Stop and Think

Yesterday I was in a meeting with a bunch of smart and capable colleagues, but we seemed to be unable to figure out how to talk to each other, outside of stating our solitary purposes, listing complaints, and finally there was the weather.  It wasn't a work meeting with an agenda.  It was an informal get-together at lunch for all of us who work in the same region, and although we work within the same bureaucracy we have different jobs, different approaches.  Different philosophies.  I've given "different philosophies" its own sentence status here because I think that's what made the whole shindig feel awkwardly unnecessary (at least to me):  the differing ways of comprehending what we are trying to do totally got in the way.  

I felt out of my element with these folks, but also somehow above-it-all, quintessentially shut out, but connected to some other stratosphere, some other form of culture.  Although everyone at this lunch was interested in supporting people with disabilities to the best of their abilities, we seemed to have conflicting ways of looking at, and probably doing, the work.  But we couldn't voice those conflicts because we were so busy talking about our own little realities and problems and crises.  

"Philosophy" might be too big of a word here, but what other word is there?  

Here's Merriam-Webster's elucidation:  Philosophy is "the pursuit of wisdom: a search for a general understanding of values and reality by chiefly speculative rather than observational means: an analysis of the grounds of and concepts expressing fundamental beliefs." 

It's values I'm talking about, beliefs, set aside from observation.  That gets scary when you're sitting and eating a grilled chicken sandwich with people who also are dedicating their work lives to helping people with disabilities, but "help" and "support," if they aren't defined outside of systems definitions, if they aren't given a philosophical scouring and inspection, become concepts that slip into discussions of "what works and what doesn't work," as in:  there are some people who can be a part of their worlds, get jobs, have friends, have real lives, but there are other groups of people who can't because they have significant, complex disabilities.  Once that dichotomy gets placed on the table, and there isn't any way to address the values/beliefs/philosophies behind it, the discussion takes on its own sad and tired momentum.  Anecdotes become the main form of discourse.  "Worst case scenarios" take over the way we talk and respond and communicate.

We always end up at a standstill:  if we had more funding, it we had more staff, if we had a better community, if we had better psychiatrists, better family support, better etc.

All of that stuff about needing better support is of course very valid in the lives of people with disabilities, especially people who are labeled with a variety of disabilities, but also wishing for better becomes a way to jettison the discussion on how to make things better.  It becomes a cop-out camouflaged in professional exasperation and eventual despair.  "I guess we'll just need to keep trying" becomes the way to codify failure.  

Of course we need better supports, but we also need to know pretty specifically and meaningfully just what those better supports would be supporting better, if that makes sense.  Because without that kind of an eye on the prize, the reason for doing anything becomes rote activity, becomes an exercise in blowing off steam.

I guess maybe that is what these lunch kinds of meetings are about, but I really feel a link was missing, words were missing.  We didn't know how to discuss anything because we did not have an agreement on what we might want things to mean.  For me, every professional discussion I'm going to have is about how to figure out better access for people to the actual world they're living in, not the program they have to go to.  I'm going to try to guide discussion toward jobs, relationships, freedom and justice and all that, for everyone, no matter what degree of disability has been attached to their person.  With that in mind, then, the lack of resources, the lack of whatever, becomes something we have to work on, but also something we have to negotiate realistically to still get whatever we can done in the meantime, and as we do that we often discover the unsurmountable is surmountable.  "Health and safety," in this context for me, is a baseline, not even the beginning of a journey, but the launching pad for connection, for what's next and next and next.  

If we have a discussion about philosophy first, getting it all out there, then the complaints about what is lacking might become more real.  The reason for trying to solve problems might get attached to something other than the problem being discussed.  We move forward in whatever way we can, whether of not the world and the system and everybody else is ready.  

That's what I'm looking for.  That kind of discussion, that kind of momentum.  I want us to have a "Come to Jesus" moment prior to every professional gig I guess.  

Why are we here?  What's the purpose for all of this talk?  Why are we even trying?  

I hate getting cute, but why not?  I'm going to go the New Yorker cartoon route:

How do you stop and think before you go into the same old routine, the same bitching and moaning?  How do you just stop and think about what all of this is supposed to mean before you move into what's wrong?

Ain't Freedom Grand?

It's been a weird few days.  Good and bad and dreamy and awful and great.  I'm in Orlando, Florida, at a fantastic conference (APSE 2018 National Conference) focusing on how to support people with disabilities to have lives like anybody else on earth;  jobs, friends, places to live, ways to contribute, ways to survive.  It's been lovely to be surrounded by that kind of energy, and to be in rooms with people who are talking passionately about positive but pragmatic solutions, ideas, and concerns.  It's like I can breath.  I took so many notes I don't have any paper left.  

One of the biggest concerns:  the government.  Of course.  What I'll call Trump-nesia, which is the current administration's obsessive need to wipe away everything that was ever accomplished legislatively and otherwise between the years 2009 to 2016.  

Trumps's greed to deregulate, in the context of what I'm writing about right now, is about cancelling out major moves forward in the civil rights battle for people with disabilities.  Executive Order 13771, signed off on in January 2017, (here it is in all its glory:  13771) orders cabinet officials to cut away basically whatever regulations they want to, but in the way this has been implemented of course it's all about drawing a big red line through "OBAMA."  So everyone knows who's boss now.

And that intense hatred has allowed a lot of the federal civil-rights-based laws and guidance for people with disabilities to be jeopardized, especially around the subject of community integrated employment.  Real jobs for people with disabilities, real support.  Guidance concerning the Workforce Investment and Opportunity Act (WIOA) through the Department of Labor, written in 2016, was summarily disappeared almost as soon as 13771 was signed with that Sharpee-sharpness flourish by our new King.  WIOA was a major breakthrough and upgrade in the field, helping to better define what's needed to eliminate workforce discrimination for workers with disabilities.  Now it's gone with the wind, and there's other erasures coming.  Olmstead next?  Or maybe ADA?  And don't forget about Medicaid...

There's hope though that sprang from this conference, from people being informed and outraged and activated and getting it.  The final keynote speech came from Alison Barkoff, a civil rights lawyer who served as Special Counsel for Olmstead Enforcement in the Civil Rights Division of the Department of Justice back in the day (2010 - 2014).  She was scared and angry but hopeful, which is about the only way you can be now.  She ended her speech focusing on what happened a year ago.  When we all got together and laid claim to Medicaid and what it means for people with disabilities.  It ain't just healthcare.  Medicaid funds supports that allow life to go on and happen for people with disabilities.  (I wrote about all that here:  June 23, 2017.)   Knowing that we can do this, that we have to do this, is really empowering but also terrifying because we are gonna have to do it over and over and over and over and over in this era.  

So there's all that.

And I'm here near Disneyworld where the conference is happening.  Which makes the whole thing feel slightly unearthly, like a Kafka novel turned into a big-budget pixelated cartoon.  All this passion and energy around fighting against the forces of darkness taking place in the Magic Kingdom.  Plus the Disney resort I'm staying at is under construction.  Which has an overall Trumpian feel as well:  a resplendent resort where all the staff are called "Cast Members" being added onto, extrapolated, super-sized, beam after beam.  (Picture above.)

And then there's Robert Boremski.  He was someone with autism I knew back in the day, when all of my feelings and hopes around supporting and advocating for people with disabilities really started getting into focus.  He wandered off from where he lived 10 or so days ago.  There were search parties, media coverage, all of it.  His body was found yesterday.  Here's what I wrote on Facebook about him:

I met Robert at a self advocacy gettogether we did back in 2005 in a big kind of wornout hotel and conference center in Tricounty. We set up a room there to make art in and he just came in and went at it without one word. Very gentlemanly and quiet and prolific, making those beautiful simple haiku-like drawings and paintings all day. They all looked like a language he wanted to speak, like a place he wanted to get to. Innocent and ordered and calm. God bless him. RIP. 

That "wornout hotel and conference center" came back into my head, here at this conference center that's currently being renovated.  I remember that 2005 incident with Robert so fondly; it seemed like a breakthrough watching him paint those paintings with such silent excitement, such happiness.  I don't know.  I guess I miss those days, when art felt like it might save the world, when really art just ends saving your soul.  That's a good thing, don't get me wrong, but never enough. 

I definitely felt Robert's passing pretty deeply, even though I haven't seen him in a while.     

Here's one of his paintings Bill and I have :

Gorgeous clarity.  Simplicity.  Kind of like an ee cummings poem.  Sweet and concise but also kind of strange like that, otherworldly.   

I'll say it again:  God bless him.  RIP.

And then there's the Supreme Court.  And the Trump/Putin summit.  And kids in cages.  And fill in the blank.

It's a nasty world out there, and you can really feel it collapsing right now even while a bunch of people are trying to rebuild it or at least salvage whatever vision and version of it they can.  You have to keep on hoping even while you understand the limits of hoping, the limits of hopelessness.  You have to keep trying even though you're sick of trying.    

   

Here's something ee cummings wrote that sums it all up at least for me:

why must itself up every of a park

why must itself up every of a park
anus stick some quote statue unquote to
prove that a hero equals any jerk
who was afraid to dare to answer “no”?
quote citizens unquote might otherwise
forget(to err is human;to forgive
divine)that if the quote state unquote says
“kill” killing is an act of christian love.
“Nothing” in 1944 AD
“can stand against the argument of mil
itary necessity”(generalissimo e)
and echo answers “there is no appeal
from reason”(freud)--you pays your money and
you doesn’t take your choice.  Ain’t freedom grand

 Ain't it though?

A Fable

Remember "The Grasshopper and the Ants"?  It's an Aesop Fable that haunted my childhood at least. Its simple and demonstrative narrative crystallizes a point of view that many people still find enchanting; the theme reinforces a self-aggrandizing mindset that allows you to shut the door on people. It's the timeless go-to water-cooler moment confirming trickle-down chic.

Here it is directly from Mr. Aesop himself (copied from the Library of Congress website):

One bright day in late autumn a family of Ants were bustling about in the warm sunshine, drying out the grain they had stored up during the summer, when a starving Grasshopper, his fiddle under his arm, came up and humbly begged for a bite to eat.  "What!" cried the Ants in surprise, "haven't you stored anything away for the winter? What in the world were you doing all last summer?"  "I didn't have time to store up any food," whined the Grasshopper; "I was so busy making music that before I knew it the summer was gone."  The Ants shrugged their shoulders in disgust.  "Making music, were you?" they cried. "Very well; now dance!" And they turned their backs on the Grasshopper and went on with their work.  There's a time for work and a time for play.

That damn grasshopper and his music.  What  an idiot.  Look at him:  dancing.  Lord have mercy. Now those ants -- they know what they are doing.  

There you have it, every social ill configured for the masses in much the same way the debate is happening around the American Healthcare Act now being secretly drafted and insouciantly marketed by the Congress and the Senate and the President.  The powers-that-be have cast the whole narrative as a referendum on who deserves help, and who doesn't, and in the structure of the legislation their answer on who actually deserves what is pretty clear:  cutting taxes for the wealthy (the ants), getting rid of Medicaid by limiting its use and efficacy, therefore shutting the door on the grasshoppers of the world.  It's not let them eat cake anymore; it's let them dance.  Go on with your bad selves.

It's disheartening to say the least, but also somehow incredibly predictable, and as small-minded and solipsistic as just about any governmental move and mood has been in the history of this country. And the media respond in kind:  they cast artificial light on the "two sides" of the issue, and there it is again, that fable.  The grasshopper dancing (or marching or resisting or protesting) and the ants going about their business, closing down hallways with the help of police:

In the above picture is Stephanie Woodward of Rochester, New York; Stephanie, who has spina bifida and uses a wheelchair, was outside Ant-in-Chief Mitch McConnell's office yesterday when police were called to haul her and other protesters away.  Fables aren't really that instructive a lot of the time; they just recycle old and worn-out truisms that are only true in a vacuum. They are often also a way to pat yourself on the back, concretizing the good and the bad into sweet figurines that fit into a little curio cabinet in a fuggy parlor in people's minds.  Here's the thing: Stephanie and many other folks involved in the actual repercussions of the policy McConnell and his army of ants are creating and trying to implement actually are not "grasshoppers" and can't be assigned an actual role in the American Healthcare Act's ongoing fable.  People who have disabilities need Medicaid not just for medical insurance, but to live their lives; it pays for all kinds of support that allow people with disabilities to contribute to their communities, to participate as citizens, to be in the world.  I know this because I help as best I can many people with disabilities of all sorts access those services, and I've seen the greatness that comes from that support.  And it can't be accessed in any other way, at least right now.  Charitable organizations and churches don't have the capacity; neighbors, friends and family try as best they can, but they get overwhelmed, and some people don't have that many neighbors, friends and family willing to help.  

It's complicated.  It ain't no fable.

I've seen people with disabilities use the community-based services provided by Medicaid go to college, get full-time jobs, get married.  I've witnessed people who were once isolated and ostracized given opportunities to blossom.  I really don't like to call anything a "miracle," especially 52-year-old government programs, but the funding that program provided and provides really did/does contribute to an actual and beneficial change in people's lives, and not just the people who are labeled, but everyone in their paths.  That support made the world a little better; it allowed people with disabilities to be seen and heard and to be able to take part in all kinds of activities/events/moments that were once unavailable, even unthinkable.  And this is help they could not conjure by themselves, no matter how hard they worked, no matter how much sun-warmed grain they stored.  

We all know "entitlement" is a dirty word now, but I feel like we might want to take that word back and re-imagine it as a concept totally worth fighting for.  Not because we're all a bunch of grasshoppers playing fiddles, but because we understand that people like Stephanie and a whole lot of other folks actually are entitled to have access to a world we all share.  And Medicaid is the connection, whether you like it or not.  If we want to have a conversation about how to make it better without decimating it, let's do it.  Otherwise what is the point?  

Yesterday I did something I don't like to do.  At all.  On Facebook I commented on a thread started by a local news station about whether "we should repeal or reform Obamacare."  What a delight.  I simply copied and pasted a short article from The New York Times about how Medicaid not only affects poor people, but how many middle-class families depend on it for their older family-members who are in nursing homes, an astonishing number actually.  

Many people liked my little comment, but one of those pesky ants chimed in:   My parents and my failure to plan for the future should not be put upon the shoulders of others.

I responded:   "Plan" and "afford" just aren't synonymous terms in the real world, at least in my experience. You may have had no failures in your life, and you may not need anyone's shoulders. Good for you. But many people do need help and I guess whether you like it or not we have to figure it out as a country. "Failure" and "disposable" aren't synonymous as well.

At the core of the morality in that Aesop fable is a sense of what is disposable and what isn't; there's a strong whiff of utilitarianism coming off it, as in if you can't fend for yourself, why are you even alive? Why are you here on Earth?  That's also a central underlying message in the American Healthcare Act as it is now:  legislatively it chooses who should have access to health and life, and who shouldn't.  It closes the door succinctly on so many lives it puts those ants to shame.           

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.

  

      

Manifesto

I wrote "The Wedding of Tom to Tom" about 13 or 14 years ago, inspired by my years working in group-homes, especially by the people I worked with and supported.  There were all kinds of memories and images in my head, and when I came up with a story to go along with them I was kind of overjoyed.  This story still sticks with me.  It is sort of my manifesto.  The plot's very simple:  two direct-care staff in a group-home assist two gay men with developmental disabilities to get married, against both the rules of the group-home and the rules of the state.  The two "Toms" have been friends and lovers since they met each other in an institution years ago, and their love truly is how they separate themselves from a fucked-up world.  The main character is a woman who has an ex who just got out of jail, and she turns the secret wedding planning into a version of saving her own soul. 

Link to the story:  "The Wedding of Tom to Tom."
Link to a discussion of the story by students in a Disabilities Studies class:  "Dis/Lit Discussion."
Link to the original images I used for the "Tom to Tom" collages:  "Tom to Tom" images.

One of the major images of the story that continues to haunt me:  "This big hanger building," Dad says, from the podium. Tom and Tom are right there in front of him. "Pink light, like exploding roses. The red-light district. Ha ha. No. A stampede. You gotta hear it. A thousand-plus feet. I am on the other side and I look up and all these shaved-headed people are running right at me in the red light. It's like they just got freed, you know? Like the concentration camp just opened its doors and they got out and they're running. They don't know where they're going or nothing. They're coming right at me. And I want that to happen. I want them to run me over."

What I wanted to do with these collages is reinvent the way I visualized the story by thinking about the totems I used.  I wanted to back away from the story and see it in my head as a sort of silent movie, black and white and solemn and strange.  I did 22 collages in all, on index cards.  I took images from the internet and Xeroxed them, so that there's no color, only a sort of paper-cut contrast. 

Here goes:

Back Flips

I'm working on some collages that do black-flips from where I usually start.  Normally I just grab some old magazines and whatever and start, trying to make each piece as stupid and precise as possible, to evoke a sort of comatose, accidental logic.  Right now, though, I'm trying to make some collages based on a short story I wrote called "The Wedding of Tom to Tom," about two men with developmental disabilities who get married, with help from the support people in their group home.  I purposefully haven't read the story again, but I google-imaged topics that I remembered from writing the thing.  I'm going to take these found images and print them out in multiples and make collages from the fragments. 

Here's a survey of the images I've gathered.  I'll post some of the collages as soon as I do them.  I'm doing this for an upcoming art-show.  More on that later.

"The Kindness that Gazes upon Itself..."

This is a horror movie.

Kathy Lee Gifford's vanity seems to flourish when she's indulging in this charitable act:  over-thanking a boy for befriending another boy who just happens to be labeled "autistic."  She humiliates and condescends without even blinking.  The song alone makes you want to die.  She reduces kindness to ego, and shows off her "sweetness" like a gangster shows off his machine-gun.  The trick to being nice is knowing the limits of your own "niceness" and also understanding what your "niceness" means once it's let out into the real world.  Kathy Lee unleashes her "niceness" at that kid, a huge horrible parade of self-congratulatory bull-shit, wreathed in a treacly meolody. 

Kathy Lee and anybody else who thinks they really are "great people" because they do "good deeds," heed this:

"Verily the kindness that gazes upon itself in a mirror turns to stone, and a good deed that calls itself by tender names becomes the parent to a curse."  (Kahlil Gibran)