Community Engagement on HIV Policy: Are Town Halls Meaningful Enough?

Catherine Hanssens

Community involvement is meant to hold government accountable to the people affected by policies. But meaningful engagement of communities rarely occurs. Will the town halls on HIV planned by the Administration be any different?

This article is part of a
special series this week focusing on HIV and AIDS in the United States.  Rewire is partnering with CHAMP, the AIDS Foundation of Chicago, the HIV Prevention Justice Alliance, and organizations such as the Center for HIV Law and Policy to highlight issues on domestic HIV and AIDS policy while several thousand people attend the National HIV Prevention Conference in Atlanta, Georgia. 

One of the highlighted events during the national AIDS prevention
conference in Atlanta this week is the town hall meeting scheduled for this
evening, Tuesday, from 6:30 to 8:00 p.m. Jeff Crowley, Director of the White
House Office of National AIDS Policy (ONAP), will hear from conference
attendees and others on their views of the development of the National HIV/AIDS
Strategy (NHAS).  This and a dozen
other town hall meetings scheduled all across the country have been planned to
“engage the public in meaningful ways,” as the White House website puts it, in the
development of a long-overdue national strategy to address the U.S. domestic HIV
epidemic.  ONAP also plans to get
input from a soon-to-be-reconstituted President’s Advisory Council on HIV/AIDS
(PACHA), and from input posted on a new page for that purpose appearing on www.whitehouse.gov. 

Efforts are underway to help people make their comments at these town
hall meetings as useful as possible. 
Starting with the Atlanta town hall, advocates in 13 different locations
will have about 90 minutes (assuming things start and end on time, and minus
introductions and wrap-up) to tell Crowley their views.  This is a start towards making a
reality out of manifestos such as the Denver Principles, which call for
inclusion of people with HIV in every level of decision-making in the policies
and organizations affecting their lives. 
But is this step enough?  Is
this opportunity for input sufficiently meaningful?

There is a fundamental difference between real participation in the
process of creating a National HIV/AIDS Strategy, and offering input through
forums where community stakeholders lack access to actual drafts of a plan or are
limited to reacting to a strategy crafted without their direct
involvement.  Those who’ve worked
on legislation or tried to provide input on pending regulations know that it is
far more difficult to have any influence from outside the process than it is
when you are inside.  Comments
submitted on draft regulations, for example, rarely will secure significant
changes once the administering agency has committed itself to a version of
those regulations, particularly if that agency has a policy agenda at odds with
community preferences.  In
contrast, a call for inclusion of community representatives in the recent CDC
consultation to develop new guidelines for HIV testing in non-clinical settings
resulted in sufficient inclusion to produce subcommittee recommendations reflecting
an understanding by community reps’ on-the-ground of the policies needed to
address the populations they serve. It is far more difficult to ignore or
marginalize the views of stakeholders when they are at the table and part of
the plan development from the start.

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In response to demands for something more than town halls, a website,
and PACHA as a way to weigh in on a national AIDS strategy, ONAP offered some
reasons why more direct involvement in the task force Crowley will chair
couldn’t include consumers.  One
was that inclusion of consumers in meetings with government task force members
would dilute the latters’ investment in the strategy itself, and inhibit free
discussion.  Another was that
federal law – the Federal Advisory Committee Act (FACA), to be specific –
restricts community participation.

As for fears of an inhibited and divested interagency task force, members
of that task force need to understand from the get-go that community involvement
and investment in the plan and its implementation is at least as vital. People
with HIV and their advocates are and should be treated as a powerful, valuable
resource in this process.  If a
government agency representative is inclined to think that agencies know best
and that the views of people with HIV are not relevant to a plan to prevent its
further transmission, I think it’s in our job to make sure that person does
feel inhibited.

As for the FACA, that dog just won’t hunt.  FACA was created to ensure transparency of the many existing
advisory committees, councils, boards and similar groups that advise member of
the executive branch, not to prohibit them.  FACA requires that membership on advisory committees be
balanced, and has certain procedural requirements for the creation and conduct
of these committees, but none of these requirements are particularly burdensome
(PACHA is an example of such an advisory committee).  But FACA doesn’t even apply to consumer subcommittees that don’t
report directly to the President or government officials but instead develop
info, statistics, reports and even recommendations for government task forces
or advisory committees.  

A NHAS process that involves a task force made up of multiple agencies
needs the participation of people with HIV and their advocates who are familiar
with the work of each of these agencies and who can be prepared to hold them
accountable in their contributions and commitments to a national plan.  A more democratic process, with sufficient
community representatives to address needs that relate to each participating
agency’s mandate, will produce not only a substantively better strategy, but
one far more likely to secure wide community understanding and support. 

Analysis Sexual Health

Vaginas Are Sperm Depositories and Other Scary Things About the State of New York’s Sex Ed Curricula

Martha Kempner

The New York Civil Liberties Union released a new report this week detailing its findings from a survey of school districts across the state. And the findings are pretty scary.

Along with many others children, teens, and adults, this week I went back to school, too. I started teaching Introduction to Human Sexuality at a local college, something I haven’t done in about six years. In an effort to gauge what my students had already learned and what they wanted to know, I gave them an anonymous questionnaire which, in part, asked them to describe their sexuality education up until this point. At least five of them said that they’d had the “standard” or “usual” high school sex education. Unfortunately, this wasn’t particularly enlightening to me because as a new report from the New York Civil Liberties Union (NYCLU) highlights: when it comes to sex ed there is no such thing as standard; every district or even every classroom is different.

A survey of school systems across New York was conducted by NYCLU to determine what, if anything, they were teaching students about sex. Schools in the state are not required to teach comprehensive sexuality education, and while they are required to teach about HIV and certain other health topics, most of the lessons do not address sexuality or relationships. Schools do have to teach about alcohol, drugs, and tobacco; the prevention and detection of certain cancers; child development and parenting skills; and interpersonal violence. They do not, according to the new report, Birds, Bees, and Bias, How Absent Sex Ed Standards Fail New York Students, have to teach about “healthy relationship skills, STI and pregnancy prevention, puberty, [and] anatomy” or “other core aspects of effective, comprehensive sex education.” In 2005, the Department of Education issued state standards for health education, which included many topics related to sexual health. However, these standards are voluntary, and school districts do not have to comply with them. The authors also mention the National Sex Education Standards, which were released early this year by a number of national organizations. These set minimum content requirements for concepts in sex education but are also not binding. The report concludes: 

“The current legal and policy climate permits schools in New York to decide what, if any, sex education they will teach beyond the mandated HIV education. As a result, whether New York’s teens graduate from high school with the information and skills crucial to making lifelong healthy and informed decisions about sex and relationships rests in the hands of each individual school district, principal and health education teacher, with little guidance and even less oversight.”

To determine what students are learning, NYCLU sent questionnaires to a sample of school districts across the state making sure to include small, medium, and large districts. New York City was excluded in part for efficiency purposes. Since the surveys were sent out, however, the city passed a sex education mandate that went into during the 2011-2012 school year. NYCLU says: “We look forward to reviewing New York City data and instruction at a future date.” In total, 108 school districts were included, representing 542,955 students or nearly half of all students enrolled in districts outside New York City. In addition, the authors reviewed the most commonly used textbooks in the state.

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The study found major gaps in the education young people should have been receiving, as well as numerous factual errors and biases in the information they were actually given.  

Outdated HIV Information

This handout fails to explain HIV/AIDS treatment options or how to reduce transmission. the headstone as an inevitable endpoint exploits outdated fears without providing students with additional information.

As the only sexuality-related topic that is mandated, HIV is one of the subjects most likely to be covered by school districts in the state.  In fact, 93 percent of districts surveyed provided information on this topic. Unfortunately, many of them used outdated information on “prognosis, drug therapies, prevention and transmission.” Some of the outdated and inaccurate information includes districts telling kids:

  • “Once you have AIDS you will live from 6 months to 3 years.”
  • “[HIV] kills an individual.”

One district mentions AZT, the earliest antiretroviral drug, which was introduced in 1987, but does not discuss any of the newer available therapies. Another provides students with a handout that gives an illustrated timeline of what happens when you become infected with HIV. The timeline explains that one goes from being asymptomatic to having HIV symptoms within 12 years (without mentioning available drug therapies), that the individual then goes from HIV symptoms to AIDS and opportunistic infections within two years, and from there they go to a tombstone that says RIP within two more years.

Anything with a tombstone is clearly trying to instill fear in young people, which is bad enough, but this illustration is troubling in other ways as well. It misses many opportunities to talk about how people are now managing to stay healthy longer with HIV, and it misses all opportunities to mention how to prevent the spread of HIV. In fact, the person in the timeline gets tested for HIV and finds out he’s positive before going into the stage where he is asymptomatic which is described as “feeling healthy but still spreading HIV.” 

Young people should know that HIV is preventable through both abstinence and the use of condoms and that it is possible to have it without spreading it. 

Incomplete Information about Anatomy

I’ve always thought of anatomy as one of the more innocuous subjects in sexuality education. Everyone in that classroom has a urethra, so why is it such a big deal to teach them about it? But apparently, if New York schools are any indication, it is. According to the report:

“Of the districts sampled, 69 utilized some illustration of male and female genitalia and reproductive organs. But nearly two thirds excluded any mention or depiction of external female genitalia.” 

In fact, in many places, women were defined solely in relationship to men or the birth process. The Holt Lifetime Health textbook,   which is used in five districts in the state (and many more across the country), defines the vagina as the “organ that receives sperm during reproduction.” One district takes it even further and defines the vagina as a “sperm deposit.” Seriously? As the owner of a vagina, I find that deeply offensive. It’s even more offensive when you think about how it’s not just sexist (women count only for what they do for men), it’s hetero-sexist (the idea of the function of vaginas being for men completely discounts women who have sex with women).

 A handout showing rudimentary illustrations of reproductive “tracts” demonstrates the lack of medically accurate and complete information students learn in basic anatomy lessons.

But don’t worry, ladies. We’re not made just for men, we’re for babies, too.  Many districts define the vagina as the “birth canal” and the uterus as “where the baby grows.” The best illustration of this is a picture called “after birth” which shows a full-term baby still attached by the umbilical cord to half of a woman’s body depicted from the waist down with one leg and a uterus but no  external genitalia—just a gaping hole from the uterus.  I suppose since the external genitalia of women are mainly for women, it is not that important for students to learn about—with the clitoris being the only organ in the human body that has no other function than pleasure and all. Or maybe they just couldn’t find any good male-centric language to use for the definitions. 

The Virgin/Slut Dichotomy

One of the things that I’ve found most upsetting about abstinence-only-until-marriage curricula is their not-so-sensitive treatment of sexually-active students. Most of these programs use messages of shame to suggest that those who have had sex are somehow less worthy of love or respect than those who are waiting (presumably until marriage, though let’s face it, few get there). Though many of the districts are not using strict abstinence curricula, a lot of students in the state are getting these kind of messages.   One district uses a 1997 pamphlet that says:

“Maybe you think your friends will say you’re cool if you have sex. Well, just wait until you catch a sexually transmitted disease. Every year, thousands of teenagers do. And the sex that was supposed to make them so popular, turns them into the school’s biggest outcasts overnight.”

Ten districts use a book that says: 

  • “Waiting until marriage to have sex preserves traditional marriage … Actions that preserve traditional marriage preserve the family. Actions that weaken traditional marriage lead to the breakdown of family life and much unhappiness.”
  • “Being sexually active interferes with your values and family guidelines.”
  • “Having sex outside of a loving, committed marriage increases your risk of feeling rejected, being compared to someone else, and feeling used by a partner.”
  • “When you practice abstinence, you will not be guilty of having sex with an unwilling partner. You will not be accused of date rape.”
  • “Character is a person’s use of self-control to act on responsible values. When you have good character, you uphold family values and practice abstinence from sex.”

With more than 63 percent of high school students having had sex, it’s particularly unfair to suggest that those who have never been sexually active have some kind of lock on morality, while those who are not virgins lack character. Moreover, while most parents do want their children to postpone sex until they are ready to be responsible, not everyone believes that pre-marital sex is wrong. Saving sex until marriage is not, contrary to what these districts are suggesting, a universal family value.

Everyone, and We Do Mean Everyone, is Heterosexual

The report also focuses on the messages that these districts are sending about sexual orientation to those students who are lesbian, gay, bisexual, or questioning their orientation (LGBTQ). In fact, more than half the districts surveyed provide no instruction on this topic at all. They do not even mention gay men, lesbians, or bisexual individuals.

Unfortunately, that may be as a good as it gets because other school districts acknowledge the existence of homosexuality but only mention LGBTQ individuals in a negative context.  For example, one school defines “homosexuals” in its lesson on AIDS  in the United States saying the epidemic  “… Involved homosexual, or gay, men. Homosexuals are people who are attracted to and may engage in sexual relations with people of the same gender.” Another put its explanation of same-sex attraction under the heading “Taboo Definitions.”  And yet another tells students that same-sex attraction is a reason to “seek counseling.” 

Most schools, however, just seemed to refuse to acknowledge the existence of same-sex relationships by relying on examples that include only male-female couples and defining everything from dating to marriage as happening between a boy and a girl or a man and a women.  Families in which same-sex couples are raising children are also completely ignored.

Such messages are dangerous to all young people and likely to alienate LGBTQ students from their teachers and the course messages.

Boys will be Boys and Girls will be Virgins

The report highlights additional lapses in information (such as how few school districts actually teach students how to use condoms) and other biases (such as telling teen parents how impossible it will be for them to be successful or raise healthy children).  Many districts, it seems, also go out of their way to reinforce gender stereotypes.  A number of districts have created very interesting handouts: 

  • One states that: “Most teenage girls believe that sex equals love; other teens—especially boys—believe that sex is not the ultimate expression of the ultimate commitment, but a casual activity and minimize risks or serious consequences.”
  • One describes women as hazardous material discovered by “Adam.”  The handout suggests that the uses of this new element include “highly ornamental especially when in sports car” and “can be a very effective cleaning agent.”  The chemical properties include “reacts well to gold, platinum, and all precious stones.”  And, the hazards include “turns green when placed next to superior specimen.”

My favorite, though, might be the brain maps.  Apparently, the male brain includes an area for “crotch scratching,” a gland for “lame excuses,” and a pea size spot dedicated to “attention span.” The female brain, in contrast, has an “indecision nucleas,” (sic) and a “need for commitment hemisphere,” as well as areas dedicated to talking on the phone, shopping, and jealousy.  Oh, and in case learning about such ridiculous stereotypes which are demeaning to both genders wasn’t enough to fulfill the “gee men and women sure are different” quota, the brains show that men have two big areas for sex and women have only one tiny little one. Yes, let’s once again tell girls that they shouldn’t really want sex and remind boys that there is something wrong with them if they’re not actively trying to get into every girl’s pants. 

Where to Go From Here

The report makes a number of suggestions for how schools, legislators, and others can rectify the situation in New York.  Here are some examples: 

Steps for the State Legislature

Pass legislation. The Legislature could also pass legislation that requires voluntary sex education to meet certain minimum content requirements.

Steps for Local School Districts
Evaluate curricula and textbooks.
Make sure the materials in use in your district are up-to-date, accurate, comprehensive, and inclusive of all students. Help educators select quality materials for their classes.

Steps for Teachers
Supplement textbooks.
Because textbooks are written for a wide audience—including states with abstinence-only decrees—they can be limited in scope and contain religious overtones. Consider supplementing textbooks with quality commercial curricula, materials from local reproductive health care providers and qualified guest speakers. Keep in mind that information enshrined in a textbook may seem more credible in students’ minds; think about how you can present other information in a way that makes it stand out.

Steps for Parents
Speak up. Let your child’s teachers and principals know if you think they are teaching bad information. Going over lessons also gives you a chance to discuss what your child learns at a school—and an opportunity to talk openly about sex, health, relationships and identity issues.

Steps for Students
Ask questions. Don’t be afraid to seek information from a trusted adult or health care provider, especially if your sex-ed class left you with questions. Medical providers, including your school nurse, are bound by confidentiality. They can’t tell anyone about your conversations. (The only exception is if they suspect, or you reveal, that you have been a victim of abuse.)

These pieces of advice are good, not just for the people of New York, but for elected officials, educators, parents, and students across the country. Though this report is just about one state, it gives us cause for concern about the gaps in and problems with sexuality education throughout the nation.

I’m also going to take this advice because when I’m done with this article I have to start planning my lecture for Monday which is on anatomy and physiology. And even though my students are all over 18 years of age and in college, and many said they’d had sex education before, I’m not going to assume they learned even the simplest information.   

News Sexual Health

Why Are Sex Workers Being Banned From Participating in the International AIDS Conference? A Call to Action on Sex Work and HIV

Darby Hickey

Sex workers and allies demand US policy change in lead up to the International AIDS Conference.

Part of Rewire’s coverage of the International AIDS Conference, 2012.

In July, the International AIDS Conference is being held in the United States for the first time in over twenty years, after the successful repeal of the ban on HIV-positive foreign nationals entering the US. However, US immigration law still bars entrance to anyone who has engaged in sex work in the past 10 years — even if they have no criminal convictions or work in a country where it is legal. This exclusion will prevent many current and former sex workers from outside the US from attending the conference. Yet sex workers and their clients are two of the populations at greatest risk of HIV infection.

Without the input, knowledge, and resources of those most directly affected by the disease, there is no chance of stopping the AIDS epidemic. To hold the government accountable for its harmful policies and in solidarity with those unable to attend the conference, US-based sex workers and allies collaboratively drafted A Call to Change US Policy on Sex Work and HIV – in consultation with numerous sex workers and sex worker-lead organizations in the US and abroad. We invite all people committed to ending AIDS to endorse this statement.

Structural issues drive HIV within the sex sector — criminalization and stigma compound health disparities already affecting those on the wrong end of racial, economic, and gender inequality. But when sex workers design and lead HIV prevention efforts, receive services and resources, and are supported to address social injustice, sex workers have successfully curtailed the spread of AIDS. For example, a decade of research documents the Sonagachi Project in India as an HIV prevention success story. Indigenous in origin and locally-led, the project is successful because of its focus on principles of empowerment enacted in a multidimensional spectrum — on individual, group, and structural levels — and the underlying premise of sex work as a valid profession.

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Such excellent rights-based efforts are undermined by US policies. SANGRAM is another Indian program working with sex workers — USAID even highlighted it as a best practices model. But SANGRAM has turned down USAID funding because of the Anti-Prostitution Loyalty Oath. This misguided requisite for US global AIDS funding stipulates that recipients condemn prostitution – and prevents them from using best practices such as peer leadership and empowerment programs with sex workers. The US imposes and continues to expand such harmful policies both domestically and abroad, putting sex workers at increased risk for HIV.

The removal of the Anti-Prostitution Loyalty Oath and other AIDS funding restrictions is one of the demands of the Call to Change. These four demands are based on research and the UN’s examination of the US human rights record via the Universal Periodic Review in 2011 – during which the US government agreed, “that no one should face violence or discrimination in access to public services based on… their status as a person in prostitution.”

  • We demand that the US repeal and eliminate restrictions on domestic and global AIDS funds (such as the President’s Emergency Plan for AIDS Relief’s Anti-Prostitution Loyalty Oath) and support evidence-based best practices for HIV prevention, treatment and care targeted at sex workers.
  • We demand that the US repeal the prostitution inadmissibility ground for immigration and provide non-judgmental social services and legal support for migrant sex workers, as part of comprehensive immigration reform.
  • We demand that sex workers not be subjected to arrests, court proceedings, detention, mandatory testing or government-mandated “rehabilitation” programs; the government must institute mechanisms that allow sex workers to find redress for human rights violations and implement rigorous training of law enforcement officials on legal and human rights standards.
  • We demand the US reorient anti-trafficking campaigns to be in line with the standards set by the United Nations and engage sex workers in helping stop exploitation in the sex sector.

These four action points address the different levels at which the AIDS epidemic can be disrupted – from the individual (access to prevention supplies and programs) to the structural (law reform). If the US government were to adopt these demands, it would be a game-changer – helping turn the tide in the fight against HIV.

Evidence-based best practices and human rights principles must inform the global response to AIDS. Please join us in calling on the US government to change its policies and save lives. Your endorsement will help build a movement for change.

Click here to read the Call to Change and endorse.