The isms
Addressing AIDS
and related barriers to good public health
[The following 12 presentations, arranged in alpha order by presenter, were made at an October 25, 1999, dinner conversation convened by the Board of Health Committee on AIDS. This is the third dialogue in an annual series offering multiple and pluralistic perspectives on a complex subject.]
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BARRIERS TO EFFECTIVE PUBLIC HEALTH
FOR TEENAGE DRUG ADDICTS AND ALCOHOLICS
By Margo Bristow
A most under-treated population in our communities is youth involved in substance abuse. I use the word substance abuse because no adolescent or child uses substances recreationally or responsibly. Most youth use them in an abusive manner--mainly to get drunk or high. Adults commonly use chemical substances to feel relaxed. Some adults are addicted to substances, perhaps having begun the addictive process in their teen years.
Adults who use drugs socially may have a first drink of the evening that lasts for over ten minutes. Unlike younger people, however, adults typically do not slam their first beer to get a buzz, or even drink five-to-six drinks in a three-to-four-hour period with the goal of getting blown or drunk. Youth simply do not understand the idea of moderation. They course through life with the idea that abusing chemicals, whether wet or dry, is the norm rather than the exception.
These are the lost children of our society. They are ignored and looked at disdainfully by their peers, families, teachers, and society in general. Most have made mistakes and were discovered and judged for years for mistakes made in a few months or over the course of a year. They have been categorized and thrown away as lost causes without a second glance.
Many have made efforts to change their behaviors through treatment, change in peer group, geographic change, but to no avail for some. They are often viewed as damaged goods. A second, third or fourth chance is un-thought of by adults who surround young people.
The only chance young people have is with their own kind—other youth in recovery or those still using substances. There is an unspoken, unwritten barrier between each substance abuser and the straight, non-abusing community. Tearing down these barriers is near impossible for a young person who has poor coping and life skills stemming from substance abuse.
These youth suffer the cruelest form of neglect and disdain from society. They are outcasts from every stratum. Their family, peers, employers, teachers, coaches, deans, police, youth workers, doctors, therapists, or any other mentors do not trust them. They are affected both by ageism and by alcoholism/addiction.
In this scenario, our youth are not seen as thinking, creative, vibrant, complete human beings when they are addicted. It is hard being a 15-year-old, for example, struggling to become independent and trying to make important decisions alone without adult guidance. Drug-abusing young people are thought of in such terms of as “addicts,” “junkies,” “potheads,” “alcoholics,” “hypes,” “dopers,” “animals,” “monsters” and so on. How and when did they become identified with any one of those terms? Clearly they are variations on the isms.
Who remembers the little child riding a two-wheeler for the first time? Or who remembers walking to school alone for the first time? The first steps? Addiction takes away these memories. The child is still there. If we acknowledge the memories and the joy we experienced with this child, we can help rediscover the youth part of that child. By doing so, the child is no longer seen as the "concept," and it becomes easier to see the human being in the addict shell.
Each child that abuses chemicals is seeking a connection. Who or what that connection is with is not as important as filling the void that the youth feels. Whether that void is emotional, spiritual, intellectual, sexual, or physical, it is not as important as the idea that whoever fills that void tries to do so unconditionally.
Our youth are crying out for adults/mentors who accept them unconditionally. Drug-abusing youth know that their actions/behaviors may not be acceptable, but the core person is a wonderful, loving, caring, human being, no matter what that person has done.
Each one of us can reach out and mentor a child by talking on an equal basis, by engaging each child whenever possible, and by affirming the actions that impress us. We need to remember that, indeed, it does take a village to raise a child.
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I AM ONE OF THE LUCKY ISMS
By Tony Dobrowolski
I was diagnosed HIV positive on July 10, 1990. As Franklin Roosevelt said nearly 60 years ago, that date for me “will live in infamy."
But I am one of the lucky ones. I found out that I was positive before becoming ill. At the time, that was not the usual order of things. I have never experienced a major
opportunistic infection. I was diagnosed at an anonymous testing site in Detroit. The people who operated the site were professional and considerate.
Once I found out that I was positive, I told a select group of friends. No one ran away. No one shunned me. None became distant from me. One of my closest friends, Judy, is a resourceful activist in the Detroit AIDS community. Judy pulled strings in order to get me a prompt appointment with a prominent infectious disease specialist.
Judy was determined I should see this physician, who was known for positive, pro-active treatment of patients with HIV/AIDS. The other prominent AIDS expert there was a physician who had been present at the start of AIDS treatment in south-eastern Michigan. Most of her patients had died. However, she was infamous for recommending to newly diagnosed patients that they get their affairs in order and make out their wills.
Judy and I both felt that this fatalistic attitude was not what I needed at the beginning of my HIV journey. How right she was. I am one of the lucky ones. From the beginning my doctor and his staff treated me like a well person who they were trying to keep from getting sick—not a sick person who they were trying to keep from dying. I felt instinctively that this approach was what I needed, and of course I responded to this care immediately. My T-cell count was at a reasonably comfortable 550.
I was healthy and very busy with my acting career. I also had insurance through one of the actors' performance unions. And 18 months after my diagnosis, I even survived a potentially fatal automobile accident. I sustained a fractured sternum and fractured ribs but healed on schedule. I also found a soul mate who has shared my life for the past eight years, Bob Vogler, the man sitting next to me tonight.
I am one of the lucky ones. When I moved to Oak Park I was referred to Dr. Roberta Luskin-Hawk, at Chicago’s St. Joseph Hospital. Her philosophy of treatment was identical to my Detroit specialist. In fact, they knew each other personally. I felt in good hands and that my treatment would continue to be pro-active, meaning based on a philosophy of helping to maintain good health, rather than on a philosophy of postponing death.
Eventually the time came for me to begin medication and I started on AZT in late 1992. By then, the medical community was aware that twelve pills per day caused substantial liver damage. I was put on six pills per day. The lower dosage held my T-Cell count level constant for almost a year.
My life continued to be active, my acting career flourished, and my health remained constant. I experienced an allergic reaction to one of the drugs within a month and a substitute was prescribed to take its place.
Since then, I have been ahead of the curve in terms of medications, meaning that I have been privy to several trials of medications before the FDA gave formal approval. For example, I was a part of an immune booster vaccine study, which also paid for yearly physicals and my lab and blood work.
I am, indeed, one of the lucky ones. I am still insured. In fact, with my day job since April, I have even better medical benefits than before. I have been able to access funds to help pay my out-of pocket expenses, through the generous offices of organizations related to the actors' unions, of which I am a long-standing member. Sometimes, the out-of pocket expenses are still difficult to meet, but they are nothing compared to what I would be otherwise experiencing.
I now take 49 pills per day, not including vitamin supplements. That's comes to almost 1500 pills per month. Without insurance, the cost would be in excess of $1700 per month. It would be absolutely impossible for me to bear that cost on my own.
I have never been ostracized because of my medical status. The friends and family who know about my HIV positive status have been a wealth of support and comfort. I am able to live my life, for the most part, as I wish. My gastro-intestinal system tolerates and endures a continual chemical onslaught far better than many others.
I have experienced a year-long battle, a daunting challenge, with drug-related peripheral neuropathy. At a couple of low points, it caused me to think that I was losing my mind. It put me into therapy. I was also able to avail myself of the treatment of an acupuncturist, which treatment was covered by my insurance.
Thankfully, this drug side-effect appears to be on the wane.
Life with HIV hasn't all been a walk in the park but I'm still here to tell you the story. I have also been supported by the prayers of innumerable people, because my biological and chosen family have asked their churches—of widely different faiths and in many different locales—to lend me their spiritual support. It has been invaluable. It has been both life-affirming and life-giving. It is a large part of why I am still here.
"There, but for the grace of God, go I," is a proverb that I never really understood before I became HIV positive. These days it resonates in my head like a church-bell. I am, without a doubt, one of the graced ones.
Anyone who contracts HIV and AIDS should be this lucky. My experience should be the norm, not the exception. I happen to be white, educated, insured, and connected.
Those facts shouldn't matter. HIV/ IDS is a virus. It is syndrome of disease. It is not a judgement. The people with the disease are not pariahs. The same treatment opportunities should be available to all. We should all be this “lucky" until a cure is found.
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NUTRITION: ADDRESSING BARRIERS TO GOOD PUBLIC HEALTH
By Stacy Fuller
As I look around this table tonight, one thing we have in common is that we have food in front of us. Without knowing any of you personally, I could guess that food is a major part of our lives. Young or old, black or white, rich or poor, everyone needs nourishment to stay alive. Since food is such a universal commodity, it is hard to see any of these isms in my profession. I am very lucky because not many people can say that no ism affects the way they do their work every day.
Eating right is a big part of good public health. My job is to help people choose the best foods according to what they like and their medical diagnosis. My focus is to keep people as healthy as possible, no matter their age, race, or gender.
I keep this focus in mind when counseling patients. But the important thing to remember is that no ism-type judgment about patients ought to occur before, during, or after I meet with them to discuss good nutrition.
I can't look at a person's plate and predict that he or she is over the age of 65 because they are eating mashed potatoes. Likewise, I wouldn't generally prescribe different diets to two people who are both HIV positive, with one being straight and the other gay. Each has the same medical diagnosis.
Neither do I let a person’s sexual preference or any other of the isms control or change my actions or attitudes towards the people I serve as a dietician. That’s a healthy practice for everyone.
Just because I do not see many barriers in my profession doesn't mean they are not out there. We know they are and it is our job as individuals, organizations, and communities to do away with barriers to good public health. My job is to improve peoples’ quality of life, no mater who or what they are. I don't see people in the nutrition profession permitting the isms to downgrade the quality of service provided.
Yet is was people unfairly judging others that brought me into this profession in the first place. In 8th grade, my grandmother told me that I would get fat like my sister if I continued to eat the way I did in those days. Scared that people would judge me harshly—the way they did my sister—I began exercising and became more intrigued about nutrition through my reading.
Since then my love for food and nutrition has grown stronger and brought me to where I am now professionally. Even though something good came out of this sad situation involving my sister, the isms generally affect people negatively.
Health is so important. I cannot allow the isms to get in the way of doing my job to the best of my ability—free of the isms. I try to treat every one of my patients like a member of my family--with care, respect, dignity.
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RACISM IN AMERICA:
A PERSPECTIVE ON THE ISMS
By James Gates
Racism. Say the word. Feel the emotional charge as it explodes into the air. Is there a more graphic word, a more pernicious malevolence in our society today? Who among us can not recall in our multimedia world a scene of racism in its most overt, most despicable form?
Yet, as repugnant as this form of racism is, I believe another destructive form of racism is striking out at our nation's children in a place where they are supposed to be safe—our schools. Do these racists come hooded or in para-military garb?
No. They come quietly disguised in the trendiest clothes or in business attire. They do not shout racial epithets, toss fire bombs, or block the doors to a university.
Their approach is almost imperceptible because they come disguised as well-intentioned, beneficent individuals. But they seek to write off, ignore, patronize, or control. They seek an unnatural superiority.
They escape detection because communities are reluctant to admit that these individuals exist. No school, no university, no educational consortium wants to admit such individuals exist because of the volatility of that word—racism.
Yet such racists do exist in our country. They might pose as the compassionate teacher who doesn't mind when certain students arrive late to class, fail to complete assignments, or produce inferior work for which they receive passing grades because, as the teacher believes, these certain students can only achieve so much.
They might masquerade as the popular winning coach whose team never seems to mirror the school population because certain athletes just do not seem to fit the narrow profile of an athlete on the team.
They may cloak themselves as concerned administrators who support diluted graduation policies because certain students might not graduate because they do not rise to the tougher standards attached to a diploma’s real meaning.
They often infiltrate the school milieu as testing service administrators who find it easier to lower standards for certain students because it would be too hard to demand that each student receive a quality education regardless of his or her background.
They might even disguise themselves as NCAA officials who would rather look the other way than demand academic achievement. That is because they advocate a student athlete mentality for certain students who can fill seats in a stadium.
Finally and possibly the most dangerous, these racists can come wearing the smile of a friend. They discourage others—using the power of peer pressure—from striving for academic excellence because such achievement belongs to another group.
Hearing this, you might feel uncomfortable and unwilling to confront the issue seriously. Racists count on you to feel that way in order to preserve the status quo.
As long as we focus on the stereotypical racist only, we can hardly begin to address the problems caused by another type of less visible racist, that person who might be sitting next to you at an educational meeting or conference.
Some of these individuals do not recognize the social injustice of their words and actions, believing actually they are altruistic. Therefore, be mindful of the warning of Edmund Burke: "The only thing necessary for the triumph of evil is for good people to do nothing."
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OPTIMISM: BLESSINGS AND BURDENS OF ANOTHER ISM
By Emily Hume
As editor-in-chief of Trapeze, the OPRF high school newspaper, I've been asked to present tonight as a representative of young people and as a young journalist.
At first I wasn't sure I was qualified to be part of this dinner conversation. I know no one who is HIV positive or who has AIDS. And I don't consider myself part of a particularly high-risk group. But the more I thought, the more I've realized how much
this situation makes me a good candidate to speak as a teenager on the subject of the isms as barriers to good public health.
Like many teens, I realized that I am both blessed and burdened with an ism very strong in youth: optimism. We value optimism so much in our society, as well we should. Optimism allows us to push through bad times and to be always looking for the light at the end of the tunnel. Optimism in teenagers is born of the sheer freedom of being young as well as the knowledge that most of our life is ahead of us. Our optimism tells us that we can build a better world. It is optimism that fuels progress.
But this same optimism can lead teens to feel invincible. Such statements as, "I'm not the kind of person who'll get AIDS," and "my partner is safe," and "they'll find a cure for it eventually" are manifestations of blind optimism. Teens need to realize that we are at risk and that HIV disease can happen to us.
We need to work on preventing the spread of HIV by talking openly and honestly about the disease and making sure all teens know the facts about keeping themselves safe. We live in an age where information is more readily available through more media that ever before in history.
Logically, teens should know the facts about HIV prevention, but the truth is that many still are in the dark. We can remedy this by dispelling common misunderstandings about the disease.
The exuberant optimism of so many teens is their key to building a better life for themselves and others, but that optimism should not lead us to the blindness that cuts lives short.
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AGE AND AIDS
By Nathan Linsk
I want to tell you about Bob, a 65-year-old living not far from here. He went to get the results of his HIV test. His doctor's post-test counseling skills were not polished.
Doctor: (Looking through papers) "Oh, too bad."
Bob: "You mean, I'm positive?"
Doctor: "Yeah. You've lived long enough."
A year later Bob told me: "That’s his consolation. And I went along with that...And I left there befuddled. This is not the way it’s supposed to go. I was so angry that I didn't have time to grieve. I didn't feel sorry for myself. I was just aggravated that I didn't get the pampering.”
Bob decided to go to an AIDS service organization. The counselor, a short guy with a beard, was older. And Bob told him, "I just found out I'm HIV positive. And I'm looking for a doctor. I'm wondering if you have a doctor?"
And the counselor said, "Oh, no, you have to get your own doctor."
And Bob said, "I thought that's what this place does."
The counselor said, "Oh no. Here’s a list of doctors.
When Bob told me this complete story, he said, “I was feeling down because I was getting frustrated. I must have looked depressed.”
So the counselor said to Bob, "Hey, cheer up. How old are you? What do you want? You die of something after sixty."
Later Bob told me, “So there was a certain discrimination. And the doctor I went to see—I'm sure he was much more affable, much more caring and warm—but toward the younger patients. I can see the difference in the inferior treatment I was getting."
As Bob said, “That's not the way it's supposed to go."
The problems of living into older age may be complex enough without HIV or AIDS. The experience of older folk who are affected by HIV shows that old age makes life with HIV even more challenging and HIV makes the older years more complex.
There are two isms I want to address tonight. The first is ageism. Bob’s story illustrates that AIDS programs just haven't thought much about the older population living with HIV. This story is far from usual.
There is a mystery I don’t understand about HIV and later life: older adults living with HIV are virtually invisible in the epidemic. Think of the last AIDS education materials you saw. What did the faces and bodies look like? Likely the images were of young folk in the prime of life and vigor. Some older adults believe that they need not practice prevention precautions because older adults don't get HIV.
Wrong! AIDS surveillance data shows that while the largest groups are in their 30s and 40s, there have consistently been 10 percent of AIDS cases over age 50. A quarter of those are over age 60, a higher percentage for women. The number of
people with AIDS in the Chicago data has recently gone up to 13 percent percent. In suburban Cook County the number of people with AIDS over 50 years of age has been 13 to 15 percent of total cases.
Those percentage figures are startling when compared to the lower figure of one to two percent of all AIDS cases under age 20!
While adolescent and pediatric HIV are tragic and all too common, it is at least as tragic when any significant population at risk—including the HIV population—is ignored. Our public health response to HIV has simply not been comprehensive enough. In a visit I made to the Centers for Disease Control several years ago, officials told me that seniors have too few years of life left to for the CDC to invest prevention dollars.
How can public health better fight the isms in order to help overcome the AIDS epidemic? First we need to recognize that HIV/AIDS affects everyone, old and young. In fact older adults have compromised immune systems because of other age-related issues, including physical changes in their bodies. Because we have done very little to consider the particular needs of elders regarding prevention, including consideration of condom use in this age group, older people are more at risk.
The solution is good information, disseminated in a format that older adults can respond to and understand, and at places where older adults are likely to see it. Services should be tailored so that people of any age can be comfortable using them. There should be access to services in age-friendly settings.
I want now to talk about the second ism related to adults over 50—what I call "AIDSism." This ism perhaps underlies the concepts we are here to discuss tonight.
More often than not, social and health service programs designed for the old generally have little or no information about substance abuse, HIV, and other sexually transmitted diseases. The programs do as much to avoid HIV infected elders as the AIDS service organizations do. AIDS and HIV have not become normative for services that serve older adults.
My research at the Midwest AIDS Training & Education Center at the University of Illinois at Chicago shows that even those older adults who identify as elders prefer to get HIV services from the usual community service providers. But these same older persons are not confident of getting good support in those very communities in which they live.
With regard to HIV and the associated needs of older adults living with HIV, we are still where the overall health and service sector was 10-to-15 years ago. Here also is a need for education and support services and for making service programs welcome those living with HIV.
The good news is that people are living longer with HIV. The older adults population is increasing at rates faster than the overall population. As life-extending drugs carry people into later life, allowing them to live with HIV, we need to make our public health and overall communities not only AIDS-friendly but age-friendly as well.
At the recent conference on AIDS and HIV in later life at the University of Illinois at Chicago, national experts discussed how ageism and AIDSism affect us all. In any event we can all help deal with the plight of folk like Bob—and many others—if we expand our thinking about HIV to include all ages, including those 50 and older.
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IGNORANCE-ISM:
THE GREATEST CRIME AGAINST
SEXUALLY TRANSMITTED DISEASES
By Patricia Lytle
With education, there is hope. With hope, there is a life. With life, one can learn to live again. We must work to overcome the ignorance-ism that is the greatest barrier to good public health.
When one is put into a state of not knowing, a certain feeling of discomfort is understandable. One wants to stop feeling uncomfortable and uncertain, but questions start racing through the mind. In the area of sexually-transmitted diseases, that state of discomfort is enormously magnified. Yet, where does one get the answers? Who does one turn to? What questions should be asked?
There are problems in getting answers, and the problems start at the top, with our leaders, spreading out to the citizenry. Within our nation, our society, and the many cultures that make up our pluralistic communities, ignorance toward STDs runs rampant.
You might ask why is STD-ignorance so prevalent. Because too few people, including healthcare providers, are talking about STDs. If you are talking about STDs, if you are asking questions about STDs, then our society says you must have an STD. Simplistic thinking like that is everywhere.
After World War I, the American Social Health Association monitored returning veterans to determine what STDs were coming back into the country. That is how syphilis and gonorrhea became the first STDs to be tracked. In actual dollars spent
to track and prevent STDs, the federal government is still spending about the same amount as it did after the war. Yet the needs for education and prevention have grown drastically and dramatically.
For example, the Centers for Disease Control recently reported that STDs are at epidemic proportion nationally and that untreated gonorrhea and chlamydia are the number one cause of sterility in the U.S.
I serve as the executive director of Chicago H.E.L.P. When the younger population calls about STDs, that group is most often asking about HIV/AIDS.
When the middle-age population calls about STDs, they are most often asking about syphilis or gonorrhea. Since few people talk openly about these two—and other—sexual transmitted afflictions, the common belief is that syphilis or gonorrhea likely don’t exist anymore.
When seniors call Chicago H.E.L.P. about STDs, they are not sure what they are asking because of their fairly common belief that older adults are too old to get an STD.
I ask myself, “What’s wrong with this picture of these three different age groups?”
The fact of the matter is that females are at an even greater risk of STDs than men. But they have a false sense of safety because of a yearly pap smear test. Many are convinced that if they have any major or minor STD ailment, it will be diagnosed and treated when they get that yearly test. Nothing could be more wrong.
My organization’s work in organizing and sponsoring STD education and support groups since 1979 has revealed that healthcare providers can be just as ignorant as anyone. The average consumer believes physicians will have a clear diagnosis and treatment plan for illness.
Allow me to tell you a pertinent story. My agency received a phone call from a 35-year-old female from Arlington Heights. She was upset and crying. Feelings of discomfort had led her to her female gynecologist in Arlington Heights, a 12-year-old doctor-patient relationship.
During the examination, the patient’s feet still in the stirrups, the doctor moved away from the exam table and told the patient, "You have herpes. That's a disease of prostitutes and I don't treat prostitutes.” The doctor left the room and never returned.
We need to recognize that AIDS and all other STDs encounter similar barriers to good public health in our communities—from average citizens to trained health practitioners. This story is but one example of many stories I hear over and over.
Individuals diagnosed with herpes, for example, are looked upon with less sympathy and compassion than people diagnosed with AIDS.
But being diagnosed with genital herpes, for example, means that patients encounter disgust and blame from family, friends, and the healthcare community. They are often told they are dirty, promiscuous people with no morals or values. They sense they are being punished for some terrible behavior.
Wrong. They are people just like you and me. Among people with genital herpes and other STDs, including HIV disease, teenagers are thrown out of their parents home in Chicago, Oak Park, Oak Lawn, Palatine, Springfield, West Chicago, and many other cities and towns. Relationships of any duration end abruptly in the U.S., Canada, and in such cosmopolitan centers as New York and San Francisco. Marriages end in divorce everywhere.
The number one cause of suicide among individuals diagnosed with genital herpes is the social stigma of this specific virus. Has anyone ever had a cold sore or fever blister around the mouth? If so, that's herpes. It’s in the herpes family of viruses, just like chickenpox, mononucleosis, and shingles.
Our mission is not to judge or criticize but to offer education, support, and resources.
And the occasional reward is wonderful. Just the other day a female attending one of our STD support groups handed me an envelope. Later I read the card inside, which said, “You're a godsend. Now I know I can go on.” Once at a support group meeting, another person brought in a bouquet of flowers, saying, "Thank you. This group gave me hope." These two stories remind us that this important work with people who has an STD is about compassion and hope.
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THE ISMS: WHY WE FAIL TO ADDRESS AIDS
By Paul Preston
We, the people of the United States, practice oppression. It is a part of our national history to decry human rights violations found in other countries, resulting in political and economic sanctions against offending countries.
Yet, we ourselves practice oppression. We do it in our homes, our neighborhoods, in doctors’ offices and research facilities. We practice oppression in our churches, temples, mosques, and from other public pulpits. We do it in the courts, in our laws and language, and yes in our silence. We do it to each other and to ourselves.
In this country, HIV disease is a healthcare issue that has become a political issue. In order to address the issue of AIDS and other STDs in our communities we must stop the oppression and do away with the isms. We risk the loss of our future and possibly our freedom.
HIV doesn't discriminate, seeing neither skin color, gender, sexual orientation, age, or economic status. People discriminate. It is unlikely that HIV itself will change anytime soon. There is no cure. Still, people have the power to affect change, to take control of their lives.
That is what I do as a journalist writing about HIV. I am often snared into political wrangling. I wrestle with drug companies and become embroiled in court battles, and I struggle with people I come to know personally.
I stood against congressional representatives in Washington, D.C., who advocated for making a public record of those testing positive for HIV, the virus that causes AIDS. I petitioned Genetech, a drug company, to continue manufacturing and selling an effective drug for painful, debilitating conditions caused by other drugs for HIV treatment. I was actively involved in a legal battle over whether HIV positive parents should have custody of their children.
An advocate in HIV/AIDS education and prevention, I have steered prevention groups from agendas that promote an Us Against Them attitude. I have defended the right of under-the-skin drug users to have access to clean needles. I have pushed for the right of positive people to dental care and to safe and comfortable housing. I have defended a positive person’s right to sexual expression.
I see our communities like a vast web. If there is suffering here on this side of the web, that suffering is felt on every part of the web. Humans naturally want to use labels and categorize people. Though labeling is one way to understand our environments, it also dehumanizes the people wearing the labels.
Everywhere in our communities are people like you and me who fall into the trap of the isms. What you say and do is felt elsewhere in the vast web of community.
In the future, AIDS will be the measure by which we teach our children to care for and about others. One day there will be a cure for AIDS. What matters most now is not a new drug coming on the market, as important as that is. What matters is how we treat one another. We must not allow our communities everywhere to practice oppression. To allow it anywhere is to give permission for it to happen everywhere.
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ADDRESSING AIDS
AND RELATED BARRIERS TO GOOD PUBLIC HEALTH
By Rickey Sain Sr.
How do I myself address the isms? By taking personal responsibility for the life I lead—meaning the words I speak and the actions I take. I must name and claim the ways I draw conclusions about others, including those with HIV disease. When those conclusions are based primarily on surface circumstances, I must then own the poignant personal truths revealed by the sad isms.
At 20 years of age, what I understood about life was different from what I knew and understood two decades later. By then I had four school-age kids and was in a 6-year-old domestic partnership. Given that span of time, I wonder out loud what happened to account for the more practical sense of how the world works.
Ever-accumulating experiences at home, at work, and in community have brought a more refined understanding of how success and failure, rising and falling, are always intermingled. Positive and negative experiences of gain and loss, of joy and sorrow, are often blended together.
Experiences that are neither all light nor all dark—neither pure nor impure—are blended into a mixture that is usually gray and complex. Usually.
What I knew about life in my youth was captured in some of the most powerful words ever written. “We hold these truths to be self-evident that all [ ] are created equal, that all [ ] are endowed by their Creator with certain unalienable rights...” The words are from the Declaration of Independence.
Other value-laden words were equally stirring when I was of college age, and they move me today still. These words are from the preamble to the United States Constitution, and from Harriet Tubman’s struggle for freedom during the heyday of the Underground Railroad, and from John Kennedy’s belief in American cultural pluralism, and from Martin Luther King Jr.’s dream for the beloved community.
Yet it is true that their words move me differently now.
Let’s be real—really! I know at 40-plus years that inequality, oppression, bias, and the struggle for unity amid difference are the rugged realities that frequently compete and fight with the profound social justice ideals of a democratic nation. Social justice to me means right relationships.
In this struggle, life is often parceled out unequally. Community is sometimes defined by alienation and division. And ironically, personal identity may have less and less to do with integrity and the unalienable sacredness of individual personhood.
The antidote is to work at cultivating an improved sense of thinking globally while acting locally. What does acting locally look like in practical terms? Simply put, I myself must name and claim my isms by what I say and do at home, at work, in the community. I must bring myself to a higher level of consciousness about the need to embrace others who are different. This action is a critical ingredient in respecting others and, in turn, winning their respect for me.
Ageism, classism, heterosexism, homophobia, racism, sexism,
others—those are barriers preventing me from engaging people authentically. When all is said and done, acting locally for me means living out the idea that my equality, rights, freedom, belief in cultural pluralism, and desire to build the beloved community are all closer to fulfillment when I am being authentic in each encounter.
Truth to tell, that is no small task. Enough said.
Being authentic means, then, that I take personal responsibility for creating the change I seek. If I desire equality, I must be equitable. If I seek freedom, I must free others to be who they are.
Indeed, if I believe in the democratic value of cultural pluralism, then I must create spaces that are culturally pluralistic. And finally, if I work to achieve the beloved community, then I must respect the inherent dignity and worth of humankind.
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ON THE ISMS:
THE OAK PARK DINNER CONVERSATION
By Robert Schultz
Often the success experienced in conquering or containing
diseases—and increasing life expectancy—is due as much to the shift in the social paradigm as that success is due to the triumph of science or medicine.
In that vein I would offer that HIV/AIDS continues to be a critical issue as we look beyond the millennium hype and plan for the next few years in the 21st Century.
The contradiction of our current situation abounds. Because of the recent success of the HIV drug cocktails, I'm currently consulting with a church around back-to-work
issues for people with HIV. A barrier to employment for many is the issue of insurance. For others, their socio-economic situation has meant that HIV has been the most stabilizing thing that has happened, yet they lack the needed economic skills to get on with their lives.
We are trying to prevent an outcome that forces people who are reasonably healthy to live on disability. The bureaucratic government system, unfortunately, is set up to do otherwise, one example of the Gordian knot we call AIDS.
On the other hand, the life saving drugs that are available are also very expensive. In Africa, and other underdeveloped regions where AIDS has hit hard, the question is how do we get these expensive medicines to the people there.
On the home front, one of the subsidiary issues is homophobia in our communities. Yesterday, while shopping at Marshall's on Michigan Ave. with my sister who was visiting from Michigan, we talked casually in front of the African American female clerk who rang my sister's purchase.
Our topic? We talked about my recent interview with Rev. Spahr, a white lesbian minister who is challenging the Presbyterian church around its own homophobia. That is just one of the fronts in the battle against homophobia that needs to be fought in each racial and ethnic community and in the secular and the religious worlds.
In the 80s one of the catch phrases was, Think Globally, Act Locally. This is as true now as it was then. Be aware of the abstractions of the isms and the dynamics they play in our lives. However, the important issue is to act. This dialogue is to be applauded. Our work here has hardly begun.
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HATE IN THE STREETS
By Preston L. Shumaker
Show homosexuals a way to deal with their problem.
They need treatment, just like alcoholics and drug addicts.
Trent Lott, U.S. Senate Majority President
The two new buzz words on our streets are hate crimes. Politicians are using the words like bargaining chips in their speeches. Some candidates are terrified to even mention the word gay.
My question to you is how are you responding to the recent surge of hate crimes? This question was posed to my African American men's discussion groups, and now
it's your turn. However before you respond, let me say that the American Heritage Dictionary defines hate as "to loathe; detest. To dislike; wish to shun." One would have to be living in a cave not to notice the recent rash of hate crimes.
Hate lurks in our country roaming atrociously. It is fed consistently in part by fundamentalist hate mongers who take biblical passages out of context to support their tirade. Its fetid head continues to raise, unexpectedly, at any given moment.
And before you get too comfortable, there is more bad news: this fundamentalism is the beginning only. In recent months there have been malicious incidents. We have heard of the 1998 murder of Matthew Shepard, a 22-year-old Wyoming college student who was pistol whipped by two fellow students. He was tied to a fence and set ablaze. There had been reports that others saw his body tied to a nearby fence and thought he was a scarecrow.
It was not enough to torture and kill him. Rev. Fred Phelps, pastor of a Christian denomination in Kansas, along with his protesting parishioners, picketed Shepard's funeral, yelling anti-gay epitaphs like "Matthew is burning in hell now" and "God says homosexuals deserve to die."
Shepard’s parents and other loved ones, trying not to pay attention to this awful and ignorant behavior, lay their young son to rest. I watched on television in horror.
Furthermore, a gay male of color recently said to me, "It's not my concern, because Matthew was white. It probably wouldn't have been covered in the press if he was a black man."
My teeth clenched, I began to grind them. My temple was bulging. Carefully I selected my words as I responded. "So, you believe that just because Shepard was a white man, we shouldn’t worry ourselves in the black community?”
It should be our concern regardless of color, Matthew was executed because he was gay. If we choose to turn our backs and not respond, then we are no better than the perpetrators. A lack of positive action can be viewed by others as indifference to our own cause and sense of self-worth.
But what about the attacks not reported so widely? Hate crime does not necessarily mean gay crime. Let’s remember the times we live in. Can we forget about Jasper, Texas, where in June of 1998 James Byrd Jr. was tied to a truck and died in the style of lynching-by-dragging, his body pieces strewn over the road.
Mr. Byrd was African-American. Three white supremacists were later charged with his murder. It was one of the most gruesome, horrific hate crimes I've heard about. Moreover, how about 13-year-old Lenard Clark's ordeal more than two years ago? His body and brain are irreparably damaged. He will never be his former self again. We must not become complacent with these crimes. No one deserves to be attacked.
When we look at the common denominator here, hate is hate. When it manifests itself physically, it must not go unrecognized. These brutal crimes must not be tolerated. Period.
We must mount a counter attack so we won't be caught off guard. Citizens have been meeting with area police to make our streets safer. Some participated in an anti-hate march and vigil. I urge you to write letters to your elected officials, demanding a national hate crimes law.
More importantly, we need to vote. We need to send the message that our family, friends, and lovers are equally as important Americans.
Some organizations are counting on the fact that minority groups are not voting like we should. Karen Hayes, of Concerned Women of America, said, ". . .organized homosexual groups try to market Matthew Shepard's tragedy to get their special rights. It's a disease-ridden community."
We can't continue to let this behavior go unrecognized. Together we stand and divided we fall. After all, Matthew Sheperd, James Byrd, and Lenard Clark stood up to this evil. We must continue to carry the torch, to fight to make our neighborhoods safer. We are taxpayers and our loved ones deserve to live in a safe environment.
Until that safer environment comes, we must not let another soul in our community suffer alone. If you see someone being attacked, take down the license plate number, call the police.
You never know. Any one of us could find ourselves in a similar situation. Be careful, and be good to yourself and each other.
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NOT SPEAKING DIRECTLY TO THE ISMS
By Liz Wilson
I am delighted to be a part of this dinner conversation. I will not speak directly to any of the isms suggested, but I will indirectly allude to some of them.
Why am I here? I am active in an organization dedicated to providing numerous services for people living with HIV/AIDS. For the last 10 years I have been privileged to be a part of a high-priority service at Damien Ministries—through the planning and presentation of non-sectarian retreats and reflection days.
How did I get involved? I was a nurse in a large inner-city hospital in the early 80's, but I never had a person with AIDS as a patient. It was only after I began training to be a hospital chaplain several years later that I met and ministered to my first PWA. I was struck by his sense of alienation from family, partner, and church because of his homosexuality and HIV disease.
About a year later, one of my oldest friends lost the second youngest of her five sons to AIDS. The boy's father was an executive in a large oil company and was afraid he might lose his job if the cause of his son's death became public. No mention was made of it at the funeral. As a result of those experiences, I wanted to do something in the AIDS community.
Over the 10 years I have been doing retreat work, I have seen tremendous changes in the demographics of AIDS as reflected by the people who come to our retreats. Originally the retreatants were almost exclusively homosexual males. Today the retreatants include married couples, women, and heterosexual males. The number of women and men is about equal.
I have also seen a change in the individual retreatants. In the beginning it seemed that the retreatants were consumed with an urgency to make peace with their higher power, or God, before they died. Now the sense of urgency is gone.
Some retreatants now share how and why they have shown no symptoms of AIDS for 10 or more years. They feel they are living with a chronic disease.
We know, however, that the pandemic is not over. We also know that many who are affected by the virus are still searching for love and meaning. Many seek to find a space allowing them to face themselves and the disease.
Though the retreats are based in the Judeo-Christian tradition, they uniquely welcome all. Muslim and Jewish retreatants mix with those who follow Eastern or Buddhist traditions, or no tradition at all. In this process is found respect for the unique ways people find their own spirituality and search for what motivates and directs them.
Each person reflects on what gives life meaning and purpose. Each person is treated with dignity and respect. The talks and our actions are a reminder they are loved unconditionally by God. Creating a community of love and support allows for celebration of who and what each person is.
For some any mention of church is a source of great pain. It is from within the institutional church, they say, that they have experienced the ultimate rejection. We remind them that God, or the sacred, or a higher power resides in each of them and in the community. We distinguish between institutional church and personal and communal spirituality.
We invite each retreatant to look at possibilities for growth and positive change as they journey with HIV/AIDS. We also provide opportunities for massage therapy, workshops on centering prayer, stress management, and small group discussions on a variety of subjects, including family issues.
Each of us must find our own way to help PWAs. There are enormous needs, and retreatants have expressed those needs. Because people with HIV disease, often those on disability, want to return to work, job placement is critical. Women need day care for their children so they can work, and they demand the same level of health care offered men.
Many women and men living in the AIDS community continue to yearn for deeper meaning in their lives. Their diagnosis has put them in touch with the divine in ways never expected. They see spirituality as a key part of who they are and can become.
Each of us can begin by accepting people with HIV/AIDS as worthy of respect. Show that respect by assisting them in whatever way our particular expertise or skill permits.
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October 25, 1999. Addressing AIDS and related barriers to good public health. The third dialogue in an annual series asking and answering the question, How can the community work together to fight AIDS? Dinner conversation with 40 people, 12 of whom made the brief formal presentations included here. The remaining 28 variously offered reflections on the presentations, reflections summarized in the essay entitled, “AIDS—Ending the Silence: Listening, Learning, Living.” Good Shepherd Lutheran Church, Oak Park. Some 30 or more supportive local organizations. Dialogue facilitator was Dr. Helen Bishop. Conference convened by the Oak Park Board of Health Committee on AIDS. Rickey Sain Sr., chair. Dr. Georgeen Polyak, director of the Oak Park Health Department.
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