June #155 : Imperfect Attendance - by Shari Margolese

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June 2009

Imperfect Attendance

by Shari Margolese

Shari Margolese struggles with her son’s decision not to disclose his HIV status at his new school.

Ring, ring. “Hello, Ms. Margolese? This is your son’s English teacher calling. He has missed quite a few classes during the past term, and he is at risk of failing.” Ring, ring. “Hello, Ms. Margolese? This is your son’s biology teacher calling.” Ring, ring.

My son missed plenty of school this year, and his teachers are looking for an explanation. Unfortunately, I can’t tell the school what ails him. My son is adamant that his teachers not be told that he is HIV positive—and I agree. But I’m also concerned that he not flunk out.

While on a failing treatment regimen last year, my son picked up quite a collection of viruses and bacteria, making him unusually sick. He is now on a new treatment, but his body is taking some time to adjust. Many mornings are greeted with nausea, vomiting and diarrhea. This will pass, but until it does, it makes it difficult to get to school on time.

So why don’t I just tell the high school he is positive? When he was in grade school, I decided to tell his teachers. I did so not because I felt pressure to succumb to unfounded beliefs that schools have “a right” to know to “protect” other children (a.k.a., to cover their own asses), but rather out of necessity. My son took meds three times a day, which left me two options: I could either administer the meds myself each day or tell the principal. I decided to disclose. I admit that my need to push the envelope in hopes of reducing stigma for ourselves and others entered into the equation as well.

Disclosure started as a positive experience. The principal was knowledgeable about HIV and completely understood my desire to keep this information between us. She gained my trust. The year was a huge success; there was never a hint of discrimination against either of us.

But in first grade all hell broke loose. The fabulously compassionate principal left the school for mission work in Africa. I agreed she could tell the incoming principal about my son. When I met with the new principal to discuss my son’s “special needs,” it turned out to be a discussion about her special needs, which included holding a town hall–style meeting so that the school staff was aware of my son’s infection and was “prepared for the worst.” I calmly explained this was not necessary and that I did not consent. I left her with a list of experts to consult and thought we understood each other.

Throughout the year, notes were sent home every time my son had so much as a hangnail. The optimist in me wrote this off as standard procedure. My optimism faded midyear when it was my turn to dole out pizza to students. As parents gathered in the lunch room to fulfill their monthly Pizza Day volunteer duty, the principal informed us that, “From today forward we will be using latex gloves to serve pizza.” I was certain it was no coincidence that the new regulations started on the day I first volunteered.

Things went downhill from there, including a bloodless school yard incident between my son and another boy that resulted in the health authorities telling the other child’s parents that their 6-year-old had been in contact with someone who was HIV positive and should seek immediate medical attention. Our cover was blown. I made a human rights claim, which was denied, and we moved out of the school district to avoid any further disclosure.

Attendance is often the secret to success in school. On the one hand, I want to drag my son out of bed and tell him, “You can’t use HIV as an excuse not to meet your obligations.” But on the other hand, being HIV positive, I know just how he feels.


Search: Shari Margolese, disclosure, school, HIV status

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