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Stigma: Whose Responsibility?

By Marc Kolman, M.S.P.H.

March 7, 2010

I started writing for TheBody.com to try and address issues of stigma and HIV in the Southern United States. My first blog talked about internal and external stigma. What I mean by external stigma is stigma as a result of actions directed towards individuals or groups through any form of targeted actions taken because of who they are as individuals or the group they belong to. This can be a result of race (racism), class (classism), sexual orientation (homophobia), gender (sexism), or HIV status. When I say internal stigma, it is the result of ongoing treatment that targets individuals in a way that they learn to believe that these messages are real and define who they are. Internal, or felt, stigma is thus the result of external, or enacted, stigma acting over a period of time. Though I think it can be helpful to understand the terminology to get a better understanding of how stigma operates, this is somewhat academic and understanding these terms is not really the topic of this post.

As I've thought more, I realize how critical stigma is in the fight against HIV. Bonnie Goldman, in her farewell message to TheBody.com, says that "stigma and discrimination are still the rule". Regan Hoffman, the editor of POZ, wrote in a recent cover story that stigma "is one of the defining characteristics of the disease (HIV)." She writes, "People don't fear HIV because (as some suggest) they misperceive it to be a gay or a black disease; they fear HIV and the people living with it, period." Forty-nine percent of the respondents to a survey conducted at poz.com about stigma said that fear of being stigmatized is worse than the actual stigma and that stigma adversely affects dating, relationships, disclosure, and careers.

Stigma affects us all. Stigma has damaging effects whether we experience discriminatory and stigmatizing acts directed towards us, whether we witness these acts, or even whether we participate knowingly or un-knowingly in discriminatory acts. This may not be news to any of us. The question is, what do we do about stigma?

Stigma results from people thinking that others are different than them and are somehow deserving of being treated poorly. No one would intentionally treat someone else poorly unless they somehow feel justified in doing so and unless they themselves have been treated poorly as well. Discrimination is sometimes blatant, such as a racist or homophobic remark, but is often more subtle. Can you tell when there is housing discrimination? Employment discrimination? How often does someone need to interrupt you or exclude you from a conversation before you realize it might be caused by stigma or discrimination? Is the intolerable disparity in HIV infections between Whites and Blacks in this country a result of stigma? How about the higher HIV rates in the states in the Deep South (Alabama, Georgia, Louisiana, Mississippi, North Carolina, and South Carolina)?

Stigma hurts. It hurts all of us. Stigma clearly hurts those who are targeted -- those it is directed towards. But when one is hurt, we are all hurt. We all suffer the results of stigma. When one person is targeted, it hurts the rest of us. It therefore stands to reason that addressing stigma is everyone's responsibility. And, in fact, this is true. We can all take responsibility for improving conditions in society that affect everyone, for improving conditions in the world. However, it also often falls on those who are oppressed to take initiative. To help, here are some ideas how individuals can work with stigma.

One key way is to learn how to identify and address the internalized feelings that result from stigma. As challenging as this can feel, it is extremely powerful to know how to identify stigma and its effects. It helps to understand how and when stigma happens, and how it affects you as an individual when it happens. Do you get angry, hurt, withdrawn, depressed, or infuriated? As mentioned earlier, fear of stigma is worse than the actual stigma. Learning to understand stigma, how it operates, and what happens as a result will help to alleviate the fear of stigma. One way to work on this is through sharing stories -- stories of hurts, of successes, of triumphs, and of events in your life that felt discriminatory or stigmatizing. These stories can be about HIV, race, gender, age, class, etc. Laughing, crying, and shaking while you do this helps.

Second is to build allies. Allies are helpers, those who will stand side-by-side with you, taking up the struggle, who always remember you are good and who have confidence in you no matter what. Relationships with effective allies may need to be nurtured, supported, and encouraged, just as they need to nurture, support, and encourage you. To develop allies, think about whom you trust and who you want to have close to you. Then think about what it will take to get them in your life. This, in fact, may be the biggest contradiction to any internalized stigma -- to get people who understand you, who think well about you, and who will stand side-by-side with you as you are challenged by things directed at you that have very little do with you.

A third thing is what a dear friend of mine calls "self care". Be gentle and kind with yourself. Eat well. Exercise. Take care of your body. Do things that you enjoy whether that's dancing, going to the theater, reading, walking in nature, or being with good friends. Of course, be smart about any HIV medications. Self care goes a long way towards maintaining a healthy, productive perspective on life and in gaining an understanding of what is coming at you from outside (external stigma) as compared to what comes from inside of yourself (internalized stigma).

Stigma is a key issue in the struggle against HIV/AIDS. It has resulted from a long history of issues in our culture, none of which have anything to do with the disease itself. Stigma is directed at lots of groups in our society and it gets confusing to know how it operates and whether any stigma is the result of one's HIV status, race, gender, sexual orientation, or something entirely different. Stigma clearly affects everyone and we can also take some responsibility to end stigma, whether we are the recipient of or witness to.

Thanks for reading.

Send Marc an e-mail.




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