The Twin Battering Rams of Oppression: Racism and Capitalism and Their Children: Arrogance and Privilege

November 19, 2010

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.

Ouch.

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.

A Year In The Life of The Deadliest Disease In America

April 12, 2010

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

The Power of Many

March 26, 2009
Successful Collaboration

Successful Collaboration

I dedicate this post to my friends Dana Roc and Zita Dixon

Advocacy: ‘The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support’

Community: ‘A body of people having common rights, privileges, or interests, or living in the same place under the same laws and regulations’

Non-profit: ‘not established for the purpose of making a profit’

Philanthropy: ‘altruistic concern for human welfare and advancement, usually manifested by donations of money, property, or work to needy persons, by endowment of institutions of learning and hospitals, and by generosity to other socially useful purposes’

Leadership: ‘an act or instance of leading; guidance; direction’

What do all of these words have to do with racism, or the microcosm of racism in health care? They either hinder healing or they assist in healing. Can they obstruct progress under the disguise of assisting?

I have met and had the pleasure to work alongside many wonderful organizations and individuals that are more than willing to team up with anyone of integrity and courage that will further their cause. We have had the true fortune to meet with and fight along side organizations that are right there on the front line: Dr. Aletha Maybanks, Bob Griss of the Institute of Social Medicine & Community Health, Cicatelli and Associates in New York, Denise Materre in Colorado, Janice Walker in New Jersey, The Leadership Diversity Forum in Connecticut, Michelle Materre of Missing Pixel in New York, SEIU in Washington, DC, and the list goes on. These individuals and organizations are not just talking the talk, but they are walking the walk and taking part in the actual work that is necessary to promote/create change.

 

Collaborations with Love

Collaborations with Love

What I have found is that there is such a feeling of isolation surrounding us – the battle is only made harder when we go to reach out to other organizations that do similar work, only to end up falling into a sort of ‘Crabs in a Barrel” syndrome. It seems that the fear of honest collaboration, which is heightened in this harsh economic time, is endangering the positive momentum that we could create together.

In the last few months, I have found myself getting extremely frustrated. I work with groups whose mission statements and advocacy agendas are to work towards closing the gaps in disparities within the health care system. They receive large amounts of funding and financial support to help them achieve these goals, but refuse to collaborate effectively with other organizations or foundations in order to make progress. It is not possible for real advancements to be made in addressing and designing programs through an organization that will not even bring us to the same table.

It seems that the agendas of some other organizations are ambiguous at best. This mix was evident in the most recent national discussion of the dilemma in current health care reform at President Obama’s Health Summit two weeks ago. This event was attended by insurance companies, lobbyists, and many big players at every turn, but you would have been hard pressed to find any person or group who was there as a representative for the average person of color. There were no advocates out there screaming loud, “What difference does it make if we have access to health care, but are still treated as second class citizens?!” These Dilemmas and lack of collaborative advocacy that represents all people drive me crazy.

Yet I’m relieved when positive change happens, like when we take a medical school like Yale University, and pair it with a grass roots organization such as Alpha Kappa Alpha or Omega Psi Phi, and we combine that team with a foundation. When we merge those relationships with an Office of Minority Affairs, and combine that union with various religious organizations, real progress and change can come! We need to all sit down together and look at what the real issues are that are relevant to our community. If we could just pick one issue, and work together as a team, we can annihilate that which is negative and replace it with a positive. We must learn from our achievements and our failures – perfectly exemplified in the recent election of President Barack Obama. Despite the multiplicity of levels of participation, (with very different agendas) differences were set aside bringing together the most influential coalition in the world, the average Joe from around the corner, and all of those in between, to succeed in electing our new president.

Along my path I have encountered groups that say they will collaborate with you, but only end up doing so in name. There is no shared agenda or shared efforts. You do all of the work and they get to put their names on the project at the end of the day. Oh yes, we have met our share of those. Organizations and people like this will tell you that their support is in simply letting you use their name. Our experience has been that later when we read their annual report, or we see an article that they’ve done, they include the work that we did, they include our data, they receive what should be our credit and resulted funding. They claim credit for what we work so hard to achieve. Sadly this has become an acceptable understanding of partnership and collaboration – but I believe it must stop. Real change is not going to happen through lazy relationships or dishonest collaboration.

We are not afraid to work

We are not afraid to work

This behavior, and the resulting distrust factor, is all too disturbing. No one trusts the other one anymore, and it seems that too often, we may have good reasons for this. Our organization’s own history of relationships has been plagued by one of the biggest organizations in New Haven, who we did a project with not so long ago. They, of course, had a better press machine than us, and at the end of the day, this allowed them to get credit for all of our work. We did a project in Stamford, and were faced with a lack of support from the then-director of Public Health (not the current director). On the day of the event, when the project was coming to a wrap, he came just in time to talk to the local film crew – and set about to offer an interview. He talked about all of the work that ‘his office’ was doing around breast cancer, and never once mentioned our program, our facilitators, or our company. His staff person did not even suggest to him this very obvious omission.

Though there are many examples and reasons to be wary of trusting others, we must get beyond this distrust factor. Mistrust can be a dangerous and destructive quality. The truth is that if we do not have faith, we will miss the opportunity to work with those who are wonderful and sincerely committed to ending disparities in health care. Some may attempt to employ strategies that work against enriching and empowering real communities, rather than hospitals and corporations. To do so is to be disingenuous to healthcare reform and health care advocacy for people of color. We all know the saying, ‘divide and conquer’, but it is our own egos, greedy thoughts and sense of survival that lead us down this mortally wrong path.

I am happy that what we are doing with our most current project, The Deadliest Disease in America, is a good example of honest collaboration. We are collaborating for every event, with six multi-level organizations (community groups, religious groups, politicians, universities, civic organizations, and medical schools) that have a stake within the specific community that we are working with, and have demonstrated a commitment to eradicating racism in health care. So far, in the past twelve months, our organization has collaborated with over sixty groups across the country. A sample of these organizations are: Alpha Pi Alpha Fraternity, Association of Black Women Attorneys, Cicatelli Associates, Coalition of 100 Black Women, Connecticut Health Care Foundation, The Diversity Leadership Forum, Global Cancer Control, Institute of Social Medicine & Community Health, Islamic Temples, Latinos for National Health Insurance, Missing Pixel, Service Employees International Union, State Offices of Minority Affairs, The Unitarian Church, Universal Healthcare Foundation, and Working Films. Each of these organizations have strong similarities in agendas, which are to expose racism in health care, to educate people, and to create projects that eradicate this racism. The places where we each differ from our partners provide opportunities for synergistic developments, bringing a whole different level, making our alliance that much stronger in waging the greater battle. It is when we join together that we can represent a different, stronger constituency; yet continue to move the cause forward in our own unique way, and therefore have more impact.

As you read this blog, ask yourself, what are you doing on an individual level? What institutions are you interacting with everyday, and what are they doing? How is your community divided? How can you get these organizations to work together? How diverse is the color in this community within the institution, or is there mainly one color represented? You must not accept the one and only syndrome, but strive for people of color to be at that table. What are you doing to communicate and educate? If your answer to this question is nothing, then you need to get off your lazy ass, because there is a whole lot of work to be done – and it starts with YOU. If you are a bystander waiting for change to happen, waiting for America to become more humane, then you just might have become part of the problem. Do not miss the boat on this one.

We have choices here. We can partner for the common good of our country and our world. That starts by cleaning up ourselves and the baggage that we bring to the table.

Or,

We can be petty, small-minded crabs in a barrel, allowing our egos to dominate over any chance of far-reaching and inclusive progress.

This is a complex situation, but the answer is easy. It starts with you. Will you perpetuate agendas that promote self-interest or will you honestly collaborate with organizations that seek to empower and improve health care opportunities for all?

Namaskar,

Crystal

For more information, including a list of events, please visit our website at http://www.urutherighttobe.org

The Cure to the Deadliest Disease

December 31, 2008
The author

The author

At the end of 2008 we still face the Deadliest Disease. We still see greed and racism all around us. Insecurity and competition still drive us to sabotage one another. Our economy is in shambles. I know the cure to the Deadliest Disease: it’s love.

Doesn’t it sound so simple? If we only loved each other as much as we love ourselves, all our problems would be solved.

I have to admit, though, that this solution would lead to a whole new set of problems because we don’t truly love ourselves. I think most of us don’t know the true meaning of love (myself included.) We throw around phrases like, “If he really loved me, he’d buy me that car.” Or, “If she really loved me, she’d do what I want.” And my favorite, “If you loved me, you wouldn’t do me that way.” But this isn’t the essence of love.

Recently I’ve been feeling drained by numerous conversations about racism and healthcare and I’d forgotten what moved me in the first place to take on this work. It really is the belief that there is good in everyone and that people want to make the right choices—but because we’ve become so separated from our internal compasses, from the voice of God within us, we perceive the world through a kaleidoscope of misconceptions.

I spend all day talking with people about race relations and capitalism and disparities in health care. What I’ve found is that some of people who swear they’re the leaders in closing the gap are the biggest perpetrators. They don’t move forward with love for their fellow human beings but instead operate with contempt based in superiority.

Our society’s greatest misconceptions are about race. Webster’s defines race as, “a local geographic or global human population distinguished as a more or less distinct group by genetically transmitted physical characteristics.” However, this definition is misleading because it depends on genetics. Race has simply no genetic basis. Ask any scientist. People of one “race” may be very different culturally, yet very similar genetically. A study was done where all the participants came from very divergent cultural backgrounds and locales. It revealed that the DNA sampling of an African American in America was more similar to an Asian in China or a Caucasian in Australia than to another African American.

The first human was black: scientists have shown that our earliest ancestor lived in central Africa. It’s absurd for us to treat one person as less than another based on such arbitrary distinctions as “race.” The truth is that, although human differences span a number of different spectra, we all began in the same place – Africa, which makes every person on the planet some degree of Black (this includes George W. Bush.)

Just imagine what the world would be like if we followed any of the great teachings. First Corinthians 13 says:

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

This is one of my favorite times of year because people from so many great traditions attempt to celebrate real love. As I move forward on my journey I’m learning to love and respect myself more. This leads me to love and respect my fellow brothers and sisters more. As I reflect on this tremendous year, I believe that the love vibration is spreading. This is a good thing. We have the cure for the Deadliest Disease in America. We hold it within us.

The Buddhist tradition teaches:

So with a boundless heart
Should one cherish all living beings:
Radiating kindness over the entire world.

The Bahia say:

Do not be content with showing friendship in words alone, let your heart burn with loving kindness for all who may cross your path.

God’s love radiates out from our core to the rest of our beings. We’re never separate from it. Love invites us to accept ourselves just the way we are. To grow and evolve. We rest in this assurance now and throughout the year. God is love: love expressing itself within us and as us.

Our country and our world are at their greatest crossroads. So let us pick up the shield and sword of love, and pierce every heart as we take a step forward into a new world.

Namaskar,

Crystal

I’m Tired of Being Black

December 11, 2008

post-copy

Stop gasping. Yes, I did say, “I’m tired of being Black.” I bet you Obama is tired of being Black, too! Do my white friends get tired of being white? Do my rich friends get tired of being rich? I’m sure they don’t recognize the privilege that comes with their skin tone. How many times each day does my friend Pat remember that she’s white? Being an African-American, I may not be thinking about the fact that I’m Black, but you’d better believe that when I am out in public it is some asshole’s goal of the day to remind me. There have been several times in my life that I’ve been brutally reminded of my skin color after having forgotten about it. The most recent was two years ago when I was in the hospital. A nurse was treating me terribly, seemingly without provocation. I kept asking myself crazy questions, wondering if my illness was playing with my memory: Did I throw up on her? Did the blood that shot out from the IV get on her clothes? It was only later, when I heard her outside of the room talking to another nurse about “those Black people,” that I understood. I had done nothing to merit demeaning treatment from the nurse in charge of my care—other than the apparently unforgivable offense of being born with dark skin. Hell, it made me so mad that I decided to get better just so I could write a letter to the hospital’s CEO about her behavior!

I really wish I knew how it felt to be free.

A friend and colleague of mine, a highly respected researcher who does work around disparities in healthcare, was denied a grant recently, supposedly because she had not presented a strong enough case for the prevalence of racism among physicians, nor supplied a quantifiable means to chart it and extinguish it. Can there actually be someone in America who believes that racism does not exist in healthcare? This person must have no television, no radio, no newspapers. Here are the hard questions: Was she turned down because she’s a Black physician? Since she is at the top of the research game, it’s not her credentials, for they are impeccable. Or, is it the subject matter? Can we truly not come to grips with the fact that hospitals and physicians constantly contradict the Hippocratic Oath—i.e., the hypocritical oath.

Even better: A foundation I spoke to a few weeks ago said they were no longer putting money into disparity conversations or programs because Obama’s election to president was sufficient evidence that the race divide in America was well on its way to healing. Believe it or not, these are the kinds of utterly ridiculous conversations I have day after day.

I’m invited to many disparities conferences and meetings, but often, I’m the only brown person there. If I disagree with a statistic or the speaker’s point of view on how best to solve disparities issues, I automatically become the spokesperson for Black people, but I am attacked when I point out a contradiction. I once spoke to a predominantly white audience at a church (now, saying “predominantly white” is funny because, of the few hundred in attendance, there were only 5 people of color, and two of them were not Americans). I asked the congregation why were they there that day. Were they there to find out how they could be part of effective change, or were they there just for intellectual masturbation? You would have thought I’d asked them to take off all their clothes and run wild. As the audience proceeded to direct remarks to me about people of color, not one of my colleagues intervened on my behalf—nor did the moderator. One old lady said, “I’m tired of hearing about you people.”

I wish I knew what it felt like to be free.

Now, let’s talk about going to meetings and conferences where there are one or two other people of color. I call this THE ONE AND ONLY CLUB: Black people who exacerbate the problem. I am sick of being in a room in which there’s only one other person of color and they are afraid to look at me because I’m Black. It’s as though they’re afraid we’ll be perceived as a token minority, instead of as individuals, if we happen to acknowledge one another’s presence. Hell, when I’m in a room and I look across the room and someone’s looking at me, I always nod and give them a smile. I don’t care if they’re Black, purple or Klingon; I always nod and give them a smile. Why is it that, when I’m in the room with my educated brothers and sisters and I look in their direction, they stare right at me then look away, as if I am invisible? What the hell is that about? In those situations, if there’s some seriously ignorant stuff being said, I always try to dispel the absurd myths. “No, I wasn’t raised in a slum,” or, “Yes, I had a father.” However, the other person of color will act as if what I just said was from another planet. In so doing, they protect and condone systems that work directly against the interests of persons and communities of color. Or, there are Blacks who will directly express the belief that we are inferior (yes, I just said that! This is no typo). An idiot recently told me that my website (www.urutherighttobe.org) is as impressive as that of any white organization. Here I was, talking to a Black man who was genuinely surprised that my site was on par with a white organization’s—what does that mean? That I cannot be as good as my white colleagues? That I’m not expected to deliver the same quality product?

Do I sound like I’m tired, angry and a bit pissed off? Hear me loud and clear: I AM!!

From going to Washington and my post-conversation, I think there is a disconnect between policymakers and their constituents, the public they profess to care about. Sometimes I think I’m just getting older or more naïve. It’s amazing to me that any person of color survives in a system that is so dysfunctional, that offers them no voice, that actively minimizes whatever impact they might have. It’s no wonder that many people of color who are involved in this disparity conversation just don’t really say anything. They’ve been there; they’re discouraged; they have no desire to participate because they don’t think it will make a difference. For me, though, if I didn’t think I could make a difference, I would feel complicit in that system. I would feel as though I were enabling the disparate treatment toward sick persons of color. I just can’t do that; I won’t do that. I tell people that we all must stand up and fight. If it wouldn’t be good enough for mine, then it’s not good enough for anybody else’s. That’s the standard for me. It’s really that simple.

When I think about the deplorable state of healthcare in this country I always return to the breast and cervical program for women who don’t have insurance at Yale Hospital. They only see women perhaps four times per month. In other words, if you’re having an emergency, you’d better fall on that schedule—which is usually booked three months in advance. To visit the clinic on those four days of the month is to witness a process of dehumanization. Why can’t these women’s appointments be scheduled throughout the week, during the same hours that are convenient to women with insurance or private pay? To the people that funded this program: what were you thinking? Do you think these women only need services four times a month? Would you leave a woman you cared about in that kind of care? No! If it’s not okay for your women, why is it okay for these women? Why do doctors take pride in the fact that they donated some of their time “at a reduced rate” to programs of this kind, when they would never take pride in subjecting their loved ones to this breed of healthcare? Why does it have to be personal before people can feel anything?

What is exciting about the film The Deadliest Disease in America and its accompanying workshops is that it gives voice to individuals who were never given the opportunity to speak before. Have you ever noticed that policymakers, do-gooders and other decision-makers never actually converse with the persons they’re supposed to be representing or helping? One of the young Black men featured in the film was so excited to participate in this project. He said no one had ever asked him for his opinion, or listened to what he thought before. That is why my film is what real community/public health is about.

I’m tired of identifying people by race—that white person, that Puerto Rican, that Mexican, that Black person. Most of all, I’m tired of being Black; I’m tired of speaking about racism in healthcare; I’m tired of a world where we automatically make assumptions based on people’s skin tones, accents. I would like to live in a world in which I was not “Black” or “female” or “handicapped,” just a human being, just a child of God.

I wish I knew how it felt to be free.

I do not look in the mirror and see a Black woman in a wheelchair. When I think about my attributes, when I look at myself in the mirror, I do so with appreciation for the wisdom of God that guides me, the love of God that inspires me, and the life of God that enlivens me.

Namaskar,

Crystal

Ms. Emery Goes to Washington

December 3, 2008

Crystal and her assistant, Eva, en route to Capitol Hill

Crystal and her assistant, Eva, en route to Capitol Hill

eva-and-crystal-have-arrived1

I am neither a politician nor an intellectual, so I find it extremely ironic that, on a trip to Washington, when I thought I was going to a filmmakers’ conference, I ended up on Capitol Hill. Do you remember the movie Mr. Smith goes to Washington? I have always liked Jimmy Stewart, but I have never dreamed (nor desired!) to be him. Those of you who know me are quite aware that I am the most unlikely candidate to be chatting it up on Capitol Hill. I made the trip in order to attend the New Media Institute Conference, sponsored by the National Black Programming Consortium. Through NMI, I have been learning about online media outlets and working on a project in the virtual world “Second Life.” My team consisted of Mary in Honululu, Jason in Utah, our instructor, the fabulous Bryan Carter, who was working between Ohio and Paris, and myself in Connecticut. Everything was done online, and most of the filming was done in “Virtual Harlem.” You can imagine the scheduling conflicts when you’re in four extremely different time zones! During the Washington conference, the different groups of filmmakers were going to present their pieces for one another. The week before the trip, I decided, “If I’m going to Washington, I might as well try to find Donna Brazile.” Every day for a week I called and emailed every person I knew who might have a connection to her. I called her office, I emailed her office, I called her office again, but to no avail. Donna Brazile was not available. On November 15, the day before I was to leave, I called a new acquaintance, John Higgins, in Albany. I said, “John, you know a little bit of everybody. Can you put me in touch with Donna Brazile?’ He was like, “Crystal, when I said I would help, I meant I would help, but you sure don’t ask for easy favors. I don’t know Donna Brazile, and I don’t know anyone who can reach that high.” Then he said, “Wait a minute. I do know this one young guy. I’m going to call in a big favor for you. If anybody could get to Donna Brazile, Umair Khan can.” The next day, en route to Washington, I started getting emails and calls from Umair. Little did I know that he had already started emailing his friends and colleagues to send them a clip of The Deadliest Disease in America. By Monday, Capitol Hill was calling us.

Thus, I had multiple meetings that week. The first was with Charlene Muhammad, formerly a midwife, currently an herbalist, in my quest to hire a project manager. I have interviewed many individuals these past few months, and she was a tall glass of water in a desert of resumes. To work on this project, you have to have a real heart vibration—or you won’t be able to do it. There’s no money, and it’s a hard issue—racism in healthcare? Please, let’s be real! NOOOOOObody wants to talk about that. Then here she comes, Charlene Muhammad, this quiet little warrior; just her presence was so encouraging.

I then met a gentleman named Bob Griss. I’m sure that under other circumstances, our roads would have never crossed. We are as different as day and night, hot and cold, brain and heart. Here’s the thing, though—We both want the same thing: A better America, healthcare for all, a more loving planet. Bob was able to help me frame some of the issues dealt with in the film, The Deadliest Disease in America, in a manner that I had not thought about before. It is important, he said, not to look just at the legislation that is being presented but also at what is missing within that legislation.

The next day we met with Bruce Colburn of SEIU. We both agreed that we had a similar agenda; the difficult question was, of course, how to move it forward. A major issue was trust. Could I trust him with our lesson plans/curriculum? Could he trust me with his union’s lobbying targets and plans for the future? These relationships take time, but after meeting with him in person, I felt that we were on our way to a partnership.

Just when I began to immerse myself in the activities of the film conference, Capitol Hill summoned us. As I stated, I was looking for Donna Brazile. Umair had emailed the film to his friends and colleagues on Capitol Hill. They saw it and loved it. One minute I am being totally dissed at the conference by one of it’s organizers, and in the next Senator Andre Carson is calling—“Come to Capitol Hill!” they said. I said, “Unbelievable!”

just-iss

Getting to Capitol Hill was crazy in itself. First of all, there was nobody that looked like me. Most of the people of color we saw were either security or custodial personnel. Even looking at the congressmen’s aides and assistants, I saw no one. Secondly, as you can imagine, being in a wheelchair, with my arms and legs paralyzed, I need help getting around—and a lot of it. You cannot park on Capitol Hill. Security guards became nervous and obnoxious when I tried to disembark anywhere close to my destination. Once we did make it out of the van, we had to go up the Hill! And it was cold. It was one of the coldest days during my trip, at 32 degrees. Once we made it inside the Rayburn Building, we realized that we only knew our party’s office number—we had forgotten to write down his name! Obviously, we were very unprepared, coming from a film conference. We had no idea that we would be on Capitol Hill that day! As my assistant Eva scrambled through our papers and notes, I was like, “Jesus, take the wheel. Take it from my hand because I can’t do this on my own.”

Eventually, however, we found where we were supposed to be going that day: to Sara Williams’ office, legislative assistant to Andre Carson. God is really funny. He knew that we had to meet with an extraordinarily kind and insightful person who could meet me where I was. Although I was incredibly nervous, I just took a deep breath and started speaking from my heart about what racism and healthcare really looks like, and about creating a system that addresses these issues on the following four levels:

  • Licensing
  • Quality Assurance
  • Certificate of Need
  • Condition of Preparation, a mechanism of accountability in healthcare delivery that ensures that standards will be met

The next three days were a whirl of conversations with politicians, their aides, and legislative counsel about what racism in healthcare really looks like. The size of Capitol Hill is enormous! I’ve been to Washington many times, but I never thought of going to Capitol Hill or the White House. I never desired to do that; it was uninteresting to me. We entered at the Rayburn Building one day, and we left at the Longworth Building. But we went underground in between them! It was amazing! If I wasn’t in the wheelchair, I would have needed a cart to get there. We really don’t think about these things when we see a legislative hearing or see the news at a senator’s office. Going underground and watching senators running through the halls through this enormous maze was quite mind-boggling! Twice we asked people who looked more confident than we were for directions, and in both instances, their directions—given in a very authoritative manner, mind you—were completely and hopelessly wrong. I hope that doesn’t mean that everyone who looks like they’re in control on the Hill is as lost as we were!

Some of the people we met with gave the typical justification for racism in healthcare. “Oh, the deterrents are social and economic,” they said. I, of course, responded, “No. You need to go past that, because when you look beyond the socio-economics, you get to race.” Some of those meetings were very exciting, but the one with Drew Dawson and Marci Harris was the most exciting because there we got to experience legislators with a heart. I’m sure most people would not put this story in their blog, but since I am not most people, we will tell it: After being escorted through the maze this time, we ended up at the right office 15 minutes early. We called my husband Michael to check-in, only to discover that the car and CT, our driver, were nowhere to be found, and that there was a possibility that I would not have a ride back to the hotel. It’s really difficult to try to go into a meeting and be impressive when you are worried about a simple (but significant) logistical disaster. CT had left his cell phone, and we had no idea where he was. Marci picked up that something was wrong and asked us about it with genuine concern. After our meeting, she gave us her cell number and said that if our ride did not materialize within a half hour to call her, and she would find a way to get us back to the hotel. She did not have to do that.

There was a different vibration in Washington than there was last June, when I last visited the area. There had to be a different vibration because I, the most unlikely candidate to go to Capitol Hill, went to Washington as a filmmaker and I left as a lobbyist. God is really funny. You really don’t know what the next minute will hold.

There were so many angels that paved the way for us to go on the trip. First, Jaime Kuczewski at Ride-a-way, who donated usage of a van. She was addressing issues from earlier car rentals, but her giving us that loaner of a van made the trip possible.

Then there was Michael, CT and Eva who took time out from their lives to help move my life forward. You cannot put a monetary value on that kind of love. I bless Umair Khan and John Higgins in Albany, NY, for sending the film around. Then I bless Marjorie Cadogan, for helping me understand where I fit in this political maze! Finally, I bless the people at the National Black Programming Consortium for allowing me to participate—but what is so ironic and unfortunate here is that I missed the presentation of our new media piece that I spent six weeks working on because of a kidney stone episode. Here I am, thinking that this trip is about new media, and as it turns out the trip was really about Capitol Hill and my film The Deadliest Disease in America.

It is important to understand the times that we’re in. People look to Obama as the Messiah, but we cannot forget that the real work has only just begun. For, in order for America to really be the land of the free, we must free ourselves from the chains of racism, capitalism and contempt. We each have to do our part. We will all be required to stand up and work hard towards this change. We are about to have a government team that can work in harmony with each other, in which bills can get passed that benefit the average American. We must remember that it is our job to hold these legislators accountable. As Martin Luther King, Jr., once said, “Injustice anywhere is a threat to justice everywhere.”

I went to Washington for a film conference, looking for Donna Brazile. I ended up on Capitol Hill. However, I still am looking for Donna Brazile. If you know her, please ask her to call. Her office has my number!

Namaskar,

Crystal

Crystal and her so-called "Entourage"

Crystal and her so-called "entourage"

Week 2: Comparative Thought

November 12, 2008

 

From a recent screening at the Tribeca Grand Hotel in New York

From a recent screening at the Tribeca Grand Hotel in New York

 

 

A few days ago I had a conversation with a philanthropist. Up until then, I had been very proud of what I accomplished in the last five months. Given the facts—first, that we’ve had minimal financial resources, and second, that no one wants to talk about race relations, especially in healthcare—we have made and are still making great strides forward with our project.

However, all my hard work seemed to unravel in the span of that twenty-minute conversation. My curriculum wasn’t good enough by this man’s standards. He argued that I had not created a way to quantify the benefits the curriculum delivered. I told him I had come to understand that conversations about racism, especially about racism in healthcare, cannot be measured by analytical and intellectual tools. Racism defies analysis. He pointed out several further objections, questions he thought the curriculum didn’t answer. These were hard for me to understand, because I have been consulting with experts in curriculum development and workshop facilitation, and those folks have been telling me the lesson plans are cutting-edge and quite effective. But listening to this gentleman’s response, I began to doubt my own progress.

When I told this person how very proud I was that our website was getting 3,000 hits a month, he went on to talk about an organization he had been working with, that, after some controversy put them in the public eye, began to see 22,000 hits a day. If you compare 22,000 hits every day to 3,000 in a month, it makes you feel awfully small. He mentioned that he was reevaluating where he put his time and energy, and that this other organization was affecting people nationally. Well, when I researched that organization, I found they were not just affecting people nationally—they were reaching people around the whole world. The scope of their work made me feel so small, like a 110-lb person trying to win a fight against an 800-lb, muscle-bound giant.

I wondered why I had felt sad over the past few days, and I realized that comparative thought is designed to reduce you, to make you feel less than. Our whole educational system is based on comparative thought: if you get an A and I get a B, then you must be better than me. Our whole economy is based on comparative thought: we don’t feel content with being ourselves, we want to be like other people instead, and so we buy products that we think will make us happier with our own lives.

Comparative thought relies on man-made markers, or benchmarks, that allow people to measure you and your work. But does that mean the work I’m doing is any less substantial or needed, or that it has any less impact? Just because my website doesn’t get 22,000 hits a day, does that mean it is less informative, less educational, or less valuable?

I write this for those of you who work really hard in small nonprofits and for those of you who work really hard to improve yourselves. Comparison, whether self-inflicted or from another person, is one of the most deadly traps we can fall into. For comparison causes us to doubt the voice of the inner self, the intuitive self, that directs us. It allows outside criticism to challenge the validity of that inner voice.

I will not be defined by someone else’s comparisons. The Deadliest Disease in America stands on its own merits: it is a unique tool for arousing emotion and thought, for assisting anyone open to change to look at racism in a new way. It helps viewers to recognize racism in their own thoughts and to understand how racism manifests itself in unexpected places—even in a profession that proclaims its commitment to healing.

The conversation I had with that philanthropist really hurt me, I have come to understand. It happened only a few days after Obama’s victory speech at Grant Park, where everyone in the audience said, “Yes We Can,” but my conversation was quite the opposite because it was about all the things I couldn’t do or hadn’t done.

The fact is, it’s the average people—the little people—who said they believed in change, who worked hard to get out the vote, who elected Barack Obama. A lot of little fish and some big ones going in the same direction helped changed the current in Washington. In the same way, the hard work of healing the racism in this country will happen when a lot of little fish start working together. The big fish have their part too, but the work of the little fish is equally important. 

My film The Deadliest Disease in America—I don’t compare it to other films.  How I measure its success is when a person in the audience stands up and says, “I’ve had several complaints from patients over the years about a receptionist in my office.  It wasn’t until I saw this film and did the workshops that I realized that all of the patients who complained were Black, and that the receptionist was white.  Before seeing the film, I had said, ‘We don’t have those kinds of problems in our office.’  After seeing the film and sitting in the workshop, ‘How to Report Racism in Healthcare,’ I realized that I was part of the problem.”

The situation that prompted me to write this blog made me stronger. I understand now that the gentleman I was speaking to has never seen an audience’s reaction to the film, has not experienced the impact of the workshops, and was playing devil’s advocate. I don’t think his comments were meant to hurt—but they did. 

This weekend I head to Washington, DC, to find Donna Brazile.  If you know her, tell her I’m coming!  Stay tuned for the next phase of the journey!


Namaskar,

Crystal

 

PS – We’ve posted a 6-minute clip of our film on our website.  Check it out at: 

http://urutherighttobe.org/disease/videoplaylist/trailer.html

Welcome!

November 7, 2008

 

 

The production team for the film, "The Deadliest Disease in America."

The production team for the film,

 

 

 

Healthcare reform has become the Civil Rights issue of the 21st century.  Americans are talking about disparities, access to healthcare, and equal access to healthcare.  Yet what good does it do if you reform the healthcare system, and people of color are still denied quality care? 

 

What exactly does it mean to reform healthcare?  Who makes the decision, and are people of color involved in that decision-making process?  People talk about “disparities,” but disparities is a big word.  I find it to be a smokescreen.  People are afraid to follow the smoke and go to the fire—and the fire is racism.  It’s difficult just to get healthcare professionals to admit that there’s racism in healthcare, despite all of the uncontestable research documented in everything from the National Institute of Health to the Commonwealth Fund to the Agency for Health Research Quality to the Schulman Report.  The real, ugly truth that healthcare must face is that these disparities are just a symptom; the real disease is racism.

 

We ask you to join us to help complete the film, The Deadliest Disease in America.  Walk with us as we journey across America, to bring to the table all the stakeholders in the issue of healthcare reform.  Are you brave enough to be able to look at the racism in healthcare, and then to look at the racism within your own heart?  Do you have the courage to take a stand?  We are on the frontier of a revolutionary time in American history.  The Deadliest Disease and its accompanying workshops will be a part of that change through a national civic engagement tour.  There’s an African proverb: “It takes a village to raise a child.”  We invite you to join this village.

 

Our tour seeks to change the DNA of this diseased system.  It will reach healthcare consumers, community-based advocates, policy-makers and healthcare professionals in fifty different cities.  The mix of workshops for each locale will be individualized according to the organic issues existing in each city/community.  National television and Internet distribution will reach the general public. 

 

We will actively recruit stakeholders from multiple segments of the community so there is real dialogue that results in targeted solutions for concrete change.

 

This blog will be updated each Wednesday, as part of a broader online campaign to link documentary viewers and workshop participants with opportunities to get involved with The Deadliest Disease.

 

Please visit our website (www.urutherighttobe.org) for more information.

 

Follow us as we test the post-election waters and go about making change a reality. 

 

Sincerely,

Crystal Emery

Producer/Director/Writer, The Deadliest Disease in America

 

 

 


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