by Prof Ynesse…

This social distancing is bringing back memories of when I moved to Downstate NY during another epidemic, HIV/AIDS. I’m thinking about the labeling and stigma associated with novel viruses.

I moved to Brooklyn from Haiti at the impressionable age of 13, during the HIV/AIDS epidemic. This was a confusing time for me, for many reasons. In the Haitian community, we had heard of a new disease called katach which I later learned was 4H (Quatre H, in French). The “the 4H disease” label was coined by the CDC for the novel virus that seemed prevalent among heroin users, homosexuals, hemophiliacs, and Haitians. This was a whole new version of racism I was unprepared for.

This labeling resulted in unprecedented national discrimination and stigma to anyone who belonged to these four groups. As I started high school, many Haitian students experienced bullying and physical assaults just for being Haitians. 

Years later, I started working as a nurse at an HIV/AIDS unit in a Staten Island short-term rehabilitation unit, which was a fancy name for hospice care. Most of my patients were coming out of Rikers Island Prison, because they had developed full-blown AIDS and were eligible for medical parole. In fact, they came to our institution to die. In my first six months working the night shift there, I witnessed 60 deaths.  HIV/AIDS was at that time a terminal illness before the introduction of antiretroviral therapy (ART).  

Sometimes my ethnicity/nationality and HIV were seen as almost synonymous. This “4H disease” label continued to haunt me. One example was when one of my new patients noticed my heavy accent and asked me where I was from and I told him Haiti. One night, he became agitated and refused his prescribed sleeping medication and he started screaming at me, “go back to your country…” and he mumbled something about AIDS and Haiti. I couldn’t make out exactly what he said, but I also did not want to know. I was gutted. 

Hearing president Trump defying public health experts and scientists by calling COVID-19 the “Chinese virus” is dangerous, but not unprecedented. This country, historically, during national crises, uses stigma as a tool of power and to otherize those deemed different, dirty, and backwards. Unfortunately, these practices have lingering insidious effects on those impacted. I know our Asian-Americans, specifically Chinese-Americans, have started experiencing what some groups experienced during the HIV/AIDS epidemic, a type of racialized stigma. I hope that we heed these historical facts and learn from them. Let’s stop the Stigma!!!

4 Replies to “Stop the Stigma! Remembering HIV/AIDS

  1. An eye opener indeed!
    I am impressed by your story and your shedding light on “another elephant in the room “.
    This message should in my opinion be taught in every school and college curriculum .
    Sending you love ;enjoyed seeing your picture as you grew up to be this amazing “doctor Ynesse.”
    I only have admiration and love for all people that made it after those dark times in our history and went on to serve society in any shape or form!

  2. Thank you for sharing this, Professor Ynesse! It is so important to shed light on powerful stories like your own, especially during these times. Dealing with this virus may be unprecedented in some ways, but the racialized stigma which has seemed to come with it is certainly nothing new. I hope that by sharing your story people may recognize this.

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