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Arab Americans and HIV Prevention
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Introduction
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Barriers to Prevention and Care
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transparent imageWhat has changed for Arab Americans in the past 5 years?
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transparent imageWhat has changed in HIV/AIDS prevention in the United States in the past 5 years?
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transparent imageCounting Arab Americans: The Numbers
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transparent imageMichigan
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Difficulties Vary with Region and Immigration Status
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transparent imageRegion
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transparent imageImmigration status
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Intracultural pressures
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The Shape of HIV/AIDS Prevention in Arab American Communities: Organizational and Individual Views
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Conclusions
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References
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Introduction
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In March 2000, HIV InSite published interviews with 4 Arab Americans whose personal and professional lives were impacted by HIV/AIDS. The interviews were accompanied by an outline of some of the issues affecting HIV/AIDS prevention efforts among Arab Americans.

This presentation is an attempt to review the changes taking place since then that impact both Arab Americans and HIV prevention strategies. Arab immigration to the United States has been fraught with political tension since the first wave of immigrants began arriving in the 19th century. The always politically complicated response to HIV/AIDS in the United States, by many accounts, has become more tense over the past 5 years. These factors make the intersection of HIV/AIDS and Arab ethnicity a very challenging location.

This report does not provide a large sample of responses, and cannot be considered to represent the opinions of all Arab Americans. Rather, it is a snapshot--reflections gleaned from conversations with people who have direct personal experience with Arab Americans and HIV /AIDS. It is my hope that the discussion provided here will inspire further research and serve as a reminder that, unfortunately, no group can claim immunity from the impact of HIV and AIDS.

In addition, it is my goal to demonstrate that, since the events of September 11, 2001, it has become more difficult for Arab Americans to access HIV/AIDS prevention and care. This difficulty varies with location (within the United States) and immigration status. Finally, post-9/11 pressures compound barriers to prevention and care that existed prior to 9/11.

Definitions of Arab and Arab American identity are not straightforward. There are many people from Arab countries who would be defined as Arab by the U.S. Census Bureau, but prefer to identify themselves using other terms. There are many non-Arab ethnic minorities from the Middle East and North Africa, including Chaldeans, Imazighen, Copts, and Assyrians, among others. For the purposes of this analysis, the term Arab American refers to people who reside in the United States, whose ancestors are from predominantly Arab countries, and who self-identify as Arab or Arab American. Citizenship and legal residency are not criteria in this definition. Where a source uses a specific definition of Arab American, I make that explicit. For clarity's sake, it is also worth noting that not all Arabs are Muslim, and not all Muslims are Arab.

Another term used in some of the interviews is Southwest Asian/North African (SWANA), which includes people from the areas more commonly called the Middle East. The term includes but is not exclusive to people of Arab heritage. A SWANA person or community is one whose heritage is from that area.

Many groups find themselves in the spotlight in a way that they were not prior to 9/11. Iranians, South Asians, and non-Arab Muslims are among these groups, but are not included in the scope of this discussion. Although similar issues may affect these communities, the cultural differences among the groups are significant and warrant a separate focus.

In this overview, I examine the efforts of 3 organizations serving Arab American communities in the United States. These organizations are notable both for the work they do and for their locations in urban centers with Arab American populations of varying size. In addition, I focus on conversations with 2 individuals, a playwright and an activist, whose comments complement the institutional perspectives. HIV InSite could not reach 3 of the 4 people interviewed in 2000, and spoke instead with people doing similar work in 2005.

The HIV/STD Program at the Arab Cultural Center for Economic and Social Services (ACCESS) in Dearborn, MI, was established in 1993. The goal of the program today is to increase the number of Arabs and Arab Americans who know their HIV status, and provide them access to education and health services related to HIV and other STDs. According to census data from the year 2000, Dearborn has the second largest Arab population among U.S. cities; Arab Americans make up nearly 30% of the city's population.

The Middle East Natives, Testing, Orientation and Referral Services (MENTORS) is a New York City-based nonprofit founded in 1999. MENTORS's mission is to increase HIV/AIDS awareness in New York City's Middle Eastern communities. Its outreach programs target youth, men who have sex with men (MSM), drug users, other high-risk populations, and HIV-positive people. In addition, MENTORS provides confidential and anonymous counseling services for people affected by HIV/AIDS. New York City has the largest Arab population of all U.S. cities, according to Census 2000, although Arabs account for less than 1% of the city's population.

The Asian and Pacific Islander Wellness Center (API Wellness) in San Francisco was founded in 1987 to address the needs of Asian and Pacific Islander (API) communities, particularly individuals in those communities living with or at risk for HIV/AIDS. The center's services include HIV testing, case management, mental health counseling, and cultural events, among other initiatives. Recently, SWANA communities have been included in the scope of its work. San Francisco is not among the U.S. cities with a large Arab American population, although California has the largest number of Arab Americans of all U.S. states.

Saleem, a gay HIV-positive man raised in the Middle East, moved to the United States to attend school. His award-wining play, Salam/Shalom, explores nationality, religion, sexuality, and international conflict. A self-described hopeless romantic, Saleem came out to his family (including an ex-wife) first about being gay, and then about being HIV infected. He has found both the positive and the negative in his experiences, and has used them to shape his art and his life. He was granted asylum in the United States after 9/11.

Bassam is an immigrant from a Persian Gulf country who came to the United States in the 1990s as an undergraduate. He spoke with HIV InSite in 2000, and returns to address the changes he has seen since that interview. A gay Arab man who lives in the United States and maintains close ties with family in his native country, he has an important vantage point from which to comment on HIV, sexuality, and social mores across cultures and over time.

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Barriers to Prevention and Care
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What has changed for Arab Americans in the past 5 years?
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It is useful to view the current Arab American population in historical context. The first wave of Arab immigration to the United States began in the 1800s. In 1924, Congress passed a series of laws that limited immigration from the Arab world to 100 people annually. The laws were repealed in the mid-1960s, beginning a second wave of immigration. (1)

Arab Americans began to organize socially during the first wave of immigration, but did not begin organizing politically until the 1970s, primarily in response to U.S. foreign policy in the Middle East. A decade later, the Gulf War increased the visibility of Arab Americans in ways that often revealed the community's "very precarious political standing." (2)

Precarious as that political standing was, it became even more so after 9/11. While post-9/11 policy can be seen as a continuation of an established pattern, life in the United States did change after that day, and the policy changes put in place in the wake of those events continue to shape the lives of all Americans. Most domestic and international policy changes are abstract for the majority, but they had a nearly immediate impact on the day-to-day lives of Arab Americans, particularly new immigrants and Muslims.

Many national policy changes implemented post-9/11 to address the threat of future terrorist attacks have focused on immigration. One of the most significant policies, in terms of its impact on Arab American communities, is the National Security Entry-Exit Registration System (NSEERS), also known as Special Registration. NSEERS became effective in Fall 2002, and it is implemented in 2 ways. The first is Special Call-In Registration, which requires immigrant men from 24 Muslim-majority countries and North Korea who were in the United States prior to 9/11 to interview and register with federal immigration authorities. The second, Port-of-Entry Registration, requires nonimmigrant visitors from Iran, Iraq, Libya, Sudan, Syria and more than 100 other countries (unspecified by Federal authorities) to report to immigration for special questioning. (3)

Another important policy instituted post-9/11 is the Absconder Apprehension Initiative (AAI). Implemented in early 2002, it was designed to locate and facilitate the deportation of men from countries with a known al Qaeda presence who have violated immigration policy. It emphasizes national origin over the nature or severity of a given violation. (3)

A final important, if not codified, response to the 9/11 attacks was the detention of more than 1,200 Arabs and Muslims immediately following the attacks. Many were detained by the FBI for months without charges, and those deported were charged with minor immigration violations. (3)

These new laws, poorly explained and implemented, created a climate of confusion, fear, and to some degree, anger, which shapes the way many Arab Americans navigate through American society in 2005. Equally influential are unofficial changes in attitudes toward Arab Americans post-9/11. For new immigrants, these pressures compound those brought about by policy changes; for second, third, and fourth generation Arab Americans, they likely are felt more acutely than are changes in immigration policy.

Unofficial responses include crimes such as threats, assault, arson, shootings, and bombings perpetrated against Arab Americans, South Asians, Sikhs, Muslims, and others perceived to be of Middle Eastern origin. Three years after the terrorist attacks, the U.S. Department of Justice Civil Rights Division, through its Initiative to Combat Post-9/11 Discriminatory Backlash, had investigated more than 500 crimes perpetrated against the above-mentioned communities. (4)

Wahba Ghaly, founder of MENTORS in New York, described some of what MENTORS clients experienced.

We ... had ... another story from someone [Arab American] who had been kind of annoyed by some neighbors; they were really disturbing. He called the police and the police came and asked them, what do you expect after you people did what you did? What do you expect us to do? So that's the kind of answer they would hear even from the police who are supposed to be there to protect them.

The climate immediately following the 9/11 attacks affected not just MENTORS clients, but also staff members. "I must tell you, the fear that we had been in, as people who are working in an Arab organization, and just seeing what is happening, happening on the TV screens.... It's just an opportunity for anyone to see an Arabic book at your office to be accusing you of 2,000 accusations. So we kind of felt what can happen," Ghaly explained.

Bassam noted in his interview that, although his own professional life did not suffer post-9/11, several of his Arab American friends were not so lucky:

Many of them who were working in different kinds of environments, even academia, were dismissed from their jobs arbitrarily. One of them ... his name was Osama, and he was sent packing within the week--a clear case of discrimination. Several other friends lost jobs. People who were dependent on contract work saw their contracts canceled. People just didn't want to deal with Arab Americans.

According to some reports, fear has driven many Arab Americans to withdraw from society to the point where they are afraid to report domestic violence or seek emergency care. Already feeling criminalized as a community, many Arab Americans feel state scrutiny and the attention of law enforcement are more of a risk than an abusive spouse or signs of a heart attack. (3)

Not all of the effects of post-9/11 policy and attitude changes are negative. Educational organizations have noted an increased interest among American students in the peoples, languages, and cultures of the Middle East. (5) Alliances have formed between Arab American organizations and various civil rights groups, including the Japanese Americans Citizens League and The Rights Working Group. Additionally, some have noticed a new relative conversational openness in Arab American communities post-9/11. (6) Bassam had this comment.

Most people may still emphasize that we have pressing priorities, in terms of dealing with the challenges of being Arabs in America, or Arabs who are economically or politically colonized by Western powers, but it's an understanding that we are not alone in this world.... And certainly, what September 11th did is it definitely laid bare our black laundry for all the world to see, and people are starting to think that maybe we need to deal with it sooner rather than later.

All of this shapes the way MENTORS, ACCESS, API Wellness, Saleem, Bassam, and others address the issues that arise in association with HIV prevention post-9/11.

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What has changed in HIV/AIDS prevention in the United States in the past 5 years?
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In 1993, a ban on immigration for HIV-positive people was included in the Immigration and Nationality Act. That ban is still in place. HIV-positive immigrants can apply for a waiver, but it is difficult to obtain one. (7)

Where ethnicity is concerned, racial and ethnic minorities have been hard hit by HIV/AIDS, with AIDS diagnoses and HIV transmission rates occurring out of proportion with population size. New AIDS cases are on the rise among women and young people. MSM continue to be at high risk for infection, accounting for more than half of new AIDS diagnoses among men. (8)

HIV/AIDS prevention efforts have always been politicized. Some observers feel that politicization has increased in recent years. (9) If tension between the federal government and community-based organizations is any indication, there is some truth to that assessment.

Where sexual transmission is concerned, the need to study or work with specific populations, or to provide accurate information on appropriate interventions, has been made increasingly difficult in the past 5 years--particularly where federal funding is involved and interventions stray from an abstinence-only message.

In November 2004, dozens of individuals working in HIV/AIDS prevention endorsed an approach to HIV prevention that would "leave behind divisive polarisation and ... move forward ... in designing and implementing evidence-based prevention programmes"--including harm reduction efforts. (10) This declaration was endorsed by several members of Congress and sent to the U.S. Centers for Disease Control and Prevention (CDC).

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Counting Arab Americans: The Numbers
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Although Arab Americans are certainly on the minds of those at the Department of Homeland Security, they are barely visible on the national HIV/AIDS prevention radar. In an interview with HIV InSite, Javid Syed, formerly of API Wellness in San Francisco, said he believes that the CDC is "moving toward a data-driven funding process, so that the amount of funding, the proportion of funding, reflects the proportion of incidents of HIV." Historically, this has left Arab Americans out of the federal funding loop. Syed continued:

And I'm not justifying that, because especially for our communities that are either misrepresented, or don't have good data around our communities, it doesn't reflect our communities' realities around HIV/AIDS. And the other piece is that the immense amount of linguistic and cultural differences in our communities require more resources, even to make a program fit the needs of the diverse population.

Whether and how the population is counted has a significant impact on the inclusion of Arab Americans in funding processes. The Office of Management and Budget (OMB) sets and revises the standards for the Classification of Federal Data on Race and Ethnicity. In 1997, the OMB voted not to create a category for Arab Americans or Middle Easterners, because officials could not agree on how to define the category, and called for further research to determine the best way to gather data on the population.

In December 2003, the Census Bureau answered that call by issuing a statement on the number of Arab Americans living in the United States, which indicated that 1.2 million Americans had self-reported Arab ancestry in the 2000 census. (11) Other research, attempting to address issues of underreporting by the bureau, placed the 2000 Arab American population at more than 3.5 million. (12)

The 2003 report was the first that the Census Bureau had ever prepared on the population of Arab ancestry. It included information about people who cited Arab, Egyptian, Iraqi, Jordanian, Lebanese, Middle Eastern, Moroccan, North African, Palestinian, or Syrian ancestry. The report noted the ambiguous nature of the criteria used for determining whom to include in the category, and the Census Bureau was careful to declare that it was published in response to the OMB's call for research conducted in consultation with "experts in the Arab-American community." (11)

The report is welcome because, without a category for Arab Americans, it is difficult to gather relevant data, and without data, it is difficult to justify any program designed to serve the Arab American population. On the other hand, given the political and social climate noted above, the timing of the report makes it somewhat suspect in Arab American communities. Many are aware that the Census Bureau provided information to the War Department in the 1940s to help identify the location of Japanese Americans living in the United States and actively supported the efforts to intern Japanese Americans,(13) and that in July 2004, the Census Bureau developed a special report for the U.S. Customs Service, which has been subsumed by the Department of Homeland Security. More detailed than the general report, it listed cities with populations of Arab Americans greater than 1,000, and contained more information about Arab American populations broken down by zip code and country of origin. (14)

The difficulties in defining the category--whom to include and how to gather information about them--are compounded by the fact that many Arab Americans, for fear of being targets of suspicion, are reluctant to step forward. Wahba Ghaly noted this in his conversation with HIV InSite:

... [T]he fact alone that any census would come soon, [after 9/11] and working with the community and knowing what the community is facing right now, this will push away many people from identifying themselves as Arabs.... [M]any of the people will just identify themselves as 'white, non-Hispanic' rather than Arabs....

Bassam also commented on some Arab Americans' reluctance to "come out" about their ethnicity, and the potential impact of this silence on how HIV/AIDS among Arab Americans is understood.

There is a perception that the rates of infection among Arabs and Arab Americans are low, but, from my personal experience, I found how those figures might be skewed because of underreporting. People might tend to gravitate towards more anonymous testing, without necessarily disclosing their race--or disguising their race. Not identifying as Arab, and probably even less so after September 11th.

The repercussions of defining a community do not stop at determining its size and funding requirements. In commenting on the historical similarities between SWANAs and other communities, and whether SWANA communities are "Asian," Javid Syed pointed out the impact of definitions on the prospect of receiving culturally appropriate health care:

... [T]his conversation about whether SWANAs are API, or white, or not white, or of color, or not of color, is a conversation that's happened in many other communities. South Asians, for example, were classified as Hindus at some point in the census, and as white at another point in the census, and there are still some parts of the community that say, "What is the similarity between us and Asians?" And even just going to health care services. For myself, when I went to get HIV tested and said I was Asian Pacific Islander, the person who was giving me the test actually put fingers to her eyes and pulled them so they were slanted and said, 'You know, when I think of Asian I think of this. So you can't be Asian Pacific Islander.'

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Michigan
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Despite the census report, there is still no way to determine HIV prevalence in Arab American communities nationwide. However, the state of Michigan is an exception to the national norm. The Michigan state government recognizes Arab Americans as an ethnic minority, and, at the request of Arab American organizations, added Arab ethnicity as an option on its HIV/AIDS Case Report Form in 2001.

In 2004, the Michigan Department of Community Health reported that there were 54 known cases of HIV/AIDS among Arab Americans, of which 65% had progressed to the AIDS stage. Of those infected, 78% were male, and among them more than two thirds were MSM. Among the women, who represented 22% the HIV infected, one third reported heterosexual transmission, and the remainder reported an unknown mode of transmission. The majority of infections occurred in people between the ages of 30 and 39. (15) According to the U.S. Census Bureau, there were 76,504 Arab Americans in Michigan in 2000. That put the HIV/AIDS prevalence rate for Michigan's Arab American community at well under 1 percent.

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Difficulties Vary with Region and Immigration Status
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Region
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The very different post-9/11 experiences of 2 HIV/AIDS prevention programs suggest that organizational capacity is heavily influenced by location and the kind of support other local agencies are willing and able to provide.

In Dearborn, MI, ACCESS provides many services in addition to HIV/AIDS prevention, such as employment, literacy, and physical and mental health services. In 2000, organizers at ACCESS called for more money for HIV/AIDS-related program development. The struggle around gaining status as a recognized ethnic minority and lobbying for money has paid off for that organization. In 2004, ACCESS became the first Arab American organization to receive direct funding from the CDC for its HIV/AIDS prevention work. The organization also received significant state funding in the past.

In New York, MENTORS has been less fortunate. As does Michigan, the state of New York has a large Arab American community, and New York City has the largest number of Arabs of any U.S. city. (11)MENTORS is the only organization providing HIV prevention services to Arab Americans in New York City. The organization has struggled to maintain its funding, and at the time of the interview had received no assistance from local Arab American nonprofits that provide social services in the area. Other Arab American organizations in New York "don't want to do anything with HIV or with homosexuality," Wahba Ghaly told HIV InSite. Despite support from the New York City Department of Health, MENTORS' application for funding from the CDC was denied. According to Ghaly, who was baffled by the rejection, explanations for the denial contradicted information provided in the application.

There are many ways to explain the CDC's unwillingness to fund MENTORS, and none of them can be proved. The move toward a data-driven funding process described by Syed could be a factor; perhaps the rates of infection among Arab Americans led the CDC to conclude that funding for 2 Arab American HIV prevention organizations in the same year is not warranted. But the CDC was not alone in rejecting MENTORS' requests for financial support; the organization lost other funding as well.

While ACCESS has been able to improve HIV/AIDS prevention services and simultaneously maintain its other programs, MENTORS received more requests for help with problems related to immigration than its small staff could manage. As a result, MENTORS started an asylum project for gays and lesbians. "Working on HIV/AIDS wouldn't be enough for the community," Ghaly said. "That's why we also started our new project, for asylum for gays and lesbians. Based on what was going on, and what we know about some of our clients, that they are undocumented in this country, we were so much afraid. If they were to start deporting them, what would happen to these people?"

With the addition of this new program, funders balked. "[T]hey totally didn't like the idea and they didn't give us money." This loss of support led Ghaly to wonder whether philanthropic organizations were being pressured not to fund Arab organizations.

The outcome of this lost financial support is increased pressure on an Arab American organization trying to provide HIV/AIDS prevention services in a context that it already experiences as hostile to its efforts.

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Immigration status
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Language and cultural barriers are clearly problematic for new immigrants. Saleem's experiences illustrate the ways immigration status impacts access to HIV/AIDS services. After his divorce, Saleem lost his work permit and legal status in the United States. Several factors combined to convince him to apply for asylum: His HIV-positive status, increased scrutiny on the part of immigration officials, and the knowledge that returning to Jordan as a gay, HIV-positive man was not a safe option.

After the divorce, he said, "I just kept working and doing a lot of independent work, paying my taxes ... until September 11th came. You know when they started rounding people up.... But the point that I thought to myself, if I really wanted to start getting benefits, you know like going on ADAP [AIDS Drug Assistance Program], getting free medication--I knew I needed to [apply for asylum]."

Saleem won asylum, and can receive the benefits due to all who qualify for them. "... [I]t took a lot of stress and pressure [away]. Now I know I don't have to worry about staying here illegally and I can travel," he said. Many immigrants are less fortunate. Medicaid is available only to those who can provide a social security number, a declaration of citizenship, or satisfactory immigration status. Immigration status must be verified through Systematic Alien Verification for Entitlements (SAVE). (16)

In New York, MENTORS refers asylum seekers to Canada because, in their experience, the asylum process in the United States is more expensive and time consuming than the Canadian process, and thus prohibitive for many undocumented immigrants.

In addition to issues related to immigration status, new immigrants face barriers that second- and third-generation Arab Americans do not. Culture shock, language differences, and in some cases the struggle to earn a living often are experienced as more urgent than issues related to HIV. It is worth quoting Wahba Ghaly at length to illustrate the difficulties that many immigrants face when trying to navigate in their new home:

I have some Yemeni people and some Tunisians and some Moroccans, who don't speak a word of English. To the extent that even when they go to their dental appointment at the hospital, they cannot even tell them that they are here for a dental appointment. We come to the point that we need someone to accompany each and every of those for his medical appointment. How would a medical appointment be successful without a doctor being able to speak with his client? How would a client, a patient, follow the orders of any doctor, whatever the doctor is, if he doesn't understand what the doctor meant to start with?...

First of all, for example they will tell him that now he will have to go out to wait for some blood that will be withdrawn from him for some analysis, whatever it will be. Then he goes out and he waits, nobody calls him, and ... he doesn't know what is the next point. And doctors don't have the time to explain to you point by point, after you leave his door, and wait outside at the waiting area, what will be the next point....

This is the other thing: most of them, they don't have access to proper housing. They don't know that they have the right for that. They will be very, very happy that they have some treatment, and they think that this is it. That's the end of it.... And there is no case management that can really take them through all of those things.

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Intracultural pressures
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Within Arab American communities, the social pressures that HIV InSite described as barriers to prevention in 2000 appear to remain in effect today. These pressures include the silencing effects of shame, stigmatization of homosexuality and intravenous drug use, isolation of HIV-positive people, and cultural understandings of age and gender that need to be taken into account when attempting to tailor effective prevention messages and access to care.

In describing issues related to HIV/AIDS prevention in Arab American communities, there is a danger that the description will feed stereotypes about Arabs that abound in the United States--that they are culturally "backward," sexist, or more homophobic than others. Because negative stereotypes and the sentiments they feed are dangerous, it is important to point out that sexism, homophobia, and lack of access to medical information are not unique to any group, although they may be expressed differently in different cultures.

Shame stood out as a theme in earlier interviews. Words like secretive, stigma, suspicion, and fear were repeatedly used in 2000 to describe the relationship many Arab Americans have toward HIV- and AIDS-related topics, including sexuality, homosexuality, and drug use. As Bassam notes in 2005, "There's still no openness about the prevalence of any diseases, or any social or health ills in our communities in generally, let alone talking about HIV or AIDS.... Even within the queer Arab community ... it was hard for them to come out as HIV positive. "

"I know [Arab] people who are gay and HIV positive and really in a very serious condition, and they don't want to tell their parents," Saleem said. "Why are you still afraid of your parents? The reason why: Guilt. You know, the fact that we're still conditioned to think of love in the way we were brought up to think. I love you if you satisfy my wishes. If you don't satisfy my wishes, shame on you."

In larger gay communities, Arab American men often face ignorance and stereotypes. Post-9/11, "the queer community hasn't been any more tolerant than the overall American community towards queer Arabs or queer Arab Americans." (Bassam) When finding a home in a gay "American" context proves difficult, some seek shelter in Arab American communities, which often "don't want to do anything with HIV or with homosexuality." (Ghaly)

As in other communities, many gay, lesbian, bisexual, and transgender Arab Americans internalize the homophobia around them, and this shapes their ability to take action. Ghaly holds that internalization is at least partly responsible for the silence around HIV in Arab American communities. "Part of the problem is the gay and lesbian people themselves. They don't want to be identified as such, if they are already clear for themselves about their own orientation, or some of them are still suffering from this big denial."

Saleem's experience is similar. "A lot of Arab guys, whether they're positive or not, they cannot preach what [they] don't have.... How can you go be active in the community, do outreach, and get the support and the grants and the help, if you're actually telling them, 'But I'm hiding myself from the community?' It doesn't work that way."

Given these circumstances, finding support around HIV prevention and treatment remains difficult for many gay Arab American men.

Where gender is concerned, Ghaida Hinawi's assessment of HIV prevention among Arab American women in 2000 appears to remain true today. She described Arab American women as more difficult to reach than men. Hinawi also noted that Arab American women are more sensitive than men in discussing taboo subjects such as sexuality and drug use. She said she used indirect language to address these subjects with women. Four years later, Wahba Ghaly described the sensitivity to culture, religion, and language that MENTORS' educators, women in particular, are careful to maintain:

The language and the culture help you say what you want to say in your own language and in the culture of the people without really breaching some red lines.... I mean, it's also what the women do, we have some women on the staff. This is exactly where we want to open discussion, so we know exactly where to tackle them and to let them open the discussion by themselves. Let them ask the questions, and put ourselves in the position of answering questions. The questions come from someone who they are important to, and we are just giving him or her the answers.

In 2000, HIV InSite noted that Arab American youth face the often conflicting pressures to fit into mainstream American culture, and maintain ties to Arab culture. These pressures might create special circumstances that should be taken into consideration when doing HIV prevention work with this community. There is little new information on HIV/AIDS prevention among Arab American youth. MENTORS does outreach to youth under age 18 at schools, but sees few clients under age 21. In Michigan, 6% of infections occur in young people under age 19, and 26% occur in young people between the ages of 20 and 29. (15)

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The Shape of HIV/AIDS Prevention in Arab American Communities: Organizational and Individual Views
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Despite the significant barriers described above, HIV prevention efforts do take place. Agencies and activists use printed materials, educational outreach, formal collaborations, informal networks, and even family members to support individual self-care and organized prevention efforts.

The HIV/AIDS prevention programs at MENTORS and ACCESS have been careful to create culturally relevant, language accessible outreach materials, and may be models for people hoping to create similar programs in other locations. ACCESS is developing materials focusing on condom use, safer sex, and being gay or bisexual.

Outreach is another important part of the work of both organizations. "We do outreach to where the community is, we don't really wait for them to come to us," Ghaly told HIV InSite. "We go to mosques, to churches, and we go to Arab schools ... in the five boroughs," as well as to health fairs and parades. In Michigan, ACCESS outreach workers have hosted a party called Arabian Nights to reach gay Arab men. (17)

MENTORS utilizes Arabic language television to present HIV prevention messages to the community. "Through [The Arabic Channel] we had even larger and bigger access to some parts of the community ... that you can never reach unless you go through television."

In all their efforts, MENTORS educators choose their words carefully. "It's a filtered way to say things, but it's the only way to reach where you want to reach," Ghaly explains. "You say what you want to say but in this stilted way without putting yourself in any bad situation, where you will be pointed at for advocating for something in particular, especially homosexuality and so on."

Formal collaborations have been an important part of HIV prevention efforts at ACCESS and MENTORS. MENTORS has a subgroup, the Gay and Lesbian Arab Society, which focuses on supporting gay and lesbian Arabs in New York. In addition, it works with organizations that provide housing, support for asylum seekers, food stamps, work permits, and other services. (Ghaly) ACCESS's Arabian Nights party is produced in collaboration with the Midwest AIDS Prevention Project (MAPP) and is funded by a grant from the state.

In San Francisco, API Wellness is funded by the CDC to do capacity-building assistance work for their fundees. "We are given the charge of enhancing their grantees' capacity to do HIV/AIDS services," Syed explained. At the time of our interview, ACCESS and API Wellness staff members were discussing the possibility of working together under this arrangement.

Within San Francisco, API Wellness and members of Southwest Asian and North African Bay Area Queers (SWANABAQ), a small grassroots group, made a preliminary effort to work together on HIV education and prevention within SWANA communities; that effort ended due to burnout and staff departures. Syed was hopeful about the possibility of future collaborations. "Hopefully we'll be able to keep at least that dialogue open. So if people are in need of services, they can come to us and we can figure out a method to provide them with that."

Terminology creates challenges for API Wellness in its efforts to include SWANA communities in its scope of work. The term "Asian Pacific Islander" is not often used in ways that are intentionally inclusive of SWANA people, including Arab Americans. Syed described his take on the term. "I don't think it's a term that is necessarily coherent in a cultural historical sense, as much as really a geopolitical term, and so from that perspective ... it is an identity that I think changes when you ask different people."

Many Arab Americans, if asked, would not identify as Asian, and Syed and API Wellness are aware of this. "How do we actually make inroads into the community in a way that actually meets the community's needs and doesn't feel like we're imposing an identity onto them?... My goal is not necessarily to make people feel like they need to give up an identity to become part of another identity, but to see whether there are strategic political resources and cultural reasons why people need to come together to make the lives of their communities more sustainable and have better access to services."

Another important piece of Arab American communities' HIV prevention efforts involves international collaboration. In Lebanon, the group Helem (which means "dream" in English) has formed to "lead a peaceful struggle for the liberation of the Lesbian, Gay, Bisexual and Transgender (LGBT) community in Lebanon from all sorts of legal, social and cultural discrimination." (www.helem.net) The group's work includes HIV prevention and education. Outside Beirut, Helem has members in Ottawa, Paris, Montreal, San Francisco, and Sydney. These members' activities support the Beirut chapter, but also act as a catalyst for discussions about HIV in communities outside Lebanon. One of the effects of the fundraising parties hosted by the San Francisco chapter has been to keep HIV on the radar of the San Francisco Arab American community.

Informal networks are another important resource for Arab Americans. Saleem noted the importance of supportive partners, men who were aware of his HIV-positive status and remained with him. "I was blessed with the fact that I didn't go through the horror stories of rejection," he said. When he first learned he was HIV positive, he had a supportive set of Middle Eastern and non-Middle Eastern friends, "so I didn't really have to go to support groups."

Saleem also credits his family for the feeling of support he has experienced. "I'm lucky, I am blessed that my family, instead of disowning me more, it actually brought me closer."

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Conclusions
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The greater openness in discussing social problems may lead to greater political openness, which may lead to being able to deal with current pressing problems. Versus the other way around: Silence does equal death. Surprise, surprise.
-- Bassam

It always has been difficult (and politically loaded) to define the term Arab American. That difficulty complicates efforts to complete statistical analysis, seek funding, and coordinate outreach efforts around any subject. As in other groups, intracultural taboos about women's sexuality, homosexuality, and HIV/AIDS persist among Arab Americans, making HIV/AIDS prevention outreach even more difficult. These factors have not changed.

What has changed is that HIV prevention as a whole has become increasingly difficult over the past 5 years, for everyone. Funds are diverted or withheld, and opinions that depart from official federal policy are silenced--not completely, but to a degree that they have not been in the past. Funding for HIV/AIDS nonprofit prevention efforts has come under increased scrutiny.

Arab Americans as a community have received a great deal of negative attention over the past 5 years, and have become increasingly introverted and very mistrustful. Although the intensity of the challenges varies with location and with immigration status, it appears that, outside Michigan, scarce resources are being diverted to deal with issues that feel more pressing to Arab American communities than does the issue of HIV/AIDS.

The results of these increasing pressures are difficult to measure, but at this point in the epidemic, it does not appear that Arab Americans are impacted by HIV/AIDS to the same degree that many other communities of color are affected. Although this may mean that, outside Michigan, resources will not be dedicated to prevention efforts among Arab Americans, it does not mean that the impact is trivial or that Arab American communities themselves should ignore the problem. While outside help can be welcomed and encouraged, ultimately a community can only save itself.

Creative responses to HIV/AIDS do occur within Arab American communities, even if those responses are few and far between. MENTORS, ACCESS, and API Wellness, for example, continue their work, and many groups have formed meaningful collaborations in support of Arab Americans. Some individuals, like Bassam, are hopeful that the code of silence around social problems within Arab American communities is changing. "The advent of the Internet, of more open media ... is helping at least a discourse take place, where it used to be such a taboo before."

Arab American communities possess strengths that, combined with sensitivity to the barriers that do exist, have potential to be the source of effective HIV/AIDS prevention programs. The irony of HIV/AIDS is that, for many communities, its "manifestations ... have been both devastating and empowering." (18) This is true for Saleem, who credits his HIV-positive status with bringing him closer to his family and creating the sense of urgency that encouraged him to become a playwright. And it is true for Bassam, who notes that "there's good and bad in everything, and I'd like to say that the cup may be half full, rather than half empty."

By challenging definitions of normalcy, awareness of HIV/AIDS has the potential to create a home within Arab American communities for those who traditionally have been ostracized or who are struggling to fit in more than one world. Given the sense of hostility and isolation many Arab Americans are experiencing at this point in time, having that support is perhaps more urgent than it has been in the past. Although the need arises at a time when Arab American communities may not be able to easily meet it, there is still hope that they will rise to the challenge posed by this epidemic and not only prevent more harm, but do some good.

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References

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1.  Eva Veronika Huseby-Darvas. Coming to America: Dilemmas of Ethnic Groups since the 1880s. In The Development of Arab-American Identity. Ann Arbor: The University of Michigan Press. 1997.
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2.  The Invisible American Half: Arab American Hybridity and Feminist Discourses in the 1990s.Mervat Hatem, 1998.
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3.  Targets of Suspicion: The Impact of Post-9/11 Policies on Muslims, Arabs and South Asians in the US. Paul M. Sherer for the Immigration Policy Center of the American Immigration Law Foundation. July 21, 2004. Available at: www.ilw.com/articles/2004,0721-Sherer.shtm
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4.  U.S. Department of Justice Civil Rights Division. Initiative to Combat Post-9/11 Discriminatory Backlash. Available at: www.usdoj.gov/crt/nordwg.html
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5.  After September 11: Technology and Liberal Education in a Changing World. The Newsletter of the National Institute for Technology and Liberal Education. Volume 1, No. 1, Spring 2002. Available at: newsletter.nitle.org/v1_n1_spring2002/
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6.  Arab Americans After September 11th: Rethinking Ideas Not Carved in Stone. Al Jadid: A Review and Record of Arab Culture Arts. Volume 7, No. 30 (Summer 2001). Available at: www.aljadid.com/editors/0736chalala.html
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8.  Kaiser HIV/AIDS Policy Fact Sheet, March 2004.
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9.  CDC Investigates STOP AIDS Project: Safer Sex and Prevention Programs Under Fire. amfAR News and Features, August 21, 2002. Available at: www.amfar.org/cgi-bin/iowa/news/feat/record.html?record=93
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10.  Comment. The Lancet. 2004 Nov;364(9449).
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11.  The Arab Population: Census 2000 Brief. G. Patricia de la Cruz and Angela Brittingham. U.S. Department of Commerce, Economics, and Statistics Administration, U.S. Census Bureau. December 2003.
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12.  Arab American Demographics. Arab American Institute. Available at: www.aaiusa.org/demographics.htm#undercount
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13.  Census Blamed in Internment of Japanese: Scholars study wartime bureau. Steven A. Holmes, The New York Times, March 17, 2000. Available at: seattlepi.nwsource.com/national/cens17.shtml
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14.  Census Bureau Gives Customs Agency Data. Jack Chang, Contra Costa Times, August 24, 2004.
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15.  Epidemiologic Profiles of HIV/AIDS in Michigan. Michigan Department of Community Health. 2004. Available at: www.michigan.gov/mdch/0,1607,7-132-2944_5320-36307--,00.html
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16.  Save Program. U.S. Citizenship and Immigration Services. Available at: uscis.gov/graphics/services/SAVE.htm
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17.  Stopping the Spread of HIV: 2 break through silence to help teach gay Arabs. Bill Laitner, Detroit Free Press, March 16, 2004. Available at: www.freep.com/news/locoak/garab16_20040316.htm
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18.  Cohen, Cathy J. 1999. The Boundaries of Blackness: AIDS and the Breakdown of Black Politics. Chicago: The University of Chicago Press, p.339.
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