Why Race Matters: Women and HIV

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Race matters when it comes to HIV – and not just for women of color. 

Around the world, the "female face of HIV" is, overwhelmingly, the face of a Black or Brown woman. This is the case worldwide, where roughly half of all people living with HIV are women. The vast majority of these women live in sub-Saharan Africa and Asia, where the percentage of women with HIV is rising. Further, transgender women around the globe are nearly 50 times more likely to be living with HIV than the general adult population.

In the US (where this fact sheet will mainly focus), about one in four people living with HIV (HIV+) is a woman. However, African-American women and Latinas make up nearly 80 percent of these women, even though they account for less than 30 percent of the US female population. (For more information, view our fact sheet, Women and HIV.) One study also showed that the HIV rate is more than three times higher among Black transgender women than among white or Latina transwomen.

Though not often talked about, in part due to their small numbers in the population overall, American Indian/Alaskan Native communities experience the third-highest HIV rate of any racial group in the US. And while Asian/Pacific Islander communities may not be as heavily impacted by HIV, cultural factors may leave women in these communities vulnerable to becoming HIV+, or make it harder for them to connect to HIV care. 

While the number of women being diagnosed with HIV each year in the US overall has gone down by 40 percent in the last decade or so, that number is still high among women of color. Differences in HIV rates by race get talked about a lot in the HIV community. HIV is not the only health condition that affects different races differently due to social factors – as we've seen with diabetes and heart disease among communities of color – as opposed to inheritance (passing a health condition down through a family over generations through genes). However, the root of why these differences exist is often misrepresented (and steeped in bias and myths), rarely well explained, and even less often addressed. 

What Are Health Disparities?

Global HIV activist and medical anthropologist Paul Farmer has called HIV-related health disparities "the biological expression of social inequalities" (unequal or unjust social conditions). 

A health disparity (a difference in health that is linked to unequal or unjust social conditions) can be a higher rate of a disease among certain groups than others, even with ongoing prevention efforts. These disparities may exist according to gender, race, education or income level, disability, sexual orientation, region, and more. 

Social determinants of health (the social realities that have an impact on a person's physical health), like poverty, lack of education, and racism, are linked to health disparities.

What Is Race?

We usually think of a person's "race" as being tied to the color of their skin, the shape of their eyes, or other physical traits, as well as the part of the world from which their ancestors originated. But those factors don't explain why people in the same country, or even the same city, can have such different levels of health based on their race. Human beings just aren't that physically different from one another. 

Race is as much a social category as a biological one.  It is a way of explaining differences in the way people live in society, including how healthy they are, based on differences in how they look and how they are treated accordingly. In reality, the social conditions that people live under affect their health, not how they look. 

Race is a powerful idea that has been used to separate people and make opportunities available to some people based on their race, while keeping the same opportunities out of reach for people of other races. Usually, this process of racial separation has occurred over many generations, and become deeply embedded in the structure of society. 

Racism is the system in which people are valued differently because of their race. This system:

  • Unfairly disadvantages some individuals and communities
  • Provides unearned advantage to other individuals and communities
  • Damages the whole society, because human resources get wasted when all people are not treated as valuable and supported in fully contributing to society

For example: Many key reasons why a person of a certain race may be more likely to acquire HIV have less to do with their body being different from someone else's than with the factors that structure how they live – factors that also structure how people in their social group live, and may have lived over multiple generations of unequal treatment.  

Aryah Lester, a blogger on The Well Project's A Girl Like Me blog, writes about living "in the basement: the lowest floor of the social systems we have here in America" as a woman who has experienced being devalued by racism, sexism, classism, as well as transphobia, and recognized these inequalities since childhood. [Trigger warning: The blog entry linked above contains descriptions of sexual violence and discrimination.]

"I … first learn[ed] about the perceived differences in skin color, notwithstanding our commonality or upbringing," Aryah writes. "I empathized with my father when he was refused well-deserved promotions because he was of color." 

Aryah goes on to describe seeing how women are deemed less valuable than men in our society, and often experience outright violence as a result: "Women all around me were delegated to the floor below in their homes, at their jobs, and in the public. Women in our history books were often just sidekicks of 'greater' heroes, who all happened to be male." 

When she began transitioning from male to female in her late teens, she says, "the basement door became sealed. I found myself pounding on the door for employment, searching for the keys to a healthy relationship, and trying to break the windows of public opposition."

When Aryah became the victim of a terrible act of violence, she didn't scream, or tell anyone – because of her fragile economic state, and the fact that people who look like her are often not valued or believed: "I could only think of my stay in the basement. … 'I might be kicked out, not being on the lease.' 'Who's going to believe me?' 'Just take it, you've been raped plenty of times before.'" She tested HIV positive a few months later.

Racism and other forms of inequity have been proven to cause stress on people’s minds and bodies, and stress has a negative effect on health. Racism has even been shown to be a form of trauma. Women living with HIV experience trauma at much higher rates than the general population of women, both before and after their diagnosis. Trauma also has a negative impact on health. For more information about this connection, read The Well Project's fact sheet on Trauma, Women and HIV

Racism is not just a way to describe how individual people see or treat one another. A white person may have many friends of different races and have never harmed another person on purpose because of their race. However, that person still benefits from a system that has, for many generations and in many ways, put a higher value on the lives of white people than people of color. 

Being antiracist (against racism) does not just mean that white people must treat individual people of color with respect. Being antiracist means disagreeing with the ways systems in our society have shut out or been biased against people of other races for many generations. It also means recognizing the ways we may benefit from systems that are biased against others (privilege). 

What Is Privilege?

"I am a white woman, I have privilege. I recognise that we don't have to have a hashtag for white lives. ... Racism towards white people is up for discussion and it pains me!

"The statistics of HIV speak volumes don't they? Maybe I need to shout it louder, as my white voice is more listened to!" – MelPainter2014, "#BlackLivesMatter," on A Girl Like Me

Privilege is a set of unearned, and often invisible, benefits experienced by people who, based on aspects of their identity, fit into social groups that have power: white race, middle or upper class, male, heterosexual, documented citizen, native English speaker (in the US), to name a few.

Some examples of privilege include, but are not limited to, being able to:

  • assume that most of the people you or your children study in history classes and textbooks will be of the same race, gender, or sexual orientation as you
  • assume that your failures will not be thought of as being due to your race or gender
  • disregard thinking about your race, class, gender, sexual orientation, disabilities, etc., on a daily basis.

A few things to remember about privilege (adapted from Everyday Feminism's "What Is Privilege?"):

  1. It's often easier to notice oppression than privilege.
    It's definitely easier to notice the oppression (system of unjust treatment) you personally experience than the privileges you experience, since being mistreated tends to leave a deeper impression than being treated fairly.
  2. Privilege doesn't mean you didn't work hard.
    Many people feel personally attacked when someone points out their privilege, as if that person is saying they haven't worked hard or experienced challenges or trauma. Having privilege doesn't mean a person's life is easy, but rather that it's easier than others' in certain ways.
  3. Privilege describes the kind of treatment everyone ought to experience.
    Often, when someone points out some way another person has privilege, that person protests that they haven't gotten any "special advantages" – that what they are getting is basic fair treatment. The problem is that others who don't have privilege are getting less than that, not that that person is getting more than they deserve.
  4. We need to understand privilege in the context of power systems, not individual experiences.
    People tend to look at privilege individually instead of as a system. President Obama's election as the first president of African descent was an inspiring, historic event. It did not signal an end to racism. Black people are still impacted unfairly by poverty, police violence, and poor health outcomes, even though Obama is president. Privilege is part of systems and social patterns. The few notable exceptions to the rule of privilege do not make privilege go away.
  5. Privileges and oppressions affect each other, but they don't cancel each other out.
    Often, people believe that they can't experience privilege because they also experience oppression. A common example is the idea that poor white people don't experience white privilege because they are poor. Poverty is a system of oppression, but this doesn't cancel out the fact that they can still benefit from being white.

"I can completely understand why broke white folks get pissed when the word 'privilege' is thrown around," writes author and advocate Gina Crosley-Corcoran in a great article called "Explaining White Privilege to a Broke White Person." "I was constantly discriminated against because of my poverty and those wounds still run very deep ... [But] the concept of intersectionality recognizes that people can be privileged in some ways and definitely not in others."

What Is Intersectionality?

Intersectionality is the idea that many parts of a person's identity impact their life at the same time. Some of those aspects give them privilege, and some lead them to experience oppression. The parts of a person's identity cannot be separated. For example: All women experience sexism. But the sexism that Black women and white women experience will be different, because Black women experience sexism that is also affected by racism.

If we think about a woman living with HIV as "just" a woman and not as a Black woman, or a mother, or a woman with past experience of trauma, or a woman living in a rural area, or any other aspect of her identity that impacts the way she lives in society, then many key ways to connect with that woman and advocate for her needs and rights will get missed.

In order to provide each woman with the best possible care, services, and support, it is important for our care providers, government, and other connected systems not to treat HIV disease just by itself. They must recognize and address the intersectional issues that impact women's ability to access great HIV care, heal from past traumas, and have the best possible quality of life with HIV.

On World AIDS Day 2014, our partners at Positive Women's Network-USA (PWN-USA) teamed with a diverse group of advocates to write a statement calling for more intersectional approaches in HIV work. "The differences in our experiences – the learning edges of power and oppression, privilege and vulnerability—" said the report, "can, for our extraordinarily diverse HIV community, be sources of strength themselves." 

HIV Among US Women of Different Races/Ethnicities

Race and gender intersect with many other factors in the lives of women living with HIV. Below are a few examples of factors that affect women living with HIV in different racial groups, or make them more vulnerable to HIV.

Factors Impacting HIV Among US Women of Different Races/Ethnicities*

Poverty

According to the US Census Bureau, 26% of African Americans and 24% of Latinos are living in poverty, compared with 10% of whites
American Indians/Alaskan Natives have the highest rate of poverty of any racial/ethnic group in the US – roughly 29%
Due in part to histories of racist housing policies, African Americans and Latin@s are far more likely than whites to live in concentrated poverty (entire neighborhoods/areas cut off from easy access to resources like health care or high-quality schools)
American Indian reservations are also sites of high concentrations of poverty
Poor whites are much more likely to be spread out to more economically diverse neighborhoods, which increases their access to opportunity
A 2010 study by the US Centers for Disease Control and Prevention (CDC) of people living in poverty in 25 US cities found that HIV rates in these areas were very high – over 2%. Higher than one is a generalized HIV epidemic (spread over many groups, not just concentrated to a few). HIV rates in these high-poverty areas did not differ a lot by race, showing the extent that poverty as well as race matters when it comes to HIV

Immigration experience

The experiences of undocumented people, including Latin@s and Asian immigrants, may lead them to fear being tested for HIV or disclosing HIV status
Immigration status and migration patterns also affect access to health care
Lack of available HIV education materials in a language a person speaks or reads is a barrier to HIV awareness

Cultural factors

Among American Indians/Alaskan Natives, there are over 560 federally recognized tribes whose members speak over 170 languages and have their own beliefs and practices, which makes it harder to develop culturally appropriate prevention
In more traditional Asian and Latin@ communities, gender roles and cultural norms (ie., "machismo," which stresses that Latino men be very masculine, and "marianismo," which demands Latinas be "pure") may add to prevention challenges
Some Asians/Pacific Islanders may avoid HIV care or prevention services to "save face" (avoid potential humiliation – a core value in many Asian cultures) or for fear of bringing shame to their families

Data limitations and racial/ethnic misidentification

Incorrectly identifying a person’s race/ethnicity can lead to underestimation of HIV cases. This may happen more frequently with Asians and Pacific Islanders, so the true rate of HIV in this group may be unknown
Racial misidentification of American Indians/Alaskan Natives may also lead to undercounting of this population in HIV surveillance
All these issues can lead to underfunding of targeted services
Transgender individuals in all racial groups face the challenge of data limitations and misidentification on the basis of gender identity

Rates of violence and trauma

The body of research continues to grow that shows that women living with HIV face a greater impact of trauma and violence, both before and after their diagnosis, than the general population of women

American Indian/Alaskan Native women experience sexual and intimate partner violence (IPV) at a higher rate than any other racial group of women in the US 

  • 39% of Native women have reported experiencing intimate partner violence (CDC reports that about 31.5% of women overall have experienced IPV), and 34% will be raped in their lifetime (compared to less than one in five women in the general population)
  • The rate of posttraumatic stress disorder (PTSD) among Native women is also very high 
  • These harms against Native women are underreported, and not well documented

Stigma

Stigma is named as a factor increasing vulnerability of all racial groups
Stigmas are intersectional as well; types of stigma (based on gender identity, sexual expression, class, race), when they occur together, can make one another worse, and fuel HIV-related stigma

"Girl next door" stereotypes

There is very little written specifically about the cultural factors that can leave white women vulnerable to HIV
Many white women have reported that not "looking like” they were at risk for HIV ("I’m the girl next door," says one educator who is a white woman living with HIV), may have led to them not being offered HIV testing for years, even if they were connected to sexual health care
This is another reason why it is in white women’s interest to oppose racism: It is bad for their health, too. Racial privilege may lead white women to get messages from society that they are "normal," "good," and "clean" compared to women of color. These beliefs are a barrier to white women being tested for a health condition that is associated with women of color -- even though white women acquire HIV in the same ways that women of color do.
When women with privilege challenge the racism that portrays having HIV as different from what "regular women" experience, in part because rates are so much higher among Black and Brown women, then we fight stigma at its roots

Let's Get Intersectional! Taking Action, Making Change

Now that we've outlined some important issues, where do we go from here?

A huge first step is to understand some of the different intersectional experiences women living with HIV may face, so that we can better work together to advocate for one another and ourselves. How do we do that?

  1. Recognize privilege and use it for change: Remember: Pointing out that privilege exists is not meant to make those who experience privilege feel guilty. Being born with and having privilege is not usually something a person chooses, but using privilege to challenge oppressive systems is a choice. Silence about these systems from those who benefit from them is what keeps them going. Calling out where systems are biased is what challenges them.
  2. United we stand: The voices of women living with and affected by HIV have long been underrepresented and unheard at decision-making tables. But there is a history to build from in challenging privilege in the HIV community – most notably, the privilege of doctors and researchers to hold all the knowledge about HIV and deliver it to people living with HIV. We know that people living with HIV have the most information and expertise about living with HIV and what's needed for people living with HIV to live and thrive. Therefore, people living with HIV must be in positions to shape decisions that impact their lives. This is a principle that all people living with HIV can get behind.
  3. Put those most impacted front and center: Both outside and within our HIV community, people most impacted by racism, patriarchy, class oppression, disability rights violations, homophobia, and other intersecting systems of oppression have the most information about what it is to live under these systems and what is needed to start to take them apart. A gigantic step in challenging privilege is to listen to those who are most impacted by that issue – and then act on what you have heard. 
  4. Join a community: A Girl Like Me is a diverse online community where women living with HIV form a wide range of experiences share their perspectives and truths. Join us! Learn more about The Well Project and A Girl Like Me. Many other extremely valuable communities of support exist for women -- some online, some within your own local area. The Well Project highlights several impactful organizations in our Partners section. You can also find community and support by browsing the resources in AIDSmap's e-atlas.
  5. Take action: In the US and around the globe, there are many fantastic advocacy organizations fighting for the rights of people living with HIV at the intersections of gender, race, national origin, income, and more. Below are some examples.

As PWN-USA leaders Vanessa Johnson and Waheedah Shabazz-El put it in a statement on National Black HIV/AIDS Awareness Day 2016: "The HIV epidemic in this country will end when America commits to the underlying conditions which enable HIV to thrive, such as racism and poverty."

GLOBAL ADVOCACY GROUPS:

ATHENA Network
CARE
Center for Health and Gender Equity (CHANGE)
Global Coalition on Women and AIDS (GCWA)
Global Network of People Living with HIV (GNP+)
International Community of Women Living with HIV (ICW)
International HIV/AIDS Alliance

US-BASED ADVOCACY GROUPS:

Advocates for Youth
AIDS United
Black AIDS Institute
Center for Women and HIV Advocacy (HIV Law Project)
Global Network of People Living with HIV – North America (GNP-NA)
HIV Prevention Justice Alliance
National Minority AIDS Council (NMAC)
National Women and AIDS Collective (NWAC)
Positive Women's Network - USA
Positively Trans
Sero Project
SisterLove, Inc.
Translatina Coalition
Treatment Action Group (TAG)
US People Living with HIV Caucus

 

* References for table information:

Additional Resources

Select the links below for additional material related to race, women and HIV.

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