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Here’s a speech given by my mother.  Aside from any political values, I think it exposes an interesting language (concept) problem we have in our culture – the idea of inherent character flaws.  I don’t always agree with my mom’s language or her conclusions, but I do agree that attacking our many difficulties in society by labeling groups by some absolute characteristics gets us no where.  It leads no where because there’s no such thing as a character flaw.  We are our behavior.  We behavior based on our values.  Values are established via selection by consequences.  

So when my mom responds to the “What Do We Do With These People?” with the answer that “these” is you and me and everyone else, she’s talking the truth.  

How to improve health care? Big discussion and we certainly should start by getting rid of language and labels that take us further from improving healthy behavior, setting up healthy environments, and talking about the value systems that keep the status quo in place, for the healthy, sick, rich, poor… all of us.

 

Susan Neibacher Address, delivered at the National Health Care for the Homeless Conference

Phoenix, Arizona

Thursday, June 12, 2008

By Donna Smith

 

 

The Experience of Exclusion: What Do We Do With People Like You?

 

 

     Good morning.  I can scarcely believe I have been asked to deliver this address to all of you, and I am so honored to be doing so.  Thank you for including me in this experience and for helping bring me back from the depths of despair and exclusion.

 

     For those of you who have seen Michael Moore’s movie, SiCKO, you know that my husband and I lost our home in South Dakota after suffering through years of healthcare related financial trauma and finding no way to hang on.  We are filmed moving into our daughter’s small storage room or computer room or spare office or whatever you’d like to term it.  And you see our youngest son confronting us about our situation.  He asks us: ‘What Do We Do With People Like You?’

 

     ‘What Do We Do With People Like You?’ 

 

    The words seered my heart and my soul then and they still do now as I recall the fight to maintain what little dignity we had left at that point. You see the moments you see on the screen came only after many years of fighting and falling and fighting and crawling our way back again.  Moving in with our daughter wasn’t our only homeless moment over the past 20 years of healthcare struggle, we had lived in a motel for a while after one of my husband’s surgeries, in a double-wide trailer house that we actually fought to keep as our last vestige of home owning freedom, and when we finally gave up the home you see in SiCKO, it was the deepest and darkest instant of that struggle when I heard the baby boy I brought into this world, the young man who I protected and loved and honored with my life’s work ask me, ‘What do we do with people like you?’

 

     My own son excluded me from the people like him.  Successful people.  People with good jobs and good benefits. Healthy people.  People with enough money to pay the rent, the utilities, the insurance premiums and all the rest of the things people like me could not.  He believed that if I had just tried harder or worked smarter or reached deeper, I could have patterned for myself a different outcome. Being homeless was, in fact and in his mind, my fault.  If only I had made other choices.

 

    Yet, I knew somewhere in my heart he was simply expressing what we have created in our society.  A attitude of exclusivity in which one group feels more worthy than another and in which those of us who cannot afford a home or healthcare or brand-name toothpaste are placed in a category outside of the mainstream. I grieved not for the loss of my home but for the cruelty even in my own family and felt deeply that as a mother I had not taught him that sometimes no matter how hard you try or how hard you work or how hard you believe, sometimes you cannot alone lift yourself from the depths.

 

     Over the years prior to that moment, it is true we struggled up and down and in every way.  Most of the time we did so quite privately, not admitting to anyone how bad things had become.  Sometimes we tried borrowing money in ways that were not the wisest or in the only ways we could, and our situation simply got worse.  We followed the pattern many, many families and individuals do in our nation — fighting to make it work somehow.  But there we were.  Standing in line at the food pantry every month, asking churches to help pay utility bills, selling anything we could to stay afloat — Did you know you can actually cook — well sort of — Ramen noodles in lukewarm motel room tap water?  I’ll bet some of you do know that.  And it’s sometimes 10 cents a package. That’s the way things were for a while.

 

    After finally accepting the offer to move in with our daughter, we began the emotional and mental unraveling you saw on the screen in SiCKO.  We begged people to know that we were trying hard to pull things out.  It was so painful to have family and friends change their tone of voice when we’d call — they were terrified we were calling to ask for money.  And sometimes we were.  And I took an office job I hated just to get the benefits and earn enough for a security deposit, and first and last month’s rent to get an apartment again.  And we moved into the place with a broken futon, some $5 lawn chairs from the evil empire — WalMart — and our clothes and the dog.

 

    It seemed that everything we had worked to do in our lives was now distilled down to the measure of our financial failure and loss of our health.  For me, having cancer was not a time when my diagnosis afforded me great support and love.  I worried about losing time from work and spending money and losing benefits.  Now in recent news reports, we all heard about this: we all want Sen. Ted Kennedy to win his battle with cancer, but I’ll guarantee you his first thought was not about finances.  And he never wished to die quickly rather than bankrupt his spouse — like I did on that lonely August day when I heard the words, ‘You have cancer.’ 

 

     So, how do we survive the exclusion and the pain and the anger and the withdrawal it takes to simply survive being viewed as a person with so little value?   It seems to me that how I survived was a miracle.  I am always acutely aware that more than 25,000 people who told their stories of health care horror to Michael Moore are not in the film… And those 24,988 people and families did not get to know the dignity that came along with simply having someone care enough to let us speak our truth.   

 

    But over the next several months after SiCKO was released, I have come to see another side of what it means to be ‘people like me.’   Some of you know I spent two months this fall and early winter traveling on a 1980 school bus telling the healthcare reform message in 12 states and 17 Congressional districts.  From Gary to Nashville — where I first met John — to Huntsville and down into New Orleans, from Florida and back up through the Carolina’s and on into Pittsburgh.  I spent Thanksgiving in Birmingham, Alabama where other homeless people embraced me in ways I never knew I could be embraced. They thanked me and wished me a happy Thanksgiving. 

 

They held my hand as they told me their health care stories and we cried together about the pain we are all suffering.  I was finally with ‘people like me.’  And I met veterans of our armed services who are most assuredly deserving of homes and healthcare, food and our deepest thanks and respect.

 

     So, my young son asked, ‘What do we do with people like you?’ 

 

     Well, after visiting 28 states and the District of Columbia this year speaking about healthcare reform, I can finally answer him. 

 

We give people like me healthcare — always and freely.

 

We give people like me warm shelter and food.

 

We give people like me credit for having as brain and will power that did not break but enduring a system that did.

 

We give people like me the dignity to choose what they will do next in life with the tools we can together provide and that are given with joy.

 

We give people like me a voice — the way Michael Moore did for me and U.S. Rep. John Conyers, author of the National Health Insurance Act, HR676, did for me when he had me testify before a sub-committee in Congress, or the way the California Nurses Association and National Nurses Organizing Committee wrapped us in decency and welcomed us into their fight for single payer healthcare for all —  and the way a civilized people do for one another.

 

We embrace people like me in the fight for a better nation — people like me are the people who built this nation and we are the people who will rebuild it into a more just and peaceful and compassionate society once again.

 

We will include people like me and we will call one another to task when any one of us is excluded — people like me are  people like you.

 

Thank you so much.

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Have you tried many of these “green” products out there?  The cleaners, the lightbulbs, the hybrid cars, and all the other end a round products intended to reduce your output of non-green/bad for the environment stuff…  

I have.

Most of these products suck.

Dishes take 3 times to clean in the dishwasher.  Clothes still smell after 2 washes.  Hybrids can’t haul your stores groceries from the distribution centers to your shelves.  The lights barely can light a room and will poison you if you break them.

Are these just “beta products” that we’ll figure out and improve… or is that what green is?  A label on a watered down product that gets you to consume more energy, but in non obvious ways.  

God, the Green Movements marketing ROCKS!

Concerned about the well being of humankind?  Try improving health care and wellness.  We’re bound to save more lives by improving health care than curbing the heating of the earth 100 years from now (yes, go to Wikipedia or your information source of choice to find out how much this “greening” effort is actually going to help stall warming, save the planet, save mankind…).  How can so many people get fired up about Saving the Planet but can’t get fired up about Health Care Reform?

Yeah, it’s the marketing.  Yeah, it’s our history of behavior.  Yes, it’s what we have come to value.  Or rather, what it costs us to “feel like we’re making a difference.”  That’s one of the key things about the Green Movement that other social movements haven’t figured out – how to make people feel like they are making a difference even when all they do is buy a different brand.  Health care, education and peace movements all require too much effort from an individual on a topic/issue/situation that may not directly, daily impact them.  The requirements pushed out by the leading organizations behind the non-Green issues are too high for what people get out of them. Today.

Consider this quip for fun…

Global Warming gets blockbuster movies like The Day After Tomorrow to scare everyone into greening up.

Health Care gets SiCKO.

I’ve seen SiCKO once, and my family is in it.

I’ve seen Day After Tomorrow 4 times, once without audio on a plane.

Global Warming gets 100 websites, social networks, Global Rock Concerts, CurrenTV.

Health care gets… some brochure-ware websites and some old congressmen.

I can go to the store and buy a Green Friendly lightbulb to Save The Planet.  I can fight with Aetna for two years to reduce my premium on preventative care.

If health care reformers want to make an impact now, they need to figure out the marketing.  Make it immediate, make it now, make it reinforcing, and make it easy.  And don’t forget the sex appeal, afterall Global Warmings coverboy is Al Gore.

~R

 

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Take a look at Sen. Tom Daschle’s latest note on his approach to improving health-care.

His summary of his ideas focuses mostly on exposing more data to people (transparency). This is the only workable strategy because it doesn’t assume any particular one cause for the cost of health-care nor any specific solution to one identified cause. In a sense it is not a strategy but an improved framing device (aka context) to let each type of consumer of the system (all companies, organizations, politicians, individuals) come up with better solutions for their particular, and ever changing, situations.

Take a look at the comments now.

Mono or Nearly Mono Causes of Health-Care Costs Cited:

  • existence of insurance
  • existence of free markets
  • bad health choices by consumers
  • cigarettes
  • alcohol
  • human greed
  • politics
  • government
  • medicare
  • medicaid
  • old people
  • young people
  • poor people
  • insured people
  • rich people
  • drugs
  • iraq
  • growing lifespan
  • ….

And the solutions proposed are one fix solves all.

Here we arrive at the true “crisis” of the situation.  Consumers of the system suffer from monocausilitis.  This approach is not unique to health-care.  We all suffer from this in some way in our jobs, families, religion, business.  One Cause, one solution, utopia.

“If only we did X…”

“It all started because…”

This is the basis of “markets” (and, no, not just financial markets).  Each node in a market can suffer from monocausilitis and the market proceeds with selection by consequences in a non-monocausilitis way.  Complexity emerges from simple rules at the nodes.  If nodes’ approaches are reinforced by consequences, those nodes’ approaches persist.  Others extinguish. Consequences can be measured by all sorts of different exchange units (dollars, shiny objects, sunlight, water, food, sex – more generally “energy”).

With that in mind, consider the current, and very complicated, health care context.  It is the “way” it is based on consequences.  And it will only change based on strategies tested by consequences.

If we desire more rapid improvement, more strategies need to be tried in shorter time periods.  And not all strategies can be condensed in time.  Complicated, eh?

The rules are simple – selection by consequences.  The outcomes and context is complicated. (just consider your personal state of your health and your health-care.)

Transparency – expanding our knowledge of the consequences – improves our ability to try more strategies faster.

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One of the great mindbenders of our lives is End of Life directives.

Here’s a list of where directives go haywire:

  • unclear language in the document
  • document “enforced” by someone other than the subject of the document
  • document not present during decision making
  • assumptions and pre conditions by family, self, doctors
  • written policies surround use of dnr
  • unwritten policies
  • spur of the moment context/second guessing
  • diagnosis of what’s really End of Life
  • lack of directive standards
  • and so on…

It really bends my mind to consider that one of the most final decisions we can make about ourselves or family members is this damn gray. in previous posts I talk about the data collection and precision targeting of our world, and yet, with directives we bring NONE of that approach.

Directives are a terrible information device – at this time. What can we do to clear them up? what can we do with the context surrounding them? is it just a matter of experience – the more we interact with them the more precise and effective they become?

things that make you go… hmmm… argh… help!?

Check this site out for tons of cool analysis and concepts.  http://www.eperc.mcw.edu/ff_index.htm

~Russ

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