wanda, who both work in different capacities at the workshop, and Kevin, who is transitioning from high school to work and has chosen to look for a job in the community.  Their struggles with work comprise one aspect of the film; the other aspects revolve around non-profit and governmental agencies and boards battling for control of the future, trying to figure out how to support people with disabilities in capacities that transcend programs and buildings and the past.

 

In many ways this documentary is a ghost story, and the Lott Industries work facility is a haunted house that has outlived both its cultural and economic purpose, and yet the people who worked there and were supported to be there did not experience it as anything other than the place they worked and socialized and went to every day.  The symbolism gets lost when you're living your life, as do the politics and the controversy.  That's one of the more profound themes coming from A Whole Lott More:  we live our lives in whatever systems, codes, rules and values surround us, and making fundamental change happen often isn't about the will to do it as much as having the patience and dedication to reinvent and reimagine the environment in which the change is taking place.  That building full of folding tables and windowless walls and concrete floors is more than the sum of its parts:  it was a refuge, a place for people to know what they were and where they fit.

 

I work everyday trying to help figure out how to support people with disabilities to get jobs in the real world, but it's incredibly hard in a universe where sheltered workshops, and the concepts and mindsets that helped to build them and staff them, still exist. These buildings and symbols often become the only answer and the only vision, places and programs and cultures where waiting for a job becomes the job.  And everything else follows:  businesses, employers,  supported employment service providers, families and the people being helped all get bogged down in a status quo that supports preconceived notions, the main notion being:  you're just not ready to be in the real world.

 

And I know "real world" is a prejudicial term, but still the concept of isolating people and then training them to return to the world rehabilitated more often than not eliminates the possibility of a chance at individuality.  It assumes you deserve a uniform group status, a place where you can only hope to ascend once you figure out you can't.  That hopelessness often becomes a way of life, and that's okay because you don't have any alternatives.  In the movie, Wanda lets us know about her employment history from the get-go, saying when she was younger she went to Sears and K-Mart and applied but they turned her down, she said, because they saw she was disabled.  "I don't want to be a part of a community that does not want me."

 

I totally understand that feeling.  Of course she doesn't.

 

But is that the only dichotomy we're dealing with?  I hope not.  Maybe the discussion isn't about a sheltered workshop being shut down, but maybe the conversation is about the rest of the world?  What if the concern wasn't about the closing of an institution, but the promise of what's "out there" waiting for people to come and get it with a little help from their friends and the people paid to help them?  What if systems and bureaucracies, instead of turf wars, got into a discussion about how to figure out how to make more and more and more connections, more and more actual job opportunities, more and more business opportunities, knowing that there's no alternative?

 

Kevin is the representation of this line of thought in A Whole Lott More.  He never became a part of the workshop culture, and from graduation he pursued getting a job.  That's fraught with all kinds of dangers of rejection, dead-ends, and all the other obstacles in the way of anyone pursuing employment, but he kept trying, just like anybody else, and he finally got a job at Best Buy, even though he truly wants a job in a library.  He settled, but still has a vision forward. 

 

I think all the folks involved in this film are heroic in all kinds of ways, because they are all in pursuit of  a decent wage, a decent life, and a little dignity.  I completely understand how the Lott Industries facility that shut down was a space that held a lot of great memories involved in that group struggle, but at the end of the day I know that everyone who worked so hard within those walls should have a chance to give a try on the other side...

Don't Quit Your Day Job

 

Bill, Antonio and I had lunch at Dusmesh today, this little Indian restaurant near Cincinnati State in Clifton.  The buffet is amazing.  I wanted to touch base with both of them about the idea of supporting creative, hard-working, unconventional people (like Raymond) to get jobs, using Thunder-Sky, Inc. as the platform.  So I asked Antonio what he thought, and one of the first things he said:  "Don't quit your day job." 

 

He also said, "You can be an artist but you can't sacrifice yourself."  I asked him what he meant by "sacrifice," and he said, "You have to make yourself a living.  You have to have a roof over your head."

 

We talked about employment for people with disabilities and how Raymond was a prime example, and how Antonio is a living example.  Antonio went through his mental Rolodex and out came all the jobs he's had since high school:  a lumberyard, a Blockbuster video, Goodwill, and since 2002 where he is working now, Frisch's Big Boy Restaurant.  He said he has been there at Frisch's so long that he now trains in bussers, showing them how to do tables right, how to unload tubs, and where the trash goes.

 

Bill and I also talked about how Raymond used to go to Goodwill over in Woodlawn, and Antonio said that he and Raymond sometimes used to work side by side there, before Antonio got his job at Blockbuster.  What a beautiful image that is:  two great artists and people working very hard during the day, and individually making works of art whenever they could.  Evenings, weekends, afternoons after work.  If made me think about how working a job sometimes helps people produce better art because it gets rid of the BS and the procrastination inherent in being a fulltime anything.  You only have a certain precious amount of time to create, because you're either going to collapse from exhaustion or you have to go in early to cover somebody's shift.  That creative time to make something gets prioritized and you truly know what you are making has to exist, not because someone is paying you for it but because you have sliced out this moment of your life to do it and it has to get done.  The pressure applied is your own, and that beautiful pressure can be seen in Raymond and Antonio's art:  there's no excess to their drawings, paintings and sculptures.  They seem preordained somehow, because I bet you they were thought about while doing the work they had have to do to get a bonafide paycheck. 

 

Joseph Cornell, one of the best known self-taught artists, had day jobs.  A whole lot of them.  He worked throughout his life as a wholesale fabric salesman, a door-to-door appliance salesman, a worker in a plant nursery, and a defense plant janitor. He also, when not working for a living, helped take care of his brother who had cerebral palsy.  Somewhere in there he made his shadow-boxes and dossiers and photographs and movies.  He was reclusive, creative, a little strange, and yet he lived his life like most of us do, earning a paycheck, taking care of his family, and making art.  Probably in that order.  And yet he was able to produce a body of work that boggles the brain.  The point isn't that all of us are versions of Joseph Cornell.  Most of us aren't that talented and inscrutable.  The actual point is that most artists have to do what Cornell did, piecing together an existence in order to make what they need and want to make.

 

I guess that's why I think pulling together an employment agency/organization for people with disabilities using Thunder-Sky, Inc. as the foundation makes sense.  I'm sure most people will find it odd, but what I love most about Raymond, and Antonio, is their unpretentious, completely organic merging of art and life, so that the two interchange seamlessly.  In Raymond's case, he used his desire to make art and to make a living as two forces that combined to create his iconic persona.  In Antonio's case, when he is at work bussing tables, he is thinking of all the drawings he is going to do when he gets home, and when he has time time to do the drawings he remembers the toil and frustration and joy of working and that informs what he does.

 

Don't quite your day job is not a presciption.  It's a formula for success.  And creative artistic people who happen to be labeled with some kind of disability often don't need that much help with making art as much as they need assistance in making a living.

 

April 26, 2013, 6 to 10 pm, we're doing the opening reception for Antonio's next gig at Thunder-Sky, "She Blinded Me with Science."  This one is a collaboration with Pam Kravetz and Matthew Waldeck Sr.  It's going to be a blast. 

 

In the basement we're going to have a makeshift "whiteboard" for people to write down what they think Thunder-Sky, Inc., as a non-profit organization, might look/feel like in the future.  One of my main contributions is going to be that Antonio quote:  Don't quit your day job.  And under that I'm going to write:  "Thunder-Sky Industries."  That's the name I'm floating for this little endeavor.

 

Stay tuned.     



Now Hiring





 

 

Raymond wanted a job more than anything else in the world.  Bill and I talk about that sometimes.  What does "having a job" mean anyway?  What did it mean to him?  Here was a guy who couldn't really speak that well, who seemed a little bit, well, weird, to people, and who had a passion for life that seems freakishly beautiful now.  Here was a guy who created a persona and lifestyle out of what he wanted and expected from life, and that persona and lifestyle became an iconic spirit that haunted this little city we live in.  At the core of that self-made identity is "construction worker."  (The clown stuff is decoration; the foundation for his identity, the outfit Raymond festooned with a clown collar, was overalls.) 

 

When you go through the stuff he left behind, you find the accoutrements of the working class.  Tool boxes, fluorescent mesh vests, hard hats, gloves, overalls.  You find the wardrobe and tool-chest of someone who spent his life working.  But because of his disability, and the obstacles that caused, he was often shut out of opportunities.  Raymond had a dishwashing job at a hotel downtown when he was young.  He had a job for a time at M. E. Heuck, a manufacturer here in town of household products.  Toward the end of his life he worked in the sheltered workshop at Goodwill in Woodlawn.  But Raymond's true calling was construction work -- probably influenced by his father.  Raymond craved, to the day before he died, getting a job at a construction joint.  Bill can tell you the story about Raymond calling him that day before he passed away, wanting to fill out an application.  The killer for Raymond's dream was that no construction company or utility company would hire him because he didn't have a driver's license.  Plus maybe because of his disability.

 

I wonder if Raymond were around today if we might be able to help him get that job he wanted.

 

God knows we helped him have art shows.  He loved that.  But I always had the suspicion, so does Bill, that he resorted to the drawing because he couldn't be a part of the action he was inspired by.  He invented a position for himself:  documentarian, recorder of demolition sites, utility digs, street work.  He set up his equipment along side those sites not only to draw, but to be a part of what he was drawing.  And a lot of the construction and utility workers we've spoken to concerning Raymond remark on this.  Raymond became a part of their team, but not on payroll.  A lot of the items in his archive (the tool boxes, the hard hats) were gifts to him from "co-workers," people who wanted him to be a part of the action, even though they didn't know any other way how besides giving him assorted props.

 

What if Raymond would have had a job he loved?

 

I think he would have still made art.  I think his work would have informed what he did artistically.  He would have been happier maybe.  Maybe he would have lived longer?  Who knows?

 

So as I look toward the future I'm thinking one thing we might be doing is looking into creating an organization that somehow helps people like Raymond -- creative, energetic, focused people -- get real jobs.

 

Maybe this is the next move to make?  We have created a day program with a mural commemorating him on it.  We have created a gallery in his name.  What about an organization that is focused on the most important issue of his life:  getting hired.  Making a living.  Actually being a part of something, and getting a paycheck for it.

 

Stay tuned.

 

Below are items from Raymond's archive that touch on his love of work.  The notes are notes to himself to inquire about employment, probably jotted down while he was on his way to a demolition site to draw.