Very Special Episode

"Gloria's Boyfriend" is an episode from the fourth season of All in the Family (2/2/74 is when it first  aired).   Just stumbled onto it a little bit ago on cable, and then rewatched the episode on You-Tube (here).  I spend a lot of my time trying to figure out how to help job seekers with developmental disabilities access good jobs in the community, and "Gloria's Boyfriend" is all about that very topic, albeit a little dated.  And yet the way the subject matter is handled and worked through reminds me of how much things really haven't changed too much.  Possibly the language has been overhauled (the "R" word is used both pedantically and insultingly in the episode), but the actual tropes and metaphors and fears still kind of linger when you approach the idea of someone labeled as developmentally disabled being able to be a part of the workforce, a contributor to the way we all get things done everyday.

 "Gloria's Boyfriend" tells the story of George the Box Boy at Ferguson's Grocery, and the one day he brings the groceries home as a favor to Gloria.  It's obvious he has a crush on her, and for a minute or two you get the feeling that's the creepy direction the story is going.  But the actual narrative gets focused around a subplot, in which Archie and Michael are using an adjustable bench-plane to help refit the upstairs bathroom door that isn't shutting properly.  That door becomes both a metaphor and a plot device, as does the faulty tool Archie is using:  the bench-plane's blade is not yielding any wood shavings as Archie glides it across the door. 

In the episode, George is given to us as a big, sweet guy who is a little slow, but capable of expressing himself as well as having the ability to understand when he's mistreated  and when he's welcome.   The conversation about him among the Bunker clan is a survey of the ways people with developmental disabilities have been represented and seen over the course of the 20th (and now 21st) Centuries:  menace, innocent, deviant, oversexed, simpleminded, and so on.  The pendulum from "how sweet" to "how dangerous" is quick and steady, especially when Archie talks.  In fact, Archie in the episode is a sort of stand-in for the way many people understand what "developmental disabilities" are.  He's constantly warning his daughter to watch out for George's advances ("Stop getting him all excited -- people like him have a one-track mind," he says), while when speaking directly to George he's condescendingly kind and didactic (he tells George to take a break, sit and watch as Archie and Michael try to whittle down the door so it'll fit, using the tool that does not work). 

The crisis moment comes when Archie again speaks to Gloria about the possible dangers of her friendship with George, and George overhears.  Archie feels the need to spell what he considers is George's main diagnosis and prognosis:  "You gotta be careful around a d-u-m-m-y."

It turns out George can spell, and he tells everyone that in fact he's not a dummy, and he's going to show them all he's not.  He runs out the backdoor.  This instigates a conversation among all of the family about how George from Edith's perspective is a "nice gentle boy," and Archie counters with examples of "his kind" from movies like Of Mice and Men and The Hunchback of Notre Dame, while Gloria and Michael defend George as "special" and "retarded," but able to work and live in the world just like anybody else. 

Later in the day, Gloria goes back to Ferguson's to get ice cream, returns to tell everyone that George has been fired.  They all hope it wasn't because they asked him to stay a while earlier, and also because of what Archie had said.  Then a knock at the door, and George's dad comes to find out where George is, as he had heard from Mr. Ferguson about the firing, as well as the fact that George's last delivery was here at the Bunker's.  Another history and

"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." 



Mask Theory

Friday I had a phone conversation with someone at the end of my work-day so truly frustrating I got so angry after it I felt as if I weren't going to be able to think for the whole weekend.  It was one of those fumy, funky feelings you get when you are confronted with a point of view so completely outside of your own it feels as if you've been kidnapped and thrown in a basement for a while. 

The different point of view has to do with all kinds of stuff, but mainly the topic of heated discussion was about the people with developmental disabilities we were both trying to support.  I'm not going to get into anything specific because it's not worth it here, but I figure I might as well blog about the Big Issue which is:  how do you separate people from their historical origins, from their tropes?  How do you pull the "type" away from the way you talk about and connect with them? 

The person on the other end kept laying claim to people, as in "my clients," or "my people," and I just don't do that.  That "my" becomes plantation-esque somehow, indicating an ownership that feels grounded in institutions and brainwaves from the past.  I think the fury I felt truly came from that alone mainly, hearing that "my" over and over and over, and then today rehashing the whole thing I thought about Diane Arbus' photographs of people with developmental disabilities taken during a Halloween party at a state institution back in the early 1960s.  One of them is above.  Somehow that "my" is trapped in that same moment above, that cryptic, masked sense of no-self, no-determination, no-ambition, just a group of identities only given identities as a group.  

How do we help get rid of those masks?  How can we separate the way we think and act from that instant classification, that instant knowing what's best, that "my-ness"? 

One way I guess is by always knowing what's up, and by not saying the "my" and also knowing why you don't say "my."  Still that's just semantics, still just a version of self censorship.  The move to make might be empathetically created (as in "I wouldn't only want to be thought of as only part of a group," etc.) but also it has to be functionally practiced.  We often think of ethics as only connected to an HR training or a high school course we took and slept through, rules that don't really matter outside of saying they do, ephemeral pontificating.  But ethics, in the way I'm trying to figure them out, are only important when acted on, as in erasing that ownership sensibility by understanding its weirdness and unkindness and moving forward from that, outside of platitudes, outside of words.  Doing something about it.

It was words, of course, that pissed me off so much on Friday.  That and the fact it was Friday and nobody wants to get into a work argument or any kind of argument on Friday afternoon.  But the words highlighted something very deep:  you can't take action until you figure out what's wrong with the way you're thinking about the actions you take. 

In this stuff, ethics are so important because they can allow you to unmask yourself.  And without a mask you, and everyone else, can see exactly who you are.

   

Groundbreaking

Earlier this week, I was at a conference organized around the idea that people with disabilities can have better lives if they get jobs with real wages.  This seems like a truly simple and true assertion, but also like anything that seems simple and true the idea is fraught with complications because, well, it's people.  You just can't make assertions like that without considering history, perceptions, experiences...  And you can't really assert anything for sure when talking about "people with disabilities" anyway.  That's a category, not actual people, when you get down to it.  Actual "people with disabilities" are individuals with all kinds of different needs, talents, interests, brilliances, predilections, shortcomings, etc.  In short it's hard to make something concrete out of something so abstract.

But maybe you have to.

The conference gathered together all kinds of folks, from people with disabilities (all kinds of disabilities, developmental, physical, and so on) to their families, from social workers to business people.  There was an energy in the air; maybe I'm making that up, but still...  It felt electric somehow, and serious, and everyone was paying attention to what's currently going on.  Supported Employment for people with disabilities is not a new idea of course, but this time we don't have the luxury of maintaining the status quo while pontificating and talking about "change."  We have to make it happen.  Medicaid rules are changing, and Medicaid funds the majority of supports for people with disabilities.  The changes are about prioritizing toward helping people have as much independence and equality as possible.  The rules changes come from all kinds of places within the federal government, not just Medicaid (Department of Justice and Department of Labor are in on it too, which makes sense, because the issue isn't really about social programs as much as civil rights and labor rights:  95% of people who don't make minimum wage on their jobs are actually people who go to sheltered workshops), so it's really hard to ignore. 

This time it's top down in ways it's never been.  And on the ground are large programs/buildings/workshops that have been doing  business for decades in ways that the Feds are now calling unfair and possibly illegal. 

What does this mean?

It means maybe we who have jobs supporting people with disabilities, especially those with developmental disabilities, have been looking at the situation through the wrong set of eyes.  We often see issues for the people we support as programmatic.  How can we alter programs to help people?  But actually we should be looking at not the programs, but the results (the "outcomes" in government-speak) of those programs.  And the results just aren't that great; in fact they have kept a lot of people in situations they could possibly break away from, if only the programs they are in were in question.  In other words, the question should be, "What is happening in this person's life?  Is he/she getting what he/she needs to be successful?"  As opposed to the question we usually ask, "What program does he/she need to be referred to?"

Ronald Reagan (I know a lot of people will probably not like me quoting the Gipper, but what the hell?) once said, "The best social program is a real job."  And even though it's hyper-complicated to make results/outcomes happen, that's basically what we are talking about here:  how do we help people make a living wage?  How do we help people secure success (without the program getting in the way)?  How do we support people to be the best people they can be?

  

For better or for worse, this process of being the best you can be often has its foundation in what people do for a living.  And if you take that possibility out of the picture, you often are grasping at straws.  I've met a majority of my friends through work.  A majority of my identity as a person is informed solely by my job.  I've spent 36 of my 49 years working in restaurants, libraries, group-homes, etc. Yup.  I started at 13, riding my jankety moped to the Irish Point Restaurant in Pendleton, Indiana so I could be a car-hop and grill-cook.  After that I moved on to Kentucky Fried Chicken, Rax Roast Beef, Ponderosa Steakhouse, and so on.  I developed a work ethic through the process.  I think I may have learned more real lessons at all those jobs than anything I ever learned in school and college because it's all about putting yourself in the middle of things, being "in" the moment, and understanding you are a part of the world that is needed, that you have responsibilities and you are counted on.

By blocking entrance into this sense of responsibility, through programs, through good intentions, we who are trying to help people with disabilities are just plain hindering them.  We've been doing this for, well, since we figured out we needed to be helping.  We've constructed large programs and facilities that are about "training" people, but the training has gone on for decades without any results.  We're good at wanting to help.  Not so good at actually doing it.

So now there's a shift.  And I'm hoping it's for real.  I have a feeling it is.  Because at the end of the day the reason I chose this line of work is to not be a part of a program, but a part of a movement.  That sounds lofty as all get out, reminiscent of hippie BS, but it's true.  I don't have a lot of school spirit, never have, what pushes me forward is making stuff happen:  results.  I think that's true of a lot of social-worker-types, and we just get so caught up in the programs we make, funding them, going through certifications and audits for them, that we forget sometimes what they are there for. 

Anyway, that conference earlier this week truly made me feel like we're on our way toward something, as opposed to on our way to protecting what's already been done.  There may be people with disabilities who can't have real jobs, or maybe who don't want to have them, and that's okay.  What is exciting is that from now on, I think, I hope, the assumption is people can work and have lives and pay taxes and have beers with their buddies after work.  They can be"equal" in one of the truest ways to be equal:  as necessary contributors in getting things done.

Which brings me to Raymond Thunder-Sky. 

That's one of his drawings up there.   (Many more can be seen at www.raymondthundersky.org.)   Having a real job was Raymond's obsession, and he had a few (and also worked for a long time in sheltered workshops), did well at everything he tried, but the job that he truly craved, being a part of a construction crew, eluded him because he couldn't get a driver's license (that's one of the major prerequisites to being on a crew).  So he created a job for himself:  he began drawing sites, setting up shop on the periphery of demolition and construction sites with a toolbox filled with markers and paper. He became a ghost-worker in many ways, sublimating his desire for an actual gig with what he could actually do.  I'm thinking, in the climate of today, he may have been able, somewhere along the line, to get a license with some help.  With some persistence from both himself and his supporters he may have been able to at least try to have that career.  Maybe he would be both a participant in the real world, and an artist commenting and documenting his participation in it.

Anyway you look at it, this is an ongoing saga...  I hope, I truly hope, this time there are actual results.

  

      

Flight Pattern

 

 

Bill had an experience in February and just wrote about it yesterday.  Needed to share it via 2 + 2 = 5.  A great example of that ongoing spirit and conundrum.  Here goes:

 

Several months ago, I went to a sheltered workshop to meet with a young woman who goes there.   She was very excited because they were going to do a performance of “The Lion King” that morning and she had a starring role.  It was about 15 minutes till the whole thing was to take place, so I said I would wait till after the performance to meet with her.

There was a crowd to see the show.  We gathered in a large open area that separated the glass door entrance from the work floor.   It was one of those raw February mornings. The air was cold and rainy.  The clouds outside moved slowly across the ground like sleep walkers, causing the florescent lights in the ceiling tiles to glow unnaturally bright.  Several minutes passed with a lot of frantic talk echoing from the other end of a long hallway.  Last minute pep talks and cue reminders etc.  All I could see were those slow moving clouds out the front entrance. 

Eventually the music started and after what seemed to be a long time without seeing anything a fluttering bird girl appeared.  This bird girl was a tiny woman wearing red sweats, yellow socks, a yellow beaked bird mask that covered her face, and yellow pool-floaties for wings.  I was entranced at that moment first seeing this delicate creature flutter high then low, swooping into the audience and back down the hallway out of view. 

I am probably one of the only people still left who hasn’t seen the movie or the play.  I am pretty sure this performance however took many liberties.  The young lady I was there to see played the lion’s mother.  As excited as she was before it began, her performance was delivered with minimal effort.  It was as if she had worn herself out from all the excitement.  The performance was a beautifully clumsy mess.  However, seeing this bird girl moving, dancing, flying through this florescent lit space into and out of the performance itself, with grayest of gray clouds moving behind her, struck me in a profound way.  It was a silent and delicate thing like Kabuki. It was like she was channeling some ancient bird spirit.  Her flight pattern seemed to carry a message of joy uncomplicated and completely mysterious. 

I will never forget it and only wish I could do something that powerful.



12 Pack

When I used to work in group-homes back when I was in college, every Friday night we would go pick the folks up at the workshop and we'd go help them get their workshop paychecks cashed.  We'd be in the van, picking up 8 people.  I remember some of their names:  Elel, Betty, Welby, Janice.  This was like 24 years ago.  Damn.  But I remember them in my head getting into the van with their checks in their hands, very excited about cashing them so they could go to the Wal-Mart and get their pop.

"Pop" was the word of the evening.  I kid you not.  It was vitally important, especially for this one guy, Tony.  He was kind of bent over with a melted Elvis face, and he wore a uniform to the sheltered workshop not because he had to (they didn't have uniforms for the people who went to the sheltered workshop), but because he demanded it.  The maintenance people (employees who weren't labeled with a disability) at the workshop wore uniforms, and Tony pitched a fit so they let him buy himself a set just to keep the peace.  He had two uniforms eventually for rotation purposes.  He was a very serious person.  He always seemed to be thinking of ways to disassociate himself from the group.  We always went everywhere together, so it is totally understandable:  8 people with developmental disabilities, 2 staff, in a big van.  To the bank, out to eat, bowling, to the park, and like this evening after going to the bank, making that vital pit-stop at Wal-Mart.

We all walked into the store, and all of us went to the beverage aisle, and Tony automatically got a shocked look on his face.

"My pop," he said.  His voice was low-pitched and as a serious as a judge's.  "My pop."

The shock turned into anger real quick.

The 12-pack of red pop he normally purchased on Fridays wasn't in its normal place.  All the other folks had gotten theirs, but Tony walked around, searching out the red pop he always bought.  There were a couple other kinds of red pop, but not his brand.  He started to cry.  Not secret, inward tears, but large guttural ones.  Here was a dude in a janitor outfit, slumped over, with buzz-cut salt-and-paper hair sobbing in the Wal-Mart because they didn't have his 12-pack of red pop.

I know exactly how he felt.  What did William Carlos Williams once write?  "So much depends upon a red wheelbarrow."  Etcetera.  So much depends upon a 12-pack of red pop, it is beyond description.  The other staff person, a morbidly obese lady who really seemed to think of herself as "in charge," talked to Tony in a stiff professional but kind of motherly manner.  I stayed with the other guys on the other side of Wal-Mart.  They were subdued.  They had seen Tony do stuff like this before.  He was totally defeated.  The staff person had to walk Tony out of the Wal-Mart and counsel him in the van.  I went ahead and got him a replacement 12-pack, but he never drank any of it I don't think.

He survived.  But that moment sticks in the my head because I knew right then, in that store, what life was about, witnessing that outburst.  I was 24-years-old.  Working my way through college.  Trying to become a writer or whatever, but for some reason I felt inspired by Tony's desperation and disappointment, not because it was funny or weird or eccentric or wrong, but because it was so intensely human. 

He had counted on one thing, that one goddamn thing, and it was gone.

The Worst of the Worst

The worst movie of 2010 is Dinner for Schmucks.  Starring Paul Rudd as Tim, an uptight/upright executive on the rise, and Steve Carell as Barry, a cipher and metaphor for all things "different" (person with a disability, self-taught artist, a guy with a bad hair-cut and goofy glasses, techy nerd/geek, etc.), the movie is a strange exercise in worthlessness.  You can feel a sort of vapid desperation coming from it, as if the people who made it really were excited about the concept but had no idea what to do with execution. 

So they place two "opposites" like Tim and Barry in kooky situations that aren't really that kooky or worth watching:  breaking into a weird-o artist's loft to confront Tim's gal pal, Barry interfering with Tim's relationships via sneaking outside his apartment, and finally in the flattest epiphany any movie has ever offered:  the dinner for schmucks.  Ths dinner is a mean-spirited exercise by the executives Tim works with to humiliate freaks these executives bring with them without letting the freaks know.  Not only does the whole premise of this dinner sound completely phony, it really is horrible watching the way the actors who play the executives have to preen and be enthused about the freaks they have to offer, as if each one is an offering to the High Class Executive Gods or something, when in reality the Dinner for Schmucks freaks are just your plain, everyday sideshow performers (a ventriloquist who sucks, a psychic who makes bird noises, a guy [not even a lady] with an extravagant beard, etc.)  The movie does not even have enough imagination to invent really freaky freaks.  If the writers and director had, the movie might have snapped into a surrealism that's both mean-spirited and takes flight, an unforced riff on Todd Browning's 1934 picture Freaks maybe, or a reinvention of the whole genre of man-boy movies (usually starring Will Ferrell) this movie seems to be the death of.

But nothing works in this thing.  It has a soullessness borne from a one-note joke that really makes no sense.  It's like the kids in Carrie grew up into big-time white-collar workers and they have evolved their antics into parlor games.  But it's not even like that either.  It's just laziness.  Bad art.  Every scene goes on too long, every gesture and moment manufactured for big laughs that never materialize.

Poor Paul Rudd.  He's been turned into a sweet-guy robot.  And Steve Carell's Barry is just a flaky, ticky non-character used to represent what all of "us" aren't:  normal sweet-guy robots like Rudd.  What's kind of even sadder is that Barry, like most other people with disabilities in movies like this, is used as a foil to provide a redemption for Mr. Sweet-Guy Robot.  He's a throwaway novelty, that crazy loser!  But God love him.

The only thing that really is worth watching:  the opening credits.  The Beatles' "Fool on a Hill" plays over beautifully photographed versions of Barry's art and pastime:  taxidermied mice in elegant poses, like a boy mouse pushing a girl mouse on a swing, etc.  These dioramas make more sense in their static precision than anything in this awful movie.

A diorama Steve Carrell presented to David Letterman when he was on promoting Dinner for Schmucks.