Tag Archives: HIV disclosure

3 People and An HIV Positive Baby?

The problem is so common there is a term for it. Andrew shares his personal struggle trying to deter the “bug chasers” from his “gift” (NSFW).

drewsmonologueI have been around the block quite a lot and I thought I had seen and read everything and that nothing would shock me…but I was wrong! A few years ago I was chatting with friends on Gaydar when a bisexual husband and wife started talking with me. At first all was going well- just casual chats. Soon this changed to a very sexually infused conversation so I told them I was HIV+. I thought that this would be the end of it and that I would get the usual comments back when I disclosed that I carry what some had labelled “THE GAY PLAGUE”.

But much to my shock they got even more eager and horny saying ,“Oh please fuck us bareback!”

Now don’t get me wrong, I wasn’t even here looking for sex, let alone sex without a condom. I tried getting rid of these people who seemed to be looking to become positive but this didn’t work. So I tried explaining to them the downsides to having a disease like this: the tiredness, the slow healing, stigma and losing friends and family due to misunderstandings. None of this sunk in. If anything, it seemed to turn them on even more. By this time, I had resorted to my basic instincts and frankly told them where they could insert their desires and that I wanted nothing to do with them.

Now I’m not a fan of children in anyway and avoid them and their screaming like a medieval person would avoid a plague infested rat, but on this occasion I had to act.

You see, what got anger levels way up was they had said above all else they wanted me to fuck the wife bareback filling her with my “poz seed” and making sure that she fell pregnant by me so that they could have a positive baby! I felt sick and disgusted and so scared of the fact that there were people that not only wanted to be “POZ” themselves but would actively seek to create a new life- a baby who would be born with this terrible life-altering disease.

So I did what any decent human being would; I blocked the people, warned the room, and even spoke to Gaydar themselves, letting them know that the profile in question was seeking to purposefully contract “HIV” and to get the lady pregnant with a “positive” baby.

Gaydar said that it wasn’t within their control and that they didn’t have the right to tell people what they could or couldn’t do on their website and that I should just ignore them. Now I wasn’t satisfied with this outcome so I turned to the charity which offers advice to people about “HIV” and other STIs, ‘Terrance Higgins Trust’. I thought that they would agree with me and make a stand; tell Gaydar to block these people from the site and at least help educate people more. But no. They said as well that they couldn’t control what people did and that it wasn’t their place to tell Gaydar what to do.

I was lost and didn’t know what to do about this situation aside from carrying on telling people who wanted bareback with a positive person that they would be very sorry and have to deal with so much grief both from stigma and dealing with side effects of medication. Most people saw how stupid what they wanted was and changed their minds but some still went on looking and would search out those that were known as “Gift Givers” who would infect these “Bug Chasers”, as they called themselves.

Due to this situation, I have avoided Gaydar. Once people had learned I was HIV Positive they were drawn like bees to honey and it depressed me so much seeing their stupidity time and time again that I would at times cry.

There were a few things I realised due to this terrible event. The education of sexually communicable diseases needs to be increased and made openly available along with better display of condoms in shops, and that websites and other places that people can go for sex take more responsibility for dealing with people who are actively searching for the “GIFT” of disease from those people who are infected.

Monologues are independent stories and the opinions shared are the author’s own.

 

Ewwww, you have what?

For Andrew, the end of STI and disease stigma beings at the disclosure process. He finds that being open, matter-of-fact and disclosing his HIV status without shame is the most effective method- no beating around the bush. What is your approach to receiving or giving an STI disclosure?  

It was like any other day where you take those tentative steps in a new friendship. I stepped out the door and headed down to my local pub to meet up with a guy who I had been talking to for a few weeks on-line. Today was the day we had decided that we should meet face-to-face in the flesh and see where it goes from there. So when I get in the bar he waves me over and hugs me tightly and says, ‘Pleasure to finally meet you’. Of course, I am happy to be expanding my circles of friends but deep down I have a dark secret; a secret I was ashamed of back then.

So after a few rounds of drinks the conversation (as you can well imagine between to very horny men) got down to the nitty gritty of sex. ‘Aww Gary’ (not his real name), ‘There’s something about me you must know.’ To which he came closer and gave me a kiss on the cheek and whispered, ‘You can’t shock me. I want you’. I blushed and looked down then back up and stared him long and hard in the eyes and just blurted out, ‘I have HIV’. He open and closed his mouth a few times then pushed me hard away saying, ‘Ewwwww, you have what?’ I told him again everything. After a long tirade of abuse both physical and verbal, he just walked away, and thankfully I never saw him again.

For people who are as scared as he was I have taken to introducing myself like this: ‘Hi. I’m Andrew and HIV+ is what I am.’

This as you can well imagine has its ups and downs and can at times frighten people but I do it because LIFE IS TO DAMN SHORT not to! I shouldn’t have to waste time on what false friends might think or how they may treat me due to the positive diagnosis.

There is the other side of the coin as well: In order to protect yourself from harmful reactions or protect those you hold dear, at times it’s OK not to disclose to others. Positive people develop ways to navigate a disclosure and search for social cues to try to predict if it is safe to share their status with a particular person. Just know that anyone who truly loves you should have no bother with you begin HIV+ or having any other STI other than, ‘Will you be ok?’

The only time you really must disclose is when you intend to have any form of sexual contact with someone else.

And the onus isn’t only on those who must disclose a positive status. Harmful reactions to disclosure strengthen stigma and further help the virus spread. The general public needs to learn how to respectfully receive a disclosure.

The disclosure of any disease, infection or condition should not be an embarrassment or something to shame. It should be as easy as telling them, ‘Oh god, make me fucking cum.’ But we can’t, we don’t, we wont, and this is destroying families, lives and killing people whether be in direct connection to the said STI or due to the secondary effect which is the suicide of so many every year. The fact that this can still happen in this century is a disgrace.

I argue that the fault lies in the hands of all those who have reacted badly to being disclosed to- including reacting with violence or verbal abuse. It also lies in the fault of those who do not disclose. There is a general fear in our culture towards talking openly about diseases and conditions. This fear must be overcome.

The reasons people don’t disclose ranges from fear, disgust, pain (both physical and mental). The one that stumps me is people who want to intentionally pass on the virus. These twisted, deranged assholes are rare, but their extreme actions are potent enough to further stigmatize the entire HIV community and make tolerance of HIV in the dating scene even more difficult. Any reason for intentionally transmitting any disease is a disgusting habit which needs to be stamped out by everyone who cares about this. We can make stigma a thing of the past if we all shamelessly disclose and respectfully receive disclosure.

So to end this little piece, understand me when I shout this:

‘IM ANDREW JOHN NIELD AND I’M A PROUD MAN WHO JUST HAPPENS TO BE HIV+, STAND BY ME AND I WILL STAND BY YOU AND TOGETHER WE WILL WIN AGAINST THE BIGGOTS.’

Monologues are independent stories and the opinions shared are the author’s own

 

Youth-Made Announcements The Public Must Watch

The three videos presented here are like no other sexual health messages shared on prime time TV. They were made by HIV-positive youth from the Young Adult Program (YAP) at St. Luke’s and Roosevelt Hospitals’ Spencer Cox Center for Health. This video initiative, designed and facilitated by the consultancy group Connected Health Solutions Inc., has turned top-down approaches of traditional PSAs on its head.

Just “wear a condom every time”

For those of you who can’t remember, public service announcements (PSAs) from the late 80’s to ‘90s predominantly involved high profile personalities like Magic Johnson and Whoopie Goldberg telling you to “wear a condom every time”. Here’s young Whoopie (nostalgia!).


Babies with Hiv and Aids 1990s by NoHivNoAids

Some of these messages were groundbreaking for the time. Others were not so effective. In our interview with the founders of the HIV Disclosure Project, we discuss how early HIV awareness campaigns were based on fear, pushing condoms as the only option to avoid death. These messages were vague. They obscured real-life information about the different degrees of risks and how to manage those risks with options suited for the individual or relationship. You certainly didn’t see Growing Pains’ Kirk Cameron speaking about “fluid-bonded” couples, or how oral sex is risky for some STIs while less risky for others. Consequently, 30 years into the HIV pandemic, STI stigma and misconceptions about transmission are still perpetuated today.

But there is hope. The Young Adult Program (YAP) at St. Luke’s and Roosevelt Hospitals’ Spencer Cox Center for Health in partnership with Connected Health Solutions, Inc. (CHS), have changed mainstream top-down approaches of PSAs. They’ve cultivated a safe and critically reflective space for youth to produce their own public health messages. Upon contacting the project for an interview, however, I learned that their collaboration has been forced to stop due to loss of funding and state budget cuts.

#SpreadTheWordNotTheVirus

Depressing as this is, some of the youth who made the videos below are in the process of organizing an Indiegogo campaign to help continue the program. And not without celebrity pizazz and support from DJ Caroline D’Amore (whose mother died from AIDS-related causes). Watch this space for updates: SpreadTheWordNotTheVirus. And follow CHS facebook page.

YAP and CHS behind the scenes film production of "It's Not Just a Guy Issue" PSA.

YAP and CHS behind the scenes film production of “It’s Not Just a Guy Issue”

A New Era of PSAs

CHS has been working with at-risk youth from YAP for a couple of years. What’s novel about their work is in the production process. They collectively produce online PSAs that address issues relevant to the participants. Kenny Shults, president of CHS, explained in an email that over a period of a few month, participants would run through a series of group exercises all geared towards thinking critically about a social issue (such as HIV stigma) and develop an effective script. “We then spend about a month working together to complete all of the pre-production activities such as casting, props, locations, etc. and fine tuning the script. Then everyone shows up to the shoot (1 day per PSA) to make a movie. It is an incredibly fun, interactive, educational, and inspiring process,” Kenny explains.

What results is a number of original and thought-provoking messages. The PSAs presented here were made by HIV positive young adults from YAP. The first video conveys the message that people living with HIV can give birth to and raise healthy children, have a healthy family and lead fulfilling lives. Kenny highlights this video in particular, stating:

…a number of the youth who made the “Happily Ever After” campaign are now taking their meds after making this piece. One young woman says: “Every time I take my pill in the morning I picture Emma’s face” (Emma is the name of the actress in that PSA). We couldn’t have asked for a better outcome.

This is precisely the point. The significance of the workshops is not the glossy quality of the final product; rather, it is the process which matters most. Making a short film by and for the very population it represents, and finding a collective voice together cultivates a transformative power from within. Participants complete the PSA with a critical, self-reflective understanding of the issue and the social structures and institutions that influence such an issue. In effect, the participants’ attitudes have positively shifted.

The second PSA, “One Condition”, tackles HIV stigma by asking the audience “What would you do?” in the situation of HIV disclosure. It’s an important PSA because not nearly enough people understand that HIV is a manageable disease. Advancements in treatment mean that risks of transmission have changed dramatically, and so too must people’s attitudes and fears.

For more about the workshop process and theories that underpins their approach, read the company’s statement and Kenny Shult’s article at The Good Man Project.

What do you think of these PSAs? Do you feel they successfully address a lack in public discourse about living with HIV? What messages would you like to see more of?

An effective condom message

I end with this last video about the importance of safer sex. Unlike the PSAs of the 1990s, this video addresses real obstacles (like embarrassment of buying condoms) and conveys real choices. It offers an alternative ending to another video about condom use and brings light to the forgotten option of female condoms. We follow a guy throughout the day as he prepares for a date, yet at each point that a condom presents itself he is too embarrassed or uncomfortable to pick one up. When the moment comes he is unprepared. Lucky for him, condom use isn’t just a guy’s responsibility.

To view more videos campaigns made with CHS by teens, LGBTQ folk, high school bullies and more, check out the My Media Life playlist by CHS.

How I Met Wanda

Upon yet another relationship break-up due to disclosing her HIV status, Virgina meets Wanda.

I was dating a guy for a short while and it was the same old story. He was head over heels until I disclosed my HIV status. He insisted it was not a problem but every day he became more distant and expressed many fears including death, dying, illness and whether I had someone in mind to care for me on my AIDS death bed. Nothing I said reassured him or removed his basic fear. About a month into the new relationship I decided to do us both a favour and call it quits and he was relieved. I saved him the trouble of looking like the bad guy in walking away from fear of HIV.

As we were walking towards my house during the break up we passed a sex shop. I watched an episode of Sex and the City where the women used a great vibrator- the Hitachi Magic Wand – and the best part of the vibrator was, it was electric. No more drawers full of batteries. After watching that particular episode I really wanted one but, being the pathologically shy person I am, it was impossible for me to go into a sex shop and buy one. So for years I walked by and only thought about it.

Sam Jones' and the "neck messager"

Sam Jones and the “neck messager”

Suddenly I turned to him, handed him $100.00 and asked him to go into the sex shop and buy my vibrator. When he came out I said good bye and never saw him again. But I am now the proud owner of Wanda and let me tell you, she is every woman’s dream. Sometimes there is a silver lining in a cloud.


Protest Unjust HIV Prosecution! July 8th

On July 8th a woman is put on trial for aggravated assault (one of the most serious offenses in the criminal code) because she did not disclose her HIV status to her sex partner. In Canada, people living with HIV are legally required to disclose their status to their partner before having “sex” that involves “significant risk” of transmitting the virus (Canadian HIV/AIDS Legal Network). However, the law has prosecuted numerous cases in which sex posed no significant risk of HIV transmission, including the July 8th “JM” trial. Justice is being mismanaged.

The law has not kept up with scientific advancements and understanding about risks of HIV transmission. Courts do not routinely considered important information about exposure such as whether the person was taking antiretroviral treatment, what the person’s viral levels were at the time, whether protective barriers were used, and what sexual act occurred, as some involve less risk than others.

Support JM & Protest on July 8

According to activists at AIDS ACTION NOW, the charges of “JM’s” case refer to “oral sex with an undetectable viral load” and despite the extremely low risk (almost zero percent) the court “is refusing to drop the oral sex charges”. She is also being charged for allegedly engaging in unprotected vaginal sex. However, her viral load was “undetectable at the time and she claims a condom was used”. Read the full statement by AIDS ACTION NOW.

There will be a protest against unjust prosecution of people living with HIV at the courthouse in Barrie, Ontario at 13:00 on July 8th. For more info visit the event Facebook page or contact aidsactionnowtoronto@gmail.com.

Image from documentary film, Positive Women, Executive Producer Canadian HIV/AIDS Legal Network. Available to watch online.

Image from documentary film, Positive Women. Directed by Alison Duke; Executive Producer Canadian HIV/AIDS Legal Network. Available to watch online.

Want to learn more?

The issue of HIV disclosure is so complex and poisoned by stigma. One can live a happy, sexual life living with HIV. Yet this is seldom represented or discussed in public discourse. More stories need to be shared about peoples’ experiences with disclosure and being prosecuted.

We’ve launched a series of monologues about different experiences with HIV disclosure and safe sex, such as Virgina’s letter to her sex dam. Our interview with folks at the HIV Disclosure Project (Why Not Have Sex With Someone Living W/ HIV?) describes how people who disclose their status put themselves against enormous risks including risk of verbal and physical abuse, risk of rejection and isolation, risk of discrimination by being “outed”, and violations of basic human rights.

There is an important 45 minute documentary, Positive Women, which is free to watch. The film explores how the law of HIV non-disclosure actually fails to protect women and reinforces discrimination against people living with HIV.

For more information about HIV disclosure and criminalization visit Canadian HIV/AIDS Legal Network.

Why Not Have Sex With Someone Living With HIV?

 “Positive Sex ideally would involve disclosure being met with acceptance and understanding, not rejection and stigma. Positive Sex would involve the elimination of terminology that is discriminatory on the dating scene and a shift within the public whereby people would consider dating a person living with HIV, without fear or stigma.”- Gail from the HIV Disclosure Project.

The HIV/AIDS pandemic of the 1980s led to a surge of condom campaigns. Now when we hear the term “safe sex” we immediately associate it with male condoms, the Pill, unwanted pregnancy, STIs. HIV transmission is discussed in sex education, but what’s neglected are the specifics about HIV as it is today: how it is manageable, what “undetectable” means, why terms like “clean” are harmful, what the hell is PReP (Pre Exposure) and PEP (Post Exposure Prophylaxis). And we certainly never discuss the possibility of having a healthy sexual relationship with a person living with HIV.

The reason is because, frankly, there is still fear associated with the virus. People like Gail, Jessica and Jolene, founders of the HIV Disclosure Project, know that HIV stigma persists just as it did 30 years ago. It permeates our fears of “death, dying, contracting the virus through protected sex, casual contact, fear of dating a person who is living with HIV as others may think they are positive as well (guilty by association). Fear that people living with HIV are highly contagious”, Gail describes in our interview. “Many people know the facts about transmission and yet are afraid that there might be some “unusual” accident which will lead to infection.”

The Stigma Cycle

Safe sex messages have traditionally been built on fear and as a result, the campaigns have failed miserably; from that fear is born stigmatization and prejudice against people who are HIV-positive. People who choose to disclose their status risk being verbally and physically abused, risk rejection and isolation, risk discrimination by being “outed” (loss of control over who knows their status), risk discrimination in the workplace, schools, with housing, health care and violations of basic human rights. People are deterred from getting tested and treated regularly; it results in silence about one’s status; thus the virus continues to be transmitted. “It’s what we refer to as the Stigma Cycle,” Gail explains.

To fight the stigma born out of fear, the HIV Disclosure Project facilitates open discussions about how to make the dating scene more inclusive of people living with HIV. “We provide a safe, non-judgmental space for people living with HIV to role play, practice a variety of techniques for disclosing if they choose to, while aiming to empower individuals to have options, externalize stigma and challenge public perception of people living with HIV. We want to have PSAs (public service announcements) that ask the question – Why not have sex with someone who is living with HIV?”

HIV DisclosureThe HIV Disclosure Project

The idea for the Project started with three colleagues- Gail, Jessica and Jolene -who saw a need for a supportive workshop where people living with HIV could “discuss, disclose, practice disclosure, find comfortable and timely ways to gauge when to disclose or not, and to process feelings that derived from stigma and rejection,” Gail says.

“People living with HIV also needed a space where they could challenge and change dating terminology which perpetuated stigma and fear of HIV, including terms such as “clean”, “disease free” and “dirty”. New terminology was needed to describe one’s status that excluded negative connotations and included acceptance, tolerance, and a willingness to consider dating a person who is living with HIV.”

At the time, there were no written manuals on disclosing HIV to sex partners. Granted funding from ACCM (AIDS Community Care Montreal), the three colleagues wrote a manual titled “Positive Sex” and designed a pilot workshop that resulted in much success. The Disclosure Project received further funding from the CIHR (Canadian Institute on Health Research) through CTAC (Canadian Treatment Access Council) where Jolene works as Program Manager. Workshops are now being implemented across Canada in collaboration with ACCM. Jessica facilitates these workshops.

I asked Gail how we might de-stigmatize sexual relationships for people living with HIV. The answer might seem controversial but it reflects upon the fear tactics that are often utilized in government supported sex ed programs and why we need to adopt Positive Sex frameworks in public health.

“What needs to be reinforced in the mainstream are the basic facts about HIV transmission and repeated public service announcements and education which tells the public that it is socially acceptable to have safe sex with a person living with HIV, that having sex with a person living with HIV does not mean they are going to contract HIV. There are many sero- discordant couples who have been in long term relationships where the HIV negative person remained negative.”

“Positive Sex” is the new “Safe Sex”

Image from http://www.ctac.ca/positive-sex

Image from http://www.ctac.ca/positive-sex

Gail, Jessica and Jolene bring up an important point about the meaning of “safety” that is taught in sex education. What’s often overlooked are issues of emotional safety, such as consent and self-esteem, that are both cause and effect of sex. Few curricula teach consent or communication in a way that is relevant to sexual diversity. Instead, outdated sex education shames discussions of sexual pleasure and desire, and the different types of relationships humans are a part. The Disclosure Project views this type of shaming in opposition to what is positive sex.

As Gail explains, “Positive sex to us means finding ways to successfully disclose one’s HIV status while not feeling threatened, stigmatized or experiencing any negative reactions while disclosing. Positive Sex also involves challenging and changing public perceptions of people living with HIV. In the past, safe sex campaigns were based on fear and as a result, thirty years into the pandemic, there are many misconceptions that perpetuate fear and stigma which need to be challenged.”

“Positive Sex ideally would involve disclosure being met with acceptance and understanding, not rejection and stigma. Positive Sex would involve the elimination of terminology that is discriminatory on the dating scene and a shift within the public whereby people would consider dating a person living with HIV, without fear or stigma.”

To learn more about The HIV Disclosure Project follow them on twitter @sexpartnersHIV. Like their Facebook Page for daily prose, thoughts and poems related to HIV and disclosure.

For information on HIV transmission, prevention, safety and risks refer to ACCM and CTAC.  There are a lot of them, but other helpful resource are: CareXO.com, the YAHAnet (Youth, the Arts, HIV & AIDS Network) and The Life Foundation. There is also an excellent article by The Body.com with medical information about the risks HIV transmission when having sex with someone who has undetectable viral levels.  Keep yourself informed!

Willful Ignorance of HIV Alienates 4 Year Old from Pre School

abacusIt is startling that in 2012 it’s possible to ignite hysteria and spread ignorance about risks of transmitting HIV in public places.  A daycare in Northland, New Zealand has removed a four year old boy from their Center because he is HIV positive.  According to the NZ Herald, just 48 hours after the mother told the daycare that her son is HIV positive the Center prevented the child from returning until they establish a care plan.

However, the NZ AIDS Foundation and senior health officials have stated that there is no need for a “care plan” because the level of the virus in the child’s blood is so low it undetectable and cannot be transmitted, NZ Hearald reports.  Nonetheless, the Center has responded by sending letters to all the parents that their children have been exposed to HIV, resulting in hysteria across some communities. TV 3NEWs Campbell Live reports that now parents at a school attended by the child’s older siblings are “raising fears about contamination even though the siblings don’t have HIV!”

Campbell Live confirmed on 9 May that neither the Ministry of Education or senior health officials have been able to persuade the daycare that there is no risk to any of the children or staff as a result of contact with the infected child.  In an interview with the NZ AIDS Foundation executive director, Shaun Robinson explained that professionals with the AIDS Foundation and the child’s doctors have attempted to meet with the daycare and explained that there is no risk.  “[The center has] been very well informed…[but have] chosen instead to act completely irresponsibly…It’s a case of willful ignorance – not just gross ignorance but willful ignorance – which is leading adults to essentially bully and pick on a 4-year-old boy.”

The Day Care has now taken legal action against the NZ AIDS Foundation over allegations of expelling the child from the Center.  Meanwhile, the boy has been accepted into another Day Care and will commence education in July 2012.

Whether allegations of expulsion are true or false, the point is that the community responded in fear and exclusion of the boy and his family.  In responds to this story of ignorance and discrimination, we’ve complied facts about HIV/AIDS transmission that any parent and child care professional should know.  Knowledge is power.  If everyone understood these basic facts there should be no alarm.

BASIC FACTS: Caring for Children with HIV/AIDS

How is the virus transmitted?  1) Congenital and perinatal transmission is the most common way children are infected.  This is when HIV is transmitted  from the infected mother to her child during pregnancy, labor, or delivery (Child Care Law Center, 2005: 3).  According to the CDC, transmission rates have dropped due in part by HIV testing of pregnant women, antiretroviral drugs, and cesarean delivery before the onset of labor.  However, perinatal exposure still occurs.

2) Blood transfusions have infected children.  According to the American Red Cross, today the risk of receiving HIV positive blood through a blood transfusion is about 1 in 2,000,000.

3) HIV can only be transmitted through certain bodily fluids (blood and semen).  HIV cannot be transmitted from saliva, nasal mucus, tears, urine, feces, sweat, vomit or breast milk.  In the child care setting, blood is the main type of bodily fluid which requires standard and universal precautions.

4) There are no reported cases of HIV transmission through daily household contact, like food preparation, eating, hugging, kissing, sharing toys, diapering.  Even biting has never resulted in HIV transmission.

A child with HIV or AIDS poses virtually no risk to the health of other children or adults, especially when standard precautions are taken on a regular basis with all children.  Without taking these simple routine precautions, children are far more likely to contract blood-borne or fecal-borne diseases like hepatitis B and hepatitis C, pinworms, giardia, and common diarrhea than HIV (Child Care Law Center, 2005: 4).

Read the Child Care Law Center pdf for further information about universal infection control measures, child care legal responsibilities to admit and care for a child with HIV/AIDS and issues of confidentiality regarding the child’s status.  The Center for Disease Control and Prevention‘s website has extensive pediatric information on HIV/AIDS.

Image credit: OneTwo