The Whole Thing

I posted this elsewhere a long time ago. I have added something afterward.

This is only going to be interesting to advocates.

The idea

The idea is to create a small website for a specific target audience. In this case, nondenialist influentials.

Once that is done, a single link can be confidently sent to an influential and educated person.

Change since it was posted

Interestingly, back then, some of the following felt radical and heretical to write. Now it doesn't at all.

Preamble to The Whole Thing

I am in contact with somebody who might be able to help our cause. It's a tough angle, maybe a long shot, but if it works, it will be a big win. He wants to know more about the disease.

I know hundreds of places on the web to point him to, but there isn't a single place that explains what I will call THE WHOLE THING. By this I mean explaining everything an advocate needs to explain in the way I want.

There are hundreds of superb sites and documents that bite off some of the task.

There are awe-inspiring sites, great writers, excellent journalists, stirring blogs, pit bull advocate-researchers who send chills down your spine with the quality of their work, lots of good, good material.

But I do not think that a THE WHOLE THING of exactly this type exists now. If you say, "Have you tried X?" the answer is yes. All sites I know of, quite naturally, are aiming for a slightly different goal. I have checked. Really, I have. :)

The Whole Thing per se

A good THE WHOLE THING must do the following.

Every point is essential for my purpose.

1. Not be aimed at us.
2. Be aimed at intelligent, educated people who do not have any connection to the disease.
   • They might want an overview or they might have time to read in more depth.
   • They are analytical.
   • They are decision makers, scientists, doctors, investigative journalists, opinion makers, academics, international human rights advocates, and connected citizens.
3. Be unimpeachably credible. No ranting and no unverifiable claims. Better to leave stuff out than include anything that vitiates the moral force of our case. (Old marketing strategy: you don't have to list every feature of your product.)
4. Not try to be comprehensive. The focus is educating a specific target audience. No doctor lists, forums, advocacy resources, or anything else.
5. Be written like a good article in a highbrow magazine.
6. Be brief. One enticing main article. The entire site only needs a few pages. Leave them wanting more.
7. Not be defensive. The terrain belongs to us from now on.
8. Not get bogged down in detail at any point. Include details that tell an extremely compelling story.
9. Quality over quantity.
10. Adopt the right tone to inspire "I have to do what I can to support this cause". This means NOT exhortation. It's fact after fact, description, detached narrative, inspiring identification with the author, impelling the reader inexorably into realizing on his or her own. This IS possible.
11. Have high search rankings. Surpass all denialist sites in rank for all related search terms. Do this by being well-trusted and therefore well-linked-to from high-quality sites.
12. Be simple and accessible in web design. Avoid obligatory PDF and Word.
13. Have a shorter executive overview in an About link.
14. Be fairly robust to different sub-audiences. Readers might be open-minded, poisoned with falsehoods, or unaware. They might have any political or religious leaning. They might trust doctors and authorities or not. They might be scientists or not. They might believe in nonsense or not.
15. Explain, indirectly and implicitly if necessary, why the FIRST SITES PEOPLE GO TO are wrong. This is a necessary task. Only do this in history and politics (don't draw attention to it but make it available for linking).
16. Avoid mistakes found elsewhere:
    • Never put denialism on the same footing as science. Politics posing as science does not equal science.
    • Avoid weaselly, compromising blandness that comforts those in positions of authority who want to avoid taking action. The truth gets spoken.
    • Establish that many people suffer severely.
      1. Hammer this home.
      2. Do not be vague.
      3. Point out that a mild sufferer or non-sufferer can become severe AT ANY TIME suddenly or gradually.
      4. Explain what "severe" means and does NOT mean.
      5. Explain what "bedridden" means and does NOT mean.
      6. Establish that many sufferers are bedridden and below 10 on the Bell scale.
      7. Describe what that means for getting medical care, dental care, optical care, dealing with personal business of all types (including fixing bureaucratic SNAFUs and handling mail), dealing with an unhealthy indoor environment, cleaning, having visitors, getting food or water, personal hygeine, and going to the bathroom. Readers will not understand until it is described in detail.
    • Establish that children suffer too.
    • Avoid extreme commitments to particular theories.
    • Never characterize the disease as mild, mysterious, or controversial.
    • Get images right.
      1. Always dignity. Always.
      2. This is NOT a picture-heavy site. It is aimed at abstract thinkers; pictures are to leave a visual memory of the seriousness of the disease for later when they think of the topic, or to illustrate an apt point graphically. Not for grabbing attention.
      3. Never show people rubbing their temples, looking sad, or sleeping. Avoid smiles without good reason. Avoid smiling portraits of doctors.
      4. Cannulas and IVs are fine. Wheelchairs are fine. We are not appealing to pathos, however.
      5. Science-oriented images are fine, but not if they imply that sufficient research is being done.
      6. If there are no pictures at all, that's fine. Highbrow magazines don't particularly need them and neither do we.
    • Never use any denialist definition.
    • Call it a disease. Nothing else.
    • Get the name of the disease as right as possible. Denialist names go in history and politics.
    • Never put opportunity seeking, wishful thinking, or common assumptions on the same footing as science or (very) responsible observation. Well-meaning intuitions can cause death.
    • Avoid pet theories.
    • Never describe denialist theories except in history and politics.
    • Never suggest that sufferers delude themselves, twist themselves into knots with worries, or get preyed on (the poor dears) by nutritional supplement hawkers. They are sick people, nothing more, nothing less. Leave what they do alone and concentrate on what doctors and others do.
    • No treatment and test recommendations. This is an education site for people who do not have the disease, not a site for people who do have it (or doctors).
    • Do these in a separate place for linking (do not emphasize it):
      1. Establish that those who suffer severely cannot do many things that those who suffer mildly or from different conditions, and other people, sometimes take for granted as being useful.
      2. Point out the human rights and civil rights consequences of forcing those things. Whether by parents or friends or authorities or anybody else.
      3. Provide specific and referenced examples of these violations having occurred in real life, not theoretically or "could" or "may" or "might".
      4. Establish that many proposed therapies are political.
      5. Establish that many proposed therapies are harmful.
    • Be independent. No conflicts of interest. Never make contracts with enemies.
17. Explain every aspect necessary to give somebody a brief overview. Each part can be brief.
    • history including outbreaks
    • science
    • medicine
    • one or two brief personal stories of severe sufferers
    • a brief, journalistically sound description of human rights violations
    • politics including corruption and manipulation

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That's basically the idea.

What I am adding now

1. Link to the ICC and the ICC Primer (ICP) where necessary
2. Mention that some sufferers have more facts than our latest and best-informed definition requires (or even lists).
3. Tell the story of Emily Collingridge.

Imagine (I wrote this a little later)

Imagine that an educated, influential acquaintance sends you personal email asking about the disease.

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You send ONE link. This is your only chance.

You cannot say "look past the formatting" or "it's out of date but will give you the general idea".

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Let's pick Barack Obama as an example (you can substitute anybody you want) and assume he's an acquaintance who knows nothing about the disease.

He has a few minutes (maybe more if those few minutes are compelling).

Now ask yourself these questions:

1. Do you vouch for it? Does it tell the truth without compromise?
2. Are you comfortable with its credibility, readability, accuracy, colors, quotes, fonts, accessibility, logic, style, tone, images, associations, loading speed, name, currency, size?
3. Is it classy, no nonsense, no frills, impossible to get lost in, and straightforward?
4. Does it inspire trust by the reader, people in the movement, journalists, human rights NGOs, and others?
5. Will he read more than 10 seconds?
6. Will he be motivated? Will he take action?
7. Will he send it to Michelle saying, "Remember Tuskegee and the early days of HIV/AIDS research? Read this tonight and you will not regret it."?
8. Will his underlings tell their underlings to read it?
9. Does it emphasize the facts they need to know?
10. Check again, does it meet ALL of the criteria?

Pragmatics

IMO in order to ensure that it will happen, the scope needs to be outrageously and scrupulously limited. A tiny site to link to. Zero mission creep.

The hard part is rejecting excellent material that does not precisely fit. Perhaps that material can be reused for other scrupulously targeted sites.

For example, a similar The Whole Thing site for unaware sufferers, to support a decentralized campaign of massively increasing accurately informed advocacy manpower.

Conclusion

It is a tiny site. If there is enough interest, then let's start a mailing list to coordinate and just do it.

Samuel

P.S. Contributed idea

Include a printer-friendly version in some way via software (i.e. not a separately-written document).