This blog is for the many medical (and other) students that participated in our program. You are the future of America’s healthcare, not the politicians and insurance companies, and if you do not understand the dilemmas that you will face, you will be ill prepared. You might be the greatest of scientific minds, you might have graduated at the top of your medical, nursing, or social work school, but if you do not have the skills to interact with your patients then you will not truly be serving them. If you cannot recognize the biases at work within yourself, how can you then diagnose and treat someone else’s diseases? I say to you today, the opportunity for healthcare workers to heal thyself is here.
I recently had a conversation with a medical school faculty member about some of the conflict in our conversations with the community. When I discussed the difficult emotions this topic brings up in our participants at medical schools, he replied, “That is not the school’s problem: we are here to teach students.” That statement stayed with me, because really, racism is the problem of everyone in the healthcare field. When today’s students leave the academy for their practice, they are going to apply what they’ve brought from the academy to issues they’ll encounter in dealing with patients of different backgrounds.
We experience a tremendous amount of conflict when we bring The Deadliest Disease to medical schools and I always have to ask myself when we encounter resistance on an issue, “What is really at stake?” Most of the time the answer is fear– fear of the unknown, fear of change. Now, scientists understand that change is inevitable: if you do not evolve, you or your species die. America is at one of the greatest cross roads in its history and its students have a unique opportunity to change the DNA of healthcare. The question is, do they have the courage to address disparities openly and honestly?
The disease of racism affects everyone, but we can eradicate it like any other deadly illness. Smallpox, for example, killed millions of people just like racism is killing millions of people in everyday through poor housing, education, economics and health. Smallpox was eradicated through wide-reaching and concentrated vaccination campaigns, which required both vigilant reporting of the disease and the collaboration of all stakeholders involved. Much of the early campaigning was primarily educational, discussing the vaccination with various populations to improve their willingness to participate. The same type of educational campaign can empower us to deal with racism and will require the same reporting of, and response to, incidents of racism or healthcare disparity.
In every city we present The Deadliest Disease, I always choose one word to sum up my experience. Oakland was “heartfelt”. Newark: “frustrated” by the 100 walk-ins that showed up unexpectedly. I was “encouraged” at Temple. The one word that I can utilize to sum up our overall experience with the project is “arrogance”. Arrogance most notably plays out in health disparities by exclusion, such as when you work with someone who makes decisions that they decline to discuss with you, but then inform you about how you are to proceed. That is arrogance.
Arrogance in the healthcare profession plays itself out in the policies that are designed without the input of the very people they will affect. Historically, we’ve seen extreme arrogance when people with intellectual disabilities or women of color receive unnecessary hysterectomies because their reproductive systems are not valued. Arrogance also plays into liberal racism so that you might have participated in The Deadliest Disease, but when you left, you failed to assist in changing the dominant belief system or just said to yourself, “Those things happen but I am above that”. When I ask whose disease is it and you reply, “Not mine,” then you immediately move to a place of arrogance, because all of us are affected and must be part of the solution.
I have been writing a book about the experiences that The Deadliest Disease has presented to our organization while crossing the country. In this book there was a chapter that was entitled “The Twin Battering Rams: Racism and Capitalism”, but after various challenges this year, I have renamed the chapter “The Four Horseman of the Apocalypse: Arrogance, Privilege, Racism and Capitalism.” Here’s an example of why I changed the title. Though we had a great time in Philadelphia while we were at Temple, several times we observed the intersections of privilege and racism.
The day before the event, I arrived at the medical school, which is a gorgeous brand new building. Our presentation was only the second event to be held there, the first being their open house. It was a long drive and it was cold outside, so I arrived bundled up with a black wrap, hat, and gloves. When I entered the building and approached the security desk, the receptionist was reading. I told her that I was there to see Beth, but she just glanced at me and said, “You are in the wrong building, the clinic is down the street,” before returning to her book.
I counted to ten, then stated, “I have an appointment with Beth ***.” The woman looked up again and replied, “That person is not in this building and I am sure that you have the wrong building. The clinic is three blocks down the street.”
Now those who know me are well aware that I am not the most politically correct person, but I decided that I was going to muster the most patience that I could for this woman. I said, “Okay, we are going to do this again. I am Crystal Emery and I have an appointment here with Beth ****.” Again, without looking in the directory, she simply replied, “Lady I just told you, you are in the wrong building.” She assumed that because I was black, in a wheel chair, and not in a suit that my business was with the clinic. At the same time I was speaking to this woman, the person I was seeking walked down the hallway and exclaimed, “Oh Crystal, I am so glad that you made it with this bad weather!” The receptionist looked at Beth and then at me and said, “Hi Beth, I didn’t realize she was here to see you!” What was particularly ironic about this situation was that next to the receptionist was a three foot Deadliest Disease poster with my name on it. Arrogance, Privilege, and Racism.
Another example: a doctor that I really like once asked me to participate in a study, since I have a form of Muscular Dystrophy that is hereditary even though I lack any family history. I trusted this doctor and I listened to his request. At the end of the conversation, I asked him if he would have his daughter participate in this study and without pausing, he said, “Oh no, these types of studies are very tricky and could have some negative repercussions.” When I declined to participate, he looked at me so puzzled – he was totally oblivious! Two things happened: I never went back to him and I wrote him a letter explaining that if he did not value my life as much as his daughter’s, while the only difference between the two of us happened to be the color of our skin, then that was clearly racism in action.
One more example: my dentist has been my dentist for twenty years, both when I had great insurance and when I didn’t. When I was recently in his office, he was talking to me about some work I had done about oral health in Connecticut. He started telling me that he worked at a city clinic one day a week because he really could not have “those people” in his office. He continued by saying that the state would pay him only pennies for these patients compared with his regular patients, so the clinic was the only place for him to treat these patients, especially since their children tended to be unruly.
Now, when you are in the dental office, you are not usually doing the talking, but as I was leaving, I was able to tell him, “Michael, we have been friends for a long time, but there are some things that I need to point out about our current conversation. You are extremely proud that you work at this clinic and that you would get paid better if you didn’t, but you constantly referred to your patients as “those people” and talked about them as second class citizens. That is what racist liberalism looks like: when you act like a do-gooder, but consider the recipient of your help less deserving than you are. I am not saying that you should stop working at the clinic, but I suggest that you consider how you interact with the clinic’s patients, because, believe me, your patients must feel the privilege and arrogance that you just now expressed.”
If we seek to treat every patient with their human rights, with respect and integrity, that means we need to bring healing to the process of treatment, which requires learning to communicate, and teaching not only the science of the medical profession, but the science of humanity.
Ultimately, this means understanding that I am my brother’s keeper and that the privileges and rights that I require for myself should be the same for every person regardless of their race, class or status. Some preliminary findings of the 2010 census suggest that in major portions of America, not just urban centers, people of color under the age of 25 represent more than 50% of the population. We have no choice at this time but to begin to walk down that very difficult path of bringing healing to America’s psyche and the medical profession must lead the charge in that. We must walk together, not with the medical community dictating what is best for people of color, but with all stakeholders united and willing to learn from each other’s experiences to become better providers, better administrators, better policy makers, and better patients.
Ordinary people can do extraordinary things, but it takes courage. I am going to use Cindy *more description of who she is? and what has she done that was action?* as an example of courage in action. She said to me that she has gone from conference to conference where everyone reads the same literature on health disparities and sees the same statistics from which they develop elaborate action plans, but no one dares say the word “racism”. The big 900 ton elephant is sitting in the room and no one dares say the word! Like any disease, before you can eradicate it, you must identify it, and take it apart to understand its workings and educate yourself on how to prevent its spread. If you do not have the courage to say something about it when you see it or take an action, you are only creating an environment where it can thrive and grow, because in your silence, you are saying that this behavior and set of attitudes are acceptable in Donna Brazil’s famous words I’m not sitting on the back of the bus. Please take action, starting right now, from the simplest gesture to enforcing policies to survival of our country depends on it.