Perspective
Health, Well Being, and Racism
The Experience of Women and Girls of Color in North Minneapolis
By Linda Amaikwu-Rushing, R.N., M.A., C.N.P., Debra Fitzgerald, M.A., R.N., Kathleen Smith, M.S.N., R.N., Carol Wilson, M.S., A.P.R.N., Doloris Irwin, R.N., and Margaret Dexheimer Pharris, Ph.D., R.N., M.P.H.
In the spring of 2002, nurse researchers and graduate nursing students from the College of St. Catherine in St. Paul joined women from the advisory council and staff of the Community Center of Excellence in Women’s Health at NorthPoint Health and Wellness Center (formerly Pilot City Health Center) to identify barriers to health for women and girls of color in north Minneapolis. We began by inviting women from north Minneapolis to a Saturday morning meeting. We expected around 10 women; 50 showed up. After four hours of small- and large-group discussion, the women asked to meet again. Sixty-five women attended the next meeting. We divided into eight small groups, and at the end of the morning, those groups came back together and concluded that their greatest barrier to health is racism. We spent the next nine months listening to groups of women and teens from various ethnic, social, and economic backgrounds as they answered six questions:
• How do you define health?
• How do you define racism?
• What do you see as the interplay between racism and health?
• Have you had negative experiences you would attribute to racism?
• Have you had positive experiences you would attribute to race, ethnicity, or culture?
• If a community health care system were at its best, what would it look like?
Participants were purposely selected to represent the demographics of women living in north Minneapolis. They were predominantly African American, Latina, Hmong, Native American, and Lao. To minimize the chance of bias, the word racism was not used during recruitment.
Community-Based Collaborative Action Research
Our research method, community-based collaborative action research, differed from traditional methods in that it combined community members’ insights with the research expertise of college faculty, in this case to paint a picture of patterns of health in the community. The community defined the research question, and the academic partners drove the methodology. Together they analyzed the data after it was stripped of identifiers. Community members and researchers discussed the data in a process designed to create in a deeper understanding of the community’s health patterns and what needed to be done to improve the health of its residents. Members of the community then identified the next research question, and the process continued. The idea is that if people representing different aspects of the community are engaged in dialogue, we get a fuller and deeper understanding of the dynamics behind community health patterns, making change possible.
An example of this transformation occurred after the second Saturday morning dialogue. One of the nurse researchers, who is of European descent, had listened to African American, Latina, and Hmong women speak about how they felt they were treated when they sought medical care. One woman spoke of not being touched by her physician. Another described how much more comfortable she feels when she is being treated by a nurse or physician of her ethnicity. The women also stated that they worried about how they would be treated by white health care providers. The nurse left the meeting and went directly to her part-time job at a local emergency department. There, she found two young women who were the same age, each of whom had reported severe flank pain. The physicians and the nurse who had been caring for the women were Caucasian and considered to be excellent providers. When the nurse went to assess the patients, she found the first woman in the procto room, fully clothed, and curled up in a ball. Tears were rolling down her cheeks; she had received nothing for pain. She was African American. The nurse went to assess the second woman. She was lying on a cart in a gown, covered with a warm blanket, and had an IV running. The second woman, who was Caucasian, had received 6 mg of morphine. In a busy emergency department, such unequal treatment could easily go unnoticed. However, having heard the stories from the north Minneapolis women earlier in the day, the nurse was seeing things she hadn’t previously noticed.
The vast majority of women and girls in our study reported having experienced significant racial discrimination in their daily lives, as well as in health care settings. They described not being listened to and not being understood. And they said that lack of sensitivity and racial discrimination on the part of health care providers results in higher levels of stress and depression, and exacerbates their physical symptoms. Women who are uninsured or underinsured stated that the costs of medical treatments often tipped the balance against their seeking care. In addition, the women described lack of trust in the health care system based on previous personal and societal experiences. And they mentioned that they wanted to see more people who look like them in the provider population. The women also said that they believe health care professionals do not have a clear understanding of the nature of racism.
Health care providers can participate in unconscious discrimination. But if we enter into a dialogue with people from our patient populations and learn from each other’s experiences, we can begin to change the way we act when providing care. What follows is a sampling of comments by participants from this study’s 14 focus groups.
We invite you into this dialogue.
On touch
It hasn’t been that long when I was experiencing great pain in my knees. And the doctor that I had, he did not really touch me. He sat back, and he would just look and he would say, ‘Oh yeah, they’re swelling there.’ And I think the only time he touched me was when he did the surgery in the knee because of course he is going to get paid for that more so than just sitting in the office. So I changed doctors, and after changing doctors, the problem with my knees became much better. He wasn’t afraid to touch me. He wasn’t afraid to talk to me. He was just very comfortable.
—African American woman in her 60s
On distrust of the health care system
My mother had never been in the hospital. So when she was in the hospital, we knew she was sick. And what we found out is that black people did not trust doctors. They did not trust hospitals. My mom was in the hospital for two weeks. Every day they had somebody stay there overnight ’cause they didn’t trust leaving her in that hospital overnight by herself. So for two weeks, the church and the neighbors took turns spending the night at that hospital. And then they’d make sure that those nurses gave her what she was supposed to have, because they had had experiences of people being maybe overdosed in the hospital—just the little things that are happening.
—African American woman
On unequal treatment
I have two friends—one’s white and the other is African American. They both have the same condition, but the friend who is white has insurance and she got surgery. But the friend who is black was only prescribed creams—and they go to the same physician. So you have the job discrimination, less access to insurance, and then when you don’t get the same care you don’t know if the doctor is not treating you like he would if you were white or if it is because of insurance—but the result is the same for you.
—African American woman
It was a Caucasian doctor that was seeing me, and I just thought that he was really rough. I guess I don’t know that for a fact that it was because of my race. But when other people were around, like when the nurse was in the room, I guess his technique and the procedures that he would do would slightly change. And then I just asked to be seen by someone else. It definitely seemed to be associated with race … It was unfriendly for me, and I was just really uncomfortable with the situation because I had never been in a situation where the doctor was overly aggressive or that type of thing.
—African American adolescent
I think that we don’t get the treatment that we should. I think that there is a lot of difference in race and health. We don’t get the medication that we should. If we can’t afford it, then we don’t get it. I think it is unfair. I think it is unfair [that] because of the color of one’s skin that they shouldn’t get good health care ... We are human beings just like anybody else.
—70-year-old African American woman
I notice that some of the other nurses treat people of color a little differently. That’s hard. That would be the only experience that I see—not being respected when you go to the hospital … I think the nurses feel uncomfortable. They don’t know how to talk with Mr. Jones, or feel like they could, because he is so different from them.
—A nurse who works in a suburban hospital
On racism ITSELF
Racism is a horrible thing … especially for kids; it makes kids feel like there’s no one to help them. It hurts them mentally when they are teased or bothered because of their race, and it leads to depression.
—Native American adolescent
If you have racism in your daily life, it does play a part in the fact that your health is decreasing. You know, it can drag a person down with no will power. It will make you feel really, really bad. You don’t have any connections to getting treated … Do you know what it is like being black in America with no health care and having this door slammed on you and that door slammed on you?
—African American woman
Racism is one of the faces of systematic evil. Racism is taking the diversity of different kinds of people that God made and bending it really far away from His original purpose, so that people can have more than it was intended for them to have. And it’s expensive. There’s something about it—it’s like an invisible poison much of the time. And it’s corrupting to those who practice it. It’s part of the fabric of our society as Americans.
—Middle-aged African American woman
On emergency care
One time I went to [the hospital] for emergency. Before I go there, I call the 24 hours nurse, and I told her what problem I have, and she said to come into the emergency department right away. I went to there, and when I come in and they take me to the room, two different doctors come in. The first doctor comes, and they are asking me, ‘What brings you here?’ ‘I’m sick. I have this kind of symptom.’ Again, another person comes, ‘What brings you here? Why are you here tonight?’ ‘Because I am sick. I don’t take food. I have this symptom.’ They don’t say nothing. Then they leave me in the room. I stay about one hour still, and again they come and they ask me, ‘What brings you here?’ Three times! I talk to them, ‘I’m sick, that’s why I’m here. I have small children in the house. I stay here more than about two hours now. Please, why do you just keep asking me these same questions and don’t check on me? Don’t you talk to each other?’ That night, I just feel like more racism since Sept. 11. Things are changing. Maybe I’m Muslim and they are not happy for my religion. They just take things out on me.
—Somali woman
On stereotyping
My mother went to a clinic one time, and she has never touched alcohol in her life. But because of being a Native American, the physician approached her when she hurt her ankle and said, ‘How much did you have to drink today?’ … We can get into a stereotypical attitude with someone simply by looking at them and saying, ‘This is the overall behavior of this particular racial group,’ so we pigeonhole them. We think this is the same kind of behavior we’re going to see.
—Health care professional whose mother is a Native American
On being assertive
When my son was a baby and not able to communicate how he felt—how his body felt—I had to be the one to communicate that for him. I had to be the one to get all of the information. I found that the more questions that I asked, the more leery they became of me. They would do things like send the social worker to come and see me to ask me, ‘Is there anything that you want to talk about?’ I want to talk about why nobody’s answering any of my questions when I ask them what’s going on. I want to ask why I can’t see my son’s chart when it’s public information, and I want to see how notes are structured and things like that. And they immediately think that there is some sort of rebellious attitude, rather than being inquisitive. I think they don’t know how to handle the inquisitive minority in some respects. It is so few and far between unfortunately, that it almost catches them off guard, and there again comes into play a sense of superiority. And yet, if they were to sit in a forum such as this, they would say, ‘We want them to ask more questions.’ It’s kind of a two-edged sword.
—African American mother of a child with sickle cell disease
For many of us Latina women, racism provokes a lot of fear—fear that you will not be understood or well taken care of—you could even die in the emergency department, without anyone knowing what you are saying. That is very scary. And for people who do not have legal papers to be here—that is about 50 percent of our community—well, they are just afraid of being deported and separated from their family. The doctors and nurses will treat the Anglo first and better because they know that the Anglos will defend themselves because they speak English. Further, the Anglos go into the ER without fear. They do not worry about whether they have papers or not or whether they will be treated like a human being. And a lot of the times the Latinos prefer to stay quiet because they are scared of speaking up. We stay quiet because we do not want to cause any problems for ourselves.
—Young Mexican mother
On interpreters
When we want an interpreter, often there isn’t one there. I have my children with me, but they won’t let the children interpret. I have to go to work, but they make me wait for an interpreter, and then an interpreter comes and they have to interpret for another person. I have a great doctor, but I need a woman interpreter who is here! Here we feel like we are second-class citizens—the receptionist who speaks a little Spanish puts us aside.
—Latina woman
On health insurance
For immigrant women, you can only get a few months of Medical Assistance, and then you are on your own. It is almost impossible to learn the language in four months and then get a job with medical benefits.
—African immigrant woman
I think that your health care provider tends to give you less options when you are a minority. I cannot say with assurance that it’s done on purpose. I think they are almost doing it, thinking they are doing you a favor, knowing that some of these other options that they have are beyond your reach so they just don’t tell you. Well, I think that that is ridiculous because they never know from where you can pull resources—miracles happen and so the options have to be there. When you have the options, you have the education, and then you can go out and make things happen. But, I definitely think how many options they give you at the time of your consultation or appointment is very much limited by their perception of what state you are in financially. Unfortunately, many minorities don’t know the right questions to ask to prompt that health care provider to give more options.
—African American woman
I definitely think that the options you are given regarding health care and treatment are limited when you are a minority because there is an initial assumption that you don’t have the resources to look into some of the more successful options—because obviously the more successful options are more expensive.
—Middle-aged African American woman
On not being able to afford health care
You find yourself being resourceful or you find yourself using the witch hazel and other things that were actually put there for our resources, our health care resources that kind of have been overlooked because of the availability of health care. The explosion of the health care industry—I compare it to real estate and redlining. It was never obvious that you can’t move in there because you are a minority, but there was still something in there that let them know you were a minority and so we can just cover it up with something else. Well, health care is the same way. Health care is had by those who can afford it. Those who can’t afford it don’t really have to worry about playing the game because they are not a factor. And when those health care companies sit down at their board meetings and devise plans and devise processes and ways, they don’t take into consideration the ones that don’t have health care. Well those are the poorer class people; those are the unemployed; those are the racial minorities, period. And so big business was able to replace a lot of the ‘isms’ because it covered it up with all of the bureaucracies.
—African American woman
On the cost of care
My mother—she has diabetes and heart disease. I notice that she is really stressed. Sometimes she tells me, ‘Well, it is because I do not have my medications.’ And, well, she does not go to the doctor because she does not have any money. And when she does, well, every time she goes to the doctor, they want to draw blood, they do tests for diabetes, high blood pressure, anemia, and then they make her get a colon exam, a mammogram, and then she gets stressed out because she does not have the money to pay for all of this. And if she asks the doctor, ‘Do I really need all of these exams?’ the doctor responds, ‘Yes, because I want to make sure there is nothing wrong with you.’ A lot of the times we try to explain that we do not have insurance or money to pay for it. But the doctor will say, ‘Okay, well, do you want to die? This is your health! You have to have all of that.’ And we try to tell the doctors about not having insurance, and they just say that they are not in charge of our money problems. But going to the doctor and then getting the bills really does make you feel worse.
—Latina woman
On good care
I have a daughter who is really big-boned, and when I took her for her 12-year-old check up, the doctor, who was white, asked, ‘Does she have any Caribbean blood in her?’ Because they put her on the scale, and she just shot right off the Richter scale. I told him my daughter’s grandfather was Jamaican. He said, ‘This is a Caribbean baby!’ He said she looks just like a big old Jamaican woman. He said, ‘Don’t let any of these other white doctors tell her that she needs to lose weight, and don’t let them put her on a diet, ’cause there ain’t nothing wrong with this girl—she’s Jamaican. She got that Jamaican build.’ And he like squeezed her arm and he started talking in Patwa, but he basically said, ‘And you a fine ol’ thing!’ And she just laughed, but it affirmed her. It affirmed her. This white male had been in the South, you know. And he had gone to school in the South, and he was raised in the South, and he had some sense of diversity. You know, so that was a good thing.
—African American woman
Linda Amaikwu-Rushing is a hospitalist at Regions Hospital. Debra Fitzgerald is a certified pediatric nurse practitioner. Kathleen Smith is an assistant professor at the College of St. Catherine. Carol Wilson is the director of the Community Center of Excellence in Women’s Health. Doloris Irwin is an outreach health advocate for teens and seniors at NorthPoint Health and Wellness Center. Margaret Dexheimer Pharris is an associate professor at the College of St. Catherine.