Politics is the manipulation of how things work in society, for the sake of private gain, by the powerful, at the expense of the weak, often using the feelings of the masses as a tool.
You discover for certain, demonstrated beyond all objection, that the world does not care whether you live or die.
Without action, we suffer, we lose our status as human beings, and large numbers of people die early.
Millions who assume they will never get sicker, will. Long before any fundamental change not demanded by us will happen.
There is a lot to do. For example, people need to be informed, exactly as they are with HIV/AIDS. Polite letters can take us a long way.
Every one of the following needs to know Three things or similar:
- Every member of the US Congress without exception
- their UK and other counterparts around the world
- every newspaper publisher
- every human rights NGO
- every college student
- every head of state
- every born activist
- every medical NGO
- every sufferer
- every doctor
- every carer
- and every biomedical scientist in the world.
Importantly, they need to know that everybody else knows it. These are people we need on our side.
Getting Congress on the case of the research agencies is a top priority.
No denialist press release or rule or pseudoscientific paper should ever go unchallenged. The world should expect us to provide accurate point-by-point refutation every single time.
These are just examples.
But there's a missing element.
There is excellent advocacy behind the scenes — bedridden and housebound people writing letters and much more despite the fact that it makes them a lot sicker — but IMO while it is 100% necessary, we need more to keep politics from slitting our throats.
Nothing here should be taken as dismissive of the awe-inspiring positive current and past efforts. They are extraordinary and necessary and always valuable down to the tiniest thing anybody does.
We are in danger
Things getting even worse is far beyond the beyond of wrong. People are being taken away from their parents. People are being incarcerated. You are regarded as subhuman.
You are a scapegoat.
There is no sense of urgency, so this will happen more. Maybe much more.
Misopathy reaches extremes and it does not matter where. Ask not for whom that bell tolls. One instance anywhere tolerated is one step toward you personally and every other sufferer.
Things that are not a matter for debate are being debated and lost. The basic worth of humans, the basic value of truth, the basic facts of natural reality. All at the cost of health, lives, and everything that has ever mattered.
How many more must die before humans become ashamed, as humans, of the fact that it is, in fact, happening here, on our watch?
On funding, we're often worried about mere thousands of dollars. We need to aim higher by orders of magnitude.
Why a $200,000 or so grant? $200 million — a thousand times that — is nothing. Good scientists need support.
You'd think nobody is sick at all, instead of millions and a large chunk of those bedridden and housebound. $200,000 is not even a rounding error.
It pays for 23 seconds of US-Iraq war. Did you know that one year of US-only domestic-only HIV scientific research is estimated at $2,840,000,000?
That is hard science research and it is for the retrovirus itself.
To get a rough idea of scale, the ratio is the same as the ratio between one day and 39 years.
I emailed a researcher who studied funding levels compared to disease burden. They were looking for the largest inequities.
I asked why The Pandemic was not included.
He replied, "Funding was too little to include in our analysis."
Funders are not feeling any pressure at all. They have no reason to change.
They are smiling and laughing. They are snugly nested in their networks of back scratching.
But we can do something about it.
What do we need?
Back to the missing element. I think this is what we need for the current status:
We need manpower.
There will never be a waiting period; there are a thousand things to do.
How do we need it?
We need it with grim cold focused rage. Sustained, relentless, strategic rage. The kind of rage where you stop trying to lead a pretend life and instead do something wise and globally beneficial to create a real life.
I believe that with accurately informed manpower, and using ethical means, rapid tangible change is within our grasp.
Exponential processes do this:
- "what just happened?!"
AIDS did it.
Those who think it isn't urgent are just wrong. Those who think they are invulnerable to disease progression are just wrong. Learn with us. You will be part of the cause of our time.
Our struggle will be known and it will be supported by millions and it will be honored. Human rights organizations will scramble.
This is not some random disease making some local victory. There is a bigger picture. There is a better world.
We will get TED talks. We will even get a stupid stamp.
Speaking of TED talks:
Tal Golesworthy is a boiler engineer — he knows piping and plumbing. When he needed surgery to repair a life-threatening problem with his aorta, he mixed his engineering skills with his doctors' medical knowledge to design a better repair job. — TED
He got past the politics. In the UK! That's like biomedical Mordor, isn't it? For us it is.
The point is that mind-blowing possibilities fan out from every step we do not take. Opportunity costs are invisible.
With manpower, we can do things in parallel and skip no opportunities — even ones we do not anticipate.
The Japanese have a saying: if you don't do it, nothing will change.
Now for a concrete way to raise manpower from the politically dead.
Here is a possible direction:
Carefully inform and warmly welcome massive numbers into the existing serious advocacy movement.
Instill the value of action.
Be accurate and reliable and not shy.
Tell them what they must know to do good and not harm. That is the caveat — and it is critical. One thing especially.
Teach Severity. Don't let anybody ignore it. This is not optional. It is the only way out.
Point out Samuel's Law (which is described in More you than you and a few other articles).
I do not want anybody advocating who does not understand severity (including the multisystem nature). No exceptions.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. — Emily Collingridge
Emily died from the disease.
What is a real movement?
Fight on behalf of people who are sicker than you are. Always remember their existence. Are you severe? Fight for very severe. Are you mild? Fight for all who are sicker.
I believe that without that, it is not a movement at all. Only a mockery.
Without a real movement, there will be no progress.
Mild sufferers and healthy supporters
What worries me most is that millions of sufferers do not know how sick they can get. A large number of the most informed advocates ROUTINELY forgets the existence of severe and very severe.
A large number of severe and very severe sufferers used to be mild.
Therefore, by "accurately informed", I do NOT mean knowing the facts of severity, but profoundly knowing them in their bones.
It is imperative for the success of our movement.
Once we pass that hurdle, increasing our practical strength — letters written, things done — a thousandfold is not out of the question.
There was a time when a person couldn't walk across campus without being told that silence=death. You are needed. You are being called.
The day that ten million mild sufferers and healthy supporters take to their hearts that it is fundamentally a radically multisystem severe disease, and take to the streets with grim cold focused rage, is the day that we stop losing and start winning.
Is it risky?
All proposals carry risk if you include opportunity cost. The question is whether the circumstances merit taking it. I believe they do.
I also believe we are in a position to take back the things that were robbed from us: science, health, justice, respect, enfranchisement, ability to contribute to the world, and lives.
Is it naive?
The strategy does not rely on hope as I believe we have to bring into existence the only thing that makes hope meaningful: commensurate scientific research on root causes.
It does not rely on trust as I believe our trust has to be earned.
It relies on action and I do NOT believe that action is naive (only misdirected action is).
Should we have a policy target?
Should we focus attention on a policy target at the same time? I think so and I will post a certain idea if there is enough interest. I've yammered on enough in this article as it is.
The value of the specific proposal
Now some disclaimers before I come back at you with force.
The manpower proposal might be a good idea; it might be bad. If it's bad, it should be rejected. The larger point is about politics and rage.
I am open to counterproposals if they are forward-looking and implementable things we can do instead. Brake-pad-like quibbles and wolf-pack-like factions leave me cold.
I am of course not saying it's original (this isn't an art exhibition). And nobody has to listen to a word I say. Who am I to suggest this strategy?
It is implementable
But it is implementable.
Unlike Stockholmer and pseudoskeptic slush — "I have a quibble so let's not do anything" —1 or the vague hope and quiet despair of tamped-down rage, it delivers leverage and a meaningful possibility for positive change.
Let our rage fly
Whether or not the specific proposal is right:
I am saying let our rage fly a thousand times higher. Put all of it to use for everybody. Direct it strategically and ethically, but let it fly.
1 "I have a quibble" is a speech by Marvin Lunar Kong, delivered after his march on Seattle, Washington, which for some obscure reason history did not record.