Deana is a 20-year survivor of HIV who says, “I am not my stigma.”
Quiet Talk… I think that the word “HIV” is always whispered. It’s the most whispered word, even in the clinic. It is like, “We got HIV (in whisper), What? HIV.” It’s so hard to even say the word. People still whisper it everywhere. Even my family will whisper it because they don’t want anyone else to hear. It’s so shameful and judgmental and stigmatized that it’s a bad word. If we can’t openly talk about it how are we ever going to get out of the stigma? I mean honestly, because it is whispered. Such a quiet word.
Be the Change… To me it can start anywhere, so be the change. Be the change. Be the person that can say the word “HIV.” Be the person that is not going to let the stigma take you down, and just be the change. Educate people. Bring the stigma out. I feel like I should educate people because a lot of people don’t think about HIV. Many people don’t educate themselves until they are in the situation or you know somebody in the situation.
Secret Gloves… This is a true story. This is something that really happened to me when I was first diagnosed. I worked for a school district. Everybody wanted my gloves (not these exactly but they looked like these).
And the boss would say, “You cannot use those gloves. Those are Deana’s and they cost more money.” They were like, “Well why does she get these gloves and we don’t? We’ve got use these cheap plastic ones.” It was the secret glove. Human Resources found out I had HIV and then I had to go to a special board meeting to save my job. And they decided I could keep it, if I wore these gloves. I had to take all of these courses, things I already knew, If I cut myself I had to throw everything away, etc.
With HIV you are pissed on or pissed off… I’ve never had somebody just say, “Okay, and what?” When you tell somebody that you have HIV it’s like, “Uhhhhh.” You never get, “Okay, let’s move on with it. You’re positive, so what.”
We are tired of being judged by people who don’t really know what they are talking about.