American Society of Bioethics and Humanities Annual Meeting October 21, 2005

A friend of mine has a son, a sweet young man in his twenties. He has a family and works for a moving company. He developed heel spurs that became progressively more painful and disabling. About two weeks ago he went to the hospital and had extensive reconstructive surgery on his foot. After the surgery, his mother called me from his hospital room and told me he was in terrible pain. He had a patient controlled morphine drip, but the dose was not sufficient. I asked her if they had told the nurses, and she said they had, but that nothing had been done to adjust the dose.

I just know that no white person would think, “they are withholding pain meds because I am white.”

But this young man is African American, and he and his mother thought that maybe he wasn’t getting adequate pain relief because he was a big, bald headed black man, just like you see on the cop shows on tv. And you know what, they may be right, because there have been several studies showing that people of color, especially black people, just don’t get the same level of pain medication as do white people, even for the same kind of injury.

How many of you, reading this, have deliberately committed a racist act, have done something on purpose that you knew would be hurtful to a person of another race in, let’s say, the last six months or so?
I doubt if many people would say yes.

I would imagine that if you were a mortgage lender, or a city official responsible for funding schools, or a member of a jury, you still would say no. White emergency room physicians would say, not me. There was a recent study showing that, all other factors being equal, an African American woman reporting chest pain was 40% less likely to be referred for cardiac catheterization than a white man. I showed this study to a cardiologist I know and he scoffed. He didn’t treat black people any differently.

So African Americans continue to be harmed by white people, but white people aren’t doing anything to harm them.

The ethics literature would have us believe that African Americans are mistrustful of white people and white institutions. This ethics literature is written by white people. If black people wrote the literature, it would say that white people and white institutions are untrustworthy, and black people are normal. In the black-written ethics literature, the most urgent question would be, “How can people do things that hurt people, and deny that they are doing them? What’s wrong with white people?”

I have to say that this is a tiring problem. Back in the sixties, a lot of black people thought that if we could just explain things to white people, make it really clear, then white people would recognize what was happening, and would begin to live according to the Golden Rule: “Do unto others as you would have them do unto you.” But that didn’t happen. Actually black people tried a lot of strategies: integration, separation; non-violence, violence; service in the armed forces, higher education, music, art, and many more. But none of them worked.

They don’t work because black people aren’t the problem. It is very much like the situation in intimate partner violence, where all the attention is focused on the victim, as if there were no agent, no man, actually hitting someone. The only person in these situations who has any power, and in particular the power to change things, is the oppressor. And this is where the irresistible force of the patient autonomy movement meets the immovable object of white skin privilege, reinforced by white coat privilege. Patient autonomy implies power, a personal history of choice making. Thanks to mortgage lenders and school funding officials, not to mention our sickeningly inadequate health care non-system, black people in this country have a lot fewer choices than do white people.

A person with power lives in a very different world from the disempowered person, but doesn’t have to recognize that fact. This is the essence of privilege. The person with power doesn’t even question that their own experience is not universal. When officials were planning the evacuation of New Orleans from hurricane Katrina, it never occurred to them that there were people who didn’t have cars. That there were people who couldn’t walk. These people were invisible, not by chance or happenstance, but structurally.

So here is this centuries long, generations long history of deprivation of choice, and active harm, enveloped in denial, and now we, I as a physician, are telling people, well, when you come to the end of your life, a life that has been tragically shortened because of discrimination, poverty, inadequate education and unattainable health care, in the final days, you have a choice. You can continue to fight, or you can give up and die. Of course we qualify the “die”: peacefully, naturally, with dignity. And of course, continuing to fight means long term care in an inadequately staffed nursing home, with tube feedings and bedsores. And we offer this choice with a straight face.

I am studying perpetration, which is my all-encompassing term for any betrayal of the expectation of trustworthiness that I believe we are all born entitled to. I am looking at child abuse, racism, misogyny, class privilege, environmental rape, and what they all seem to have in common is a failure of empathy, a special kind of empathy that I think is hardwired into our nervous system.

I believe that we are born with a capacity to feel, not just to know, but to feel, in our own body, the feelings and experiences of other beings around us. There are studies of brain activity using functional MRI that support this idea. I think that before language developed, this was the way that all beings, humans, animals and plants, communicated with one another. This is the basis of the many stories from indigenous people and even the Judeo-Christian Bible, of a time when all people spoke the same language, and animals, plants and even mountains and rivers spoke to human beings and taught them, and not in the way that caged laboratory animals teach us.

This level of telepathic empathy, or what I call radical empathy, became less important after the development of language. Language offered a major survival advantage, but did not completely extinguish the capacity for radical empathy. Anecdotally, there are many societies, mostly small groups living close to the earth, in which radical empathy is taken for granted as the basis for social living. “Do unto others as you would have them do unto you” is a verbal distillation of the felt experience of someone whose empathic capacity is still intact.

With this in mind, I would like to make a few suggestions. One is to develop within yourself as deep an awareness as possible of your own feelings, to break through the denial that shrouds so much of everyone’s pain. Denial is lifesaving, but it is also life- threatening, especially at this time in the earth’s evolution.

The second is to make a serious, dedicated effort to learn about the inner lives of people who are not like yourself. People of color are way ahead of you in this, we have always had to know a lot more about white people than white people knew about us, or even about themselves. But there are a lot of books, art, and other sources of information. There are websites and workshops for recognizing and overcoming the white skin privilege which makes the experiences of others so invisible.

Beyond this consciousness raising is organization. When you see racist behavior or hear racist talk, speak up. Educate your fellow white person. Don’t expect some black person who is sick and tired of white folks to do it for you. Take responsibility wherever you are.

But you know what? That is the easy part. There is another, much harder part. Here’s an example: let’s say that you have just met someone, someone like yourself. You’re having a good conversation and you decide to go out. Walking along with your new friend, you see someone with a dog, and your new friend says,”let’s cross the street. I’m afraid of dogs.”
What do you do? Do you drag your new friend over to the dog, tell him, dogs are nice? Do you try to explain that this particular dog may have live saving information for him?
Do you slap your forehead and say to yourself, oh, he’s left handed, of course, I remember now, all left handed people are afraid of dogs.

I hope not. I hope you would cross the street with your friend, and when he feels comfortable, you would ask him, what happened? Why are you afraid of dogs? And then prepare to hear a heartbreaking story, a story of betrayed trust.

Don’t make excuses for the dog that changed his life. Don’t try to explain its behavior or tell him he misunderstood. Listen, and allow your heart to be broken.

So this is the hard part, what is most essential. When you hear a person of color express fear or distrust of doctors or health care institutions, don’t just file it away as a factoid of cultural diversity. Ask why. Ask what happened. And prepare to hear a story that just might break your heart.

Racism, misogyny, class privilege, environmental rape, all forms of perpetration persist because it is just too heartbreaking to feel the pain of the victims. Nobody wants to even use the term victim anymore, because to think about human beings of African descent being cruelly victimized for 400 years by people who define themselves as white, based on the amount of melanin in the skin, the width of the nose, the shape of the lips: who could really feel that and not be crushed with grief?

But our survival as a species depends on just that. We are on a downward spiral of pain and denial, constricted and defended hearts. Even if we grown-ups don’t want to see it, the children know it and it is making them sick.

But the most amazing thing, the most essential truth about the heart, is this: when it is broken open by the pain of another, it only gets softer, it only gets larger.