Tuesday, October 30, 2012

Moderation and manpower

Do you think that progress will be made at the current rate?

I do not.

Is moderation (as in moderateness) morally justifiable?

History

Here are three quotes from distinguished citizens of the country that performs the most research on diseases. The topic is moderation.

The first is famous:

I have almost reached the regrettable conclusion that the Negro's great stumbling block in his stride towards freedom is not the White Citizen's Councilor or the Ku Klux Klanner, but the white moderate who is more devoted to "order" than to justice, who prefers a negative peace which is the absence of tension to a positive peace which is the presence of justice, who constantly says, "I agree with you in the goal you seek but I cannot agree with your methods of direct action"; who paternalistically believes he can set the timetable for another man's freedom; who lives by a mythical concept of time and who constantly advises the Negro to wait for a more "convenient season".

Shallow understanding from people of good will is more frustrating than absolute misunderstanding from people of ill will. Lukewarm acceptance is more bewildering than outright rejection.

— Martin Luther King (attributed to "Why We can't Wait," Letter from a Birmingham Jail, Harper & Row 1963)

The next is less famous:

I am aware that many object to the severity of my language; but is there not cause for severity? I will be as harsh as truth, and as uncompromising as justice. On this subject, I do not wish to think, or to speak, or write, with moderation. No! no! Tell a man whose house is on fire to give a moderate alarm; tell him to moderately rescue his wife from the hands of the ravisher; tell the mother to gradually extricate her babe from the fire into which it has fallen;-but urge me not to use moderation in a cause like the present. I am in earnest—I will not equivocate—I will not excuse—I will not retreat a single inch—AND I WILL BE HEARD. The apathy of the people is enough to make every statue leap from its pedestal, and to hasten the resurrection of the dead.

— William Lloyd Garrison, inaugural editorial in the anti-slavery journal The Liberator, 1 January 1831 (http://www.wfu.edu/~zulick/340/garrisonliberator1.html)

Finally a sentence with insight:

Perhaps the sentiments contained in the following pages, are not YET sufficiently fashionable to procure them general favour; a long habit of not thinking a thing WRONG, gives it a superficial appearance of being RIGHT, and raises at first a formidable outcry in defense of custom.

— Thomas Paine, Common Sense, 1776

Their respective movements succeeded.

What about AIDS? What about our case?

Did ACT-UP increase or decrease meaningful HIV / AIDS research?

Would more be alive if ACT-UP had used their "inside voices"? Did they "drive the good researchers away"? Did they "hurt their own cause"? Should ACT-UP have endorsed an international professional association's "blotchy skin primer" that promotes exercise and claims that opportunistic infections play no role?

Does throwing meat to a lion make it go away? Does placing a late-stage sufferer in front of its jaws save an early-stage one from becoming late-stage?

There is no hope without action

Every day, each of us needs to ask, "What can I do for advocacy today?"

What is the magic spell that makes informed political action everybody's highest priority? What resources are needed to make that happen for millions of people?

I believe that most of us (INCLUDING MILLIONS OF EARLY-STAGE SUFFERERS) will die early from the disease before any meaningful treatment ever becomes meaningfully available, unless we step up action by orders of magnitude. ACT-UP had serious manpower and we probably need more active people than they had. So please speak up. Please say something. One person can make the difference.

Samuel

P.S. More on manpower: Politics and rage.

3 comments :

  1. The fact is Kim McCleary made the decision many years ago, arguing against a gentleman now dead, to be genteel and ladylike. Then CAA started taking money from CDC, which enforced the decision. It is a big problem that CAA is the visible "organization" for MECFS because it diverts to itself things like Laura Hillenbrand's $250,000 gift. Iime is very good, but in the US we need a single loud voice, and I don't know how we get our scattered groups to support one that can become highly visible and effective. I've always thought a demonstration of 100s of wheelchairs and gurneys on the capitol steps would be nice but let's face it, CDC and NIH have lied their way to ignore Congressional pressure before.
    ACT-UP had huge advantages of being geographically concentrated, dying fast and gruesomely, and having disposable income. Also, a lot of the ill were pretty mobile until near the end.
    We need a PR genius.

    ReplyDelete
  2. Somehow we have to remorselessly drum out the name CFS. it has to be ME. You are absolutely right where you said CFS makes it so easy to diminish and ignore us. we have to all take a sacred vow to use ME and myalgic encephalomyelitis at least three times for every one time we might concede that the name CFS exists (as in referring to the $10 million "cfs initiative."

    ReplyDelete
  3. Hi Deborah,

    I think if one of us started an organization in the USA that is LOUD, and accurately informed about the true nature of the disease (for example, Three things), it might very well skyrocket.

    ReplyDelete

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