Advocacy

Profoundly Human Endeavors

“Even once the true cause of my disease is discovered, if we don’t change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policymakers are not immune to the same biases that affect all of us. We need to think in more nuanced ways about women’s health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients’ stories and we need to be wiling to say ‘I don’t know.’ ‘I don’t know’ is a beautiful thing. ‘I don’t know’ is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then rather than fear uncertainty, maybe we can greet it with a sense of wonder.” Jennifer Brea on CFS/ME and the ways the medical model can improve for all of us.

j. ruth kelly, all rights reserved

j. ruth kelly, all rights reserved

Myalgic Encephalomyelitis aka Alienation

I so often wrestle with whether or not to express what CFS/ME does to my life, how it shapes the landscape of my mind, my will. More often, I choose to sparingly articulate how it impacts me, simply in the interest of sanity. But I find, as more and more people wake up to the truth of this disease, that it is becoming more empowering, less overwhelming to go ahead and speak up. The ignorance is melting away as people realize it’s not a psychological issue but a real assault on the body.

As Jennifer Brea experienced initially, so did I. Fever over 106. Pneumonia for the first time in my life. Early 20s. Never. The. Same. After my primary care physician sent me in many different directions seeking a diagnosis, we landed on the diagnosis of CFS. And the alienation began right there in my doc’s office, with her set of prejudices awaiting me like a box, a prison cell.

Brea’s TED talk speaks to so many of the issues confronted by those who walk this path. Her words, in their affirmation of the validity and impossibility of the struggle, bring balm to those who have suffered this illness for a long long time.

Enough Free People? No.

“After we protested and went to jail and then went to court and was—had a guilty verdict, right? That week, the president came to New York and said, ‘Edward Koch was one of the great mayors in the last 50 years,’ and then said, ‘Michael Bloomberg was a terrific mayor.’ Now, this is the same person saying we’ve got to care for black boys, and black boys are being intimidated, harassed, humiliated, 1,800 a day. It’s just not a matter of pretty words, Mr. President. You’ve got to follow through in action. You see, you can’t use the words to hide and conceal your mendacity, hypocrisy and the support of criminality—or enactment of criminality when it comes to drones, you see.

And the sad thing is, Sister Amy, is that we just don’t have enough free people, let alone free black people. Black people, we settled for so little, so we get a little symbolic gesture, we get a little identification, and like on MSNBC, which is part of the Obama plantation, they start breakdancing again: ‘Oh, isn’t it so wonderful? He’s really one of us. We can now wave the flag again. We can now support our mindless Americanism,’ in the language of my dear brother Maulana Karenga, intellectual that he is. No. We ought to be over against injustice, no matter what, across the board, and be vigilant about it. I don’t care what color the president or the governor or the mayor is.” — Cornel West in an interview with Amy Goodman of Democracy Now

Obama’s Violence of Choice

President Obama declared his reaction to the Zimmerman verdict today, quoted in the “news source,” CNN, as saying:

“The death of Trayvon Martin was a tragedy. Not just for his family, or for any one community, but for America. I know this case has elicited strong passions. And in the wake of the verdict, I know those passions may be running even higher. But we are a nation of laws, and a jury has spoken. I now ask every American to respect the call for calm reflection from two parents who lost their young son. And as we do, we should ask ourselves if we’re doing all we can to widen the circle of compassion and understanding in our own communities. We should ask ourselves if we’re doing all we can to stem the tide of gun violence that claims too many lives across this country on a daily basis. We should ask ourselves, as individuals and as a society, how we can prevent future tragedies like this. As citizens, that’s a job for all of us. That’s the way to honor Trayvon Martin.”

We are, in fact, a nation, not of laws, but of people who create laws, flawed and otherwise, laws based on the value of the people, the value of life itself. Ideally, our laws protect value and restore a measure of justice. We can stand with the parents who are asking for calm reflection, noting that such reflection requires a proclivity for truth and an awareness of the lessons love would teach us in these confusing times.

We can, on this day, note that in the state of Florida one man, not African-American, has walked away free of the charges against him, charges in agreement with value, with life. He walks free ‘though he killed another. And while he walks in freedom, another is enslaved, imprisoned by a system, for the “crime” of firing a warning shot, a shot that did not kill or harm another life. Marissa Alexander shot down by the violence of choice, by the flaws in a system so surreally corrupt, we cannot know what we stand for any longer, as a nation, if we look to the “nation of laws, and a jury.”

Much like the indiscriminate work of drones honing in on the allegedly guilty in lands far from our own soil, Obama’s violence of choice rings a discordant vibe in our world as he asks us to choose calm, to honor Trayvon Martin, “to stem the tide of gun violence.” The exacting accuracy of our guns do not serve a President who would rather sit and push the button every week, sending innocent children to their deaths as he rests in the executive shelter of “collateral damage,” children and innocents banished from life itself by a nation not consulting her own people or the laws of their own making.

And so we see what Obama means by calm reflection. He asks that we not reflect too passionately on the value of life itself, that instead we remember we are a nation of laws which we dare not break, especially if we are African-American. We should, indeed, “ask ourselves how we can prevent tragedies like this,” as we sit complicit in our silence while he sends hundreds to their death, well beyond our borders…

without regard for the value of life,

without regard for justice,

without including the people of the U.S. in these choices we have seemingly no choice but to accept.

Good people of the United States, Obama’s violence of choice is drone-warfare, not gun-violence. He asks we partake in a violence of twisted logic, choosing one form of brutalization over another. See, we must lay down our arms, our awareness of truth and surrender our minds to his greater, elitist view of what is truly valuable. We are, after all, a nation of laws, not humans bleeding the same color, not humans on a planet roiling in the aftermath of a bully-nation’s actions. We are at the mercy of Obama’s violence of choice, but thankfully, thus far, apparently not on the receiving end.

So, let us calmly reflect with passion on our value, on the value of every person on this planet we inhabit. Let us reflect on the duplicity of the powers that be and ask ourselves how we can prevent the further rape of justice, and the intimidation our system exacts with rapid-fire insistence in these trying times.

How can we embody a fierce and fearless love, a love refusing the obfuscation of value in the name of law itself?

Landfill Harmonic…

Some things just have to be watched… With one child in the Greensboro Philharmonic and another in band and another who plays guitar/sings, this blows me away. Not that you have to have kids to be blown away by it…

(Thanks to friend Mercedes of http://ifattituoi.wordpress.com/ for posting on Facebook)

Penn State

Being philosophically correct is a nowhere game. Being politically correct is the same. Speaking from the heart, I can say that if I think of these children who were brutalized, I can only be enraged that they were so horribly victimized, that they may take decades to rid themselves of the imprint, the injury. And that some of them may not succeed. That, as with physical injuries, some may be maimed in ways nothing, no belief system, no doctor, no miracle can undo. There’s no way out of that fact. And the anger associated with it is a direct representation of the value of what these fiendish acts brutalized. The validity of outrage doesn’t change any laws of power or prosperity or. Or. Those who perpetrated these violations don’t deserve the waste of our energy by stewing in anger over their sicknesses. They are responsible for themselves. We are responsible for how we allow this to inform and inspire our actions as people united in love and in protection of value and nothing more.

That Penn State did what Penn State has been doing all this time is not a shocker. It’s appalling, yes. But it’s not a surprise. We don’t grow into ownership and embodiment of truth overnight. Penn State won’t any time soon, if ever, since they stand only for profit. We cannot trust institutions. No matter how long their tradition or how reputable. We can work with them to further our own purposes. We can join with them to further our own causes. But we can never assume that our need for diligence in discernment or our responsibility as the gatekeepers for our children (or anything we nurture) is even slightly lifted by the presence of any institution’s reputation or supposed reliability or statement of purpose. We, the parents. We, the neighbors. We, the administrators. We, the co-workers have to assume the buck stops with us. Not with the guy with more clout. Not with the bosses. Not with the lady with the social services degree. Not anywhere but here. With the one living her life, cultivating what she believes in and making sure the fruit of her fields sing of integrity down to the core. Because at the end of the day, association with an institution does not make a person any less vulnerable to exploitation or apathy. It’s up to the individual to raise and keep the standard, to grow up beyond a need for mommy/daddy/institution to parent, rescue, prosecute. It’s that simple and that tough.