Spreading Ignorance With Authority *SMDH*

Last night, as I was busy taking care of my sick baby, I got a tweet that made me want to cuss. At the time, however, my baby girl was the focus. No sooner than I dismissed it from my mind, my girl Dwana, responded to the woman and set her straight in her kind, gentle way. The woman should count her blessings that the first response was from Dwana and not me.

This is what happened: Dwana tweeted about the GiveForward Life Fund she organized on my behalf. Then someone tweeted to me, and Dwana, that HIV/AIDS has practically been eradicated. My gut reaction was a curse deep within but I let the moment pass and this morning I tweeted in response to her misinformation and I didn't curse!

But, I wonder how many people share this woman's view. I wonder, how many people really think that HIV is no longer a big deal. I wonder how that affects behavior and if that is a factor in the continued new infections globally. People think either, they won't get it or if they do all they have to do is pop a pill.

Setting this thought aside for the moment, the thing that really left me puzzled about this woman's tweet is that her Twitter profile says that she is an advocate for Autism; her son is Autistic. This is a woman who deals with health challenges everyday. So why would she dismiss someone else's pain and write their illness off to simple pharmaceutical companies profit? I wondered what portions of the medical community benefits from her son's condition and how she would feel to be dismissed as simply a profit. I've never been one to dismiss someone else's journey. Pain is pain no matter how different the pain may be. Then I wondered did she even click on the link that Dwana tweeted about me and the GiveForward Fund or did she just casually tweet Dwana.

I wondered if she had read about me and my work if she would have had a different opinion ... or maybe she did read about me and still had the same narrow opinion.

Then I wondered who on her timeline agreed with her tweet. I've learned that like-minded people tend to follow each other on Twitter. As the saying goes, 'birds of a feather flock together'. I don't know this woman but I know that she is ignorant to the facts of HIV/AIDS. Maybe she spends so much time dealing with her son's health, she doesn't have time to read. But you would think that if a person really doesn't know what they are talking about they would keep their damn mouth closed.

I utterly dislike people who spread ignorance with authority. The fact of the matter is, every 10 minutes a person becomes infected with HIV in the United States. The fact is, CDC estimates 47, 500 new cases of HIV in the United Sates in 2010. The fact is, each person living with HIV has their own health struggles with this disease. While there are similarities, there are also extreme differences. For example, some people take one pill a day, others like me, take 15 pills a day. The fact is, 15, 500 people died in the United States from AIDS in 2010 and CDC estimates 635, 000 have died since the beginning of the pandemic. Worldwide there were 2.5 million new cases of HIV in 2011 with about 17 million deaths in 2011 and an estimated 34 million living world wide.

The fact is, in addition to the health issues that come with HIV, people living with HIV have to deal with the shame, isolation, stigma and discrimination; I will never forget being denied that tattoo 7 years ago because I have HIV. We have to deal with fear of rejection and yes, actual rejection - not just the fear of it, and we have to live with being dismissed by people like Ren Cook every day of our lives.

Finally, I think people living with any health condition deserve to be loved and validated rather than dismissed simply as a payday for pharmaceutical companies. I think the world would be a better place if we validated people's pain with the love of God and help to make life better for them, rather then dismiss or judge them. #justsayin


Post Script: There are 15 more hours to donate to my GiveForward Life Fund. The fund will end at 12:00 Midnight today. Again, I receive all the funds less 7% in 5 days. 5% goes to the GiveForward for operations and 2% goes to credit card fees. Again, thanks to everyone who has donated so far. I'm touched by your sacrifice - but your comments have made my life sacrifice even more meaningful. Thanks for sharing... Click Here to Donate!

Prima Donna No More: Facing HIV Discrimination

It felt like he had just slapped me in the face. His words hit harder than my Mama’s worst beating. I stood there frozen with this blank stare on my face. Awkward silence filled the air. He spoke again and it snapped me back to the reality of it all. “Uh, let me go double check with the tattoo artist,” he said nervously. “OK,” slowly came out of my mouth.

 As he walked away, I began reading the consent form that he had set in front of me. When I reached number three on the form, my eyes were glued to that spot. I read it over and over and over. It did say what I thought it said: “I agree that I do not have HIV.” “But I do have HIV,” I whispered to myself. 

The guy behind the counter who was waiting on me returned and snapped me out of it yet again. “Yes miss, the tattoo artist said NO. We don’t tattoo people with HIV.” He gave me back my driver’s license, picked up the consent form and gave me this silly “I’m sorry,” he said, "I’ll shred this.” Clearly this guy had no idea who I was and frankly at that moment the rule was the rule. We DON'T tattoo people with HIV.  Rae Lewis-Thornton and all I have HIV so a name meant nothing to him at that moment. 

I turned to my friends Deidre and Jason looking like I had been crushed. I could see by the expression on their faces that they had overheard the conversation. Shame swept over me, but I whispered to them anyway, “He told me that I couldn't get the tattoo because I have HIV.”

We walked out in silence and Deidre gave me a tight hug and whispered, “I’m sorry.” Jason and I got in the car and I drove in silence. After about 5 minutes I said “J, that’s weird. I went into the tattoo parlor on 12th Street and they told me that they do tattoo people with HIV all the time.” Jason felt helpless he could see my pain, but he just didn't know and he said so. 

My mind starting racing and silence filled the air yet again. In that five minutes of silence,  Shame, Confusion, Disappointment, and then Anger built up inside of me; but Anger pushed the others to the side.

“J,” I broke the silence again, “I think they just discriminated against me.” He said hesitantly, “You’d know better than me.” Then he suggested, “Let’s call some other places and see if you can get it somewhere else. "To hell with them!" He added. That was a good idea, so we both started calling other tattoo places and asked, If a person has HIV could they get a tattoo? After calling three tattoo parlors we received the same answer, “Yes, come on in.”

Driving down Chicago's Lake Shore Drive, I became a MAD BLACK WOMAN. All of my political fight came over me. I had not lived this long with HIV to get kicked in the gut. And to think I picked this African-American owned Tattoo Polar just to patronize them. Deidre had been talking about the good work that had done on a piecing for her, so I decided to give them a try.

I felt this uneasiness inside of me and I needed to know the truth. Had they broken the law or where they just some discriminating ass-wholes? 

I called information and got the telephone number to the AIDS Legal Counsel. I told the receptionist what happened. I was then connected to a lawyer. After I described the incident, she confirmed that I had indeed been discriminated against. They had violated the Americans with Disabilities Act, Chicago Human Rights Ordinances, as well as the State of Illinois Human Rights Act.

She then asked my name. “Rae Lewis-Thornton,” I mumbled. “Excuse me?" She hollered with excitement.  "Rae Lewis-Thornton the AIDS activist?” “Yes, that would be me,” I mumbled.

“WOW!” Ann Hilton Fisher exclaimed, “You have got to file a complaint! We need you on this one.” “Are you kidding me?” I thought. She had just hit me with a curve ball that I was not ready for. She could sense my hesitation. Ann started talking again, “You know Rae, you have been a prima donna with AIDS. Everyone likes you because you are on TV and the cover of magazines. Welcome to the real world.”

This was the real world. The new discrimination is covert, small things that people take for granted every day. Like getting a tattoo or having a massage. I understood what she was saying, but it was a lot to think about. Getting that tattoo was something very personal. I didn't really want anyone to know, now I was being asked to go public. I went home and curled up on the sofa and cried until I couldn't cry anymore. It was all too overwhelming.

By 11:00 that night my head was pounding from crying and my spirit had taken a beating. I had to Man Up and face a realization that day. Being on the cover of a magazine and having an Emmy Award couldn't change the fact that I have been discriminated against, just like many other people living with HIV/AIDS.

This is still a reality in the 21st century. It was my reality just a few years ago. But somewhere between mourning the prima donna, and wallowing in self pity, super woman kicked in. I picked up the phone and called Jason, “Hey, let’s go to Jade Dragon.” “Tonight?” he asked? “Yes, tonight! I am not going to let them win. We made our we to the other tattoo parlor and Jason held my hand. Midway, the pain was so great I wanted to quit, but now I needed to prove a point.

The next morning me and my sore backside made it to AIDS Legal Council and began the process of filling a complain. They had messed with the wrong person. I was mad as hell!   When I walked out of the law office that afternoon I was so proud of myself and I wanted to tell all my friends. As the day went on, my bubble started to burst. So it seemed that many of my friends thought I was in the wrong to file the complain. "Well Rae, blood is present when you get a tattoo," was all  that I heard, all day long.

I started to feel isolated....

To Be Continued :)

AIDS: No Joking Matter

Two days after the #RLTEvent I was chatting in the hall with a guy in my building who I thought knew that I had AIDS, but he didn’t. When I mentioned it in passing he paused and slowly said, “Oh, I didn't know you had AIDS.” I took a deep breath waiting. I had no idea where he would go next. Then he said all lively, “But it don’t bother me none.” I exhaled, “What a relief,” I thought. I was way too tired to go there with him. But then he looked me dead in the face and added, “Just don’t spit in my eyes.”

My heart sank right to the floor of my hallway, I couldn't even get mad. I felt empathy for this very uneducated man. “Really, in this day in age, you still think a person can get HIV through saliva,” is what I wanted to say. But that would have been futile because I knew that he was being sincere and he believed himself to have demonstrated his acceptance of my HIV status. I just simply explained how his information was incorrect and he listened attentively. When I finished, he simply said, “WOW, I had no idea.” Grandmama used to say, “You can get more with sugar than with shit.” I believe that to have been the case here. But it didn't make me feel any better. And this feeling in the pit of my stomach only got worse.

About 30 minutes later, one of my best friends called and finished telling me what he was trying to tell me a few weeks prior but I was too busy working on #RTLEvent to pay attention. He had seen a tweet about Michael Jackson and since he loves Janet, he followed the trail, it being the one year anniversary of her brother’s death. The tweet led him to a blog that gave 10 reasons why you should love Michael Jackson. They were cute, no doubt, but on a closer read, scrolled across Michael's picture, there was something of a different sort, and his point of contention. Knowing the blogger, without even hearing it, I loosely defined her by saying, “Her blog is meant to be funny and full of satire.” But he failed to see the humor and when he told me, and neither did I. It said:

“(Michael) Eats KFC fried chicken buckets with Magic Johnson and remains AIDS free.”

My mouth dropped open. I couldn’t believe it, but that is exactly what it said. I played it over and over in my head trying to understand it’s intent. But I failed to see the humor in it all. Even though I was outraged, saddened and even hurt, I was also paralyzed, unable to respond in any fashion. I have been holding this blog in the pit of my stomach for a couple of weeks. I didn't want to have to defend what I was feeling nor did I want to be attacked. I’ve never really backed down from a fight, but this was more then a fight, this was personal and it reached deep in my heart. I had to believe that no malice was intended.

But, it reminded me of when Ted Danson wore a minstrel face to roast Whoppie Goldberg at the Fliers Club. African-Americans didn’t see the humor in it one bit, even though they were dating. No matter how hard Whoopie defended his intent, the act in and of itself rendered a bitter taste. Although I had that same bitter taste about this, I held onto to it until I saw another tweet last night.

International AIDS Activist Hydeia Broadbent, a woman living with AIDS her entire life, tweeted:

“Watch the jokes about HIV/AIDS you never know one of your friends might be living with and not telling anyone for fear of judgment!”  

She had struck a cord with me and given me my power back. Thank you, Hydeia.

Yes, I tried to make sense out of it all. I know that this blogger knows that you cannot get HIV from eating with someone. On one level, saying that it didn't happen was implying that it could happen. On the other, saying that it didn't happen could also say it couldn't happen. I get it. But I wonder how people will view this glass, half full or half empty. I would argue that it depends on the knowledge you already have. My neighbor would have said, “Boy, was he lucky.”

But, the implications are far greater than how one interprets it. The bottom line for me: There are some things that should not be laughed at and HIV/AIDS is one of them. I cannot see the goodness in such a statement wrapped in vulgarity as a positive. No matter how hard I tried. The shame of living with AIDS is still real in this country. Stereotypes and myths surrounding this disease are a reality. Discrimination is ForReal... And that’s no laughing matter and all the satire in the world will never change that fact. My neighbor is a case in point. He honestly didn't know what he didn’t know. And he was confident in what he thought he knew.

Discrimination has been real in my own life. It was only a few years back that I was denied a tattoo in an African-American owned tattoo parlor because of my HIV status. And the owner was just like my neighbor, he thought his discrimination of my rights was justified, rooted in what he thought he knew. Despite the standard protocol all tattoo parlors are required by law to follow. Then last week, I spoke at the Danny Clark Foundation and when I said that I had AIDS, a young man in the second row pulled his seat all the way back away from me. I was sad that he didn’t know he couldn't get HIV from me just by being close, but I also was sad for myself, that a person would reject me simply because of my HIV status. I wonder what would this young man have said had he read the comment about Magic.

This is the reality that people with AIDS live with everyday. Not only from strangers, but they live in fear of rejection from their own family members. I've even been to a funeral in recent times where a mother held on to the secret of her child's HIV status because of the shame and stigma of AIDS. Her child’s HIV/AIDS status was buried right along with the body.

And let's not forget Magic Johnson, no matter what people may think of him. He is living with HIV every single day, and that is no joking matter. I wonder about the isolation and rejection he must have felt after disclosing his HIV status. The discrimination was so pervasive that he was forced to retire because teammates and fellow NBAers didn't want to play on the same court with him. He watched his career go down the drain because of ignorance. This is Magic’s reality and all the money in the world will never change that fact. It is also my reality and the reality of many others living with this disease and I fail to see the humor in it all.