Wednesday, November 11, 2015

Make it unthinkable, please

A story

Once upon a time, in a certain place, there was an ordinary man who did not stay ordinary. His story is riveting.

One day, he was traveling. He wasn't a boss, but he was going to a meeting of bosses, because they were gathering to talk about his country.

En route, he had an idea. A few things he'd thought about for years coalesced: "what if we could have a country like THIS?" He hastily scrawled a blue-sky, eight-point plan.


Of course, he did not ask himself "What seems best for me or my status group?" He asked "What is best for everybody, including those who are not being noticed?"

Otherwise there would be little for me to tell you about.

A boring list (and something interesting)

I won't list all eight points, because they sound boring, but here are a few (edited) to give you a sense of it.

  • Both upper and lower legislative houses should be created and government policies should be decided by this legislative body. — boring!
  • Class or position should not impede being appointed councilor. Abolish sinecures. — boring!
  • A modern legal code. — boring!

Now here is something interesting: his country was feudal. (Which isn't like fairy tales or Tolkien.)

The plan that sounds boring to most of us supposedly modern folk was, in fact, so outrageous that it was likely UNTHINKABLE.

Ǝlqɐʞuᴉɥʇun!


Of course, I've told you a shadow of the story. Even getting to this point required our ordinary man to think outrageous, "DUDE, WHAT PLANET ARE YOU ON?" thoughts several times in unthinkable succession.

Such as an alliance between bitter, warring enemies.

It worked

Yet with only a few further twists and turns, it all worked, including the unthinkable plan, which was composed on a ship in 1867. Japan became modern in a few years.

In other words, feudalism ended RAPIDLY. His outrageous ideas entered the constitution.

I'm pretty sure that would not have happened if our ordinary man, who was a merchant-origin hick who was bullied (and known for bedwetting) as a child, and a few others like him, had settled for what was thinkable.1

What did he NOT do?

But what DIDN'T our guy do? This is interesting, too.

He wasn't a peasant (he was a low-rank samurai), but he DIDN'T throw peasants under the rickshaw! He DIDN'T allow the new bosses to trick everybody back into feudalism! And the overseas forces breathing down everybody's necks didn't take over Japan.

He didn't choose between unacceptable bosses. He refused to tolerate those who would do the country wrong, even if that meant the shogunate. And a shogun resigned.

In other words, he didn't lose track of the right thing.

Now let's ponder thinkability vs. unthinkability

THINKABLE reforms could have thrown the country into "meet the new boss, same as the old boss" (got fooled again). Empty promises. Or full-blown colonialism.

But our ordinary man's reforms were UNTHINKABLE. (Imagine: "What's a 'vote'? Be realistic! Baby steps!")

The old order was dangerous. The new order could have been dangerous. Baby steps were DANGEROUS! The reforms HAD to be unthinkable!

Moral

In everything we do and demand, I believe we must not settle for what is merely thinkable.

I don't mean that like a New Age business guru. I mean it's logically necessary. Just like our ordinary man, we do not live in a time in which thinkability works.2

Here is my query to the community of a big disease:

Have we scrawled our clear vision of what is right? Not "realistic", and NOT comforting to the comfortable, but actually RIGHT?

Did we make sure it's unthinkable enough?3

Are we sure?4

Danger

Thinkability is DANGEROUS!

Exclude anybody, and victory is false.

Demand too little, and you always get even less.


And in a disease that very often progresses by very large amounts in severity, "they" is everybody, including people who don't seem like one (YET) and those not being noticed.

It is DANGEROUS to disregard the facts of severity and disease progression (for any reason).

Online communities (and oneself) are a selection bias.

Carefulness is not the enemy of boldness

I have one more point.

He was careful to travel the country, learn from the best minds he could find, and broaden his own mind. He thought about everything he did.

Conclusion

It seems to me that at least one disease, with millions of sufferers, lives in something like the above period of history, right about now.

Thinking is desirable, but thinkability is NOT!

Samuel

Acknowledgements

Thanks to Rika Kageyama for valuable comments after I ran this post by her.

P.S.

Please comment on my posts to tell me that you are listening. I need to know this website makes a difference.

Footnotes:

1

His name was Sakamoto. As a sort of side effect, he was present at the forming of what became Mitsubishi, commanded ships, brokered major alliances, fought off assassination attempts, planned battles, left his domain (punishable by death), and unusually invoked international law to resolve a local maritime dispute, all by the age of 32.

But you're a sharp reader, and you've discerned that my point is not going to be about Sakamoto.

2

Do we all know the Overton window? It is the range of expressible opinions on a given topic, in a given political climate. (Imagine a wide political spectrum, and a smaller segment somewhere in the middle. That segment is the Overton window.) It can shift.

A given opinion can be considered one of these (depending on where that window is at the time it is proffered):

  1. Unthinkable
  2. Radical
  3. Acceptable
  4. Sensible
  5. Popular
  6. Policy

Do we appreciate how this window has been used against us? Extreme corporate anti-science — snow as black and coal as white — got shifted to Policy, while basic science is Unthinkable or Radical. That is what the bad guys have done: they shifted the Overton window from science toward their political goals.

Now here is the really key question: do we realize that we reinforce the current position of the Overton window when we water down the truth to make it palatable? Compromising science, health, and human rights reinforces the status quo, even when it feels to us as if we are moving it.

We have adopted the mindset of the authorities more than we realize. In order to accurately show reality, our sights (including the breadth of symptoms in disease portrayal, recent funding demands, and attention to human rights) need raising until what we see is currently unthinkable to ourselves. We HAVE to make it unthinkable.

3

We have allies (visible, latent, and hidden). But even good champions cannot hear what they are not told. They absolutely rely on us to shatter their normal-person sensibilities (and replace them with reforms that address the facts and needs they never imagined).

They rely on us to tell them UNTHINKABLE things!

4

Here is why we should be cautious about being sure, and a reading recommendation for everybody:

Overton is a window of perception. It defines what is thinkable.

I believe it has cropped our community's view (not merely everybody else's).

It is all because our Overton window faces a dark, littered alley's concrete wall. The same is likely true of most oppressed groups. Thinkability is oppression tech.


Meanwhile, to broaden horizons, please read what one disease (not ours) has, for SERVICES: {NYT article}.

Now let's talk science funding for causation, fundamental pathophysiology, and treatment. Wanna see the numbers? (Scratch that. Wanna see THE NUMBER OF ZEROES?)

Thinkability is distilled evil. It obliterates reason.

12 comments :

  1. There are two "unthinkables" outside the Overton window: one below and one above. Though that is not their intended meaning, for the issue at hand I like to see them as one being the unthinkably wrong, and the other being the unthinkably right.

    ME sufferers have among the lowest quality of life of all illnesses, and are granted among the lowest research funding of all illnesses.

    That sounds like the unthinkably wrong…

    …But it happens to be reality! And policy. The middle of the window. For such mass suffering, what is spent per year in the US for now is a meager 5 million. 50 million would barely qualify as "acceptable". 500 million is where the "unthinkably right" begins…

    If one of these two "unthinkables" made it to reality, then there is no reason why the other should not.
    All the more since it alone has LOGIC on its side. And even more so, human rights indeed.

    Thank you for spurring us, Samuel Wales.

    ReplyDelete
  2. Hi Christian,

    Thanks for your comment.

    Yes, we have logic on our side like no other group I am aware of.

    ReplyDelete
  3. Some highly relevant data:

    2015 US HIV/AIDS funding is $30,700,000,000 ($30.7 billion). Likewise, obama's 2016 request is $31,700,000,000 ($31.7 billion).

    Of the latter, 9% ($2.8 billion) is for NIH research. But that is not all. In addition, 20% of the $31.7 billion is for global funding, including international research.

    As for services, we can mention the Ryan White program, which provides services to people with HIV. Its funding is $2.3 billion.

    There's more.

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  4. Christian, I very much like your idea that thinking can be limited in both directions!

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  5. So very enjoyed this article. Both Kafka and Wonderland have been themes is my life since becoming ill. So enjoyed this article on the unthinkable. We need to start believing the unthinkable, the impossible.

    "Why, sometimes I've believed as many as six impossible things before breakfast."
    Lewis Carroll, Alice in Wonderland (Alice's Adventures in Wonderland, #1)

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  6. Hi Dancingstarheart,

    Thanks for reading my blog. Definitely it is time!

    ReplyDelete
  7. I've been wondering how you are. Very glad to see you blogging! Shelley

    ReplyDelete
  8. Hi Shelley,

    Very good to hear from you!

    Almost all of my posts have taken years or months to write. I am glad to get this one out as I think it might be timely.

    ReplyDelete
  9. Hi Samuel,

    Great blog, and glad to see some new entries!

    I think one very important concept in relation to the Overton Window and the idea of "unthinkability" is that of "controlled opposition."

    A major role of true opposition is to force "extreme" or "unthinkable" ideas into the public consciousness and thereby pressure the Overton Window to shift in time. (Think: severity, progression, etc). By controlling this role, the viewpoints "on stage" can be managed so as to never threaten any substantive change.

    The CAA (CFIDS Association of America) is a prime example of controlled opposition. They serve only to dilute and derail ideas that could endanger the status quo (or "alienate those trying to help us" in their deliberately milquetoast verbiage).

    The Phoenix Rising forum embodies a similar concept, one that might be called "controlled exchange." As a long-time member there (under a different name), it clearly maintains a double-standard in moderation. Certain "unthinkable" ideas and conversations are rapidly scuttled by a stable of status quo gatekeepers, backed by the heavy hand of moderation. Likewise, non-neutered criticism of consensus opinion is quickly shut down. The result is an appearance of thriving exchange, but one constrained to irrelevant and status quo-preserving topics.

    A key point is that the creation and maintenance of such "controlled" entities doesn't require a grand evil plan. Merely a self-sustaining culture and outlook inherently amenable to the status quo. Powerful, intansigent institutions will naturally seek out and popularly promote opposition forces least likely to impact their operations. A closed loop of revolving door policies and human weakness (egoism, power-craving, etc) organically sustains the system.

    Therefore, as you alluded to in your post, we must be very diligent in evaluating (and continually re-evaluating) our purported leaders and advocates. Playing nice is "thinkable." Gatekeeping is "thinkable." Garnering goodwill and status is "thinkable."

    Refusing to play on any terms but our own is the first step to "unthinkable."

    ReplyDelete
  10. Hi TheAlmightyPill,

    Thank you.

    You make a lot of good points!

    Let's talk about them more.

    ReplyDelete
  11. I do think that patients feel constrained to not report certain symptoms. Initially, I thought my most severe symptoms would be the most likely to result in my doctors considering my condition serious. I thought discussing every symptom - including my most horrifying ones - would mean that doctors would have a better chance at diagnosis and treatment.

    This was the opposite of true. The sicker I was during the appointment, and the more severe the symptoms I discussed, the more likely the physician was to behave as though what I was telling them could not possibly be true. Not only was the correlation easy to see personally - even with the same doctor, visit-to-visit - there is a study that shows that in illnesses the physician has trouble understanding, the worse the patient appears to be feeling, the less likely the doctor is to accept that the patient's symptoms are real.

    Fascinating and horrifying.

    I find myself talking about my worst symptoms in oblique terms and my minor to moderate symptoms more specifically. It's the way I get the most reliable care I can.

    I feel that my altered behavior is what you are describing here, in miniature. We are well aware that our symptoms are *unthinkable* for such a 'simple' and 'minor' illness. We try to be grateful to be moving forward, because some movement is better than none at all. We're trying to appease popular opinion by squeezing ourselves into an image of the illness that doesn't describe our experience in the slightest.

    I'm fascinated by your focus on what reality would look like if chronic, denigrated illness were treated properly. The obvious answer is to have as much research funding for each of them as for MS -- more, since there is already medication for MS that is approved by the establishment as being effective. Certainly, any system that promoted the biopsychosocial model of illness would be denied public funding immediately. We've long since reached the point where it has become clear that proponents of such models are actively obstructionist to biological research, to the point of fervor. Not only are their studies laughably poor, they've refused to give up their data to the public... which is like having a large building collapse in public and refusing to present the blueprints!

    If the law found that the government was accountable to patients who had been harmed by unorthodox therapies, there would be reparations, specifically in the few remaining countries in which physicians have been actively encouraged to consider these sorts of illnesses psychosomatic. Part of those funds would go to a public relations campaign aimed at education around the illness. This would include fees for speakers at medical conferences to dispel any remaining misconceptions.

    Getting any country's government to admit it was wrong seems pretty nonsensical in our bureaucratic realm. For some reason, I find the funding business actually possible, though.

    Regarding the forum PR, I'm a member as well. I haven't observed this censorious and dictatorial behavior personally, but I find that the 'character' of the boards differs greatly depending on where you tend to spend your time.

    ReplyDelete
  12. Hi Anonymous,

    Insightful point about downplaying reality.

    I agree MS per-capita funding is too low. There's also the need to make up for the many years that we needed to have science done but did not. And scientist perception that needs radical fixing -- by science. And a bunch of other reasons we need to raise our sights.

    I'd like us to consider the unthinkable disease to compare to: HIV/AIDS.

    PR is a valuable forum with good people (clearly including The Almighty Pill and you, to judge by the high quality of the comments by both of you) and good analysis. So I'd like to know more about any moderation control.

    Anonymous, please be pseudonymous or use your name. My readers and I want to know if you're the same person from comment to comment. "Name/URL" is enabled so you can enter a name; "Anonymous" cannot be turned off without turning that off also. I prefer to know who you are in the community, but I don't insist on it.

    ReplyDelete

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Choose any option except Anonymous, as my readers and I want to know if Awesome Comment 1 has the same author as Awesome Comment 2. If the other options don't work for you, try Name/URL to enter your name or handle. URL can be blank.

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