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MEDICAL ACTIVISM
is Good For Your Health

By Lynn McAfee

From Radiance Winter 1999

Medical activists do not need to be experts in the latest "obesity" research. They don’t need to understand all the words in the medical dictionary, or even most of them. Medical advocacy is about attitude, not technical knowledge.

Being a medical activist involves working to improve health care for yourself and for others, especially in the area of preventive care. Illnesses diagnosed too late can result in debilitating conditions and fatalities. In fact, many people feel that delaying or avoiding going to doctors is a major cause of death for fat people.

Many of us find it easier to help others than to help ourselves. I know I would break down doors to make sure a friend received an ultrasound of her uterus (an important preventive procedure, especially for supersize women), but I have let myself down by walking out of every gynecological visit knowing that my doctor had not adequately felt or seen my uterus.

When we are too unsure of ourselves, too scared or intimidated to advocate for ourselves, we need others to help us. I have a "health care partner" named Janet. She is familiar with my medical history and is willing to come with me to any especially uncomfortable doctor visit or medical test, and I do the same for her.

Of course, even when we are acting as someone else’s advocate, all the old messages about "doctor power" surface. (Who am I to challenge a doctor?) It is easy to get so caught up in the technical aspects of medicine that we forget the value of our own experience as fat patients—our primary credential as medical advocates in these very situations. We need to trust ourselves to ask questions, evaluate the information we’ve been given, explore alternatives, and make good decisions. Sometimes the best course of action is to get a new doctor!

Personal advocacy, if we were to all engage in it, would have a powerful influence on how doctors, HMOs, and other health personnel and organizations treat fat patients. For many of us, this is the level of advocacy that, challenging as it is, feels doable. Some of us will find, as Peggy Neske did, that a single instance of personal advocacy can push us beyond the personal. When she was being treated for a medical problem, she realized that her local medical center was unfriendly to fat bodies. Taking matters into her own hands, she drew up a list of deficiencies—for example, the size of waiting room chairs and blood pressure cuffs—and called the hospital. She was connected to the patient advocate there, who was happy to hear her suggestions and even asked for more. She suggested that Peggy join the hospital community advisory board that was forming.

Some of you may want to move on to the larger commitment of what I call organizational activism. Organizational activism involves interacting singly or in a group with health care, medical insurance, or medical research institutions. As organizational activists, our "targets" can be health care providers (doctors, nurses, technicians, hospital administrators, and even medical receptionists); institutions (clinics, hospitals, and county and state health departments); or groups (medical societies, medical specialty associations, and medical schools). As a beginning activist, you might want to start by focusing on an area that directly affects you. For example, if you have diabetes, you could focus on educating diabetes self-help groups in your area. We are often most powerful and persuasive when we speak from our own experience.

At any level of advocacy, your goal should not be to turn others into people who think like you. Define your goal carefully. Do you want to help someone make an individual health decision? Do you want to work to change one specific part of a health policy? Do you want just to be heard? As an organizational activist, often the goal is to ask important questions. (For example, Why do groups like the American Heart Association continue to recommend weight loss as a first line of treatment in spite of its failure rate? Why doesn’t the government fund studies that look at other methods of health improvement for fat people?)

As the example of Peggy Neske’s response to an unfriendly health care institution shows, advocacy does not always have to be adversarial. In fact, we are often most effective when we approach a problem with the assumption that the individual or organization will be interested in helping. I often preface my request or questions with a remark such as, "I’m sure that you are not aware of this problem" before I dive into what I need. I end with, "How can we make this happen? What can I do to help you?"

It is also important to understand that no matter how concerned and friendly the person you speak with seems to be, he or she is not as invested in the issue as you are and might even forget about your needs after hanging up the phone. Don’t get angry. Most people are juggling too many duties in too little time, and asking them to do something more is problematic. A large percentage of an activist’s time is spent on follow-up. When working with an individual or a group, try to agree on a reasonable timeline. Then follow up, follow up, follow up.

Having spent many years doing organizational medical activism on my own, I strongly suggest having at least one activist "partner I’m fortunate to have the other members of the Council on Size & Weight Discrimination available whenever I need them. Many times I’ve called a council member up from a medical conference and just screamed out my frustration for a few minutes. It helps me to deal with the immediate problem—slow progress on an issue or an offensive remark—and often helps me identify why I’m so angry. Often the reason is an attack of low self-confidence.

I find it very important to analyze my mistakes and my successes. One mistake I made in the beginning of my organizational activism was that I kept trying to talk to only those people "at the top," those I assumed were always the decision makers. Finding the right person to talk to is the critical first step of any project. But sometimes it is more effective when someone on a lower rung of an organization is fighting for you, either by presenting your ideas or by helping you to get an appointment with the person who can really help you. Just the fact that I have to call ahead and talk to a secretary about getting an armless chair for a meeting works to educate someone who can be working for me behind the scenes.

An example of a failure I learned from is the wellness center project for fat people at Graduate Hospital in Philadelphia that I’d worked on for a year but was finally unable to achieve. I was stopped by one fat phobic woman, who stalled the project until the hospital was sold and the board of directors that had authorized the project was gone. I learned that good can come from my efforts even when the original goal cannot be reached. In the case of this hospital proj-ect, because information about the project reached other activists, several women are now working on wellness centers in other parts of the country, and I’ve been able to provide them with material I’d developed for my "failed" project.

Perhaps the most important thing I’ve learned—and this is something that applies whether you are advocating for your own personal health or working on a larger proj-ect—is to concentrate on one point at a time. I call it the Sound Byte School of Political Education. If I’m working on accommodation issues, I don’t even mention that fat people can be healthy until I’m nearly at the end of the project. If I’m working on the "fat and unhealthy" stereotype, I immediately admit that many of us are not healthy. I concentrate on making them admit that some of us are healthy, eat healthily, exercise regularly, and so on. When the person or group I am meeting with starts to draw me off target by speaking in stereotypes or generalizations, I say, "Obesity is much more complex than we used to think, and very little is known about it yet. Even if it is unhealthy, there’s no successful way to make people thin now." Then I move on. Fat politics are complicated, and the person you are talking to doesn’t care nearly as much as you do. Decide whether you are giving a lecture or trying to get something done. Both things are important, but don’t confuse the two.

At whatever level of activism you respond to the kind of medical services you and all the rest of us fat folks receive, remember that your acts of advocacy help us all. Taking control of health care can save lives—including your own.

Resources: Medical Activism Resources

LYNN MC AFEE is a medical activist. She is interviewed in this issue of Radiance.

 

 

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