A Year In The Life of The Deadliest Disease In America

Temple University - November 2009

In the past year I have tried to write this blog so many times. For some reason each time I tried the words didn’t come easily; it seemed as though there was not enough time to find the right words, or perhaps it was that I didn’t really know how to express what I was feeling about all that has occurred within the last 12 months around the project The Deadliest Disease in America.

Even now I struggle to find the words to describe the evolution of the project – the highs and the lows. How can I express to you, in a palpable way, how each city we visited was different? How do I express the depths of my recurring disappointment every time I am confronted with subtle forms of racism? How do I withstand the challenges to my efforts? How do I enlighten leaders and professionals in the medical industry to stem the tide of racism in healthcare?

I was not prepared for all of the negative, ugly feelings; masked by education and expressed using eloquent language that would be hurled at me. The venomous language came from everywhere: medical school personnel, hospital personnel, representatives of foundations, corporations and most sadly – my own people of color. The greatest pain was witnessing the fear that institutionalized racism has embedded in people of color. I’ve come to the realization that many of my people are afraid to take a stand against what they know to be an abomination.

So for the last ten months, I have tried to write a blog. I have tried to write honestly about my effort to help people understand the reality of disparities in healthcare access and delivery in this country. In large measure, my research and experience have shown me that it is race—not class—that determine the level of access and the quality of care. One of my mentors told me that if I tell this controversial truth, I will alienate myself from those who could help me. Another mentor said that if I tell the truth as I see it, then the medical schools that I’m trying to bring the project to, will never permit me access to their students or faculty.

The foot soldiers of The Deadliest Disease In America! (Johns Hopkins Medical School - Jan. 2010)

Still I must share a recent experience. We held a program at Duke Medical School on March 20th. The week before we went to Durham, we had conversations with medical school representatives in Tennessee, Mississippi, and North Carolina. In those discussions I kept hearing phrases like “the dominant culture.” I was told: “The ‘dominant culture’ here (in the South) does not believe that racism exists in healthcare. Therefore, why should we spend the money to support this type of project? We don’t need it.” Afterwards, I spoke to some of my friends, Dr. Camara Jones, in the public health sector and told them about my conversations. Dr. Jones got a great laugh out of my story. She explained the evolution of the language and that the “dominant culture” is now white males. It was only then that I understood what others expected me to already know, the secret language of racism. Even with that clarity established I still don’t understand why white males don’t believe racism in healthcare exists. Let me caution my own self, because I know that not all white males believe such a thing.

After just one week of telecommuting through Tennessee, Mississippi and North Carolina, my language changed. It became bitter and in turn, I felt angry. I had allowed myself to be deeply and negatively affected by my southern journey. While I don’t believe that what I experienced is the sentiment of all who reside in the South, it still felt pervasive and constant. Nevertheless, I refuse to allow the Deadliest Disease in America to change me for the worse. If I allow racism to kill my spirit, then it has won. If this disease makes me as mean, ugly and hateful as some of those people that I have talked with, or makes me bitter and without compassion like those who have attempted to sabotage this project, then they have won.

I admit I am growing weary. Yet even I know that I shouldn’t falter because this work is too necessary. I remain encouraged by the faces and comments of doctors—many of whom are white—who have said to me, some with tears in their eyes, “Thank you, thank you for coming and for being brave enough to say what I cannot say! Thank you for acknowledging that I am here on the front line trying to get all of my patients the best care.” Those comments, along with the letters that we receive after every event, push us forward because we understand that the work must be done if America is to remain great. America can only be great when she is fulfilling her promise to all of her citizens. Each and every one of you who is reading this blog – I ask you to reach deep down to find the courage to stand up. I need you to stand up. When you stand up there is another person who gets courage from your courage. No one program and no one person can move this mountain alone. But with God’s love and guidance, we can make America the great and compassionate country that she is built to be.

In my last blog, a year ago, I said the key is love. This year I say it again. I’m just echoing what Martin, Gandhi, Jesus and all of the great teachers before me have said (I am not claiming to be one of the great teachers!) – it has to be with love. Racism will kill the human spirit if left unchecked. I will not allow it to kill mine and I hope that you will not allow it to kill yours. Do something today that demonstrates that you are a loving, caring, thoughtful, respectful human being prepared to treat and interact with others in the way that you would like others to interact with you. Prepared to support and defend the right of every citizen to have access to quality healthcare.

We should not want the world to have the image of the United States of America as this crazed body politic. Our country is often seen as hypocrisy where people talk about democracy and equality for all—but really it’s only for a privileged few. America showed a dark side of itself when bricks, death threats, and disrespect was hurled all over Washington during the fractious healthcare debate. The ugliness reached a peak when, former civil rights leader, John Lewis was spat upon at the signing of the bill. Our nation should be one where applause is given for legislation and activity designed to provide critical aid to Americans who need it most and are our most vulnerable?

Don’t just read this blog and agree with it – Do something. Let it start with you. Don’t stand by and let hate thrive – take action. There is enough in this world so that everyone can experience prosperity. Make sure to look at your attitude of how you treat one to another. Is it with disgust or contempt or is it with honesty, love and healing thoughts? There is power in numbers. Like the advertisement for the Census says: Stand up and be counted! Stand up for righteousness. Stand up for equality for all Gods, Adams and Eves and their countless generations.

America, America, God shed his Grace on thee.

Namaskar,

Crystal

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2 Responses to “A Year In The Life of The Deadliest Disease In America”

  1. Donna Whitney Says:

    I teach a college-level course called History of Scientific Thought. We always include a unit on the Tuskegee Study. In general, very few of the students have ever heard of this episode in American history until they take the course. There is a lack of awareness – I think a deliberate lack of awareness – of racism in medicine in this country, and when someone penetrates that lack of awareness, some people welcome a closer look, and some resist.

  2. Winter Says:

    Hi Crystal, this was a very moving piece. Keep up the good work.

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